It's been a long time coming...

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Post #90. Suck it, IBD. Still.

I haven't written a blog post since October. I don't really have a very good reason for it. Mostly, I'm sick of myself and my issues and have nothing new to say. I'm in pain daily. In multiple spots. Abdominal. Rectal from fissures and hopefully not more cuffitis. It has been concluded that all my abdominal pain is from adhesions(bands of scar tissue) from being opened up a bazillion times. They can go in and remove them, but guess what?! It creates the risk of MORE adhesions!!! Woooohoooooo. What an awesome catch 22.

So I starting seeing pain management last week. I can't even believe I need to deal with this. I got some injections on Monday. So there's that. Needles jabbed an inch and a half into my incision scars with the hopes that it'll help the widespread pain. I'm doubtful. My pain is not superficial. It's deep. This is not incision pain spreading out. It's a nice effort to start but screw that shit. I hate when I KNOW because it's MY BODY but my lack of a medical degree means I have no idea. So there's that. It's pretty fun.

My surgeon is not one to just cut. I respect him for that. And he specifically won't just go in for adhesions, but he has told me he may break his rule for me. Which is sweet in a weird surgical, chronically ill kinda way. I actually looked at him when he said it and said, "awwww, you would?". Being sick skews how completely whacked something is. Like what normal person would think someone offering to reopen you midline, was sweet? Uhhhh no one. That would sound like torture. But eh, just another day.

I've been having serious self esteem and motivation issues. I'm just sad that this is what is STILL happening. I went back and read some old blogs recently. Especially the ones immediately after my colectomy. I cried. The optimism in those words is long gone. It almost sounds ridiculous. I really thought this would be an easy peasy fix. JPouches are common enough. Colectomies happen all the time. People move on and live life and are active and happy. And then there's me. Still with this bullshit. My colectomy anniversary is 3 years next month. Seriously WTF. I always knew I'd never be normal but I never imagined I'd still be fighting the pain daily for this long. It's not fair.
I barely eat because it's not worth the pain to do so. My days are clouded from meds. I can't get out of bed. If I have a 9am appointment it is nearly impossible for me to make that happen.
I suck. I'm useless. That's how I feel. My entire existence has become completely inconvenient to everyone around me. For me to be "normal" and get dressed and go out and do things requires a level of will power I can't explain in words. And then that outing wipes me out for 2 days. And when I say outing I mean a day I go grocery shopping and lunch. Going to brunch. Hell, I went to the zoo Saturday and it's Wednesday and I'm still wiped out. And a raging sore throat and body aches have started which is letting me know I over did it. BY WALKING AROUND THE ZOO.
My immune system sucks. I've been over this shit for 2 years. Everyday I have a mantra in my head, "Just get through today". Isn't that the most pathetic thing you've ever heard?! Just get through life. Everyday. I don't know what I'm getting through it for because saying that usually means there's something better after you get through it. I don't feel that anymore. I don't feel that "It'll all be worth it" feeling. It sucks.
This is life with IBD. Real life. Not some stupid Crohns and Colitis foundation ad of people looking all healthy and "managing" their IBD. It's such bullshit. I can't manage a shower much less manage a "normal" daily life. THINKING about doing things exhausts me. So when you see me and I'm put together and dressed and my face is on and I'm smiling, just know how much effort I am putting in to not see my pain. When I'm out or on vacation, know how much it took for me to make that happen. Not eating the day before. A lot of meds. Giving up the next few days. It's hard but I've become a pro. I don't want to be but apparently this is what I have to work with. I'm just tired of doing it but I can't exactly quit. It's like being stuck with some soul sucking job you fucking hate and resent having to go to every single day including unpaid overtime and that's just your lot in life. Suck it Ulcerative Colitis. Just suck it.

I haven't written a blog post since October. I don't really have a very good reason for it. Mostly, I'm sick of myself and my issues and have nothing new to say. I'm in pain daily. In multiple spots. Abdominal. Rectal from fissures and hopefully not more cuffitis. It has been concluded that all my abdominal pain is from adhesions(bands of scar tissue) from being opened up a bazillion times. They can go in and remove them, but guess what?! It creates the risk of MORE adhesions!!! Woooohoooooo. What an awesome catch 22.

So I starting seeing pain management last week. I can't even believe I need to deal with this. I got some injections on Monday. So there's that. Needles jabbed an inch and a half into my incision scars with the hopes that it'll help the widespread pain. I'm doubtful. My pain is not superficial. It's deep. This is not incision pain spreading out. It's a nice effort to start but screw that shit. I hate when I KNOW because it's MY BODY but my lack of a medical degree means I have no idea. So there's that. It's pretty fun.

My surgeon is not one to just cut. I respect him for that. And he specifically won't just go in for adhesions, but he has told me he may break his rule for me. Which is sweet in a weird surgical, chronically ill kinda way. I actually looked at him when he said it and said, "awwww, you would?". Being sick skews how completely whacked something is. Like what normal person would think someone offering to reopen you midline, was sweet? Uhhhh no one. That would sound like torture. But eh, just another day.

I've been having serious self esteem and motivation issues. I'm just sad that this is what is STILL happening. I went back and read some old blogs recently. Especially the ones immediately after my colectomy. I cried. The optimism in those words is long gone. It almost sounds ridiculous. I really thought this would be an easy peasy fix. JPouches are common enough. Colectomies happen all the time. People move on and live life and are active and happy. And then there's me. Still with this bullshit. My colectomy anniversary is 3 years next month. Seriously WTF. I always knew I'd never be normal but I never imagined I'd still be fighting the pain daily for this long. It's not fair.
I barely eat because it's not worth the pain to do so. My days are clouded from meds. I can't get out of bed. If I have a 9am appointment it is nearly impossible for me to make that happen.
I suck. I'm useless. That's how I feel. My entire existence has become completely inconvenient to everyone around me. For me to be "normal" and get dressed and go out and do things requires a level of will power I can't explain in words. And then that outing wipes me out for 2 days. And when I say outing I mean a day I go grocery shopping and lunch. Going to brunch. Hell, I went to the zoo Saturday and it's Wednesday and I'm still wiped out. And a raging sore throat and body aches have started which is letting me know I over did it. BY WALKING AROUND THE ZOO.
My immune system sucks. I've been over this shit for 2 years. Everyday I have a mantra in my head, "Just get through today". Isn't that the most pathetic thing you've ever heard?! Just get through life. Everyday. I don't know what I'm getting through it for because saying that usually means there's something better after you get through it. I don't feel that anymore. I don't feel that "It'll all be worth it" feeling. It sucks.
This is life with IBD. Real life. Not some stupid Crohns and Colitis foundation ad of people looking all healthy and "managing" their IBD. It's such bullshit. I can't manage a shower much less manage a "normal" daily life. THINKING about doing things exhausts me. So when you see me and I'm put together and dressed and my face is on and I'm smiling, just know how much effort I am putting in to not see my pain. When I'm out or on vacation, know how much it took for me to make that happen. Not eating the day before. A lot of meds. Giving up the next few days. It's hard but I've become a pro. I don't want to be but apparently this is what I have to work with. I'm just tired of doing it but I can't exactly quit. It's like being stuck with some soul sucking job you fucking hate and resent having to go to every single day including unpaid overtime and that's just your lot in life. Suck it Ulcerative Colitis. Just suck it.

More Hurdles.

****** I started this entry about a week ago and just couldn't get my mind around it. There was a lot more to my hospital stay but I'm so mentally exhausted I can't recall details and all of it. I'm just too tired. So here's the gist of it anyway. ******


Hello all. I haven't written since my surgery on the 23rd. Recovery while in the hospital was brutal and since being home I just haven't had it in me. I'm hurting. I'm tired. Everything I do wipes me out for two days. My incision is hot pain. I'm sure the scar tissue adds to that. But I'll back the story up.
I went home to NY and ate like a pig the week before surgery and it was glorious. Pizza, Greek food, more pizza, chicken finger subs, oh my!! I had the best time with my cousins and seeing my Gram and a bunch of girls I miss a lot.
I came home Sunday and needed to be on liquids all day. I cheated and had breakfast Sunday morning b/c by now I know it was safe and I had time for it to be a nonissue. So let's just reference my meal at about 1130am Sunday.
My surgery was Monday morning. I arrived and got my IV and everything ready to go. All my Hossie flair and "fall risk" bracelet which is my personal fave.

Hospitals are cold. Yes, that's a scarf. I know it's summer.

Apparently they used some new pain blocking situation( the name escapes me) and has been shown to reduce use of opiates after surgery as it dulls/hinders pain receptors for 72 hours after surgery. If that's the case, I don't want to know what it would have felt like without it. I woke from surgery hurting and groggy. I had my PCA that allowed me to use it for a mini amount of Dilaudid every 8 minutes. It's such a low amount it's practically useless. Something like 1/100th of a milligram. I was allowed a push of .5mg of Dilaudid every 4 hours which would have been great except for lucky me, my blood pressure was way too low for them to give it to me. So for the most part I was suffering the first 3 days post Op. BP being 88/56 isn't gonna fly. Nope. So yeah. Just total shit. It didn't matter that my normal BP is like 90/70 on a good day. They wouldn't give me anything. So it wasn't until I was about 3-4 post OP when I finally got some relief. And they had me up and moving already. And was still nothing by mouth(NPO). Not even ice. Yeah. So fun. My first attempt at liquids with a bunch of Zofran was a disaster so that redid the clock in terms of me eating. The popsicle didn't make it and neither did the 3 tablespoons of broth. By then I was 5 days with nothing to eat. So I was pissed. And once again facing the possibility of an NG shoved down my nose and throat. Oh did I mention my hemoglobin level dropped to 7. Yeah that's transfusion level low. So all this was happening at once. IT NEVER GETS EASIER. Ever. NO matter how many times I've gone through this and am mentally prepared for starving for 4-5 days easily and then the pain of your guts working and/or NOT working, it is never easy. It is just horrible every time. Being attached to an IV pole and having no choice but to drop to the hospital floor and barf in the garbage can is insane. Because hospital floors #1 are so clean. I hit the call button and basically jumped. They raced in because they answered the call and I didn't respond.  #2 Meeting your next RN for the next 12 hours while face first in the trash is swell.
Luckily I didn't need a transfusion although I wouldn't have minded getting topped off because it makes me feel so great!
Finally-- 4 days after surgery I could handle liquids. Well, a sip here and there. GI surgery is just so brutal. Your guts don't have to work for months, the surgery shuts them down even more and then trying to get them to work again and not get sick is such a slow road. I've done it way too many times. So on day 5 post OP I got FULL liquids which is still slop but better than unidentifiable broth.
It's all just so exhausting. Being hungry and thirsty makes you nuts. I can't even remember how many times now I've gone 4,5,6 days with nothing to eat or drink. An ice chip here or there. It breaks you. It continually amazes me what I have gone through. I know I'm different now. I try hard not to let it happen but when so many days you have the shit end of a situation you get bitter. No matter how hard you try sometimes, it creeps in. You see things differently and react differently. You resent what you can't do normally anymore. You hate yourself. You feel betrayed by your own body. I have always lived my life in the moment. Ok, today I'm flaring. Ok right now I need surgery etc... but it's always been with a given idea that the funk will pass and things will be good again. After THIS surgery. AFTER this gets better. After 5 years of thinking things will be good after yet another issue, I don't know if I have IT anymore. I don't know how to explain it other than I've defeated myself. Kinda. I'm not done yet but I'm 3 weeks post Op and it's not like everything is perfect. I'm happier without the ostomy but I can't lie. I have moments where I definitely weigh the pros of having one. There are cons even with the best case scenario it would seem. Bummer.

But I'm pushing on. Dealing with being wiped out after doing something normal for a few hours. I have to. Being normal is costly. 1-2 days afterwards are useless. I'm a slug. I just need to get through THIS recovery and everything will be ok... right???

Thanks for reading. XO

****** I started this entry about a week ago and just couldn't get my mind around it. There was a lot more to my hospital stay but I'm so mentally exhausted I can't recall details and all of it. I'm just too tired. So here's the gist of it anyway. ******


Hello all. I haven't written since my surgery on the 23rd. Recovery while in the hospital was brutal and since being home I just haven't had it in me. I'm hurting. I'm tired. Everything I do wipes me out for two days. My incision is hot pain. I'm sure the scar tissue adds to that. But I'll back the story up.
I went home to NY and ate like a pig the week before surgery and it was glorious. Pizza, Greek food, more pizza, chicken finger subs, oh my!! I had the best time with my cousins and seeing my Gram and a bunch of girls I miss a lot.
I came home Sunday and needed to be on liquids all day. I cheated and had breakfast Sunday morning b/c by now I know it was safe and I had time for it to be a nonissue. So let's just reference my meal at about 1130am Sunday.
My surgery was Monday morning. I arrived and got my IV and everything ready to go. All my Hossie flair and "fall risk" bracelet which is my personal fave.

Hospitals are cold. Yes, that's a scarf. I know it's summer.

Apparently they used some new pain blocking situation( the name escapes me) and has been shown to reduce use of opiates after surgery as it dulls/hinders pain receptors for 72 hours after surgery. If that's the case, I don't want to know what it would have felt like without it. I woke from surgery hurting and groggy. I had my PCA that allowed me to use it for a mini amount of Dilaudid every 8 minutes. It's such a low amount it's practically useless. Something like 1/100th of a milligram. I was allowed a push of .5mg of Dilaudid every 4 hours which would have been great except for lucky me, my blood pressure was way too low for them to give it to me. So for the most part I was suffering the first 3 days post Op. BP being 88/56 isn't gonna fly. Nope. So yeah. Just total shit. It didn't matter that my normal BP is like 90/70 on a good day. They wouldn't give me anything. So it wasn't until I was about 3-4 post OP when I finally got some relief. And they had me up and moving already. And was still nothing by mouth(NPO). Not even ice. Yeah. So fun. My first attempt at liquids with a bunch of Zofran was a disaster so that redid the clock in terms of me eating. The popsicle didn't make it and neither did the 3 tablespoons of broth. By then I was 5 days with nothing to eat. So I was pissed. And once again facing the possibility of an NG shoved down my nose and throat. Oh did I mention my hemoglobin level dropped to 7. Yeah that's transfusion level low. So all this was happening at once. IT NEVER GETS EASIER. Ever. NO matter how many times I've gone through this and am mentally prepared for starving for 4-5 days easily and then the pain of your guts working and/or NOT working, it is never easy. It is just horrible every time. Being attached to an IV pole and having no choice but to drop to the hospital floor and barf in the garbage can is insane. Because hospital floors #1 are so clean. I hit the call button and basically jumped. They raced in because they answered the call and I didn't respond.  #2 Meeting your next RN for the next 12 hours while face first in the trash is swell.
Luckily I didn't need a transfusion although I wouldn't have minded getting topped off because it makes me feel so great!
Finally-- 4 days after surgery I could handle liquids. Well, a sip here and there. GI surgery is just so brutal. Your guts don't have to work for months, the surgery shuts them down even more and then trying to get them to work again and not get sick is such a slow road. I've done it way too many times. So on day 5 post OP I got FULL liquids which is still slop but better than unidentifiable broth.
It's all just so exhausting. Being hungry and thirsty makes you nuts. I can't even remember how many times now I've gone 4,5,6 days with nothing to eat or drink. An ice chip here or there. It breaks you. It continually amazes me what I have gone through. I know I'm different now. I try hard not to let it happen but when so many days you have the shit end of a situation you get bitter. No matter how hard you try sometimes, it creeps in. You see things differently and react differently. You resent what you can't do normally anymore. You hate yourself. You feel betrayed by your own body. I have always lived my life in the moment. Ok, today I'm flaring. Ok right now I need surgery etc... but it's always been with a given idea that the funk will pass and things will be good again. After THIS surgery. AFTER this gets better. After 5 years of thinking things will be good after yet another issue, I don't know if I have IT anymore. I don't know how to explain it other than I've defeated myself. Kinda. I'm not done yet but I'm 3 weeks post Op and it's not like everything is perfect. I'm happier without the ostomy but I can't lie. I have moments where I definitely weigh the pros of having one. There are cons even with the best case scenario it would seem. Bummer.

But I'm pushing on. Dealing with being wiped out after doing something normal for a few hours. I have to. Being normal is costly. 1-2 days afterwards are useless. I'm a slug. I just need to get through THIS recovery and everything will be ok... right???

Thanks for reading. XO

It's like this and like that and like this and ah...

So a few things. This is probably NOT going to be a shiny, happy post. Just warning. I'm a BITCH. First things first, yesterday was World IBD day and I posted and retweeted and what not which is fine bc all the other days of the year I do that too so it's cool. I was on a few sites and groups yesterday getting all bent out of shape. EVERY SINGLE THING was "bring awareness TODAY on World IBD day". "Wear your purple TODAY to bring awareness"... blah blah blah. Seriously. These are the same people who hide their illness, are ashamed of their scars, embarrassed by their ostomies and NEVER talk about their illness outside their locked down Facebook group. Hey, we all have our things. Not all of us are as comfortable with things as others are. I get it. BUT DON"T BLAST THE SHIT OUT OF THE INTERWEBS ONE DAY A YEAR IN THE NAME OF IBD AWARENESS. Because you blasting Twitter is NOT bringing awareness. The average person is not following #WorldIBDday. Bringing awareness to our illness is a DAILY job. You want people to "get" what IBD is about so bad? Do you really? Then open your mouth the OTHER 364 days a year in REAL life. I will guarantee I have enlightened more people this year NOT wearing purple and just by peppering my conversation with my struggle and NEVER hiding what I am, than you do wearing your purple that no one looks twice at. Wearing an ostomy bag to the beach and not hiding it will spark more conversation and offer more chances to inform and educate than posting meme's all damn day long on World IBD day. Don't get me wrong, I love that we have a day. But the point of that day is to be impactful!! Can we TRY to do that the right way going forward? All days? Ugh, sorry. I know I'm a bitch.

Here's my second issue. I am SICK and TIRED of being poked, prodded and tested. I mean just totally fed up. I went to the dentist today for a cleaning bc I've been putting it off. It's hard enough dealing with one thing. Dealing with my oral hygiene has not ranked up there lately. I brush multiple times a day, I floss daily. I'm not a negligent toothy person. But the dentist. Not urgent. Not when I have REAL issues. So I go and it was horrible. First off, my teeth have NEVER been the same since I've been sick. The steroids and the meds have ruined my teeth. Steroids destroy bone. My bone is lower in MANY spots under my gums from a few years ago. I have like 4 cavities and I think prior to getting sick I had 4 my whole life. So I had to schedule to go back for more torture with the cavities. In the meantime, my gums in the back were inflamed caused but me not going in for cleanings. It's just impossible to be as thorough brushing back there on your own apparently. So, I needed my gums LASERED today. Yeah. Freakin' smelled so bad. He was burning my face off. I was laying there just thinking, "This shit never ends with me". They got lasered so they could get at the tartar and bacteria that was beneath the inflamed part. So that was awesome. It didn't hurt because he numbed a lot with novacaine gel and what "hurts" for others isn't shit for me to flinch at anymore. BUT----I'm NEVER skipping a cleaning again. A little PSA- GO GET YOUR TEETH CLEANED!!!

Thirdly, I got set up for a surgery date for my second reversal. I am both excited and terrified. There's something really freaky about knowing what kind of pain you are in for. It is truly easier to be surprised by it. The determination hasn't been made about whether he's opening me up again, or going to be able to do everything local through my ostomy site. At this point I don't even care. What's getting cut open all the way for a third time? I basically have no feeling left around the scar so no chance making it worse. There are always risks no matter what. NOT being cut open doesn't even insure a faster recovery because last time my reversal recovery hurt. AND it was local through my ostomy. So flip a coin, doc. Let's do this. Five weeks from now and we are off. I'm having pain around my stoma site and pain passing output so I can't wait to get reversed. Even if I know how bad it's going to be.

I just have a lot going on in my head. Being chronically ill and always having in the back of your head that you'll need to get cut open again is exhausting. Truly exhausting. It's hard not to let it affect every day and the outlook I have in everything in my life. Recovery is exhausting. Pain kicks your ass. The last reversal turned into a slew of other problems which of course led to more complicated surgeries and another ostomy. Knowing that I'm basically going backwards into that situation again is hard because I can't help but have the little nag in my brain wondering if it's going to end up the same way in a vicious cycle of issues. Hoping not. Thanks for letting me vent.
---->> Get your teeth cleaned and don't take your health for granted. XO

So a few things. This is probably NOT going to be a shiny, happy post. Just warning. I'm a BITCH. First things first, yesterday was World IBD day and I posted and retweeted and what not which is fine bc all the other days of the year I do that too so it's cool. I was on a few sites and groups yesterday getting all bent out of shape. EVERY SINGLE THING was "bring awareness TODAY on World IBD day". "Wear your purple TODAY to bring awareness"... blah blah blah. Seriously. These are the same people who hide their illness, are ashamed of their scars, embarrassed by their ostomies and NEVER talk about their illness outside their locked down Facebook group. Hey, we all have our things. Not all of us are as comfortable with things as others are. I get it. BUT DON"T BLAST THE SHIT OUT OF THE INTERWEBS ONE DAY A YEAR IN THE NAME OF IBD AWARENESS. Because you blasting Twitter is NOT bringing awareness. The average person is not following #WorldIBDday. Bringing awareness to our illness is a DAILY job. You want people to "get" what IBD is about so bad? Do you really? Then open your mouth the OTHER 364 days a year in REAL life. I will guarantee I have enlightened more people this year NOT wearing purple and just by peppering my conversation with my struggle and NEVER hiding what I am, than you do wearing your purple that no one looks twice at. Wearing an ostomy bag to the beach and not hiding it will spark more conversation and offer more chances to inform and educate than posting meme's all damn day long on World IBD day. Don't get me wrong, I love that we have a day. But the point of that day is to be impactful!! Can we TRY to do that the right way going forward? All days? Ugh, sorry. I know I'm a bitch.

Here's my second issue. I am SICK and TIRED of being poked, prodded and tested. I mean just totally fed up. I went to the dentist today for a cleaning bc I've been putting it off. It's hard enough dealing with one thing. Dealing with my oral hygiene has not ranked up there lately. I brush multiple times a day, I floss daily. I'm not a negligent toothy person. But the dentist. Not urgent. Not when I have REAL issues. So I go and it was horrible. First off, my teeth have NEVER been the same since I've been sick. The steroids and the meds have ruined my teeth. Steroids destroy bone. My bone is lower in MANY spots under my gums from a few years ago. I have like 4 cavities and I think prior to getting sick I had 4 my whole life. So I had to schedule to go back for more torture with the cavities. In the meantime, my gums in the back were inflamed caused but me not going in for cleanings. It's just impossible to be as thorough brushing back there on your own apparently. So, I needed my gums LASERED today. Yeah. Freakin' smelled so bad. He was burning my face off. I was laying there just thinking, "This shit never ends with me". They got lasered so they could get at the tartar and bacteria that was beneath the inflamed part. So that was awesome. It didn't hurt because he numbed a lot with novacaine gel and what "hurts" for others isn't shit for me to flinch at anymore. BUT----I'm NEVER skipping a cleaning again. A little PSA- GO GET YOUR TEETH CLEANED!!!

Thirdly, I got set up for a surgery date for my second reversal. I am both excited and terrified. There's something really freaky about knowing what kind of pain you are in for. It is truly easier to be surprised by it. The determination hasn't been made about whether he's opening me up again, or going to be able to do everything local through my ostomy site. At this point I don't even care. What's getting cut open all the way for a third time? I basically have no feeling left around the scar so no chance making it worse. There are always risks no matter what. NOT being cut open doesn't even insure a faster recovery because last time my reversal recovery hurt. AND it was local through my ostomy. So flip a coin, doc. Let's do this. Five weeks from now and we are off. I'm having pain around my stoma site and pain passing output so I can't wait to get reversed. Even if I know how bad it's going to be.

I just have a lot going on in my head. Being chronically ill and always having in the back of your head that you'll need to get cut open again is exhausting. Truly exhausting. It's hard not to let it affect every day and the outlook I have in everything in my life. Recovery is exhausting. Pain kicks your ass. The last reversal turned into a slew of other problems which of course led to more complicated surgeries and another ostomy. Knowing that I'm basically going backwards into that situation again is hard because I can't help but have the little nag in my brain wondering if it's going to end up the same way in a vicious cycle of issues. Hoping not. Thanks for letting me vent.
---->> Get your teeth cleaned and don't take your health for granted. XO

"Perseverance, secret of all triumphs."

Hey everyone,
I wanted to write within a month of the last one but, well, honestly it's the same shit. I'M TIRED of hearing it so it seemed ridiculous for me to put it out into the universe. But hey, here I am. Since I last wrote my skin has gotten worse. I'm blowing wafers left and right and they aren't cheap. I'm talking a box of 10 over a weekend and wafers are made to last upwards of a week. I've requested some new products and hoping they work better. Something is off this time where the right wafers are NOT working with my body this time. I know after so many weight fluctuations and surgeries, my abdominal landscape is very deformed. Nothing is flat. So my wafers aren't sealing properly. It blows. I have what feels like the worst sunburn you can imagine, then will adhesive and wax that bonds to the skin that you continually have to tear off sometimes multiple times a day. And it itches. I want to tear into it but I can't. I won't post a pic because it is just awful. It makes a person extremely assholey to be that uncomfortable all the time, 24/7. Yes, no typo. Assholey.
So because of the assholey feeling I'm stuck in, I didn't want to write. I want to hide. Well, I don't truly but I do because of this crap.
My classes started. I'm taking 2 on campus and one online. I feel overextended most days. I could sleep til noon everyday. I sleep like shit. I look like shit. I'm run down and listless. Walking up the stairs hurts. From the amount of output from my ostomy, and the consistency, food is blowing through me and I'm probably absorbing nothing. I've had labs and they all show electrolytes are god but I don't feel right. I don't feel healthy. Aside from skin issues, that's my main issue. If I had energy and slept well the skin issues wouldn't impact me the way they do. I'll take my Jpouch over this. That's saying something because if you've been reading, I was really having issues with my colitis. But they way I see it now, my body HATES ostomies. My skin hates them. My ostomy is like a turtle head. It recesses back into my body and with that, behind the wafer hence mucho leakage and mucho acid eating at my skin. So because I'm a jackass, if I'm going to have discomfort, I want my vanity. I want convenience. I want my JPouch. Yes. I said vanity. I have little for the most part which is evident in me voluntarily getting an ostomy. I will bet 99% off people would not take that route for vanity. But whatever. I did because sometimes I can be a bad ass bitch and I bit the bullet. Well, surgeon says it looks like I'm healing well internally. He'll knock me out and scope me in 2 months and figure out my reversal back to JPouch. Another week in the hospital. Another chance of ileus. Can't wait.
But I'll do it and hopefully PREVENTING the inflammation will prove to be a better option from trying to get rid of it. Because that didn't work. AT ALL. Hence my situation.
I'm thankful for my husband that puts up with all this nonsense from me. I love him. I'm lucky I have him in my life. I'm sure many days he wants to slap the bitchiness right out of me. Many days. MANY.
So patiently waiting for new supplies. I will update on if they work, and hopefully they will. We are going away in March and I'd like to travel somewhat comfortably and not have the trip ruined by blowing ostomy wafers. Springing a leak and having to change in an airplane bathroom sounds like the least fun thing to do on vacation. Nah, I can think of a few more but regardless no fun for Lisa.
Ok everyone, it's time to go lights out. I have an early class that goes long and mornings and me are not besties.
Hope everyone is staying warm. This winter is just dragging. XO

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Hey everyone,
I wanted to write within a month of the last one but, well, honestly it's the same shit. I'M TIRED of hearing it so it seemed ridiculous for me to put it out into the universe. But hey, here I am. Since I last wrote my skin has gotten worse. I'm blowing wafers left and right and they aren't cheap. I'm talking a box of 10 over a weekend and wafers are made to last upwards of a week. I've requested some new products and hoping they work better. Something is off this time where the right wafers are NOT working with my body this time. I know after so many weight fluctuations and surgeries, my abdominal landscape is very deformed. Nothing is flat. So my wafers aren't sealing properly. It blows. I have what feels like the worst sunburn you can imagine, then will adhesive and wax that bonds to the skin that you continually have to tear off sometimes multiple times a day. And it itches. I want to tear into it but I can't. I won't post a pic because it is just awful. It makes a person extremely assholey to be that uncomfortable all the time, 24/7. Yes, no typo. Assholey.
So because of the assholey feeling I'm stuck in, I didn't want to write. I want to hide. Well, I don't truly but I do because of this crap.
My classes started. I'm taking 2 on campus and one online. I feel overextended most days. I could sleep til noon everyday. I sleep like shit. I look like shit. I'm run down and listless. Walking up the stairs hurts. From the amount of output from my ostomy, and the consistency, food is blowing through me and I'm probably absorbing nothing. I've had labs and they all show electrolytes are god but I don't feel right. I don't feel healthy. Aside from skin issues, that's my main issue. If I had energy and slept well the skin issues wouldn't impact me the way they do. I'll take my Jpouch over this. That's saying something because if you've been reading, I was really having issues with my colitis. But they way I see it now, my body HATES ostomies. My skin hates them. My ostomy is like a turtle head. It recesses back into my body and with that, behind the wafer hence mucho leakage and mucho acid eating at my skin. So because I'm a jackass, if I'm going to have discomfort, I want my vanity. I want convenience. I want my JPouch. Yes. I said vanity. I have little for the most part which is evident in me voluntarily getting an ostomy. I will bet 99% off people would not take that route for vanity. But whatever. I did because sometimes I can be a bad ass bitch and I bit the bullet. Well, surgeon says it looks like I'm healing well internally. He'll knock me out and scope me in 2 months and figure out my reversal back to JPouch. Another week in the hospital. Another chance of ileus. Can't wait.
But I'll do it and hopefully PREVENTING the inflammation will prove to be a better option from trying to get rid of it. Because that didn't work. AT ALL. Hence my situation.
I'm thankful for my husband that puts up with all this nonsense from me. I love him. I'm lucky I have him in my life. I'm sure many days he wants to slap the bitchiness right out of me. Many days. MANY.
So patiently waiting for new supplies. I will update on if they work, and hopefully they will. We are going away in March and I'd like to travel somewhat comfortably and not have the trip ruined by blowing ostomy wafers. Springing a leak and having to change in an airplane bathroom sounds like the least fun thing to do on vacation. Nah, I can think of a few more but regardless no fun for Lisa.
Ok everyone, it's time to go lights out. I have an early class that goes long and mornings and me are not besties.
Hope everyone is staying warm. This winter is just dragging. XO

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Who's life is this anyway?

Well, it has come to this. I waited a bit after surgery to write because I just wasn't up to it and have not been really happy with everything about myself.
My week in the hospital was HORRIBLE. HORRIBLE. It took forever to get going because my one surgeon AND the anesthesiologist got stuck in another surgery at a different hospital. So I sat around like this, in pain, for HOURS. Hungry. Anxious. Freezing. In asshole Christmas socks.

But then they finally showed up and I got good drugs. Oh and 2 units of blood. Naturally. My hemoglobin was in the 6s. Yeah. How I don't pass out on a regular basis is beyond me. 

****Do me a favor people. Donate blood. Even if it's once a year. I've officially had enough units to replace 100% of my blood volume. And I've never been able to give back because of meds or because it's too close to the most recent transfusion. So please. Go do it for me.****

Then it was go time. Slice and dice. Again. Done. Over it. 

Post OP they could not get my pain under control for almost 48 hours. I was at a 10/10 the first night into the next day. I wanted someone to just shoot me in the head. My PCA wouldn't light up fast enough. My EVA from WALL-E. A little magic button of pain relief. Here I am stoned. Yet still in pain. It just wasn't enough.

I can't even describe it. Internal pain, external incision pain, pain from the new stoma, my stomach screaming at me because it hadn't had anything in it in almost 48 hours. Not even an ice chip. If I could have strangled someone with my IV lines I would have. But it hurt too much to move. Plus it's really tough getting an IV going on me so I didn't want to risk losing one. While I was under the anesthesiologist gave me a "back up" IV because I blow IVs like it's my job with my shitty little veins. Then I crossed into ileus which is when your guts aren't entirely awake yet after surgery. Paralysis. So they gave me the ok for liquids and I couldn't help myself. JELLO!!! The apple juice was the greatest thing I'd ever had. By this time I hadn't eaten or drank in 3 days. Here is what sent me into a personal hell for 48 hours. Mind you that's about all I ate. Maybe 3 tiny bites. And I paid for it for 2 days.

 The intestinal pain started because some things were working and some weren't. Then I started barfing my brains out. Violent and disgusting. It was unlike anything I had ever experienced and I'm pretty sure I wanted to die. Again. I missed getting an NG tube by the skin of my teeth. That's when they put a tube down your nose and throat into your stomach and suck everything out so you aren't getting sick anymore. I just couldn't handle that on top of everything else. So I kept puking and crying and dealing with the pain and sickness hoping it would stop. My colorectal surgeon gave me until the next morning and then I was getting one put in. The ileus has the same symptoms of a blockage so he was getting worried. My nurses must have thought I was nuts. They told me to get one. Easy for them to say. Luckily it passed. I could sip a little bit while on Zofram and Phenergan and be ok, so I got through it without one more invasive event happening.
So then finally after the 5th day I felt like I was moving toward recovery. I was finally walking and Hubs and Daughter #2 joined me with her balloon gloves.

Anyway- I've been crabby. This hospital stay crossed some emotional line with me. Maybe because it was multiple procedures in one. Maybe because I thought the hospital sucked. Half my nurses thought I'd only had a hysterectomy. The other half an ileostomy. In my week there I didn't meet one person (aside from my surgeons) who were aware I had multiple procedures in my surgery. One shift of nurses didn't even acknowledge my OBGYN as a doctor. I needed a new gown and was so out of it. So on one of her visits she buzzed and asked them where the gowns were. They pointed. Oh yeah. Pointed. That went over like a lead balloon. She proceeded to stay with me for an hour just talking to me. Changed my gown herself and took care of me. She is seriously the best doctor I have ever met. Popped in on her off Saturday with her DAUGHTER to check on me. Her partner was on call but she came anyway because she was worried about me. She's amazing. But I digress. I've been feeling beaten and defeated. I don't want to do this shit anymore. I've had it. I've had it with recovery. With being cut open. With scars and pain and hospitals. HAD IT. My FrankenBelly is worse. It is hideous. They cut through scar tissue so it just aches. My stoma is bleeding around the outside. Here's my new Stupid Stoma. I will say having already had one, the adjustment to it has been leaps and bounds better. I'm emotionally removed from the event. I am having some minor skin issues but I think I'm top of it since I've done this before. He moved it closer to my belly button this time which kinda pissed me off because it's really hard getting a good seal on your wafer with the crevice of your belly button so close to the stoma. But I'm small and he has to put it in a certain spot based on abdominals (that I barely have anyway) so his choices are limited.

It hurts all around it internally. I have sharp internal pain where my sausage fallopian tube was. It's probably just tissue that's healing but it hurts likes a bitch. I don't know. Sometimes I seriously don't know how the hell I continually go through this crap and keep it together. I'm close to losing it I think.
I was going to go to NY after Christmas to go to my Aunt's wedding. Then the surgery got pushed to December so I couldn't. The wedding was last night and seeing the pictures today have made me really sad and really prompted me finally writing this post. I'm sick of things interfering with MY life and what I want to do. So I missed my Aunt's wedding and I'm sad about it. I don't DO anything. My pain and surgeries and issues rule my activities, or lack thereof. WTF am I doing? I know I've said it before but it seriously like years of my life have slipped away. There's always something that is a roadblock to me living. This year Christmas was a wreck because I was in recovery mode. So I couldn't do what I wanted. I've lost almost 10lbs and I'm tired. I'm dehydrated. Making dinner killed me for 3 days. I definitely overdid it last week with my mom and stepdad here. I didn't even do much but I overdid it. What was I supposed to do? Lay in bed with people in town? I mean what the hell. Something has to give. Not to mention what I spend on meds and now will be spending on ostomy supplies for the next few months. I'm in a funk. I hate myself. I'm exhausted. I'm hurting. It's another month gone. Another winter I didn't go to a tropical island with my husband. Another event I missed.
On top of it, I have incompletes in my classes because I couldn't take my finals. So I will have to deal with that in the next few weeks. Kind of nervous. The hiatus probably did nothing for my retention. Sucks. Just sucks.
So yeah. That's me. Crabby. Cut up. No motivation. I feel more broken than ever. And you know what literally feels like a stab in the chest? I shouldn't say it because everything is relative but that fact doesn't change how it makes me feel. It kills me when people complain about the smallest thing. It's really hard to hear people complain about how absolutely miserable they are with a head cold, their flight is delayed or whatever when I'm stapled shut AGAIN and my kids and their holiday impacted by that fact. People take their health for granted so much. Take their abilities for granted. Jumping up and playing with their kids. Spending hours making cookies. Shopping for that perfect gift. Actually being able to get on a plane to travel. I'd take a 7 hour delay to be able to go away but it seems I never can. Pop some alka seltzer for your cold. Have some drinks at the airport and people watch. Be grateful you don't have chronic pain. Or have been gutted more than once. Or have kids who are used to you being sick and in the hospital. =(  Sorry, like I said I know everything is relative but I can't help it. I would have killed to have had some of the "problems" some people have had over the holidays. That's my reality. I don't know when it'll change or if it ever will. I don't know that this temporary ostomy will work. Maybe my guts don't know how to be healthy. Maybe my pouchitis and flares will come back after my NEXT surgery. It's all a crap shoot. I know this though... at some point I will do what I want anyway whether it be while in pain or during recovery or whatever because I have had it with my life not feeling like mine. I go days without going outside. I've become the anti-Lisa. I am so far from who I was and I can only hope that these years of bullshit haven't erased all of it. I already feel a big part of me not caring. Of letting opportunities pass by because it will take so much out of me to make it happen. That was never me. If I won a vacation tomorrow there is a part of me that wouldn't care. That would assume I couldn't do it, or it would be too much work or I'd get there and not be able to do what I wanted. It sucks. That negative fog just keeps trying to creep around and win. I just need one good stretch of time where I don't have any issues and I know it would go away. I just need to get there. Maybe in 2014.
Thanks for reading. Hope everyone had a wonderful whatever holiday they celebrate. Happy New Year.
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Well, it has come to this. I waited a bit after surgery to write because I just wasn't up to it and have not been really happy with everything about myself.
My week in the hospital was HORRIBLE. HORRIBLE. It took forever to get going because my one surgeon AND the anesthesiologist got stuck in another surgery at a different hospital. So I sat around like this, in pain, for HOURS. Hungry. Anxious. Freezing. In asshole Christmas socks.

But then they finally showed up and I got good drugs. Oh and 2 units of blood. Naturally. My hemoglobin was in the 6s. Yeah. How I don't pass out on a regular basis is beyond me. 

****Do me a favor people. Donate blood. Even if it's once a year. I've officially had enough units to replace 100% of my blood volume. And I've never been able to give back because of meds or because it's too close to the most recent transfusion. So please. Go do it for me.****

Then it was go time. Slice and dice. Again. Done. Over it. 

Post OP they could not get my pain under control for almost 48 hours. I was at a 10/10 the first night into the next day. I wanted someone to just shoot me in the head. My PCA wouldn't light up fast enough. My EVA from WALL-E. A little magic button of pain relief. Here I am stoned. Yet still in pain. It just wasn't enough.

I can't even describe it. Internal pain, external incision pain, pain from the new stoma, my stomach screaming at me because it hadn't had anything in it in almost 48 hours. Not even an ice chip. If I could have strangled someone with my IV lines I would have. But it hurt too much to move. Plus it's really tough getting an IV going on me so I didn't want to risk losing one. While I was under the anesthesiologist gave me a "back up" IV because I blow IVs like it's my job with my shitty little veins. Then I crossed into ileus which is when your guts aren't entirely awake yet after surgery. Paralysis. So they gave me the ok for liquids and I couldn't help myself. JELLO!!! The apple juice was the greatest thing I'd ever had. By this time I hadn't eaten or drank in 3 days. Here is what sent me into a personal hell for 48 hours. Mind you that's about all I ate. Maybe 3 tiny bites. And I paid for it for 2 days.

 The intestinal pain started because some things were working and some weren't. Then I started barfing my brains out. Violent and disgusting. It was unlike anything I had ever experienced and I'm pretty sure I wanted to die. Again. I missed getting an NG tube by the skin of my teeth. That's when they put a tube down your nose and throat into your stomach and suck everything out so you aren't getting sick anymore. I just couldn't handle that on top of everything else. So I kept puking and crying and dealing with the pain and sickness hoping it would stop. My colorectal surgeon gave me until the next morning and then I was getting one put in. The ileus has the same symptoms of a blockage so he was getting worried. My nurses must have thought I was nuts. They told me to get one. Easy for them to say. Luckily it passed. I could sip a little bit while on Zofram and Phenergan and be ok, so I got through it without one more invasive event happening.
So then finally after the 5th day I felt like I was moving toward recovery. I was finally walking and Hubs and Daughter #2 joined me with her balloon gloves.

Anyway- I've been crabby. This hospital stay crossed some emotional line with me. Maybe because it was multiple procedures in one. Maybe because I thought the hospital sucked. Half my nurses thought I'd only had a hysterectomy. The other half an ileostomy. In my week there I didn't meet one person (aside from my surgeons) who were aware I had multiple procedures in my surgery. One shift of nurses didn't even acknowledge my OBGYN as a doctor. I needed a new gown and was so out of it. So on one of her visits she buzzed and asked them where the gowns were. They pointed. Oh yeah. Pointed. That went over like a lead balloon. She proceeded to stay with me for an hour just talking to me. Changed my gown herself and took care of me. She is seriously the best doctor I have ever met. Popped in on her off Saturday with her DAUGHTER to check on me. Her partner was on call but she came anyway because she was worried about me. She's amazing. But I digress. I've been feeling beaten and defeated. I don't want to do this shit anymore. I've had it. I've had it with recovery. With being cut open. With scars and pain and hospitals. HAD IT. My FrankenBelly is worse. It is hideous. They cut through scar tissue so it just aches. My stoma is bleeding around the outside. Here's my new Stupid Stoma. I will say having already had one, the adjustment to it has been leaps and bounds better. I'm emotionally removed from the event. I am having some minor skin issues but I think I'm top of it since I've done this before. He moved it closer to my belly button this time which kinda pissed me off because it's really hard getting a good seal on your wafer with the crevice of your belly button so close to the stoma. But I'm small and he has to put it in a certain spot based on abdominals (that I barely have anyway) so his choices are limited.

It hurts all around it internally. I have sharp internal pain where my sausage fallopian tube was. It's probably just tissue that's healing but it hurts likes a bitch. I don't know. Sometimes I seriously don't know how the hell I continually go through this crap and keep it together. I'm close to losing it I think.
I was going to go to NY after Christmas to go to my Aunt's wedding. Then the surgery got pushed to December so I couldn't. The wedding was last night and seeing the pictures today have made me really sad and really prompted me finally writing this post. I'm sick of things interfering with MY life and what I want to do. So I missed my Aunt's wedding and I'm sad about it. I don't DO anything. My pain and surgeries and issues rule my activities, or lack thereof. WTF am I doing? I know I've said it before but it seriously like years of my life have slipped away. There's always something that is a roadblock to me living. This year Christmas was a wreck because I was in recovery mode. So I couldn't do what I wanted. I've lost almost 10lbs and I'm tired. I'm dehydrated. Making dinner killed me for 3 days. I definitely overdid it last week with my mom and stepdad here. I didn't even do much but I overdid it. What was I supposed to do? Lay in bed with people in town? I mean what the hell. Something has to give. Not to mention what I spend on meds and now will be spending on ostomy supplies for the next few months. I'm in a funk. I hate myself. I'm exhausted. I'm hurting. It's another month gone. Another winter I didn't go to a tropical island with my husband. Another event I missed.
On top of it, I have incompletes in my classes because I couldn't take my finals. So I will have to deal with that in the next few weeks. Kind of nervous. The hiatus probably did nothing for my retention. Sucks. Just sucks.
So yeah. That's me. Crabby. Cut up. No motivation. I feel more broken than ever. And you know what literally feels like a stab in the chest? I shouldn't say it because everything is relative but that fact doesn't change how it makes me feel. It kills me when people complain about the smallest thing. It's really hard to hear people complain about how absolutely miserable they are with a head cold, their flight is delayed or whatever when I'm stapled shut AGAIN and my kids and their holiday impacted by that fact. People take their health for granted so much. Take their abilities for granted. Jumping up and playing with their kids. Spending hours making cookies. Shopping for that perfect gift. Actually being able to get on a plane to travel. I'd take a 7 hour delay to be able to go away but it seems I never can. Pop some alka seltzer for your cold. Have some drinks at the airport and people watch. Be grateful you don't have chronic pain. Or have been gutted more than once. Or have kids who are used to you being sick and in the hospital. =(  Sorry, like I said I know everything is relative but I can't help it. I would have killed to have had some of the "problems" some people have had over the holidays. That's my reality. I don't know when it'll change or if it ever will. I don't know that this temporary ostomy will work. Maybe my guts don't know how to be healthy. Maybe my pouchitis and flares will come back after my NEXT surgery. It's all a crap shoot. I know this though... at some point I will do what I want anyway whether it be while in pain or during recovery or whatever because I have had it with my life not feeling like mine. I go days without going outside. I've become the anti-Lisa. I am so far from who I was and I can only hope that these years of bullshit haven't erased all of it. I already feel a big part of me not caring. Of letting opportunities pass by because it will take so much out of me to make it happen. That was never me. If I won a vacation tomorrow there is a part of me that wouldn't care. That would assume I couldn't do it, or it would be too much work or I'd get there and not be able to do what I wanted. It sucks. That negative fog just keeps trying to creep around and win. I just need one good stretch of time where I don't have any issues and I know it would go away. I just need to get there. Maybe in 2014.
Thanks for reading. Hope everyone had a wonderful whatever holiday they celebrate. Happy New Year.
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Deja vu all over again.

It's been a few weeks since I wrote. I have been hesitating to write until I figured out everything with my surgeries and could just do one post. It is also Crohn's and Colitis Awareness week this week and I've been blasting Facebook with posts nonstop with facts and articles and pictures.
I am a few days out from another surgery. Monday at 1030a I will be having an O.R party with not one, but TWO surgeons. Hey, when I decide to do something, I do it big. So my OB/Gyn will be there to take out my girly bits that will no longer be baking anything and are not faring well with all my GI and autoimmune issues. If you've been following, my immunosuppressants have caused advanced precancer cells to form faster than normal and something has caused my left fallopian tube to blow up like a sausage. So that's fun. You don't think about the relationship all your organs have with each other until one is missing. They are all millimeters away, support each other and share connective tissue. Take something away and that change in anatomy and that void causes things to shift, no longer sit in the same position and can cause issues. For many women, their uterus' tip dramatically post colectomy because that support is no longer there. That can then lead to horrible periods with extreme pain and blood loss. So all things considered, it's coming out. If they would take my spleen and gall bladder I'd let them do that too. But they won't. =(

So on Monday, my Colorectal will open me up and separate everything from my guts and Jpouch then my GYN will take out all my cash and prizes, leaving my ovaries so I don't turn into a menopausal maniac. Although, hot flashes would be welcome as I am always freezing. ;-)
After she's done, my Colorectal is coming back to give me another temporary loop ileostomy. I'm not really happy about it because the goal was always to have a Jpouch but my chronic pouchitis has progressively gotten worse and is antibiotic resistant plus the cuffitis causing pain and bleeding has gotten to be too much. My pouch needs to rest and heal and it just can't while I have all my plumbing hooked up. As long as I have that 2cm of tissue left I am prone to flares. So essentially I'm having a UC flare in 2cm of what's left of my colon. And my mouth is full of canker sores again so that's pretty typical of my colitis flares. Not fun right now for me. Not at all.
So Monday will be a little tag team surgical party. I know how to be sick people. I do it UP!!!!! On a positive, the weather is downright freezing so I'll be nice and stoned in the Hossie.
My surgeon is hopefully going to go in through my old ostomy scar. It worked ok, I wish it had been a bit lower but oh well. Needless to say, the ostomy nurses at Pre Op marked me. Over my scar. Phew. Good thing. Now my surgeon will know where to go in! :-/

If you have time, check out all the stuff online regarding #IBDawarenessweek. There is a lot of info out there and awareness=understanding. There is a lot on FB, twitter and Instagram. Tomorrow is the last day so it's been nice timing for me to reflect on what I've been through and how my struggle continues. I can't help but wonder at what point will I feel normal. Not have doctor appointments be every 6 weeks. Not have a bathroom drawer full of meds and topicals. Not spend hundreds of dollars on Rx copays. Not have to choose between my pain and pain pills because I have to drive, or do homework or be alone with my kids. Not have guilt because I'm a sick mom. Not look like shit because I'm a #tiredhag. Not have my hair fall out because my nutritional absorption sucks. Not be anemic. I could go on and on.
All I can think going into Monday is that this is what's going to work. I'm not nervous because being cut open doesn't phase me anymore, but I'm upset. I'm upset I have to go through an ostomy adjustment AGAIN. Mentally it will be easier this time, but physically it will still suck. And how many times can I get cut open. I was lucky that my scars healed so well, but there's no telling what the rehealing will do to them. FrankenBelly part deux. My weight will fluctuate again. I may be chronically dehydrated again and almost be blacking out every day. Plus, there are no guarantees. I could get reversed in a few months and all the pouchitis and cuffitis could come back. And then it was for nothing. And we don't have a plan if that were to happen. I refused to discuss anything further than this surgery and letting my guts heal.
I planned on spending this weekend doing last minute holiday stuff before I went into the Hospital but we got hit with nasty weather so there won't be much driving going on. I really need a pedi. And a bang trim. I can't get admitted looking all crazy!!!!
Ok everyone...I will be back post Op. I'll easily be in 5 days and I'm sure I'll have lots to share when I get out. Have a great weekend everybody! Thanks for reading!

It's been a few weeks since I wrote. I have been hesitating to write until I figured out everything with my surgeries and could just do one post. It is also Crohn's and Colitis Awareness week this week and I've been blasting Facebook with posts nonstop with facts and articles and pictures.
I am a few days out from another surgery. Monday at 1030a I will be having an O.R party with not one, but TWO surgeons. Hey, when I decide to do something, I do it big. So my OB/Gyn will be there to take out my girly bits that will no longer be baking anything and are not faring well with all my GI and autoimmune issues. If you've been following, my immunosuppressants have caused advanced precancer cells to form faster than normal and something has caused my left fallopian tube to blow up like a sausage. So that's fun. You don't think about the relationship all your organs have with each other until one is missing. They are all millimeters away, support each other and share connective tissue. Take something away and that change in anatomy and that void causes things to shift, no longer sit in the same position and can cause issues. For many women, their uterus' tip dramatically post colectomy because that support is no longer there. That can then lead to horrible periods with extreme pain and blood loss. So all things considered, it's coming out. If they would take my spleen and gall bladder I'd let them do that too. But they won't. =(

So on Monday, my Colorectal will open me up and separate everything from my guts and Jpouch then my GYN will take out all my cash and prizes, leaving my ovaries so I don't turn into a menopausal maniac. Although, hot flashes would be welcome as I am always freezing. ;-)
After she's done, my Colorectal is coming back to give me another temporary loop ileostomy. I'm not really happy about it because the goal was always to have a Jpouch but my chronic pouchitis has progressively gotten worse and is antibiotic resistant plus the cuffitis causing pain and bleeding has gotten to be too much. My pouch needs to rest and heal and it just can't while I have all my plumbing hooked up. As long as I have that 2cm of tissue left I am prone to flares. So essentially I'm having a UC flare in 2cm of what's left of my colon. And my mouth is full of canker sores again so that's pretty typical of my colitis flares. Not fun right now for me. Not at all.
So Monday will be a little tag team surgical party. I know how to be sick people. I do it UP!!!!! On a positive, the weather is downright freezing so I'll be nice and stoned in the Hossie.
My surgeon is hopefully going to go in through my old ostomy scar. It worked ok, I wish it had been a bit lower but oh well. Needless to say, the ostomy nurses at Pre Op marked me. Over my scar. Phew. Good thing. Now my surgeon will know where to go in! :-/

If you have time, check out all the stuff online regarding #IBDawarenessweek. There is a lot of info out there and awareness=understanding. There is a lot on FB, twitter and Instagram. Tomorrow is the last day so it's been nice timing for me to reflect on what I've been through and how my struggle continues. I can't help but wonder at what point will I feel normal. Not have doctor appointments be every 6 weeks. Not have a bathroom drawer full of meds and topicals. Not spend hundreds of dollars on Rx copays. Not have to choose between my pain and pain pills because I have to drive, or do homework or be alone with my kids. Not have guilt because I'm a sick mom. Not look like shit because I'm a #tiredhag. Not have my hair fall out because my nutritional absorption sucks. Not be anemic. I could go on and on.
All I can think going into Monday is that this is what's going to work. I'm not nervous because being cut open doesn't phase me anymore, but I'm upset. I'm upset I have to go through an ostomy adjustment AGAIN. Mentally it will be easier this time, but physically it will still suck. And how many times can I get cut open. I was lucky that my scars healed so well, but there's no telling what the rehealing will do to them. FrankenBelly part deux. My weight will fluctuate again. I may be chronically dehydrated again and almost be blacking out every day. Plus, there are no guarantees. I could get reversed in a few months and all the pouchitis and cuffitis could come back. And then it was for nothing. And we don't have a plan if that were to happen. I refused to discuss anything further than this surgery and letting my guts heal.
I planned on spending this weekend doing last minute holiday stuff before I went into the Hospital but we got hit with nasty weather so there won't be much driving going on. I really need a pedi. And a bang trim. I can't get admitted looking all crazy!!!!
Ok everyone...I will be back post Op. I'll easily be in 5 days and I'm sure I'll have lots to share when I get out. Have a great weekend everybody! Thanks for reading!

Thankful November

There seems to be a thing going around on social media where every day someone writes something they are thankful for this month. The idea is great. Truly it is. I don't have the dedication or attention span to do something every single day like that. I tried the October photo challenge on Instagram and failed miserably. Day 5. Oh, Day 17? Ok.
I will say this for this post. I am thankful for a lot. Despite the shitty hand I've been dealt and continue to get dealt I have some very wonderful things going on. There are so many days it is hard to see them through the fog of pain, the reality of illness and doctor's appointments and focusing on the negative. I'm sick of being tired and in pain. I'm sick of not going to beautiful places and traveling. I miss the salt air. I actually miss working out. I hate running one errand and being wiped out for an entire day. Then there comes a day that pulls the veil and makes everything feel so wonderful and in that moment, I forget I have anything to bitch about to begin with.
As much as I'm thankful that I had many years without so much as a sprained ankle, migraine etc... the last few years have definitely made up for it. So I'm thankful for a pain-free childhood and lived my 20s like I had to burn myself out on purpose.
I have my supportive husband who puts up with all this drama, and me being crabby and in pain, and not fun on many occasions. We don't go on vacation because I suck. Our outings are short lived. I'm pretty useless with heavy lifting situations and I'm usually in a drug induced coma at night if Daughter #2 wakes up. I have two healthy, beautiful, perfect girls. They are goofy and crack me up. I have a great family that I don't see nearly enough because we are scattered all over the country. I have childhood friends that I will always have a bond with and no matter how much time or distance, I know they will always be there.
Since moving to Texas I've met some really great people. I have friends I've met through my kids and through my Husband and I love those couple of gals. They know who they are. I enjoy the sunshine almost everyday, and Daughter #1 loves her school and all her friends. If this state wasn't run by a bunch of conservative, Republican douchebags and was on the ocean it would be perfect.
Specifically, today I am thankful for the internet and my IBD struggle. Yes. Thankful. Friday I got to meet up with a fellow gutsy girl that I met online through a support page. We slowly formed a friendship and we came to realize some similar interests outside of our guts.
Both of us being JFK nuts was one of our common threads. We met to see the movie "Parkland" and seriously it couldn't have been a better way to transition to "real life" friendship. It was like we'd been friends for years. We went to lunch and we probably could have sat there for 3 hours shooting the shit about whatever. And yes, we DID talk about our issues, but the best part is we didn't HAVE to. In fact we talked about that at the very end. After lunch, she left and I wandered around some shops killing time before a doctor's appointment and I realized, at one point, I felt really light. I just felt GOOD. I mean, I was still in pain and what not but I felt this weird sense of completeness I haven't felt in a while. Then it struck me that this was someone that understood me on more levels than anyone I'd met or known in a long time. There wasn't just the our-kids-go-to-school-connection, or the IBD connection, or the our-husbands-know-each-other-connection. It was really that sweet spot of both of us having this illness that brought us together and yet, if that illness disappeared we'd still be cool. It was almost as if you have this friend and then you both get diagnosed with the same thing so you just "get it". But you can still just be because you each understand so you don't need to explain it. I don't know. I hope that makes sense. Whatever I'm saying is, I'm thankful for my IBD and the internet for bringing me to this point where I have this friend I never would have known otherwise. She's not the first "friend" I have now because of my illness, but she's the first I got to meet up with. I had a pretty shitty couple of days around that pocket of a couple of hours, but somehow it wasn't so bad. I won't even get into those details right now. Thanks, Casey. Glad to now really know you in real life, so when I say "my friend" it doesn't just mean a name or face in my laptop. So I'm thankful. =) Have a great day everyone. Happy Birthday to the USMC today and a big thanks to all the Veterans tomorrow.

There seems to be a thing going around on social media where every day someone writes something they are thankful for this month. The idea is great. Truly it is. I don't have the dedication or attention span to do something every single day like that. I tried the October photo challenge on Instagram and failed miserably. Day 5. Oh, Day 17? Ok.
I will say this for this post. I am thankful for a lot. Despite the shitty hand I've been dealt and continue to get dealt I have some very wonderful things going on. There are so many days it is hard to see them through the fog of pain, the reality of illness and doctor's appointments and focusing on the negative. I'm sick of being tired and in pain. I'm sick of not going to beautiful places and traveling. I miss the salt air. I actually miss working out. I hate running one errand and being wiped out for an entire day. Then there comes a day that pulls the veil and makes everything feel so wonderful and in that moment, I forget I have anything to bitch about to begin with.
As much as I'm thankful that I had many years without so much as a sprained ankle, migraine etc... the last few years have definitely made up for it. So I'm thankful for a pain-free childhood and lived my 20s like I had to burn myself out on purpose.
I have my supportive husband who puts up with all this drama, and me being crabby and in pain, and not fun on many occasions. We don't go on vacation because I suck. Our outings are short lived. I'm pretty useless with heavy lifting situations and I'm usually in a drug induced coma at night if Daughter #2 wakes up. I have two healthy, beautiful, perfect girls. They are goofy and crack me up. I have a great family that I don't see nearly enough because we are scattered all over the country. I have childhood friends that I will always have a bond with and no matter how much time or distance, I know they will always be there.
Since moving to Texas I've met some really great people. I have friends I've met through my kids and through my Husband and I love those couple of gals. They know who they are. I enjoy the sunshine almost everyday, and Daughter #1 loves her school and all her friends. If this state wasn't run by a bunch of conservative, Republican douchebags and was on the ocean it would be perfect.
Specifically, today I am thankful for the internet and my IBD struggle. Yes. Thankful. Friday I got to meet up with a fellow gutsy girl that I met online through a support page. We slowly formed a friendship and we came to realize some similar interests outside of our guts.
Both of us being JFK nuts was one of our common threads. We met to see the movie "Parkland" and seriously it couldn't have been a better way to transition to "real life" friendship. It was like we'd been friends for years. We went to lunch and we probably could have sat there for 3 hours shooting the shit about whatever. And yes, we DID talk about our issues, but the best part is we didn't HAVE to. In fact we talked about that at the very end. After lunch, she left and I wandered around some shops killing time before a doctor's appointment and I realized, at one point, I felt really light. I just felt GOOD. I mean, I was still in pain and what not but I felt this weird sense of completeness I haven't felt in a while. Then it struck me that this was someone that understood me on more levels than anyone I'd met or known in a long time. There wasn't just the our-kids-go-to-school-connection, or the IBD connection, or the our-husbands-know-each-other-connection. It was really that sweet spot of both of us having this illness that brought us together and yet, if that illness disappeared we'd still be cool. It was almost as if you have this friend and then you both get diagnosed with the same thing so you just "get it". But you can still just be because you each understand so you don't need to explain it. I don't know. I hope that makes sense. Whatever I'm saying is, I'm thankful for my IBD and the internet for bringing me to this point where I have this friend I never would have known otherwise. She's not the first "friend" I have now because of my illness, but she's the first I got to meet up with. I had a pretty shitty couple of days around that pocket of a couple of hours, but somehow it wasn't so bad. I won't even get into those details right now. Thanks, Casey. Glad to now really know you in real life, so when I say "my friend" it doesn't just mean a name or face in my laptop. So I'm thankful. =) Have a great day everyone. Happy Birthday to the USMC today and a big thanks to all the Veterans tomorrow.

Broken. Just broken. For now.

I guess my goal lately is to go at least a month in between posts. Not intentionally but it keeps happening. Pretty much health wise things are chugging along. Got another scope by a different doc to tell me the same thing as last time. Severe ulceration still. Some nasty fissures causing pain. Muscle spasms are back to piss me off. Couple that with the abdominal pain from my engorged fallopian tube and I'm just in pain daily. Basically nonstop. Discomfort in so many areas. There are days I'm not leaving the house unless necessary. My pain pills dull it and I'm content to be under my electric blanket and zoning out. Some days it takes everything out of me to go to class. Running errands wipes me out for the day. It's just so pathetic and ridiculous. I had to take Daughter #1 to the doctor and it struck me how much time in the last four years has been eaten up by my medical issues. I've put in some solid time. Time I could be traveling. Reading. Hell, vacuuming would be better. Ok, maybe not, but it's just such bullshit. I was driving along thinking what do I have to show for four years? Let's not reduce the importance of having my child, naturally, but really. Not much. A lot of laying on my ass with zero drive or with too much pain to accomplish anything. I got pissed. Just that angry, upset pissed and the tears just come.
I'm 36. My time has slipped through my fingers. So much of it without any joy in it. Just days of pain. Hospitals. Doctors. Driving to doctors. Filling scripts. Getting tests. I've fucking had it. There's nothing I can do either but keep going and keep thinking that there will be a point where I'm just real and whole and healthy and not broken anymore.
As shitty as it's all been, that is still MY intention. I don't look at myself as this sickly, forever disabled person who will be trapped with this crap forever. My reality speaks to the contrary but maybe I'm an idiot. I do feel broken many, many days. It makes me sad. It's this weird feeling of losing life. Your 30s are FAR from old. This is prime time baby, and I don't have the body to make it happen. That pisses me off more than I can describe. You know when you get so drunk on Friday night and you sleep all day Saturday and all of a sudden it's Sunday and you are pissed that you basically missed your whole weekend? Well, that's my life. Saturday night I went out for a friend's birthday. I laid around all day to conserve energy so I would actually make it out(Yes, if I had so much as gone out to eat, run to the store etc... there would have been a good chance it just would have used my reserves and I would have bailed). We met for food(I didn't eat. Just not worth the risk) and then went to a bar with a DJ and a band for 80s night. We all had crimped hair and looked crazy and it was fun. We get there and the music was just so great. Those of you who know my drinking/partying/out all night/dance all night days know I loved it and it was my favorite thing to do. We would go dance for hours! Well, seriously two songs in and I'm lightheaded. I've got pain shooting through my abdomen. I'm just trying, trying to smother it and be ME and have fun. But I can only fake it so much. There were a couple points I thought I may hit the floor either from pain or exhaustion. In the middle of all those people smiling and dancing and drinking and LIVING, I was HATING myself. I just felt so broken. Like who the hell am I kidding? I almost left in that moment but I couldn't. I wanted to make it as long as I could because me being there was so rare. I don't go out and I don't even mean drinking or whatever. I don't really have many friends here or go to dinner or happy hour or yoga class or book club or whatever else normal, social people do.
Not too many years ago I had things to do every night. I was either out doing things with Dillan or out doing things with friends. I was rarely home. I have NEVER been a sit at home person. I was actually surprised I got invited because I had only met everyone once prior to being invited out. It felt nice. I didn't want to be lame and let my defective body win. So I milked my Captain and coke and danced as much as I could and had a lot of fun. I'm glad I went. I miss that part of me but indulging in the old me just casts resentment on the bullshit I deal with now.
Three years after filing for SSDI and being denied three times, I finally won at my hearing in August. So in two years my case will get reviewed to see if my heath has changed. It's a weird feeling. It felt good to win after fighting so long and them being so stupid in denying that IBD can affect a person's life so much. On the flip side, I don't think of myself as being so useless. Even though it's reality. I tried to work part time and I was in so much pain and it was so hard. To be this young and have the smallest things drain you is so difficult. <sigh>  But I guess it's nice to be justified in this way. I expect in two years at the review I'm going to be perfect, and healthy and as figured out and normal as possible and pick up my life where I left off a few years back. I have vacations to take and shit to do, people. Big time. I'm less than a month out from another surgery. I've got issues separate from that that I don't see resolving before then. So this should be interesting to say the least. Nothing I can do but meet it head on but it doesn't mean I have to like it. Thanks for listening to my boo-hooing. I've had over 10, 000 hits on my blog now. That amazes me, so thank you! XO

I guess my goal lately is to go at least a month in between posts. Not intentionally but it keeps happening. Pretty much health wise things are chugging along. Got another scope by a different doc to tell me the same thing as last time. Severe ulceration still. Some nasty fissures causing pain. Muscle spasms are back to piss me off. Couple that with the abdominal pain from my engorged fallopian tube and I'm just in pain daily. Basically nonstop. Discomfort in so many areas. There are days I'm not leaving the house unless necessary. My pain pills dull it and I'm content to be under my electric blanket and zoning out. Some days it takes everything out of me to go to class. Running errands wipes me out for the day. It's just so pathetic and ridiculous. I had to take Daughter #1 to the doctor and it struck me how much time in the last four years has been eaten up by my medical issues. I've put in some solid time. Time I could be traveling. Reading. Hell, vacuuming would be better. Ok, maybe not, but it's just such bullshit. I was driving along thinking what do I have to show for four years? Let's not reduce the importance of having my child, naturally, but really. Not much. A lot of laying on my ass with zero drive or with too much pain to accomplish anything. I got pissed. Just that angry, upset pissed and the tears just come.
I'm 36. My time has slipped through my fingers. So much of it without any joy in it. Just days of pain. Hospitals. Doctors. Driving to doctors. Filling scripts. Getting tests. I've fucking had it. There's nothing I can do either but keep going and keep thinking that there will be a point where I'm just real and whole and healthy and not broken anymore.
As shitty as it's all been, that is still MY intention. I don't look at myself as this sickly, forever disabled person who will be trapped with this crap forever. My reality speaks to the contrary but maybe I'm an idiot. I do feel broken many, many days. It makes me sad. It's this weird feeling of losing life. Your 30s are FAR from old. This is prime time baby, and I don't have the body to make it happen. That pisses me off more than I can describe. You know when you get so drunk on Friday night and you sleep all day Saturday and all of a sudden it's Sunday and you are pissed that you basically missed your whole weekend? Well, that's my life. Saturday night I went out for a friend's birthday. I laid around all day to conserve energy so I would actually make it out(Yes, if I had so much as gone out to eat, run to the store etc... there would have been a good chance it just would have used my reserves and I would have bailed). We met for food(I didn't eat. Just not worth the risk) and then went to a bar with a DJ and a band for 80s night. We all had crimped hair and looked crazy and it was fun. We get there and the music was just so great. Those of you who know my drinking/partying/out all night/dance all night days know I loved it and it was my favorite thing to do. We would go dance for hours! Well, seriously two songs in and I'm lightheaded. I've got pain shooting through my abdomen. I'm just trying, trying to smother it and be ME and have fun. But I can only fake it so much. There were a couple points I thought I may hit the floor either from pain or exhaustion. In the middle of all those people smiling and dancing and drinking and LIVING, I was HATING myself. I just felt so broken. Like who the hell am I kidding? I almost left in that moment but I couldn't. I wanted to make it as long as I could because me being there was so rare. I don't go out and I don't even mean drinking or whatever. I don't really have many friends here or go to dinner or happy hour or yoga class or book club or whatever else normal, social people do.
Not too many years ago I had things to do every night. I was either out doing things with Dillan or out doing things with friends. I was rarely home. I have NEVER been a sit at home person. I was actually surprised I got invited because I had only met everyone once prior to being invited out. It felt nice. I didn't want to be lame and let my defective body win. So I milked my Captain and coke and danced as much as I could and had a lot of fun. I'm glad I went. I miss that part of me but indulging in the old me just casts resentment on the bullshit I deal with now.
Three years after filing for SSDI and being denied three times, I finally won at my hearing in August. So in two years my case will get reviewed to see if my heath has changed. It's a weird feeling. It felt good to win after fighting so long and them being so stupid in denying that IBD can affect a person's life so much. On the flip side, I don't think of myself as being so useless. Even though it's reality. I tried to work part time and I was in so much pain and it was so hard. To be this young and have the smallest things drain you is so difficult. <sigh>  But I guess it's nice to be justified in this way. I expect in two years at the review I'm going to be perfect, and healthy and as figured out and normal as possible and pick up my life where I left off a few years back. I have vacations to take and shit to do, people. Big time. I'm less than a month out from another surgery. I've got issues separate from that that I don't see resolving before then. So this should be interesting to say the least. Nothing I can do but meet it head on but it doesn't mean I have to like it. Thanks for listening to my boo-hooing. I've had over 10, 000 hits on my blog now. That amazes me, so thank you! XO

Long and winding road....

Hey there. It's been some time since I've written. To be honest I just didn't want to write the same old crap because nothing has been changing. Life is still going on while I am still in pain, on meds, struggling through my days and trying to participate in life when I generally want to stay in bed. I have felt numb the last few months. Fed up with my issues. Feeling inadequate and like a failure. Feeling depressed and like a burden to my family. My two year old knows to find me in bed a lot. She's already used to the reality of her sick mom.
 Aside from summer life ending(pretty uneventful), potty training with Daughter #2,  Daughter #1 starting swim and school again, it's just been the same bullshit with me. It's really brought out the NY bitch in me quite a bit. I'm definitely no southern belle.

 One big, outstanding thing is that I had my Social Security Disability hearing in August and I won! Yep. After being denied since 2010 and being told I'm not sick despite surgeries, daily meds that make me less than able to function and chronic issues, I finally got in front of a judge who very quickly put forth judgement in my favor. I cried. It was a big deal. I'll finally be able to get some income while I'm figuring out how to get myself back in working order. The added stress of not contributing to my household didn't help my already unstable self worth. I'm not built to be dependent financially on someone. I'm just not that girl. I like my money. I like financial confidence. So this will help.
I feel like the fight went on forever. Redundant paperwork and bureaucratic nonsense. So obnoxious.
I've been having horrible abdominal pain aside from my other issues with the cuffitis and pouchitis. I am going to see some specialist at Baylor in Dallas as the meds and steroids are not doing much. And I'm basically immune to antibiotics at this point. I couldn't begin to count how many rounds I've been on over the last 4 years. It's nuts. There has been talk of a temporary ileostomy again to let my pouch and cuffitis get a time out and heal. So that surgery is looming on the horizon.
I had a CT scan last month which showed a mass and according to my colorectal surgeon it is nothing gut related so referred me to my Gyno. I got an ultrasound with my Gyno and apparently my left fallopian tube is blown up like a sausage and needs to come out. Yippee-- more surgery! I know.. everyone is so surprised. I'm going to run out of organs. A fallopian tube is about the size around as a piece of uncooked spaghetti. Mine is blown up to almost 2cm. 3/4 of an inch. So since she was going in for one, she was just going to take both. Apparently there is a lot of info out now showing that ovarian cancer starts in the tubes anyway and since I've had a tubal there's no point finding out why this is happening so we are just eliminating the problem. We also discussed my autoimmune issues, my dysplasia history and the fact that many women with IBD also have related female issues as a result. If I end up having more GI surgery it will increase my chances of adhesions and could lead to more pelvic issues so in the end my Gyno and I decided to clean me out. Everything but the ovaries are going because I'm so pre menopausal and it would be silly to put me on Hormone Replacement while I'm dealing with all these other meds. So I'm getting opened up AGAIN. Is it weird it doesn't bother me? Doesn't even phase me in the slightest.
When my Gyno saw the ultrasound she just matter of fact said she had to go in and get the tube out. I shrugged and said, "I figured". That's how nonchalant surgery and hospitalization is now. It's not even rational but it's my life.
I've been saying for a while that I'm used to pain. Well, it's not that I'm used to it as it's just such a normal part of every single day. It's expected. I'm used to it's presence not the actual pain. That sucks no matter what.
Pain changes you. It really does break down your spirit. So much of being sick isn't in the physical as it's in the mental fight. The fight to maintain yourself despite hurting, giving up activities and just all in all having your life become almost unrecognizable. I am, at times, unrecognizable. My lack of energy and lack of involvement in things is not who I am. Well, not who I was. It's a struggle and a process to not let your head stay in the "old" you. It's a process to accept and adjust to who you have become. It's hard to come up with the right words to explain that but for a long time who I was in my head did not match what my body had become. I'm 35 years old and that depresses the shit out of me. I can't just take off running. Firstly, I have zero muscle strength from my daily fatigue and not using my body. I am chronically dehydrated from that whole no colon thing. Pushing myself through the pain is the easy part. You do what you have to but it's just different when your body CAN'T. I mentally prepare for the littlest things. Things most people take for granted. Getting in and out of the car hurts. My sleep sucks and I'm up for hours every night. Getting groceries will wipe me out until the next day. It's stupid. Just 100% stupid.
I have many days I just cry at the realization that life just carries on. It is not stopping until I am healthy again. I'll be 36 this week. I'm not kidding when I say I have lost the last few years of my life. Those years haven't been mine no matter how hard I battled to control it and live it. The last 4 years have belonged to my illness. Hey, I'm playing the hand I'm dealt because that's all I can do, but I don't have to like my shitty hand. I haven't lived. I've been going through the motions the best I can given the circumstances. It's very upsetting. What's more upsetting are the people who are healthy and go through life the same way. They have no limitations, nothing holding them back but themselves yet they are content to not fully embrace everything. I'd trade one day with them at this point because I'm just so fed up. I'm ready to become bionic and be done with it.
So that's my update from the last month and a half. Just more twists and turns and yet, it's all the same. I'm not sure how that can be but it is. I want more. I'm not satisfied with what's going on. I'm not satisfied with the turns my life has been taking. It is truly hard to fight for more, for extraordinary, when it takes everything you have to fight to be normal. To go to dinner, to do a load of laundry, to blow dry my damn hair. Touring Europe really isn't in the cards when a 45 minute car ride wipes me out.
As I'm getting older the famous "Bucket List" is getting longer but I'm feeling less confident any of it will happen. And not to be an asshole, but I deserve it. This shit has been long, and exhausting and excruciating and I deserve a fucking yacht vacation in Greece and unlimited wine in Italy. So help me.... my road keeps winding and if it's the last thing I do, I'm going to pave it EXACTLY where I WANT it to go.
Hope everyone is well. Thanks for reading.
Read, love, share.
XO

Hey there. It's been some time since I've written. To be honest I just didn't want to write the same old crap because nothing has been changing. Life is still going on while I am still in pain, on meds, struggling through my days and trying to participate in life when I generally want to stay in bed. I have felt numb the last few months. Fed up with my issues. Feeling inadequate and like a failure. Feeling depressed and like a burden to my family. My two year old knows to find me in bed a lot. She's already used to the reality of her sick mom.
 Aside from summer life ending(pretty uneventful), potty training with Daughter #2,  Daughter #1 starting swim and school again, it's just been the same bullshit with me. It's really brought out the NY bitch in me quite a bit. I'm definitely no southern belle.

 One big, outstanding thing is that I had my Social Security Disability hearing in August and I won! Yep. After being denied since 2010 and being told I'm not sick despite surgeries, daily meds that make me less than able to function and chronic issues, I finally got in front of a judge who very quickly put forth judgement in my favor. I cried. It was a big deal. I'll finally be able to get some income while I'm figuring out how to get myself back in working order. The added stress of not contributing to my household didn't help my already unstable self worth. I'm not built to be dependent financially on someone. I'm just not that girl. I like my money. I like financial confidence. So this will help.
I feel like the fight went on forever. Redundant paperwork and bureaucratic nonsense. So obnoxious.
I've been having horrible abdominal pain aside from my other issues with the cuffitis and pouchitis. I am going to see some specialist at Baylor in Dallas as the meds and steroids are not doing much. And I'm basically immune to antibiotics at this point. I couldn't begin to count how many rounds I've been on over the last 4 years. It's nuts. There has been talk of a temporary ileostomy again to let my pouch and cuffitis get a time out and heal. So that surgery is looming on the horizon.
I had a CT scan last month which showed a mass and according to my colorectal surgeon it is nothing gut related so referred me to my Gyno. I got an ultrasound with my Gyno and apparently my left fallopian tube is blown up like a sausage and needs to come out. Yippee-- more surgery! I know.. everyone is so surprised. I'm going to run out of organs. A fallopian tube is about the size around as a piece of uncooked spaghetti. Mine is blown up to almost 2cm. 3/4 of an inch. So since she was going in for one, she was just going to take both. Apparently there is a lot of info out now showing that ovarian cancer starts in the tubes anyway and since I've had a tubal there's no point finding out why this is happening so we are just eliminating the problem. We also discussed my autoimmune issues, my dysplasia history and the fact that many women with IBD also have related female issues as a result. If I end up having more GI surgery it will increase my chances of adhesions and could lead to more pelvic issues so in the end my Gyno and I decided to clean me out. Everything but the ovaries are going because I'm so pre menopausal and it would be silly to put me on Hormone Replacement while I'm dealing with all these other meds. So I'm getting opened up AGAIN. Is it weird it doesn't bother me? Doesn't even phase me in the slightest.
When my Gyno saw the ultrasound she just matter of fact said she had to go in and get the tube out. I shrugged and said, "I figured". That's how nonchalant surgery and hospitalization is now. It's not even rational but it's my life.
I've been saying for a while that I'm used to pain. Well, it's not that I'm used to it as it's just such a normal part of every single day. It's expected. I'm used to it's presence not the actual pain. That sucks no matter what.
Pain changes you. It really does break down your spirit. So much of being sick isn't in the physical as it's in the mental fight. The fight to maintain yourself despite hurting, giving up activities and just all in all having your life become almost unrecognizable. I am, at times, unrecognizable. My lack of energy and lack of involvement in things is not who I am. Well, not who I was. It's a struggle and a process to not let your head stay in the "old" you. It's a process to accept and adjust to who you have become. It's hard to come up with the right words to explain that but for a long time who I was in my head did not match what my body had become. I'm 35 years old and that depresses the shit out of me. I can't just take off running. Firstly, I have zero muscle strength from my daily fatigue and not using my body. I am chronically dehydrated from that whole no colon thing. Pushing myself through the pain is the easy part. You do what you have to but it's just different when your body CAN'T. I mentally prepare for the littlest things. Things most people take for granted. Getting in and out of the car hurts. My sleep sucks and I'm up for hours every night. Getting groceries will wipe me out until the next day. It's stupid. Just 100% stupid.
I have many days I just cry at the realization that life just carries on. It is not stopping until I am healthy again. I'll be 36 this week. I'm not kidding when I say I have lost the last few years of my life. Those years haven't been mine no matter how hard I battled to control it and live it. The last 4 years have belonged to my illness. Hey, I'm playing the hand I'm dealt because that's all I can do, but I don't have to like my shitty hand. I haven't lived. I've been going through the motions the best I can given the circumstances. It's very upsetting. What's more upsetting are the people who are healthy and go through life the same way. They have no limitations, nothing holding them back but themselves yet they are content to not fully embrace everything. I'd trade one day with them at this point because I'm just so fed up. I'm ready to become bionic and be done with it.
So that's my update from the last month and a half. Just more twists and turns and yet, it's all the same. I'm not sure how that can be but it is. I want more. I'm not satisfied with what's going on. I'm not satisfied with the turns my life has been taking. It is truly hard to fight for more, for extraordinary, when it takes everything you have to fight to be normal. To go to dinner, to do a load of laundry, to blow dry my damn hair. Touring Europe really isn't in the cards when a 45 minute car ride wipes me out.
As I'm getting older the famous "Bucket List" is getting longer but I'm feeling less confident any of it will happen. And not to be an asshole, but I deserve it. This shit has been long, and exhausting and excruciating and I deserve a fucking yacht vacation in Greece and unlimited wine in Italy. So help me.... my road keeps winding and if it's the last thing I do, I'm going to pave it EXACTLY where I WANT it to go.
Hope everyone is well. Thanks for reading.
Read, love, share.
XO

#sickmomfail

Guilt. So much guilt comes with being chronically sick and in pain. This is the summer of #sickmomfail. Last summer I was recovering from surgery. This summer was supposed to be my "all in" summer. Nope. In pain. Stoned on pain meds. Laying on my bed playing word games on my phone. I can't imagine being sick like this prior to the digital age. I would have gone nuts. Daughter #1 loves to just GO... and I'm in park. As in parked on my sore ass. I feel like my chronic lameness makes her sad. I know she gets so disappointed. I hate it. I hate not being me. I feel trapped in a body that is defying me. I'm not eating much. I feel lethargic from meds. But let me back up a minute.
I left off needing to see my surgeon about my biopsy and scope results.  So I went last Wednesday and naturally there couldn't be good news. The basic rundown is as follows: I have Pouchitis in my JPouch. I have inflammation and ulceration of the 1cm that's left of my rectum, called the rectal cuff. So it's Cuffitis. My fistula that was opened is still healing and open and painful. And the cherry on top is that I have dysplasia somewhere up in there. By the time he got to that I was upset and didn't get the specifics of where. For those who don't know, dysplasia is abnormal cell growth. Often it is precancerous in nature so the area needs to be taken care of so it doesn't progress to cancer. For those that haven't been reading my blog, I had advanced cervical dysplasia over about 50% of my cervix in 2011 and had to have the area scraped away to prevent it from manifesting into cancer. So now I'm dealing with it somewhere else. Seriously..I have zero shame and modesty left. This must be how porn stars feel... nothing left to hide. So, now my surgeon wants to confer with some super specialist and double check the labs and maybe re-scope me and take new biopsies. HOW FUN!!! WoooooHoooooo! What a fan-fucking-tastic summer so far.
So, now I'm back on a steroid three times a day. This time Entocort. So far I don't notice much change other than the night sweats and being on edge 24/7. I'm used to being on Prednisone which kicks in fast so I know I'm being impatient. I'm also using a nightly suppository which is just a regular party in my ass. Yeah--- so painful, open wound ass and I need to put that through that. It SUCKS. Big time. It's hard too. Like plastic. So all you "I do anal stuff for sexy fun" people are OUT OF YOUR DAMN MINDS. Holy shit. Never.
I'm also still taking Norco for pain and Flagyl for the pouchitis. So, that's my day. Pill popping. Barely eating because it's just not worth it right now. It is truly a big struggle to pull myself together and be normal. I'm not succeeding. I feel useless. I am sad. I hate disappointing my kids. Lots of movies with Daughter #1. I feel so guilty not being 100%. I would love to run around. Can't swim because of the fistula healing. Can't ride bikes. Hurts to move a whole lot. Hurts to sit. The pain pills that normally knock me out at night are now fighting against the steroid induced night sweats. That's a lot of fun. :-/
My big outings have been a swim meet, fireworks on the 4th and the drive in movie. The last two I was parked in the back of Hub's truck trying to stay comfortable. Not an easy thing to do. So yeah. It's been tough. I need to find out where we go from here. I will have to be scoped again and they will need to surgically remove all the precancer cells and then monitor me. For now just trying to get rid of the pouchitis and treat the cuffitis that is causing me pain and issues. And I'm starving. I love food and this sucks. I had some rice yesterday and some marshmallows. I think that's it. But I had made a tomato cream sauce the night before and ate it and was in MISERY all that night into yesterday so that makes me pull back on eating. I knew acidic tomato would be bad, but I just wanted to EAT! It's really hard to cook and NOT eat what you made. It was yummy but it made me want to die for 6-12 hours later. NOT WORTH IT! But I'll do it again. It's hard just not eating what you like. Or cooking one thing and knowing you are eating something lame. It erases any motivation to make something. So at 4pm when I have no dinner plan, it sucks. I know all IBDers struggle with this. We just want something real and want what we want. If we feel ok we push the envelope and we suffer. I'm no exception. My diet is crap. Many fruits are bad. Most vegetables. I could live on potato chips and junk and be fine. One helping of something healthy and I'm in misery. I never thought I'd miss salad so much. And broccoli. It's ridiculous.
Enjoy your day everyone. Run and play with your kids. Or without your kids. Take advantage of being able to just 'Do'. When you can't it royally sucks.

Guilt. So much guilt comes with being chronically sick and in pain. This is the summer of #sickmomfail. Last summer I was recovering from surgery. This summer was supposed to be my "all in" summer. Nope. In pain. Stoned on pain meds. Laying on my bed playing word games on my phone. I can't imagine being sick like this prior to the digital age. I would have gone nuts. Daughter #1 loves to just GO... and I'm in park. As in parked on my sore ass. I feel like my chronic lameness makes her sad. I know she gets so disappointed. I hate it. I hate not being me. I feel trapped in a body that is defying me. I'm not eating much. I feel lethargic from meds. But let me back up a minute.
I left off needing to see my surgeon about my biopsy and scope results.  So I went last Wednesday and naturally there couldn't be good news. The basic rundown is as follows: I have Pouchitis in my JPouch. I have inflammation and ulceration of the 1cm that's left of my rectum, called the rectal cuff. So it's Cuffitis. My fistula that was opened is still healing and open and painful. And the cherry on top is that I have dysplasia somewhere up in there. By the time he got to that I was upset and didn't get the specifics of where. For those who don't know, dysplasia is abnormal cell growth. Often it is precancerous in nature so the area needs to be taken care of so it doesn't progress to cancer. For those that haven't been reading my blog, I had advanced cervical dysplasia over about 50% of my cervix in 2011 and had to have the area scraped away to prevent it from manifesting into cancer. So now I'm dealing with it somewhere else. Seriously..I have zero shame and modesty left. This must be how porn stars feel... nothing left to hide. So, now my surgeon wants to confer with some super specialist and double check the labs and maybe re-scope me and take new biopsies. HOW FUN!!! WoooooHoooooo! What a fan-fucking-tastic summer so far.
So, now I'm back on a steroid three times a day. This time Entocort. So far I don't notice much change other than the night sweats and being on edge 24/7. I'm used to being on Prednisone which kicks in fast so I know I'm being impatient. I'm also using a nightly suppository which is just a regular party in my ass. Yeah--- so painful, open wound ass and I need to put that through that. It SUCKS. Big time. It's hard too. Like plastic. So all you "I do anal stuff for sexy fun" people are OUT OF YOUR DAMN MINDS. Holy shit. Never.
I'm also still taking Norco for pain and Flagyl for the pouchitis. So, that's my day. Pill popping. Barely eating because it's just not worth it right now. It is truly a big struggle to pull myself together and be normal. I'm not succeeding. I feel useless. I am sad. I hate disappointing my kids. Lots of movies with Daughter #1. I feel so guilty not being 100%. I would love to run around. Can't swim because of the fistula healing. Can't ride bikes. Hurts to move a whole lot. Hurts to sit. The pain pills that normally knock me out at night are now fighting against the steroid induced night sweats. That's a lot of fun. :-/
My big outings have been a swim meet, fireworks on the 4th and the drive in movie. The last two I was parked in the back of Hub's truck trying to stay comfortable. Not an easy thing to do. So yeah. It's been tough. I need to find out where we go from here. I will have to be scoped again and they will need to surgically remove all the precancer cells and then monitor me. For now just trying to get rid of the pouchitis and treat the cuffitis that is causing me pain and issues. And I'm starving. I love food and this sucks. I had some rice yesterday and some marshmallows. I think that's it. But I had made a tomato cream sauce the night before and ate it and was in MISERY all that night into yesterday so that makes me pull back on eating. I knew acidic tomato would be bad, but I just wanted to EAT! It's really hard to cook and NOT eat what you made. It was yummy but it made me want to die for 6-12 hours later. NOT WORTH IT! But I'll do it again. It's hard just not eating what you like. Or cooking one thing and knowing you are eating something lame. It erases any motivation to make something. So at 4pm when I have no dinner plan, it sucks. I know all IBDers struggle with this. We just want something real and want what we want. If we feel ok we push the envelope and we suffer. I'm no exception. My diet is crap. Many fruits are bad. Most vegetables. I could live on potato chips and junk and be fine. One helping of something healthy and I'm in misery. I never thought I'd miss salad so much. And broccoli. It's ridiculous.
Enjoy your day everyone. Run and play with your kids. Or without your kids. Take advantage of being able to just 'Do'. When you can't it royally sucks.

Unexpected recovery.

Well, in my last post I talked about getting scoped to check for fistulas, fissures etc... Tuesday morning came and I was STARVING after being on fluids all day Monday.

Ready to go. A simple scope, right?

 I couldn't wait to eat after my scope. It's always one of my favorite meals because you realize how great food is after spending two days on chicken broth.

My view of the lights in the OR. Just hanging out, waiting. 

Well, imagine my surprise(horror) when I woke up from anesthesia in absolute, excruciating pain and in tears. Waking up crying isn't exactly normal. I was there alone b/c I've had so many scopes that it is nothing to me, so I had told Hubs to leave and just head back when they call that I'm in recovery. I was my surgeon's last procedure before he left to have his office hours and was still out when he checked in before he left. So in my fog, I heard the nurse say something about surgery, she handed me a Lortab and then said she was calling my surgeon. I was just laying there crying... Not to be completely ridiculous but it felt like someone drove a car up my ass. After 20 minutes the Lortab had done nothing. At that point I was wishing for post delivery pain from having my kids. Lovely. So I vaguely hear her on the phone. She returned like an angel with a push of Demerol for my IV, so within 5 seconds I was a happy and completely stoned girl. Hubs shows up and talks to my surgeon. He discovered a few issues while doing the scope. Ulcers and inflammation in the 1cm of what's left of my rectum and anal fistulas. Now, if you were a good student and googled 'fistulas' like I said, you would have found out that they are essentially an infection that burrows and fills with pus below the surface. As you can imagine, pockets of that can cause the extreme pain I had been dealing with for MONTHS.  Sexy, I know... settle down!! I am one lucky bitch!!
 So the only way to treat these disgusting things is to open them up and clean them out and let them drain. Antibiotics don't work. So, yeah. I woke up to that having been done to my ass. And he took a bunch of biopsies as well because of the inflammation. I'm actually kinda thankful he just did it while he had me there. The procedure cost $1200 so having had to go back and pay that again would have pissed me off. As it is I feel like someone should have paid ME for having to go through that shit. Just disgusting. I mean, prior to me getting sick I never even knew this kind of crap existed for people. I suppose that's why I talk about it.
Needless to say, my Norcos have been my best friend since Wednesday. Tuesday I was out for the count for the rest of the day which I'm used to. Anesthesia has always done that which I don't mind.
It has been pretty painful this week. Walking around is nearly impossible. Squatting, sitting... I can't lift for another week while this crap heals. I'm afraid to eat because you can imagine how fun going to the bathroom is with all that nonsense going on... so it's been pretty cool. Not at all.
So yeah, the last few weeks have really sucked. Last night I got the coolest message from a friend I haven't seen in years... He said my blog was like me- "honest and awesome". I have to say, that made my night. It's funny how you may think someone may not even consider you at all...and then have them say something so great like that. I don't know. It was just pretty cool. So, to my friend, thank you for that. =)

Trying to make recovery look easy.

I'm hoping the next few days has the pain tapering off. I see my Surgeon on the 3rd so I will get all my biopsy results back. He's assuming it will be Proctitis and not Crohn's like we feared. I'm just preparing for the worst anyway. It tends to make the reality easier. Regardless, this means I will be going on meds  of some type. Possibly a steroid. None of that is making me happy because the whole reason I went with getting gutted was to avoid pumping myself full of meds forever. <sigh> Such complete bullshit. Like really, that 1cm has to give me trouble after getting over 5 feet of guts removed. Ridiculous. Sneaky disease. I'm still going to shut you down. It might take me another 5 years. Whatever. But I'm going to win. I always win. ;-)
Thanks for reading... go out and run around and eat a bunch of food, and drink some beer for me, ok? Sweet! I appreciate it.

Well, in my last post I talked about getting scoped to check for fistulas, fissures etc... Tuesday morning came and I was STARVING after being on fluids all day Monday.

Ready to go. A simple scope, right?

 I couldn't wait to eat after my scope. It's always one of my favorite meals because you realize how great food is after spending two days on chicken broth.

My view of the lights in the OR. Just hanging out, waiting. 

Well, imagine my surprise(horror) when I woke up from anesthesia in absolute, excruciating pain and in tears. Waking up crying isn't exactly normal. I was there alone b/c I've had so many scopes that it is nothing to me, so I had told Hubs to leave and just head back when they call that I'm in recovery. I was my surgeon's last procedure before he left to have his office hours and was still out when he checked in before he left. So in my fog, I heard the nurse say something about surgery, she handed me a Lortab and then said she was calling my surgeon. I was just laying there crying... Not to be completely ridiculous but it felt like someone drove a car up my ass. After 20 minutes the Lortab had done nothing. At that point I was wishing for post delivery pain from having my kids. Lovely. So I vaguely hear her on the phone. She returned like an angel with a push of Demerol for my IV, so within 5 seconds I was a happy and completely stoned girl. Hubs shows up and talks to my surgeon. He discovered a few issues while doing the scope. Ulcers and inflammation in the 1cm of what's left of my rectum and anal fistulas. Now, if you were a good student and googled 'fistulas' like I said, you would have found out that they are essentially an infection that burrows and fills with pus below the surface. As you can imagine, pockets of that can cause the extreme pain I had been dealing with for MONTHS.  Sexy, I know... settle down!! I am one lucky bitch!!
 So the only way to treat these disgusting things is to open them up and clean them out and let them drain. Antibiotics don't work. So, yeah. I woke up to that having been done to my ass. And he took a bunch of biopsies as well because of the inflammation. I'm actually kinda thankful he just did it while he had me there. The procedure cost $1200 so having had to go back and pay that again would have pissed me off. As it is I feel like someone should have paid ME for having to go through that shit. Just disgusting. I mean, prior to me getting sick I never even knew this kind of crap existed for people. I suppose that's why I talk about it.
Needless to say, my Norcos have been my best friend since Wednesday. Tuesday I was out for the count for the rest of the day which I'm used to. Anesthesia has always done that which I don't mind.
It has been pretty painful this week. Walking around is nearly impossible. Squatting, sitting... I can't lift for another week while this crap heals. I'm afraid to eat because you can imagine how fun going to the bathroom is with all that nonsense going on... so it's been pretty cool. Not at all.
So yeah, the last few weeks have really sucked. Last night I got the coolest message from a friend I haven't seen in years... He said my blog was like me- "honest and awesome". I have to say, that made my night. It's funny how you may think someone may not even consider you at all...and then have them say something so great like that. I don't know. It was just pretty cool. So, to my friend, thank you for that. =)

Trying to make recovery look easy.

I'm hoping the next few days has the pain tapering off. I see my Surgeon on the 3rd so I will get all my biopsy results back. He's assuming it will be Proctitis and not Crohn's like we feared. I'm just preparing for the worst anyway. It tends to make the reality easier. Regardless, this means I will be going on meds  of some type. Possibly a steroid. None of that is making me happy because the whole reason I went with getting gutted was to avoid pumping myself full of meds forever. <sigh> Such complete bullshit. Like really, that 1cm has to give me trouble after getting over 5 feet of guts removed. Ridiculous. Sneaky disease. I'm still going to shut you down. It might take me another 5 years. Whatever. But I'm going to win. I always win. ;-)
Thanks for reading... go out and run around and eat a bunch of food, and drink some beer for me, ok? Sweet! I appreciate it.

Invisibly sick... a day in my life.

So people always talk about Invisible Illnesses. IBD has that funny way of being one. You don't always look sick. Currently I'm not anemic so I'm not pale. I'm thin but not malnourished and sickly thin. I'm not weak and run down so I have what looks like normal energy levels. I'm no longer on steroids that puff my face up. I'm not on immunosuppressants that make my hair fall out. On the surface I look fine. If you didn't know, you wouldn't know. So I'm sure there are plenty of people rolling their eyes if I say I have pain or who are doubtful about why I haven't worked in years or why when I finally was feeling better and got a job, I got taken out for two weeks. I suppose it's all very easy to doubt and to not believe. Those who have had chronic pain understand. Those with IBD understand. You have weeks, months of feeling "normal" for the first time and think you have finally crossed that bridge. Then you realize you haven't even gotten there yet. I've written about the IBD stuff often enough that people get how it affects lives. Now, post surgery, a year out from colectomy I am frustrated. I am in pain. It hurts to stand, to walk, to move around. It hurts to wear anything but granny panties and sweats. It hurts to pee. I've been eating less so I won't go to the bathroom. I'm taking pain meds and muscle relaxers and topical creams to lessen my misery. No one can see any of that. No one looks at me and has any idea how much pain and discomfort I'm in while I'm carrying on the most random conversation about nothing. Google 'anal fissures'. Google 'anal fistulas'. It's horrible. Click on 'images' and it gets even better. It is graphic. They are things you probably never even considered existed. Hemorrhoids, yes maybe, but the issues that can crop up down there with IBD just aren't talked about. The whole fissure situation was bad enough...seriously. But with fistulas it's an entirely different scenario. That means surgery. More pain. I'm not here to gross you out but if you went and googled like I said to, you can only imagine. Of course many of those images are VERY extreme. But my point is, sickness can be invisible. Pain is invisible and easily hidden by those who are accustomed to having it daily. So before you pass judgement on people who 'don't look sick', you should also consider what you can't see. Issues that you'll never even consider being a possibility in life that someone right in front of you has going on. I don't know. I feel like it's been a very weird few years of my brain and body battling it out and my body winning a lot. It has been hard being in my early 30s and having to say I just don't work. I'm sure to many that sounds like a dream or is their reality, but when it's not a choice, it's different. I'm not just choosing to stay home with my kids. I'm not just choosing to be dependent on Hubs. I'm not lazy or feel like a man has to take care of me. It has not been a realistic possibility for me to work since 2010. And honestly I probably should have stopped prior to that because work was affecting my health immensely but I didn't.  I don't know where I wanted to go with this post other than to say, sometimes it just really sucks to not be in control. To be limited in your capacities and abilities and independence really sucks. It's the Anti-Lisa. And I'm tired of it. Life really does have a way of laughing at your plan. No matter how much a perfect plan or life you have plotted out, in the end you don't have very much control over it like you think. You get dealt one bad health situation and it affects you for years. You just never know what's around the corner and that goes for positive things as well. I just try to play the hand I'm dealt. I try to make the best decisions for right now, for today, because that's the only thing I'm sure of. Tomorrow may prove me wrong... I guess I'll wait and see.

So people always talk about Invisible Illnesses. IBD has that funny way of being one. You don't always look sick. Currently I'm not anemic so I'm not pale. I'm thin but not malnourished and sickly thin. I'm not weak and run down so I have what looks like normal energy levels. I'm no longer on steroids that puff my face up. I'm not on immunosuppressants that make my hair fall out. On the surface I look fine. If you didn't know, you wouldn't know. So I'm sure there are plenty of people rolling their eyes if I say I have pain or who are doubtful about why I haven't worked in years or why when I finally was feeling better and got a job, I got taken out for two weeks. I suppose it's all very easy to doubt and to not believe. Those who have had chronic pain understand. Those with IBD understand. You have weeks, months of feeling "normal" for the first time and think you have finally crossed that bridge. Then you realize you haven't even gotten there yet. I've written about the IBD stuff often enough that people get how it affects lives. Now, post surgery, a year out from colectomy I am frustrated. I am in pain. It hurts to stand, to walk, to move around. It hurts to wear anything but granny panties and sweats. It hurts to pee. I've been eating less so I won't go to the bathroom. I'm taking pain meds and muscle relaxers and topical creams to lessen my misery. No one can see any of that. No one looks at me and has any idea how much pain and discomfort I'm in while I'm carrying on the most random conversation about nothing. Google 'anal fissures'. Google 'anal fistulas'. It's horrible. Click on 'images' and it gets even better. It is graphic. They are things you probably never even considered existed. Hemorrhoids, yes maybe, but the issues that can crop up down there with IBD just aren't talked about. The whole fissure situation was bad enough...seriously. But with fistulas it's an entirely different scenario. That means surgery. More pain. I'm not here to gross you out but if you went and googled like I said to, you can only imagine. Of course many of those images are VERY extreme. But my point is, sickness can be invisible. Pain is invisible and easily hidden by those who are accustomed to having it daily. So before you pass judgement on people who 'don't look sick', you should also consider what you can't see. Issues that you'll never even consider being a possibility in life that someone right in front of you has going on. I don't know. I feel like it's been a very weird few years of my brain and body battling it out and my body winning a lot. It has been hard being in my early 30s and having to say I just don't work. I'm sure to many that sounds like a dream or is their reality, but when it's not a choice, it's different. I'm not just choosing to stay home with my kids. I'm not just choosing to be dependent on Hubs. I'm not lazy or feel like a man has to take care of me. It has not been a realistic possibility for me to work since 2010. And honestly I probably should have stopped prior to that because work was affecting my health immensely but I didn't.  I don't know where I wanted to go with this post other than to say, sometimes it just really sucks to not be in control. To be limited in your capacities and abilities and independence really sucks. It's the Anti-Lisa. And I'm tired of it. Life really does have a way of laughing at your plan. No matter how much a perfect plan or life you have plotted out, in the end you don't have very much control over it like you think. You get dealt one bad health situation and it affects you for years. You just never know what's around the corner and that goes for positive things as well. I just try to play the hand I'm dealt. I try to make the best decisions for right now, for today, because that's the only thing I'm sure of. Tomorrow may prove me wrong... I guess I'll wait and see.

The mask I wear...

Well, I've been meaning to bang this bitch fest out for a few days so here goes...
I HATE IBD. I HATE what it has done to my body and my life. I HATE being THAT girl who can't hold up her end of the deal because I have no idea when my body wil decide to betray me. I HATE being forever changed. Even though being sick has taught me a lot about myself and has revealed a strength and resolve I never knew I had, I kinda liked me the way I was. I don't think I needed to learn that I could endure this much pain. If I never had it, I think I would still be kick ass and living my life my way like Hurricane Lisa does. Instead, I got sidetracked and held back along with the lesson. The last 10 days have been unbearable for me. Besides the wonderful rectal spasms that are in a pain category all their own, I developed yet another horrible rash. IBDers call it butt burn but this is butt burn times 100. It is full on adult diaper rash. No wonder babies scream bloody murder with rashes. Holy shit, it hurts. My skin is so raw it's weeping. I have cut back my food and my fluids because going to the bathroom is pure torture. Even peeing. Your pee is acidic. That on raw skin can make you cry. And it has. I go through all of this with a smile on my face. With my makeup done, and my hair blow dried and a cute outfit on. I crack jokes as my facade. I'm due a mother effing Oscar is what it is.
Someone in one of my IBD groups on Facebook had commented this weekend that a picture I posted showed me looking happy and healthy. It's all bullshit. Smoke and mirrors. Urban Decay concealer and some great highlighter. Here's me faking everything being swell while I'm in pain just sitting down.

Concealer, bronzer, highlighter and Norco= fake health. 

My dad was in town for Father's Day. I wasn't about to let my pain control his trip. We went to dinner. I smiled and took pictures on Father's Day while on the inside I was cringing and in pain. My head a fog of pain killers and muscle relaxers just to allow me to function at a basic level. Moving sends pain searing through my body. I reapply my lipgloss and smile and make a joke. It's such a game. It's such bullshit. I want my life back. I don't want to leave work early because I'm in pain. I freaking HATE it. And I'm skinny. I'm at the lowest end of a healthy weight for 5'3". A few days of pain and I drop 5-8 pounds because as it is I absorb nothing. But I look great. I'm so skinny. I'm so lucky. Oh yeah--- Soooooo lucky. :|  I can buy clothes in the girls department and I lost my tits. Yeah- I lucked the hell right out with the big ole IBD lottery. Ugh--- I'd trade all this crap for 40 pounds and a properly functioning body.
So my surgeon was out of town last week and I finally got in to see him today at 5.

Just a normal day. Waiting for more pain at the surgeon's. 

 I need to get my pouch scoped because he doesn't feel the CT AND the MRI were comprehensive enough to figure out what's going on. I'm in too much pain. Spasms won't stop. My pouch surgery was textbook and now to have all this post OP shit is ridiculous. My surgeon says to me tonight that all my issues are issues that are present with Crohn's. CROHN'S. No. I refuse to accept that until there is something to substantiate it. I was tested and retested and biopsied within an inch of my life and NOTHING ever pointed to Crohn's. My surgeon had my small intestines IN HIS HANDS on purpose last May to triple check. I got gutted and cut wide open instead of doing it laproscopically so that he could better check my small bowel before gutting me.
I just don't know. So I get to go have my pouch checked out at Baylor with my surgeon, his partner and some other superman colo-rectal guy so they can all use me as a science experiment and try to problem solve. Luckily, I don't have any modesty left whatsoever so 3 grown men scoping my ass is just another day for me.
It is days like today where I feel this tiny pull telling me to go back to my ileostomy. Yes...seriously. Where many feel ostomies are a death sentence, I would actually consider going back.
I'm emotionally exhausted. I'm physically shutting down some days. I don't sleep from pain. I feel like I've been fighting an internal war for 4 years. How do I hang on? How do I get up everyday and bother faking it and keep going. Wouldn't it be easier to stay in bed, screw wearing makeup and putting an outfit together. Wouldn't that be more reflective of "sick"?? Sure. But I know that's not me. IBD may be destroying my body but I try so hard to stop it from destroying who I am. I give up a lot as it is. I don't feel independent anymore. Well, I'm not. I went back to work to try to regain some of it and it is a daily battle every time I have to go in. That's not me. I keep trying to force myself back into a Lisa that isn't really there anymore. And I'm stubborn and just keep trying.  I rely on Mat so much. He went out on a whim yesterday and got a new truck. I want to do that. I'm so afraid I'm stuck in this dependent state forever because these issues won't end. I hate putting that on him too. It's not fair to him. I could go around and around. It won't change anything right now. I just need to face the reality head on and make the most of it. In the meantime, my Disability hearing is finally in August. Yeah, over a year after it was requested because I got denied 3 times because I should have had no problem working fulltime while I was hemorrhaging blood daily about 30 times a day. Yeah- sounds completely doable to be holding a job with that going on.
Ok, I'm ending on this because the pain meds are kicked in. My surgeon took me off work for two weeks while I get tested, scoped and so my skin can heal. He wants me basically doing nothing to try to keep the spasms at bay and help my skin heal. <Sigh>  Defective. I feel like a defective burden. I don't know how much more I can take.
Good night all....

Well, I've been meaning to bang this bitch fest out for a few days so here goes...
I HATE IBD. I HATE what it has done to my body and my life. I HATE being THAT girl who can't hold up her end of the deal because I have no idea when my body wil decide to betray me. I HATE being forever changed. Even though being sick has taught me a lot about myself and has revealed a strength and resolve I never knew I had, I kinda liked me the way I was. I don't think I needed to learn that I could endure this much pain. If I never had it, I think I would still be kick ass and living my life my way like Hurricane Lisa does. Instead, I got sidetracked and held back along with the lesson. The last 10 days have been unbearable for me. Besides the wonderful rectal spasms that are in a pain category all their own, I developed yet another horrible rash. IBDers call it butt burn but this is butt burn times 100. It is full on adult diaper rash. No wonder babies scream bloody murder with rashes. Holy shit, it hurts. My skin is so raw it's weeping. I have cut back my food and my fluids because going to the bathroom is pure torture. Even peeing. Your pee is acidic. That on raw skin can make you cry. And it has. I go through all of this with a smile on my face. With my makeup done, and my hair blow dried and a cute outfit on. I crack jokes as my facade. I'm due a mother effing Oscar is what it is.
Someone in one of my IBD groups on Facebook had commented this weekend that a picture I posted showed me looking happy and healthy. It's all bullshit. Smoke and mirrors. Urban Decay concealer and some great highlighter. Here's me faking everything being swell while I'm in pain just sitting down.

Concealer, bronzer, highlighter and Norco= fake health. 

My dad was in town for Father's Day. I wasn't about to let my pain control his trip. We went to dinner. I smiled and took pictures on Father's Day while on the inside I was cringing and in pain. My head a fog of pain killers and muscle relaxers just to allow me to function at a basic level. Moving sends pain searing through my body. I reapply my lipgloss and smile and make a joke. It's such a game. It's such bullshit. I want my life back. I don't want to leave work early because I'm in pain. I freaking HATE it. And I'm skinny. I'm at the lowest end of a healthy weight for 5'3". A few days of pain and I drop 5-8 pounds because as it is I absorb nothing. But I look great. I'm so skinny. I'm so lucky. Oh yeah--- Soooooo lucky. :|  I can buy clothes in the girls department and I lost my tits. Yeah- I lucked the hell right out with the big ole IBD lottery. Ugh--- I'd trade all this crap for 40 pounds and a properly functioning body.
So my surgeon was out of town last week and I finally got in to see him today at 5.

Just a normal day. Waiting for more pain at the surgeon's. 

 I need to get my pouch scoped because he doesn't feel the CT AND the MRI were comprehensive enough to figure out what's going on. I'm in too much pain. Spasms won't stop. My pouch surgery was textbook and now to have all this post OP shit is ridiculous. My surgeon says to me tonight that all my issues are issues that are present with Crohn's. CROHN'S. No. I refuse to accept that until there is something to substantiate it. I was tested and retested and biopsied within an inch of my life and NOTHING ever pointed to Crohn's. My surgeon had my small intestines IN HIS HANDS on purpose last May to triple check. I got gutted and cut wide open instead of doing it laproscopically so that he could better check my small bowel before gutting me.
I just don't know. So I get to go have my pouch checked out at Baylor with my surgeon, his partner and some other superman colo-rectal guy so they can all use me as a science experiment and try to problem solve. Luckily, I don't have any modesty left whatsoever so 3 grown men scoping my ass is just another day for me.
It is days like today where I feel this tiny pull telling me to go back to my ileostomy. Yes...seriously. Where many feel ostomies are a death sentence, I would actually consider going back.
I'm emotionally exhausted. I'm physically shutting down some days. I don't sleep from pain. I feel like I've been fighting an internal war for 4 years. How do I hang on? How do I get up everyday and bother faking it and keep going. Wouldn't it be easier to stay in bed, screw wearing makeup and putting an outfit together. Wouldn't that be more reflective of "sick"?? Sure. But I know that's not me. IBD may be destroying my body but I try so hard to stop it from destroying who I am. I give up a lot as it is. I don't feel independent anymore. Well, I'm not. I went back to work to try to regain some of it and it is a daily battle every time I have to go in. That's not me. I keep trying to force myself back into a Lisa that isn't really there anymore. And I'm stubborn and just keep trying.  I rely on Mat so much. He went out on a whim yesterday and got a new truck. I want to do that. I'm so afraid I'm stuck in this dependent state forever because these issues won't end. I hate putting that on him too. It's not fair to him. I could go around and around. It won't change anything right now. I just need to face the reality head on and make the most of it. In the meantime, my Disability hearing is finally in August. Yeah, over a year after it was requested because I got denied 3 times because I should have had no problem working fulltime while I was hemorrhaging blood daily about 30 times a day. Yeah- sounds completely doable to be holding a job with that going on.
Ok, I'm ending on this because the pain meds are kicked in. My surgeon took me off work for two weeks while I get tested, scoped and so my skin can heal. He wants me basically doing nothing to try to keep the spasms at bay and help my skin heal. <Sigh>  Defective. I feel like a defective burden. I don't know how much more I can take.
Good night all....

I'm in pain & uncomfortable & bitchy & I'm not sorry.

Hey there--- It's been a bit. I didn't mean to go this long but life has a way of making me feel like I got blasted with a Louisville slugger and then I'm down for the count. That was way too many sports references in one sentence!
So I've been working part time and for the most part it's kicking my ass. I am just so thoroughly exhausted I can barely function on my days off. I feel so guilty because I just want to sit down and not get up. It takes everything in me to get ready... When I work I don't eat much that day so I've lost some weight that I can't afford to lose. So work days I eat maybe one time. I don't drink enough on those days either so I know it's contributing to my dehydration, sluggishness and lightheadedness. It's just not a good combination. It amazes me what that 20-25 hours is doing to me. Not to mention the days I am in so much pain while I'm working. There are nights I don't think I'll make it. Or I need to take care of something while it feels like a hot poker is searing through my insides with my spasms. It's beyond frustrating. Some days I just want to give up and stay in bed because I think, that may be overdoing it at the moment. I don't know. I'm in a horrible catch 22.
Being in chronic pain takes so much out of me. I'm wiped out over the littlest thing. And it's hard to explain it, or make people understand without just sounding like a big lazy wuss. I was supposed to see my surgeon this week  but they rescheduled me once and then I had to reschedule it due to some personal commitments. So still doing the same meds. The antispasmotic drug puts me in a coma so I guess it works???? I don't know because I'm in a coma. So that's out for daytime. 5mg of Flexeril doesn't do much and if I up it to 10mg I'll be stoned out of my mind. Same with the Valium. So not sure what to do next. Some days I can't even think about dealing with this forever. I hate thinking that way because I keep telling myself, "Well, you aren't bleeding to death anymore", but that doesn't take the current pain away. And my canker sores are back. I have 5. That used to be my warning signs for a flare. When I get them now I freak internally. So it's Stress? IBD? I don't know but they Hurt! I don't consider myself to NOT have an IBD anymore although technically my UC was gone when my colon hit the biohazard bin. I still feel as though I am an IBD patient. I always will be. The actual diseased part of my body is gone, but the aftershock of that surgery continues to affect my daily life. I don't know what to do anymore. I don't know how to deal with it some days. I am just so worn out. I had two late nights at work and on my day off today have no energy to enjoy it. What kind of shit is that??? Complete shit, that's what. I don't enjoy cooking anymore because I feel like anything I eat will kill me later, and the effort it takes is more than the energy I have. I am mentally exhausted from the stress my physical limitations cause me. Every night when I go to bed I dread the morning because it comes too soon. My sleep is broken nightly. On the odd night I sleep through the night, it's a drug induced sleep and I still feel like shit the following day.
 I know... I bitch and moan and complain...blah blah. I'm running on empty. Faking being okay takes a lot of work and today I don't feel like pretending. I want to be a crabby bitch who is in pain and discomfort CONSTANTLY and I don't want to apologize for it. I'm sorry that this is inconvenient for some but- oh well. Too bad, so sad.  I won the big IBD lottery which has been a big ole F you for me, so anyone else's inconvenience is the least of my problems. Ugh-- I HATE being this person. Today isn't an anomaly. I just took my mask off. Figuratively and literally. I'm not even putting makeup on today.  Today I want to be a miserable, chronically sick asshole and not be apologetic for it. And that's all I've got. Sorry this was a pisser. Tomorrow may bring me something to feel happier about. Enjoy your health. Don't take it for granted. Take advantage of just being able to do whatever you want. Don't put that run off until tomorrow. Or the day trip or the hike..... One day you may not be able to accomplish it because of something you have no control over and you will wonder why you put it off. Thanks for reading. Enjoy your weekend, everyone. XO

Hey there--- It's been a bit. I didn't mean to go this long but life has a way of making me feel like I got blasted with a Louisville slugger and then I'm down for the count. That was way too many sports references in one sentence!
So I've been working part time and for the most part it's kicking my ass. I am just so thoroughly exhausted I can barely function on my days off. I feel so guilty because I just want to sit down and not get up. It takes everything in me to get ready... When I work I don't eat much that day so I've lost some weight that I can't afford to lose. So work days I eat maybe one time. I don't drink enough on those days either so I know it's contributing to my dehydration, sluggishness and lightheadedness. It's just not a good combination. It amazes me what that 20-25 hours is doing to me. Not to mention the days I am in so much pain while I'm working. There are nights I don't think I'll make it. Or I need to take care of something while it feels like a hot poker is searing through my insides with my spasms. It's beyond frustrating. Some days I just want to give up and stay in bed because I think, that may be overdoing it at the moment. I don't know. I'm in a horrible catch 22.
Being in chronic pain takes so much out of me. I'm wiped out over the littlest thing. And it's hard to explain it, or make people understand without just sounding like a big lazy wuss. I was supposed to see my surgeon this week  but they rescheduled me once and then I had to reschedule it due to some personal commitments. So still doing the same meds. The antispasmotic drug puts me in a coma so I guess it works???? I don't know because I'm in a coma. So that's out for daytime. 5mg of Flexeril doesn't do much and if I up it to 10mg I'll be stoned out of my mind. Same with the Valium. So not sure what to do next. Some days I can't even think about dealing with this forever. I hate thinking that way because I keep telling myself, "Well, you aren't bleeding to death anymore", but that doesn't take the current pain away. And my canker sores are back. I have 5. That used to be my warning signs for a flare. When I get them now I freak internally. So it's Stress? IBD? I don't know but they Hurt! I don't consider myself to NOT have an IBD anymore although technically my UC was gone when my colon hit the biohazard bin. I still feel as though I am an IBD patient. I always will be. The actual diseased part of my body is gone, but the aftershock of that surgery continues to affect my daily life. I don't know what to do anymore. I don't know how to deal with it some days. I am just so worn out. I had two late nights at work and on my day off today have no energy to enjoy it. What kind of shit is that??? Complete shit, that's what. I don't enjoy cooking anymore because I feel like anything I eat will kill me later, and the effort it takes is more than the energy I have. I am mentally exhausted from the stress my physical limitations cause me. Every night when I go to bed I dread the morning because it comes too soon. My sleep is broken nightly. On the odd night I sleep through the night, it's a drug induced sleep and I still feel like shit the following day.
 I know... I bitch and moan and complain...blah blah. I'm running on empty. Faking being okay takes a lot of work and today I don't feel like pretending. I want to be a crabby bitch who is in pain and discomfort CONSTANTLY and I don't want to apologize for it. I'm sorry that this is inconvenient for some but- oh well. Too bad, so sad.  I won the big IBD lottery which has been a big ole F you for me, so anyone else's inconvenience is the least of my problems. Ugh-- I HATE being this person. Today isn't an anomaly. I just took my mask off. Figuratively and literally. I'm not even putting makeup on today.  Today I want to be a miserable, chronically sick asshole and not be apologetic for it. And that's all I've got. Sorry this was a pisser. Tomorrow may bring me something to feel happier about. Enjoy your health. Don't take it for granted. Take advantage of just being able to do whatever you want. Don't put that run off until tomorrow. Or the day trip or the hike..... One day you may not be able to accomplish it because of something you have no control over and you will wonder why you put it off. Thanks for reading. Enjoy your weekend, everyone. XO

happy colonlessiversary...or something.

One year. About the same exact time I sit here typing I was waking up from anesthesia. It seems nearly dreamlike, but I can say it was the most intense pain I have ever experienced. There are no words to explain it. Naturally they wake you up, you feel pain and then they get you going with the good meds. But in the time they moved me from a gurney to my bed, I thought I was dying. Hubs said I made animal sounds. Just primal, hurting sounds. I remember them telling me to roll and shift so they could move me. I remember just crying and saying I couldn't. I had just been cut open from above my belly button to my pelvic bone. My guts were separated from the surrounding organs and tissue. He pulled out my small intestines and looked them over for signs of Crohn's. He then put all of that back in and proceeded to remove all five feet of my large intestines and almost all of my rectum. Just enough was left to attach my J Pouch later. The loose end of my small bowel was formed into a reservoir shaped like a "J" and that was attached to what was left of my rectum. A portion of my small intestines much closer to the stomach was then disconnected from the rest and rerouted out through my abdomen at a stoma site so nothing would pass to the J Pouch while it healed. I was then stapled shut. All that shit hurts. The incision hurt. The stoma site hurt. The internal pain hurt. I felt like I got run over. Getting gutted is no joke. I just looked through my post op pics. I remember thinking my scar was so intense. In one year I almost forget it's there. But I don't hide it.

From being stapled shut after surgery---->

40 staples

Early scar, about 2 weeks post op after staples came out --->

FrankenBelly

Two days ago on World IBD Day.

I remember wondering if it was going to look like train tracks forever.
One year ago was the end of one long battle that changed me, crushed a lot of my spirit, messed with my self esteem, altered my body image, made me fear food, and made me doubt what I can do. It has been a very different type of battle this year, especially my time with an ostomy. There were nights I struggled and cried and said I couldn't do it. Hubs would say, "Well, it's too late. You have to. They can't put your colon back in now". My post surgical pain only ever came close to my UC flare pain the first few days post op. By the time I was home my flare pain put my recovery to shame.'
I still struggle. I will never be normal. Some days are worse than others. Some days are so great I forget I'm missing a major organ. Other days I swear I don't know how I can live this way. In terms of having colitis, no I technically don't have it anymore since Ulcerative colitis is only in the colon. But I struggle. My life is impacted everyday by this change in my anatomy. There are some foods I'll never eat again. There are other foods I just can't say no to and I pay for it for almost two days. I may have issues forever. They will never compare to a flare but regardless, they are there. My scar tissue pain has finally started subsiding. My fear that I have Crohn's and not UC is slowly fading as time goes on. I still have symptoms I am dealing with daily that keep me on alert. I can dehydrate very quickly and some days I get lightheaded fast because of it. I spent my first day out in the heat the other day and it didn't go so well. It hit me fast. Summers will be a continuous effort to stay hydrated and keep myself from blacking out. My absorption probably isn't the best and when my levels drop I feel it pretty quickly. I don't want to say I may have limitations forever. I hope not. I hate that thought and I hate when my body holds me back and betrays me. I don't want to be afraid to go for a bike ride. Or wonder if my spasms will shackle me for the day, or keep me up all night. I can only take it and it comes and play the hand I'm dealt. Being back at work part time has already been impacted by it. I hate that. I don't like feeling like maybe I can't hold up my end because my stupid body has other plans. It's hard. It hurts. It frustrates me and creates a lot of self doubt. Hoping that will lessen as time goes by.
 Anyway- Happy one year to me being colonless and getting to tell my story. Thanks everyone for being supportive and reading and sharing. Love to all.
XO from one gutsy broad. =-)

One year. About the same exact time I sit here typing I was waking up from anesthesia. It seems nearly dreamlike, but I can say it was the most intense pain I have ever experienced. There are no words to explain it. Naturally they wake you up, you feel pain and then they get you going with the good meds. But in the time they moved me from a gurney to my bed, I thought I was dying. Hubs said I made animal sounds. Just primal, hurting sounds. I remember them telling me to roll and shift so they could move me. I remember just crying and saying I couldn't. I had just been cut open from above my belly button to my pelvic bone. My guts were separated from the surrounding organs and tissue. He pulled out my small intestines and looked them over for signs of Crohn's. He then put all of that back in and proceeded to remove all five feet of my large intestines and almost all of my rectum. Just enough was left to attach my J Pouch later. The loose end of my small bowel was formed into a reservoir shaped like a "J" and that was attached to what was left of my rectum. A portion of my small intestines much closer to the stomach was then disconnected from the rest and rerouted out through my abdomen at a stoma site so nothing would pass to the J Pouch while it healed. I was then stapled shut. All that shit hurts. The incision hurt. The stoma site hurt. The internal pain hurt. I felt like I got run over. Getting gutted is no joke. I just looked through my post op pics. I remember thinking my scar was so intense. In one year I almost forget it's there. But I don't hide it.

From being stapled shut after surgery---->

40 staples

Early scar, about 2 weeks post op after staples came out --->

FrankenBelly

Two days ago on World IBD Day.

I remember wondering if it was going to look like train tracks forever.
One year ago was the end of one long battle that changed me, crushed a lot of my spirit, messed with my self esteem, altered my body image, made me fear food, and made me doubt what I can do. It has been a very different type of battle this year, especially my time with an ostomy. There were nights I struggled and cried and said I couldn't do it. Hubs would say, "Well, it's too late. You have to. They can't put your colon back in now". My post surgical pain only ever came close to my UC flare pain the first few days post op. By the time I was home my flare pain put my recovery to shame.'
I still struggle. I will never be normal. Some days are worse than others. Some days are so great I forget I'm missing a major organ. Other days I swear I don't know how I can live this way. In terms of having colitis, no I technically don't have it anymore since Ulcerative colitis is only in the colon. But I struggle. My life is impacted everyday by this change in my anatomy. There are some foods I'll never eat again. There are other foods I just can't say no to and I pay for it for almost two days. I may have issues forever. They will never compare to a flare but regardless, they are there. My scar tissue pain has finally started subsiding. My fear that I have Crohn's and not UC is slowly fading as time goes on. I still have symptoms I am dealing with daily that keep me on alert. I can dehydrate very quickly and some days I get lightheaded fast because of it. I spent my first day out in the heat the other day and it didn't go so well. It hit me fast. Summers will be a continuous effort to stay hydrated and keep myself from blacking out. My absorption probably isn't the best and when my levels drop I feel it pretty quickly. I don't want to say I may have limitations forever. I hope not. I hate that thought and I hate when my body holds me back and betrays me. I don't want to be afraid to go for a bike ride. Or wonder if my spasms will shackle me for the day, or keep me up all night. I can only take it and it comes and play the hand I'm dealt. Being back at work part time has already been impacted by it. I hate that. I don't like feeling like maybe I can't hold up my end because my stupid body has other plans. It's hard. It hurts. It frustrates me and creates a lot of self doubt. Hoping that will lessen as time goes by.
 Anyway- Happy one year to me being colonless and getting to tell my story. Thanks everyone for being supportive and reading and sharing. Love to all.
XO from one gutsy broad. =-)