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

I had a very disgusting night.

I'm giving everyone fair warning. I'm about to talk about some gross shit. As opposed to not gross shit I guess. Whatever.

It's been a month since I've written. The one fabulous thing I did was get LASIK!! OMG! So freakin' great. My eyes weren't bad to begin with but to me they were. I was about 20/40 and -2.50 in contacts. My last checkup was 20/10!!! It is unreal to wake up and be able to see, and shower and not be blind or me to think I'm going to get some bacterial infection every time I would shower with contacts in. Yes, I know, but it happens. So now I can SEE!! I have a part of my body that isn't failing and causing me issues. I don't even know what to do about it. Wow. And daughter #2 broke my glasses the day after surgery. And I didn't even care!! =)


*** Grossness beginning***

So aside from my spectacular vision,  I have had the usual nonsense with living with a temporary ileostomy. Trying to figure out how to slow my output so it's not nasty water pouring out of me but not so thick that it'll cause issues. Yeah, I haven't found the right fix yet unless you count eating potato chips everyday. No kidding. The lomotil I have as a Rx doesn't quite do it. The Imodium is a joke. But if I eat chips everyday I am the closest thing to comfortable as I can get. Sleeping with an ostomy bag full of liquid is impossible. It sloshes around. It weighs 2lbs. No joke. It is truly disgusting and you are aware of it for every single second you are trying to "relax" and get some sleep. It doesn't go together well, hence I'm a #tiredhag.
Traveling with an ostomy is a nightmare for me. We went away for spring break for a week and I have to plan and think about so many things with an ostomy. I have yet to find wafers that don't blow and leak constantly so needing to travel and carry with me enough supplies by guessing what I could possibly need is a lot. You can't get anything at a drugstore. So I get paranoid and half a suitcase is ostomy supplies. I came close to not having enough this time. I started to panic over the weekend and came up with a plan to contact an ostomy nurse at a hospital in town. It would have been my only option in a pinch.

My ostomy was at the forefront of my mind every minute I was away. At the beach(especially), while we spent the day at a theme park, when we went to dinner at my parent's friend's house. Dealing with an ostomy incident away from my house makes me crazy. It makes me neurotic and upset and just so AWARE that I have issues. I love the beach. I could park my ass in the sand for 5 days straight and be fine. It's not the same dealing with this. It's hard to handle a wafer blowout in the sand. My enjoyment level is down. I feel restricted in my life. I know so many of my IBDer friends have permanent ostomies that they chose, or in some cases, had no choice. And I commend them for their day to day. I am amazed by those that scuba dive, run marathons, go camping etc... I can't picture myself doing any of that. Not in my condition. Not with the skin issues I have, the wafer issues I have and the output I have. Some days I'm afraid to run to the store because my wafers have been leaking nonstop.
So vacation was fun. I LOVE going away but at the same time felt the impact of what I have going on with an ostomy. We went to Universal and I had an explosion before we got into the park. That doesn't set my confidence level very high for the day. I hate that. But I enjoyed Butter Beer in the World of Harry Potter. ;)

So we get to the last few days. My rectal spasms are back and are so uncomfortable. They bring me to tears and it takes A LOT of pain to bring me to tears. I've built up a pretty high tolerance for pain over the years. My skin is raw. It's weeping, it's bleeding. My output is water. (Keep in mind "they" say a good output is mush like oatmeal. Yeah, right. Maybe about an hour every few days if I eat chips consistantly.) So I've been going through wafers like crazy. I try to hold off changing them very soon even if I know I have fluid that has leaked under and is eating my skin. The tradeoff is my skin getting eaten off in one small spot, or my skin getting ripped off from the wax in a larger area.(The wafer is wax and it melts onto your skin to seal it. They are meant to stay on easily up to 5 days so getting one off after a few hours is horrible.) It all sounds so fun doesn't it?? Wooooo-friggon-Hooooo!
All of these supplies are VERY expensive so making them last is important. I spend way too much money on all these supplies. So sometimes I suffer through the pain of a leaking wafer just to get another day out of it. I know that sounds nuts but I've become so accustomed to some sort of pain or discomfort that it isn't a big deal anymore.
Well today was just the suck of the suck. Burning skin. Spasms. Water output nonstop. Those things and changing a wafer DO NOT MIX. On a good day, once I get the old wafer off I can get cleaned, prepped and a new wafer on in 60 seconds. On a day like today I have no chance against the power of the small intestine's peristalsis. It won't stop. And with it being all liquid it makes it impossible to get the area dry before putting the new wafer on. So tonight with my skin burning so bad I couldn't take anymore, I managed to peel the wafer off, taking some skin with it. Here's a nice visual.

 So my skin's bleeding. I'm trying to get everything ready with one hand and deal with my skin with the other. Well, then the explosions started. I am not kidding when I say the force of the smooth muscle in your guts is insane. You will never see it unless you are *lucky* enough to have part of it sticking out of your abdomen. Mind you, you can't feel it doing it. It's creepy. There are no nerve endings. So I don't know its leaking until it hits skin or I see it. Tonight I was lucky enough to have that pain in the ass spray 2 feet across the bathroom. More than once. Absolutely amazing and completely disgusting at the same time. There is nothing to do to stop it. It was everywhere. Like a gross horror movie.
So after showering, barely getting the new wafer on before it sprayed again, I had to bleach the bathroom. I'm living the dream. Some days, like today, it is so apparent that this is my life.
 I will never NOT have issues. I know that sounds so negative but even getting reversed to my JPouch will not be fool proof. If it was I wouldn't have this ostomy again. It's a crap shoot, so to speak, and some days it feels like I have a short term issue and I'm just waiting for it to resolve itself. But the truth is, I have an autoimmune disease, I'm missing a major organ that you need to live well and be healthy. NOTHING will replace my colon or do it's job. And most people don't realize how important digestion is to their health. They don't know the impact of IBD. I know I've said in the past but, I've had people ask me very confused HOW I was anemic. Shitting blood in ridiculous amounts for months straight isn't something that occurs to people and even if it did they don't really get how much damage it causes.

But to all my healthy readers, how horrible do you feel from one night of diarrhea? From a week of the flu? Run down. Weak. Fatigued. Hurting internally. Imagine that every day of your life. With blood. With abdominal pain that sears through you like a hot poker. It's devastating. It's debilitating. It can be embarrassing. I'm generally a pretty confident person, but I will say my ostomy reduces that. My weak, fatigued body reduces that. My poor body image from weight fluctuations reduces that. And for me that is huge. SO when I have to fight with an ostomy, and have it halt my life the way it can, I know pushing to get reversed is what I need. I can be in pain anywhere. I can deal with that. I've done it. When an ileostomy wafer blows, and you have a mess and you are in the car, in the mall, at the beach, in a plane, that's what is halting and what is beyond my scope of handling.

I've been dreaming of my reversal. I'm so miserable like this. Hoping to get scoped in April. If it looks good, I want my reversal as soon as my finals are done. I'll leave school and drive to the O.R.
Sorry for my long windedness. Sorry for being Josie Grossie. I guess sometimes I glaze over the reality and how much it can suck and I just needed to put this out there. I smile and live my life and TRY not to let this whole mess of my life hold me back. I think I do pretty well, but tonight just hit me too hard. When you have a moment when you are alone and feel humiliated to yourself, you know that's something big.
Live well everyone. Be well. Love your guts and don't take your health for granted. Don't take having nothing hindering you for granted. Thanks for reading. XO.

I'm giving everyone fair warning. I'm about to talk about some gross shit. As opposed to not gross shit I guess. Whatever.

It's been a month since I've written. The one fabulous thing I did was get LASIK!! OMG! So freakin' great. My eyes weren't bad to begin with but to me they were. I was about 20/40 and -2.50 in contacts. My last checkup was 20/10!!! It is unreal to wake up and be able to see, and shower and not be blind or me to think I'm going to get some bacterial infection every time I would shower with contacts in. Yes, I know, but it happens. So now I can SEE!! I have a part of my body that isn't failing and causing me issues. I don't even know what to do about it. Wow. And daughter #2 broke my glasses the day after surgery. And I didn't even care!! =)


*** Grossness beginning***

So aside from my spectacular vision,  I have had the usual nonsense with living with a temporary ileostomy. Trying to figure out how to slow my output so it's not nasty water pouring out of me but not so thick that it'll cause issues. Yeah, I haven't found the right fix yet unless you count eating potato chips everyday. No kidding. The lomotil I have as a Rx doesn't quite do it. The Imodium is a joke. But if I eat chips everyday I am the closest thing to comfortable as I can get. Sleeping with an ostomy bag full of liquid is impossible. It sloshes around. It weighs 2lbs. No joke. It is truly disgusting and you are aware of it for every single second you are trying to "relax" and get some sleep. It doesn't go together well, hence I'm a #tiredhag.
Traveling with an ostomy is a nightmare for me. We went away for spring break for a week and I have to plan and think about so many things with an ostomy. I have yet to find wafers that don't blow and leak constantly so needing to travel and carry with me enough supplies by guessing what I could possibly need is a lot. You can't get anything at a drugstore. So I get paranoid and half a suitcase is ostomy supplies. I came close to not having enough this time. I started to panic over the weekend and came up with a plan to contact an ostomy nurse at a hospital in town. It would have been my only option in a pinch.

My ostomy was at the forefront of my mind every minute I was away. At the beach(especially), while we spent the day at a theme park, when we went to dinner at my parent's friend's house. Dealing with an ostomy incident away from my house makes me crazy. It makes me neurotic and upset and just so AWARE that I have issues. I love the beach. I could park my ass in the sand for 5 days straight and be fine. It's not the same dealing with this. It's hard to handle a wafer blowout in the sand. My enjoyment level is down. I feel restricted in my life. I know so many of my IBDer friends have permanent ostomies that they chose, or in some cases, had no choice. And I commend them for their day to day. I am amazed by those that scuba dive, run marathons, go camping etc... I can't picture myself doing any of that. Not in my condition. Not with the skin issues I have, the wafer issues I have and the output I have. Some days I'm afraid to run to the store because my wafers have been leaking nonstop.
So vacation was fun. I LOVE going away but at the same time felt the impact of what I have going on with an ostomy. We went to Universal and I had an explosion before we got into the park. That doesn't set my confidence level very high for the day. I hate that. But I enjoyed Butter Beer in the World of Harry Potter. ;)

So we get to the last few days. My rectal spasms are back and are so uncomfortable. They bring me to tears and it takes A LOT of pain to bring me to tears. I've built up a pretty high tolerance for pain over the years. My skin is raw. It's weeping, it's bleeding. My output is water. (Keep in mind "they" say a good output is mush like oatmeal. Yeah, right. Maybe about an hour every few days if I eat chips consistantly.) So I've been going through wafers like crazy. I try to hold off changing them very soon even if I know I have fluid that has leaked under and is eating my skin. The tradeoff is my skin getting eaten off in one small spot, or my skin getting ripped off from the wax in a larger area.(The wafer is wax and it melts onto your skin to seal it. They are meant to stay on easily up to 5 days so getting one off after a few hours is horrible.) It all sounds so fun doesn't it?? Wooooo-friggon-Hooooo!
All of these supplies are VERY expensive so making them last is important. I spend way too much money on all these supplies. So sometimes I suffer through the pain of a leaking wafer just to get another day out of it. I know that sounds nuts but I've become so accustomed to some sort of pain or discomfort that it isn't a big deal anymore.
Well today was just the suck of the suck. Burning skin. Spasms. Water output nonstop. Those things and changing a wafer DO NOT MIX. On a good day, once I get the old wafer off I can get cleaned, prepped and a new wafer on in 60 seconds. On a day like today I have no chance against the power of the small intestine's peristalsis. It won't stop. And with it being all liquid it makes it impossible to get the area dry before putting the new wafer on. So tonight with my skin burning so bad I couldn't take anymore, I managed to peel the wafer off, taking some skin with it. Here's a nice visual.

 So my skin's bleeding. I'm trying to get everything ready with one hand and deal with my skin with the other. Well, then the explosions started. I am not kidding when I say the force of the smooth muscle in your guts is insane. You will never see it unless you are *lucky* enough to have part of it sticking out of your abdomen. Mind you, you can't feel it doing it. It's creepy. There are no nerve endings. So I don't know its leaking until it hits skin or I see it. Tonight I was lucky enough to have that pain in the ass spray 2 feet across the bathroom. More than once. Absolutely amazing and completely disgusting at the same time. There is nothing to do to stop it. It was everywhere. Like a gross horror movie.
So after showering, barely getting the new wafer on before it sprayed again, I had to bleach the bathroom. I'm living the dream. Some days, like today, it is so apparent that this is my life.
 I will never NOT have issues. I know that sounds so negative but even getting reversed to my JPouch will not be fool proof. If it was I wouldn't have this ostomy again. It's a crap shoot, so to speak, and some days it feels like I have a short term issue and I'm just waiting for it to resolve itself. But the truth is, I have an autoimmune disease, I'm missing a major organ that you need to live well and be healthy. NOTHING will replace my colon or do it's job. And most people don't realize how important digestion is to their health. They don't know the impact of IBD. I know I've said in the past but, I've had people ask me very confused HOW I was anemic. Shitting blood in ridiculous amounts for months straight isn't something that occurs to people and even if it did they don't really get how much damage it causes.

But to all my healthy readers, how horrible do you feel from one night of diarrhea? From a week of the flu? Run down. Weak. Fatigued. Hurting internally. Imagine that every day of your life. With blood. With abdominal pain that sears through you like a hot poker. It's devastating. It's debilitating. It can be embarrassing. I'm generally a pretty confident person, but I will say my ostomy reduces that. My weak, fatigued body reduces that. My poor body image from weight fluctuations reduces that. And for me that is huge. SO when I have to fight with an ostomy, and have it halt my life the way it can, I know pushing to get reversed is what I need. I can be in pain anywhere. I can deal with that. I've done it. When an ileostomy wafer blows, and you have a mess and you are in the car, in the mall, at the beach, in a plane, that's what is halting and what is beyond my scope of handling.

I've been dreaming of my reversal. I'm so miserable like this. Hoping to get scoped in April. If it looks good, I want my reversal as soon as my finals are done. I'll leave school and drive to the O.R.
Sorry for my long windedness. Sorry for being Josie Grossie. I guess sometimes I glaze over the reality and how much it can suck and I just needed to put this out there. I smile and live my life and TRY not to let this whole mess of my life hold me back. I think I do pretty well, but tonight just hit me too hard. When you have a moment when you are alone and feel humiliated to yourself, you know that's something big.
Live well everyone. Be well. Love your guts and don't take your health for granted. Don't take having nothing hindering you for granted. Thanks for reading. 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.

Nonstop, little sleep, lots of meds, repeat.

It has been some time!!! Sorry it's been so long... Following my last blog post I was miserable and dealing with some JPouch issues and was in the worst mood for a few days and then life got in the way. I saw my surgeon last week and was basically a wreck. I wasn't sleeping because my skin was so raw and was weeping. NOTHING I did was working. The pain and the spasms kept me up or woke me up multiple times per night. I had lost a very small amount of blood a few times, and after everything I've been through, one drop and I am in an internal panic. I was near a breaking point from exhaustion. My surgeon comes in the room and I just started crying. He didn't know what to do. I launched into my tirade about my misery and exhaustion and just kept crying. He looks at me after I stopped for a second, and says, "Lisa, I don't know how to handle this with you. You are one of the strongest people I have ever treated, with one of the worst cases of UC, and you always have humor and a joke. I can't handle this side of you. I'm going to fix it". Well, naturally that made me cry harder and then lucky me....... I got to have an internal exam. It was my lucky day. Whoop whoop. Once again I will reiterate, I have no shame, dignity or modesty left... LONG GONE!!
So, he prescribes me Valium, more Flexeril(yeah, who knew digestive diseases would get you the good stuff), lidocaine gel(use your imagination) and a topical cream. I'm seriously a walking pharmacy. Want to know how often I fill prescriptions? They don't even glance at my license for a controlled substance anymore because THEY KNOW ME. Crazy. But I digress....
I felt better after leaving the office because my surgeon is great. He will listen, and keep trying to fix whatever the problem is. So many doctors dismiss their patients and are arrogant. I get none of that with mine and it's wonderful.
In the meantime I started classes and it is kicking my ass. A lot of work. A lot of material. It's scary. I am having my moments of being overwhelmed especially when my 18 month old is going nuts, tearing through the house and I'm trying to study tissues samples!! Yikes. No bueno. On top of it, my sleep is very broken which makes the mornings feel like torture. I'm trying to adjust. One thing that is so awesome that most will find weird is that Hubs installed a retro fit Bidet on our master bathroom toilet. OMG seriously, it is amazing!! Everyone should have one. Seriously. Go Bidet. It has changed my life now that I have a JPouch and the skin issues that go along with it as I've explained before.
Anyway- that's been my big exciting news. So great.
Oh, another awesome thing is I am going to be a guest blogger for http://thegreatbowelmovement.org/. I am so excited. They are a great little thing with awesome Tshirts like the one I have that says, "Ask me about my Ostomy". Awareness, awareness and conversation. So important to us IBD activists. As soon as it's up and posted I will link it! So cool.
It's things like that that make me so happy I started blogging.

Well, I am going back to some studying before bed. Test on Monday and I never maximize my weekend as much as I'd like. Have a great night everyone. Thanks for reading. XO

It has been some time!!! Sorry it's been so long... Following my last blog post I was miserable and dealing with some JPouch issues and was in the worst mood for a few days and then life got in the way. I saw my surgeon last week and was basically a wreck. I wasn't sleeping because my skin was so raw and was weeping. NOTHING I did was working. The pain and the spasms kept me up or woke me up multiple times per night. I had lost a very small amount of blood a few times, and after everything I've been through, one drop and I am in an internal panic. I was near a breaking point from exhaustion. My surgeon comes in the room and I just started crying. He didn't know what to do. I launched into my tirade about my misery and exhaustion and just kept crying. He looks at me after I stopped for a second, and says, "Lisa, I don't know how to handle this with you. You are one of the strongest people I have ever treated, with one of the worst cases of UC, and you always have humor and a joke. I can't handle this side of you. I'm going to fix it". Well, naturally that made me cry harder and then lucky me....... I got to have an internal exam. It was my lucky day. Whoop whoop. Once again I will reiterate, I have no shame, dignity or modesty left... LONG GONE!!
So, he prescribes me Valium, more Flexeril(yeah, who knew digestive diseases would get you the good stuff), lidocaine gel(use your imagination) and a topical cream. I'm seriously a walking pharmacy. Want to know how often I fill prescriptions? They don't even glance at my license for a controlled substance anymore because THEY KNOW ME. Crazy. But I digress....
I felt better after leaving the office because my surgeon is great. He will listen, and keep trying to fix whatever the problem is. So many doctors dismiss their patients and are arrogant. I get none of that with mine and it's wonderful.
In the meantime I started classes and it is kicking my ass. A lot of work. A lot of material. It's scary. I am having my moments of being overwhelmed especially when my 18 month old is going nuts, tearing through the house and I'm trying to study tissues samples!! Yikes. No bueno. On top of it, my sleep is very broken which makes the mornings feel like torture. I'm trying to adjust. One thing that is so awesome that most will find weird is that Hubs installed a retro fit Bidet on our master bathroom toilet. OMG seriously, it is amazing!! Everyone should have one. Seriously. Go Bidet. It has changed my life now that I have a JPouch and the skin issues that go along with it as I've explained before.
Anyway- that's been my big exciting news. So great.
Oh, another awesome thing is I am going to be a guest blogger for http://thegreatbowelmovement.org/. I am so excited. They are a great little thing with awesome Tshirts like the one I have that says, "Ask me about my Ostomy". Awareness, awareness and conversation. So important to us IBD activists. As soon as it's up and posted I will link it! So cool.
It's things like that that make me so happy I started blogging.

Well, I am going back to some studying before bed. Test on Monday and I never maximize my weekend as much as I'd like. Have a great night everyone. Thanks for reading. XO

Lucky me.

Please watch this before continuing.


Watch "The Butt Campaign" on YouTube

This video made me cry. Made me realize I am lucky for everything I've gone through. I had a carefree childhood. No chronic pain, bleeding, hospitalizations etc.... These kids deal with so much at ages they should be playing and having fun. Instead, they schedule doctor's appointments and IV infusions. I see my girls in their faces. I hope they never have to go through what I have. I know I will forever be paranoid when they have stomach aches or diarrhea. I know the fear that they will develop symptoms is in the back of my mind. That's why this video hit me. I am lucky I got 31 years of a healthy life before all this UC shit started. There are infants with ostomy bags like I had. Can you imagine your baby needing my surgery, and having an ostomy and a bag on it's sweet little body? Heartbreaking. The first time I saw pictures of that I cried. I am very lucky. Even at my age it's hard to handle but I can tell myself to shut up and suck it up and persevere. These kids who have IBD are so strong. I don't know how they hold themselves together so well and smile! So many days I've been falling apart and there are kids who are smiling and enjoying life. Bravo to them. They are amazing. We need to support IBD research and find a cure for this crap. It ruins lives, it affects babies and kids and adults. The meds have evil side effects. The pain on a daily basis is excruciating. I will continue to talk about my story, unembarrassed and open, so more people will understand. Breast cancer used to be taboo too but now through awareness campaigns and people being open, there is no stigma. That's beautiful. I'd like for IBD to be the same. The pledge connected to this video and this group is to vow to stay verbal, and active in the fight against IBD until a cure is found. Being a complete pain in the butt. I can do that no problem. More ways than one. ;-). I'm on the other side now, thanks to surgery. I used to have UC. My surgeries come with their own issues but it's nothing like it was. I am lucky. I am lucky UC showed up when I was 31. Very lucky.

Please watch this before continuing.


Watch "The Butt Campaign" on YouTube

This video made me cry. Made me realize I am lucky for everything I've gone through. I had a carefree childhood. No chronic pain, bleeding, hospitalizations etc.... These kids deal with so much at ages they should be playing and having fun. Instead, they schedule doctor's appointments and IV infusions. I see my girls in their faces. I hope they never have to go through what I have. I know I will forever be paranoid when they have stomach aches or diarrhea. I know the fear that they will develop symptoms is in the back of my mind. That's why this video hit me. I am lucky I got 31 years of a healthy life before all this UC shit started. There are infants with ostomy bags like I had. Can you imagine your baby needing my surgery, and having an ostomy and a bag on it's sweet little body? Heartbreaking. The first time I saw pictures of that I cried. I am very lucky. Even at my age it's hard to handle but I can tell myself to shut up and suck it up and persevere. These kids who have IBD are so strong. I don't know how they hold themselves together so well and smile! So many days I've been falling apart and there are kids who are smiling and enjoying life. Bravo to them. They are amazing. We need to support IBD research and find a cure for this crap. It ruins lives, it affects babies and kids and adults. The meds have evil side effects. The pain on a daily basis is excruciating. I will continue to talk about my story, unembarrassed and open, so more people will understand. Breast cancer used to be taboo too but now through awareness campaigns and people being open, there is no stigma. That's beautiful. I'd like for IBD to be the same. The pledge connected to this video and this group is to vow to stay verbal, and active in the fight against IBD until a cure is found. Being a complete pain in the butt. I can do that no problem. More ways than one. ;-). I'm on the other side now, thanks to surgery. I used to have UC. My surgeries come with their own issues but it's nothing like it was. I am lucky. I am lucky UC showed up when I was 31. Very lucky.

What a difference a year makes!!

Well hello out there internet land. it's been a bit since I've written so that could mean I feel fantastic or like total shit... it's been a little bit of both. I still wake up feeling absolutely liberated not having a rotting colon, and not having a bag 'o poo adhered to my torso. On the flip side, still dealing with pain that comes with rearranging my internal organs. First, a little factoid. The average person, from the moment of ingestion to elimination is anywhere from 18-48 hours depending on water and fiber intake. Your food leaves your stomach within 30 minutes and heads to the small bowel. The small bowel is not storage. In roughly 3-4 hours it sucks up the nutrients from the food and moves it into your colon. The colon absorbs water and electrolytes and anything left worth using and stores it until you have to go #2. Well, I don't have the colon anymore. So...after about 4-6 hours my food is gone. Sometimes that is very annoying. It can cause a bit more frequency than I'd like, but anything beats going 20-30 times a day, in pain, like I was before surgery. This leads to another factoid that I may have mentioned in the past. Your small bowel can not remove stomach acid from your waste. It never will. That's part of your colon's job, which I no longer have. To sum up- frequency + highly acidic poo = pain, misery and adult diaper rash. =( Still, I wouldn't go back. Life sucked pretty bad when I prefer a diaper rash. CRAZY.
I've started keeping a journal of when and what I eat, and subsequently, when I hit the throne. Wow- just reread that last part. I have seriously opened the flood gates into what should be the most hidden moments and details of what I'm dealing with and here I am sending it into the internet.

Here's me and my baby girl a few days ago when she turned 15 months. Happy I can spend time, run around and feeling so much better!!! =)

Here's a pretty recent pic of the FrankenBelly. Not as bad as I ever would have thought, but a lot of scar tissue that tends to give me pain if I move a certain way, or quickly. Yoga will not be possible for a bit. Just stretching in the morning hurts. Hoping it will slowly subside.

I've been using some scar fading stuff but not religiously. I'm obviously not too concerned. If it starts to fade as the vertical one did it won't be a big deal. It is very recessed though. Sunken in and weird. Everyone says it's look like a gunshot scar. I think my story is WAY better than a getting shot or knifed. I'll stick with the story about how I kicked UC's ass to the curb!! BOOM!

Had Halloween yesterday. It was so LOVELY to just stroll around the neighborhood, no urgency, with Dillan. The temps dropping brought us in, NOT MY GUTS!!!! That's a big deal. EVERY SINGLE moment, event, and day was impacted by my UC. Seriously it is as though the binds are gone. I was walking last night and pushing Violet thinking about how a year ago life was so different. I was ballooned from Prednisone. I hurt all over. My stepson B took Daughter #1 around because I wouldn't have lasted a block. This year I could have gone for hours. It was great. So liberating. A bonus---We have WAY too much candy left. It's going to be a food group for a while. My kids are damn cute!

I did full blown makeup to be a bearded lady... here's a before and an after----->

It was hard smiling in that thing. It was either Bearded lady or a Pig in a Blanket and it ended up being too warm to walk around wrapped in a blanket. I'm still not used to warm weather at Halloween. I subconsciously think I need the thermals under my costume!!
Here's me last year. I didn't even want my picture taken because the moon face was so bad and I was so ugly. I don't even recognize myself. How horrible that drug is. I think I packed on almost 40lbs too. I should have just put a bag over my fat head!!! =) And can you tell green is my favorite color. That's weird.

I have been thinking lately I want to do more in striving for IBD, ostomy and Pouch awareness. I don't know where to start. I think I'll contact my local CCFA. I really want to be out there as an advocate with my story and experience and make what we deal with and how it affects our lives a bit more center stage. It struck me the other day when I called my SSDI(Social Security Disability Insurance) attorney to update my file with my second surgery and how my meds changed and the woman at the office who I passed the message to said, "I'd ask what an Ostomy reversal is, but first I need to know what an ostomy is." It just took me aback. Is this stuff really that below the radar?? It shouldn't be. We are not that few and far between!!! Hello!!!! We all need to talk and get it out there. I'm sure at some point people were embarrassed to talk about breast cancer but now, there isn't one person who hasn't heard of breast cancer. And yet, they still spend millions every year on 'awareness'. Everyone is aware... in terms of that..it's time to just shift that money to research and treatment.
With IBD, there is little 'awareness'. Little understanding. Meds that rock our worlds and our bodies into worse situations. Other countries are leaping ahead with research and trials with intestinal transplants, fecal transplant etc... I would have been all on board for someone else's guts. Even one foot of colon would have to help right?? Ok, I'm off my soapbox and done contemplating biology and science I have to business contemplating. Have a great November 1st!!! I can not believe this year is winding down. One year ago I was dealing with a horrible flare of which I vowed to stay out of the Big H, extreme joint pain, Remicade infusions that weren't even working, 40mg of Prednisone(down from 70mg), a colonoscopy and CT scan and a cervical cancer scare and surgery to remove aggressive and quickly advancing precancerous cells. Last October and November were ROUGH!!! It just goes to show how much can change in a year. When you think you've hit the bottom, when the world is crumbling, if you just hang on and keep it together, you will look back a year later and amaze yourself at what you can overcome. We are all stronger than we think. We just have to give ourselves the chance to shine! Be well everyone. Thanks for reading. XOXO

Well hello out there internet land. it's been a bit since I've written so that could mean I feel fantastic or like total shit... it's been a little bit of both. I still wake up feeling absolutely liberated not having a rotting colon, and not having a bag 'o poo adhered to my torso. On the flip side, still dealing with pain that comes with rearranging my internal organs. First, a little factoid. The average person, from the moment of ingestion to elimination is anywhere from 18-48 hours depending on water and fiber intake. Your food leaves your stomach within 30 minutes and heads to the small bowel. The small bowel is not storage. In roughly 3-4 hours it sucks up the nutrients from the food and moves it into your colon. The colon absorbs water and electrolytes and anything left worth using and stores it until you have to go #2. Well, I don't have the colon anymore. So...after about 4-6 hours my food is gone. Sometimes that is very annoying. It can cause a bit more frequency than I'd like, but anything beats going 20-30 times a day, in pain, like I was before surgery. This leads to another factoid that I may have mentioned in the past. Your small bowel can not remove stomach acid from your waste. It never will. That's part of your colon's job, which I no longer have. To sum up- frequency + highly acidic poo = pain, misery and adult diaper rash. =( Still, I wouldn't go back. Life sucked pretty bad when I prefer a diaper rash. CRAZY.
I've started keeping a journal of when and what I eat, and subsequently, when I hit the throne. Wow- just reread that last part. I have seriously opened the flood gates into what should be the most hidden moments and details of what I'm dealing with and here I am sending it into the internet.

Here's me and my baby girl a few days ago when she turned 15 months. Happy I can spend time, run around and feeling so much better!!! =)

Here's a pretty recent pic of the FrankenBelly. Not as bad as I ever would have thought, but a lot of scar tissue that tends to give me pain if I move a certain way, or quickly. Yoga will not be possible for a bit. Just stretching in the morning hurts. Hoping it will slowly subside.

I've been using some scar fading stuff but not religiously. I'm obviously not too concerned. If it starts to fade as the vertical one did it won't be a big deal. It is very recessed though. Sunken in and weird. Everyone says it's look like a gunshot scar. I think my story is WAY better than a getting shot or knifed. I'll stick with the story about how I kicked UC's ass to the curb!! BOOM!

Had Halloween yesterday. It was so LOVELY to just stroll around the neighborhood, no urgency, with Dillan. The temps dropping brought us in, NOT MY GUTS!!!! That's a big deal. EVERY SINGLE moment, event, and day was impacted by my UC. Seriously it is as though the binds are gone. I was walking last night and pushing Violet thinking about how a year ago life was so different. I was ballooned from Prednisone. I hurt all over. My stepson B took Daughter #1 around because I wouldn't have lasted a block. This year I could have gone for hours. It was great. So liberating. A bonus---We have WAY too much candy left. It's going to be a food group for a while. My kids are damn cute!

I did full blown makeup to be a bearded lady... here's a before and an after----->

It was hard smiling in that thing. It was either Bearded lady or a Pig in a Blanket and it ended up being too warm to walk around wrapped in a blanket. I'm still not used to warm weather at Halloween. I subconsciously think I need the thermals under my costume!!
Here's me last year. I didn't even want my picture taken because the moon face was so bad and I was so ugly. I don't even recognize myself. How horrible that drug is. I think I packed on almost 40lbs too. I should have just put a bag over my fat head!!! =) And can you tell green is my favorite color. That's weird.

I have been thinking lately I want to do more in striving for IBD, ostomy and Pouch awareness. I don't know where to start. I think I'll contact my local CCFA. I really want to be out there as an advocate with my story and experience and make what we deal with and how it affects our lives a bit more center stage. It struck me the other day when I called my SSDI(Social Security Disability Insurance) attorney to update my file with my second surgery and how my meds changed and the woman at the office who I passed the message to said, "I'd ask what an Ostomy reversal is, but first I need to know what an ostomy is." It just took me aback. Is this stuff really that below the radar?? It shouldn't be. We are not that few and far between!!! Hello!!!! We all need to talk and get it out there. I'm sure at some point people were embarrassed to talk about breast cancer but now, there isn't one person who hasn't heard of breast cancer. And yet, they still spend millions every year on 'awareness'. Everyone is aware... in terms of that..it's time to just shift that money to research and treatment.
With IBD, there is little 'awareness'. Little understanding. Meds that rock our worlds and our bodies into worse situations. Other countries are leaping ahead with research and trials with intestinal transplants, fecal transplant etc... I would have been all on board for someone else's guts. Even one foot of colon would have to help right?? Ok, I'm off my soapbox and done contemplating biology and science I have to business contemplating. Have a great November 1st!!! I can not believe this year is winding down. One year ago I was dealing with a horrible flare of which I vowed to stay out of the Big H, extreme joint pain, Remicade infusions that weren't even working, 40mg of Prednisone(down from 70mg), a colonoscopy and CT scan and a cervical cancer scare and surgery to remove aggressive and quickly advancing precancerous cells. Last October and November were ROUGH!!! It just goes to show how much can change in a year. When you think you've hit the bottom, when the world is crumbling, if you just hang on and keep it together, you will look back a year later and amaze yourself at what you can overcome. We are all stronger than we think. We just have to give ourselves the chance to shine! Be well everyone. Thanks for reading. XOXO

My trip to the 716...

I can not believe I didn't blog about my trip in NY!!!
Wow- I must be losing it. Or lost it already. Whatever.
I had a really great time. NO issues with the TSA. I even put out a challenge by wearing my 'Ask me about my Ostomy' tshirt.

Nothing. Hmmmm..it was definitely a positive way to start the trip.
I was so worried about having issues with a body scanner or whatever and I didn't go through one at all. I don't think. Hmmm.. I was pretty distracted with all my gear, the stroller, Violet, taking shoes off etc... that I guess I didn't notice. I tend to get way worked up about stuff and then find out it was overkill. I guess I'd rather plan for the worst than get blindsided.
I spent most of my time with family. Saw my Gram a lot and her party was so much fun. I spent way too much time gabbing with people I hadn't seen and  didn't get in enough pics or take enough pics and I'm kicking myself. I tend to do that sometimes. I need to learn to shut up.
I made sure to get Tim Horton's coffee daily, I ate a lot of kick ass pizza that I am already craving, and had homemade sauce and meatballs three different days!!! Can't beat that.
My kids had a ball, especially Dillan. She was loving every minute with my female teenage cousins. She's ready to be 16 and it's scary. She loved her time with Sarina, Miranda and Alissa.
It was a really great time. I was really sad to leave everyone. I grew up really close with my cousins Toni and Marisa.The two of them and my sister and me were all the same ages and spent a lot of time together. Went to the same high school.  Your cousins are your first friends... glad I have them and we are still relatively close even living far away.
I was there 6 days which always seems like a lot until you are trying to fit people in, and go do this, see this etc... I probably needed ten. I had so much time until I had none. There were some people I didn't get much time with as schedules are crazy. Ten days may work a bit better next time.
I got to spend the day with my best friend on her birthday with all our girls. We had a fun outing at a pumpkin farm where chaos ensued as it always does with us. Then we tortured the diners at my favorite Greek restaurant with us and our five girls. Hahahaha.... I love seeing Dillan with Janelle's oldest Jillian. They are a year apart and are us. Seriously. They haven't seen each other in two years and were off together in 5 minutes like they were never apart. I absolutely love it!! It's those moments I miss and wish I could get back there more. It's just such a financial fee to fly my two kids and me to Buffalo. And then I need a rental car. I need to worry about who has the room to board us. I hate feeling like I am inconveniencing anyone. It was really great staying at my Aunt's though. She was wonderful and I had a great time talking and spending time with her.
I could never imagine living back there though. I can't handle the cold anymore. It is so beautiful in the fall so I'm glad we went when we did. I'm going to try to plan something maybe for the summer. I love my family, and miss them. It's important to me that my kids has time with them and have them in their lives even if we are 1500 miles away!
Violet was perfect on the flight home. Traveling with the girls by myself was a lot easier that I imagined. It helped that we had an empty seat with us the whole way back so Miss VIP got her own seat to sit in. Worked out perfectly!!
The ostomy was pretty well behaved. Weird that I no longer have it. All the Italian food made my nights a bit uncomfortable as those damn acidic tomatoes had me up a few times a night. I shared a room with the girls and OMG I barely slept. Violet snores, and Dillan talks in her her sleep. That meant I was a tired, hag every single day I was there. By the time I got back and went into the hospital the next day, I was ready for a nap!!
I think I finally finished laundry and unpacking from the trip a few days ago. Between going in the hospital the day after we returned and then recovery, I realized it had been a while since we got back and I never even blogged about it! Here are some pics. Missing everyone already!
XOXO

 My girls having pizza down my the river in Lewiston.

 My girls and me with my cousins and my Gramma at her party. Missing my sister.

 The girls on the plane on the way back to Dallas. Southwest was so good to us.

 At the pumpkin patch. Love fall in WNY.

My cousins Toni, Marisa, Dom and me. Miss these hang outs.

I can not believe I didn't blog about my trip in NY!!!
Wow- I must be losing it. Or lost it already. Whatever.
I had a really great time. NO issues with the TSA. I even put out a challenge by wearing my 'Ask me about my Ostomy' tshirt.

Nothing. Hmmmm..it was definitely a positive way to start the trip.
I was so worried about having issues with a body scanner or whatever and I didn't go through one at all. I don't think. Hmmm.. I was pretty distracted with all my gear, the stroller, Violet, taking shoes off etc... that I guess I didn't notice. I tend to get way worked up about stuff and then find out it was overkill. I guess I'd rather plan for the worst than get blindsided.
I spent most of my time with family. Saw my Gram a lot and her party was so much fun. I spent way too much time gabbing with people I hadn't seen and  didn't get in enough pics or take enough pics and I'm kicking myself. I tend to do that sometimes. I need to learn to shut up.
I made sure to get Tim Horton's coffee daily, I ate a lot of kick ass pizza that I am already craving, and had homemade sauce and meatballs three different days!!! Can't beat that.
My kids had a ball, especially Dillan. She was loving every minute with my female teenage cousins. She's ready to be 16 and it's scary. She loved her time with Sarina, Miranda and Alissa.
It was a really great time. I was really sad to leave everyone. I grew up really close with my cousins Toni and Marisa.The two of them and my sister and me were all the same ages and spent a lot of time together. Went to the same high school.  Your cousins are your first friends... glad I have them and we are still relatively close even living far away.
I was there 6 days which always seems like a lot until you are trying to fit people in, and go do this, see this etc... I probably needed ten. I had so much time until I had none. There were some people I didn't get much time with as schedules are crazy. Ten days may work a bit better next time.
I got to spend the day with my best friend on her birthday with all our girls. We had a fun outing at a pumpkin farm where chaos ensued as it always does with us. Then we tortured the diners at my favorite Greek restaurant with us and our five girls. Hahahaha.... I love seeing Dillan with Janelle's oldest Jillian. They are a year apart and are us. Seriously. They haven't seen each other in two years and were off together in 5 minutes like they were never apart. I absolutely love it!! It's those moments I miss and wish I could get back there more. It's just such a financial fee to fly my two kids and me to Buffalo. And then I need a rental car. I need to worry about who has the room to board us. I hate feeling like I am inconveniencing anyone. It was really great staying at my Aunt's though. She was wonderful and I had a great time talking and spending time with her.
I could never imagine living back there though. I can't handle the cold anymore. It is so beautiful in the fall so I'm glad we went when we did. I'm going to try to plan something maybe for the summer. I love my family, and miss them. It's important to me that my kids has time with them and have them in their lives even if we are 1500 miles away!
Violet was perfect on the flight home. Traveling with the girls by myself was a lot easier that I imagined. It helped that we had an empty seat with us the whole way back so Miss VIP got her own seat to sit in. Worked out perfectly!!
The ostomy was pretty well behaved. Weird that I no longer have it. All the Italian food made my nights a bit uncomfortable as those damn acidic tomatoes had me up a few times a night. I shared a room with the girls and OMG I barely slept. Violet snores, and Dillan talks in her her sleep. That meant I was a tired, hag every single day I was there. By the time I got back and went into the hospital the next day, I was ready for a nap!!
I think I finally finished laundry and unpacking from the trip a few days ago. Between going in the hospital the day after we returned and then recovery, I realized it had been a while since we got back and I never even blogged about it! Here are some pics. Missing everyone already!
XOXO

 My girls having pizza down my the river in Lewiston.

 My girls and me with my cousins and my Gramma at her party. Missing my sister.

 The girls on the plane on the way back to Dallas. Southwest was so good to us.

 At the pumpkin patch. Love fall in WNY.

My cousins Toni, Marisa, Dom and me. Miss these hang outs.

Reflection

<p>In less than 3 hours I'll be checking into the hospital again! I'm just laying here reflecting on everything that's gone on. Wondering what to do with all these ostomy supplies. I'm kind of feeling a little out of body... I can't believe it's almost done. I can't believe I'll be pooping again! Oh man!! I feel so normal with my stoma now and in a few hours SS will be gone. I feel like I'm getting on another roller coaster of unknowns. I definitely feel bittersweet about today. Excited about some closure and the end of this journey but anxious that this could open another round of issues. It's always possible. Hopefully not but you never know. I'm going to pack my bag and get ready to go.
I'm not scared. I don't understand that fear. I have more fear about it not being over. Hoping this is it. FrankenBelly is getting the hook up today. Pics and updates to follow! Have a great day everyone! Catch ya on the flipside.....guts intact!! Gutsy broad is ready to do this!

<p>In less than 3 hours I'll be checking into the hospital again! I'm just laying here reflecting on everything that's gone on. Wondering what to do with all these ostomy supplies. I'm kind of feeling a little out of body... I can't believe it's almost done. I can't believe I'll be pooping again! Oh man!! I feel so normal with my stoma now and in a few hours SS will be gone. I feel like I'm getting on another roller coaster of unknowns. I definitely feel bittersweet about today. Excited about some closure and the end of this journey but anxious that this could open another round of issues. It's always possible. Hopefully not but you never know. I'm going to pack my bag and get ready to go.
I'm not scared. I don't understand that fear. I have more fear about it not being over. Hoping this is it. FrankenBelly is getting the hook up today. Pics and updates to follow! Have a great day everyone! Catch ya on the flipside.....guts intact!! Gutsy broad is ready to do this!

35 and so, so wise from new lessons.

Hello internet friends....
It has been some time. I have had a lot going on and really have had nothing I felt would be slightly entertaining.
I turned 35 the other day. I have stopped counting. I will be 35 next year too. I have found my first grey hair. The fine lines around my eyes are more prominent than ever, despite my religious use of creams and potions and ALWAYS wearing sunglasses so I don't squint. I also wear them because I feel very incognito. You know- I have to throw off the paparazzi that stalk me. ;-)
I don't really like getting older. Well, I don't mind the number changing, but I'm not ready to be old. I'm not ready for anti-aging creams and fine lines. I'm only 25, 30, 35.... And boom, there they are. It doesn't help that I feel like I have lost a few years to UC. I lost my early 30s. To me those are prim years. You are not 'just' in your 20s to those older than you who still see you as a child no matter how much you've accomplished. And you are still far enough from 40 to still be a little stupid, a little crazy and not have people look at you like you don't have your life together because you are 40. You are close to your 20-something body. Your 20-something skin. Instead of having all that wonderful stuff, I had horrible skin and weight gain from prednisone. Moon face, hair falling out in clumps, arthritis, blood transfusions, 10 pills a day and a dozen or so other side effects from the many different meds I was on to try to get this shit (shitting?) under control. Perfect prime real estate of life in the toilet. Down the toilet. In more ways than one.
I know there are people older than me who will say I'm ONLY 35...I know, I know.... but in this moment I want those years back. I can't count how many times I told my daughter 'No' because I was in too much pain, or too much fatigue to play with her. Or that I couldn't go to the park because I was in the freaking bathroom AGAIN, 30 times a day. Up to 45 minutes at a time. In pain. Crying. I remember moments so bad I thought I was dying. I had told my Hubs, I think I'm dying. Begging, crying, wishing it would stop. And my little girl was so disappointed. Every time. Now she wants to know if she'll need her large intestine out. I tell her I hope not. I don't want to just say no and make a false promise. She's 7 now and recalls me always being sick. Missing me when I was in the hospital all those times. Remembering I was always too tired to play. I can't erase that. That bothers me. I call bullshit. Not for me, but for her. No kid should have to deal with that crap. Here's me and my oldest at dinner the other night. She's happy I can actually go to restaurants now and not watch everyone eat or spend it in the WC(water closet). I am too. ---->

In the last few days I've learned that a delicious filet mignon is not worth it. My body is not friends with red meat anymore. My delicious and expensive Birthday dinner made me extremely nauseous for hours. I hadn't felt like that since before surgery. So, no more red meat for me. Except McDonald's because I'm sure it's not real meat and for whatever reason it's the only fast food that has never made me sick in my life.
I've learned that a real, true best friend is hard to come by. One you have 'take to the grave' shit with, and can still laugh about the stuff you did at 15, when you are 35. Laugh until your stomach hurts about how dumb you were, and then five minutes later discuss something mature, like the dumb stuff you did at 30. ;-)
On the flip, I've learned that when you go through something and feel alone for so long, and then find a group of people who know your pain (online, who you'll probably never meet), you have a bond and a friendship that is truly open and non-judging. I've 'met' such great people on some of the Facebook support pages I've found that have made such a difference. It changed me from feeling isolated in my struggle, to wanting to speak out and inform and educate. That is such a great thing. For all the crap that is out there on the internet, it is so amazing when something positive and life impacting, comes from it.
Oh! I took a new 'hidden ostomy' picture from my night out on my Birthday.

 No one would ever think... and I wear whatever I want. As we've seen in my "I have no shame" pictures.
I have also learned that it is possible to have new, wonderful people come into your life in your 30s. Moving was difficult because it is hard to develop new, trusting friendships as you get older, especially because most of the time I have spent in Texas I have been sick. Luckily, my daughter was in Kinder with an awesome little girl who became her friend, and the extension of that is I am lucky to count her mom, Samara, as a friend now. Her kids are pretty fantastic too.

While I was changing my wafer yesterday I had a thought. I was looking at my abdomen and it occurred to me that I don't even notice the stoma anymore. It doesn't jump out at me anymore. It's just there. And then I realized in 2 weeks, I would be having my reversal and my body as I had gotten used to, would change again. It will be less gutting, more putting back together. FrankenBelly getting reworked. So I took a picture. Truly, in days the stoma will be gone. And I got a little sad. I went from being horrified to being sad in a few months???!! What? It's true. My stoma is generally easy. Yes, it can be a pain in the ass (not really, because that is physically impossible) but it's easy. It's smelly when I change the bag (like, whoa) but I have gotten use to the ease of it, and the never needing to poop part of it. That, my friends, is absolute heaven after years of dying a little 30 times a day.
Anyway, I got sad because now I have to get used to something else. Another recovery, another adjustment. Possible J pouch issues, and yes, possible pooping issues.
I will fight through it though... because at this point in life I am used to things most people can't imagine. I'm used to unbearable pain. Uncomfortable tests on modesty erasing body parts. I'm USED to it. No one should ever have to get used to it. My dad was complaining about his ONCE EVERY TEN YEAR Colonoscopy. Yeah- I couldn't even say welcome to my world because I'm pretty sure at one point I had 3 in less than a year. Once every ten!? Perfect!!
So, here's my pic of the abdomen I was worried about hating and then hating and now loving----->

I love my scar. I'm going to love my stoma scar too. I'm winning the war, not just the battle. It was a losing battle until my colectomy. The second my colon came out, I won. Life has been crazy. I think this coming year will be the best I've seen in a very long time. Looking forward to some good stuff. Two weeks from today is my reversal. Let's hope it goes without a hitch. So weird. I'm only going to have a stoma two more weeks. Funny how we adapt and things that seemed so overwhelming and dramatic become normal. I have a stoma. It's normal. Wow- I'm so enlightened now that I'm 35. =)

Thanks for reading.
Gutsy is off to bed.
XO

Hello internet friends....
It has been some time. I have had a lot going on and really have had nothing I felt would be slightly entertaining.
I turned 35 the other day. I have stopped counting. I will be 35 next year too. I have found my first grey hair. The fine lines around my eyes are more prominent than ever, despite my religious use of creams and potions and ALWAYS wearing sunglasses so I don't squint. I also wear them because I feel very incognito. You know- I have to throw off the paparazzi that stalk me. ;-)
I don't really like getting older. Well, I don't mind the number changing, but I'm not ready to be old. I'm not ready for anti-aging creams and fine lines. I'm only 25, 30, 35.... And boom, there they are. It doesn't help that I feel like I have lost a few years to UC. I lost my early 30s. To me those are prim years. You are not 'just' in your 20s to those older than you who still see you as a child no matter how much you've accomplished. And you are still far enough from 40 to still be a little stupid, a little crazy and not have people look at you like you don't have your life together because you are 40. You are close to your 20-something body. Your 20-something skin. Instead of having all that wonderful stuff, I had horrible skin and weight gain from prednisone. Moon face, hair falling out in clumps, arthritis, blood transfusions, 10 pills a day and a dozen or so other side effects from the many different meds I was on to try to get this shit (shitting?) under control. Perfect prime real estate of life in the toilet. Down the toilet. In more ways than one.
I know there are people older than me who will say I'm ONLY 35...I know, I know.... but in this moment I want those years back. I can't count how many times I told my daughter 'No' because I was in too much pain, or too much fatigue to play with her. Or that I couldn't go to the park because I was in the freaking bathroom AGAIN, 30 times a day. Up to 45 minutes at a time. In pain. Crying. I remember moments so bad I thought I was dying. I had told my Hubs, I think I'm dying. Begging, crying, wishing it would stop. And my little girl was so disappointed. Every time. Now she wants to know if she'll need her large intestine out. I tell her I hope not. I don't want to just say no and make a false promise. She's 7 now and recalls me always being sick. Missing me when I was in the hospital all those times. Remembering I was always too tired to play. I can't erase that. That bothers me. I call bullshit. Not for me, but for her. No kid should have to deal with that crap. Here's me and my oldest at dinner the other night. She's happy I can actually go to restaurants now and not watch everyone eat or spend it in the WC(water closet). I am too. ---->

In the last few days I've learned that a delicious filet mignon is not worth it. My body is not friends with red meat anymore. My delicious and expensive Birthday dinner made me extremely nauseous for hours. I hadn't felt like that since before surgery. So, no more red meat for me. Except McDonald's because I'm sure it's not real meat and for whatever reason it's the only fast food that has never made me sick in my life.
I've learned that a real, true best friend is hard to come by. One you have 'take to the grave' shit with, and can still laugh about the stuff you did at 15, when you are 35. Laugh until your stomach hurts about how dumb you were, and then five minutes later discuss something mature, like the dumb stuff you did at 30. ;-)
On the flip, I've learned that when you go through something and feel alone for so long, and then find a group of people who know your pain (online, who you'll probably never meet), you have a bond and a friendship that is truly open and non-judging. I've 'met' such great people on some of the Facebook support pages I've found that have made such a difference. It changed me from feeling isolated in my struggle, to wanting to speak out and inform and educate. That is such a great thing. For all the crap that is out there on the internet, it is so amazing when something positive and life impacting, comes from it.
Oh! I took a new 'hidden ostomy' picture from my night out on my Birthday.

 No one would ever think... and I wear whatever I want. As we've seen in my "I have no shame" pictures.
I have also learned that it is possible to have new, wonderful people come into your life in your 30s. Moving was difficult because it is hard to develop new, trusting friendships as you get older, especially because most of the time I have spent in Texas I have been sick. Luckily, my daughter was in Kinder with an awesome little girl who became her friend, and the extension of that is I am lucky to count her mom, Samara, as a friend now. Her kids are pretty fantastic too.

While I was changing my wafer yesterday I had a thought. I was looking at my abdomen and it occurred to me that I don't even notice the stoma anymore. It doesn't jump out at me anymore. It's just there. And then I realized in 2 weeks, I would be having my reversal and my body as I had gotten used to, would change again. It will be less gutting, more putting back together. FrankenBelly getting reworked. So I took a picture. Truly, in days the stoma will be gone. And I got a little sad. I went from being horrified to being sad in a few months???!! What? It's true. My stoma is generally easy. Yes, it can be a pain in the ass (not really, because that is physically impossible) but it's easy. It's smelly when I change the bag (like, whoa) but I have gotten use to the ease of it, and the never needing to poop part of it. That, my friends, is absolute heaven after years of dying a little 30 times a day.
Anyway, I got sad because now I have to get used to something else. Another recovery, another adjustment. Possible J pouch issues, and yes, possible pooping issues.
I will fight through it though... because at this point in life I am used to things most people can't imagine. I'm used to unbearable pain. Uncomfortable tests on modesty erasing body parts. I'm USED to it. No one should ever have to get used to it. My dad was complaining about his ONCE EVERY TEN YEAR Colonoscopy. Yeah- I couldn't even say welcome to my world because I'm pretty sure at one point I had 3 in less than a year. Once every ten!? Perfect!!
So, here's my pic of the abdomen I was worried about hating and then hating and now loving----->

I love my scar. I'm going to love my stoma scar too. I'm winning the war, not just the battle. It was a losing battle until my colectomy. The second my colon came out, I won. Life has been crazy. I think this coming year will be the best I've seen in a very long time. Looking forward to some good stuff. Two weeks from today is my reversal. Let's hope it goes without a hitch. So weird. I'm only going to have a stoma two more weeks. Funny how we adapt and things that seemed so overwhelming and dramatic become normal. I have a stoma. It's normal. Wow- I'm so enlightened now that I'm 35. =)

Thanks for reading.
Gutsy is off to bed.
XO

Chaos, whirlwind days and stress.

It hasn't been the greatest few days. I think the scar tissue I have internally is causing me pain. It's very weird, and it comes and goes. Stabbing pain that is not fun. All I can figure is that it's scar tissue. Adhesions maybe? Plus, the raw skin around my stoma is back with a mission to make me miserable. Trying to change my wafer the second I feel any itching and burning that indicates leaking. The eakin seals are randomly acting differently than they have in the past. Melting quickly and coming up and out into my bag. I may have to go back to paste which isn't my first choice because of the alcohol in it and it burns like a bitch.
SO between the raw skin pain and the random internal pain, I don't want to do anything. And today is Monday and Monday's are going to suck. Dillan is home from school at 320. She has swim from 530-6 and then Girl Scouts immediately following swim until 730pm. And I mean immediate. As in, changing in the car and going to the meeting wet. UGh--- fun.. and then I find something random to do, probably with Violet, to kill time until she's done. It's just far enough away from home to not make driving home worth it. In the meantime today, I have returns to make. You know what- screw it. I'll do all that crap while she's at Scouts. Why bother Taxi driving around twice today. Perfect! Now I can be a slug and lay around. Excellent problem solving Lisa. EXCELLENT!! =)
Still am not prepared for the trip I'm taking with two kids in 15 days. Clothes need to be bought for everyone because they are in fall temps in NY. Kids have nothing yet in terms of jeans etc... It's still in the 90s here.
I am still on a hunt for a pack N Play for VIP to sleep in while I'm up there. I may need to put out a request via FB to find one. I like things to be all set when I get there. I can't stand things being hectic and chaotic. It makes me nuts. And I still have to find something cute for my Gram's party, as nothing fits me AGAIN. I change weights way too much. I need to keep an entire size run of everything in my closet. Hopefully after surgery in October my weight will finally stop fluctuating and I can get into an exercise routine. Yeah- great plan. I want to go back to work after I've recovered so we'll see. Between Dillan's activities, Mat's teaching and training, that will be interesting. Part time here I come. I guess that is probably best since I haven't had to be full time since June 2010. I will need to readjust. My body will have to readjust. Fun times ahead.
In the meantime, I'm taking an online course I need so it's not too bad with consuming time. I got a 95 on my first assignment so if that's any indication, this should go well.
Completely hit my supply amount for bags. I can't reorder until the 15th. Not smart. So I have some minibags that last like 2 hours at most and those are going fast. It looks like I'll be going back to gross draining pouches until the 15th. I need to have all my supplies ready to go because I wil be over packing them for my trip. It's not like I can run to CVS and pick up Eakin seals!! So, let's hope I pack enough and have no issues. Fingers crossed!!!
My stoma is no longer SS for stupid stoma...it is SS for shrinking stoma. This thing just keeps getting smaller. The 3/4 inch stoma opening is too big and I think that's what is causing my issues. Just requested some wafers that are smaller. Hopefully they'll get here fast! If those work I'll have to order the new size and send back the two boxes of wafers I just got shipped. The fun never ends people! NEVER!!! =)

Just wanted to take a moment to say that I really am hands down, a kick ass mom. Why you ask? Well, when Dillan was around 12-18 months, I taught her how to sake her butt on command by saying 'Shake your booty". Well, it was not a fluke, ladies and gents. Violet now stands and shakes her money maker on command when you say, "Shake your booty". Yes, I am so proud. Just beaming. ;-) Let's hope there are no poles in their future. Hee hee.
On that note- I'm going to attempt to take my little booty shaker to lunch. Mat is a workout addict and went to the gym, (A new gym. In addition to his evening training and teaching 2 days), so she's going to be my lunch date. I need someone to set a fire under my ass after this next surgery. I feel like a weakling. I hate that. And the bingo arm is out of control! Holy crap.
Ok.. I need to eat! I am a skinnyfat girl after all!
Have a great day! Thanks for reading! XO

It hasn't been the greatest few days. I think the scar tissue I have internally is causing me pain. It's very weird, and it comes and goes. Stabbing pain that is not fun. All I can figure is that it's scar tissue. Adhesions maybe? Plus, the raw skin around my stoma is back with a mission to make me miserable. Trying to change my wafer the second I feel any itching and burning that indicates leaking. The eakin seals are randomly acting differently than they have in the past. Melting quickly and coming up and out into my bag. I may have to go back to paste which isn't my first choice because of the alcohol in it and it burns like a bitch.
SO between the raw skin pain and the random internal pain, I don't want to do anything. And today is Monday and Monday's are going to suck. Dillan is home from school at 320. She has swim from 530-6 and then Girl Scouts immediately following swim until 730pm. And I mean immediate. As in, changing in the car and going to the meeting wet. UGh--- fun.. and then I find something random to do, probably with Violet, to kill time until she's done. It's just far enough away from home to not make driving home worth it. In the meantime today, I have returns to make. You know what- screw it. I'll do all that crap while she's at Scouts. Why bother Taxi driving around twice today. Perfect! Now I can be a slug and lay around. Excellent problem solving Lisa. EXCELLENT!! =)
Still am not prepared for the trip I'm taking with two kids in 15 days. Clothes need to be bought for everyone because they are in fall temps in NY. Kids have nothing yet in terms of jeans etc... It's still in the 90s here.
I am still on a hunt for a pack N Play for VIP to sleep in while I'm up there. I may need to put out a request via FB to find one. I like things to be all set when I get there. I can't stand things being hectic and chaotic. It makes me nuts. And I still have to find something cute for my Gram's party, as nothing fits me AGAIN. I change weights way too much. I need to keep an entire size run of everything in my closet. Hopefully after surgery in October my weight will finally stop fluctuating and I can get into an exercise routine. Yeah- great plan. I want to go back to work after I've recovered so we'll see. Between Dillan's activities, Mat's teaching and training, that will be interesting. Part time here I come. I guess that is probably best since I haven't had to be full time since June 2010. I will need to readjust. My body will have to readjust. Fun times ahead.
In the meantime, I'm taking an online course I need so it's not too bad with consuming time. I got a 95 on my first assignment so if that's any indication, this should go well.
Completely hit my supply amount for bags. I can't reorder until the 15th. Not smart. So I have some minibags that last like 2 hours at most and those are going fast. It looks like I'll be going back to gross draining pouches until the 15th. I need to have all my supplies ready to go because I wil be over packing them for my trip. It's not like I can run to CVS and pick up Eakin seals!! So, let's hope I pack enough and have no issues. Fingers crossed!!!
My stoma is no longer SS for stupid stoma...it is SS for shrinking stoma. This thing just keeps getting smaller. The 3/4 inch stoma opening is too big and I think that's what is causing my issues. Just requested some wafers that are smaller. Hopefully they'll get here fast! If those work I'll have to order the new size and send back the two boxes of wafers I just got shipped. The fun never ends people! NEVER!!! =)

Just wanted to take a moment to say that I really am hands down, a kick ass mom. Why you ask? Well, when Dillan was around 12-18 months, I taught her how to sake her butt on command by saying 'Shake your booty". Well, it was not a fluke, ladies and gents. Violet now stands and shakes her money maker on command when you say, "Shake your booty". Yes, I am so proud. Just beaming. ;-) Let's hope there are no poles in their future. Hee hee.
On that note- I'm going to attempt to take my little booty shaker to lunch. Mat is a workout addict and went to the gym, (A new gym. In addition to his evening training and teaching 2 days), so she's going to be my lunch date. I need someone to set a fire under my ass after this next surgery. I feel like a weakling. I hate that. And the bingo arm is out of control! Holy crap.
Ok.. I need to eat! I am a skinnyfat girl after all!
Have a great day! Thanks for reading! XO

Doubt and procrastination. A nasty cocktail.

I've been meaning to sit down and write for a few days but for some reason have had zero energy. So sluggish. Not sure what it is. Went off my Lomotil because I was sick of being out of it and stoned all day but my body went right back to high liquid output. My lightheadedness came back and my bags were filling nonstop and it was annoying. So- back to the Lomotil <Sigh>.
I scheduled my reversal surgery for October 5th. My surgeon said everything looks awesome. By the time October comes around I should have very little chance of adhesions and no inflammation left which will decrease the chance of complications. It should take him about 90 minutes maximum, ideally. Maybe 4 days in the hospital depending on how long it takes for my intestines to 'wake up'. That means poop to all my non-IBD friends. Guts are very sluggish after surgery, after prep. For me, most of my small intestines haven't been used since May 20th. It's going to be interesting. Very excited. I put in what should be my last order of ostomy supplies today. It will be nice to have that drawer back in my bathroom. As excited as I am about surgery, there is this little part of me that thinks, "Maybe I should just keep the stoma". Weird huh?! It's just that, I know what to expect with the stoma. I've gotten used to it. We understand each other now. I'm not pissed off at it anymore because our relationship has grown over the last 3+ months.  =) So yes, there's a part of me that is slightly intimidated by the unknown of the J pouch. I know it's going to be an adjustment. Big time. More importantly, completely inconvenient to poop again! Hahahaha..seriously. Totally weird. So I'm kinda struggling with that one. I don't know. Excited and a little anxious. Hoping it doesn't throw my life into a tizzy again. So, I'm basically counting down. It'll come at a good time too. Right about when I need to start wearing jeans and pants. Right now, summer dresses are easy and accomodate the wafer. Buttoning pants over it is tough, and searching for pants that sit low enough to be under it while not having my ass hang out is a challenge. I'm not a fan of the escaping butt crack. Trashy!!
My skin was doing so awesome... right now I'm just dealing with it being raw. It's weeping through the adhesive. I think it's because I've been slacking on blow drying the adhesive after showering. My skin staying wet under it is not creating a good environment. Ugh. So I'll be changing it daily for a few days to hopefully get rid of the inflammation. A few months ago I would have cried over this. Now- I have my life back so these little issues are a pretty fair trade off!!
I'm ok with my stoma. Looking forward to see how this J pouch works- but for now, life is good. No complaints. If this is how life is with no colon, I'm good!! And happy! =)

Loving bright color block denim for fall. So far I've bought this blue, red, green and I also got a grey leopard print! Obnoxious! Love it!! =) Now if only this hell fire weather would knock it off. 100 degrees still! Make it stop!! Ugh.
Dillan has her first swim team practice today!!! So exciting. She better love it because the check already cleared! ;-)
I'm counting down to flying to NY with the girls at the end of this month. Nervous about how Violet is going to be. I had always bought Dillan a seat when she was young and just had her in her carseat in the plane. This time I didn't and she's NOT going to be happy having to sit on laps. This kid loves to GO... Every day I get closer is a day I get more stressed about it. I'm going to be one of THOSE parents. I know it. I can already feel the eyes burning holes in me because my 14 month old is going to be a total spaz! I want to fast forward through that flight. I'm not even that stressed about my ostomy and the TSA compared to Violet. I'm sure it will make for a great story. :-/

For some odd reason, the days go by FASTER now that the kids are in school. It's already noon. It feels like I just woke up! I've accomplished nothing but a shower. I have about 5 crafts I keep 'meaning' to do but just haven't done it. Ridiculous. I'm such a procrastinator. Not sure why... nothing I have to do is stressful or causes anxiety. I've always been this way. Even with easy stuff. I'm an oddball.
Hope everyone had a great long Labor Day weekend.

I stumbled across this quote from Roald Dahl and I'll leave you with it---->
One of my favorite childhood authors.
"...if you have good thoughts they will shine out of your face like sunbeams and you will always look lovely.” 

Thanks for reading. Feel free to share! XO

I've been meaning to sit down and write for a few days but for some reason have had zero energy. So sluggish. Not sure what it is. Went off my Lomotil because I was sick of being out of it and stoned all day but my body went right back to high liquid output. My lightheadedness came back and my bags were filling nonstop and it was annoying. So- back to the Lomotil <Sigh>.
I scheduled my reversal surgery for October 5th. My surgeon said everything looks awesome. By the time October comes around I should have very little chance of adhesions and no inflammation left which will decrease the chance of complications. It should take him about 90 minutes maximum, ideally. Maybe 4 days in the hospital depending on how long it takes for my intestines to 'wake up'. That means poop to all my non-IBD friends. Guts are very sluggish after surgery, after prep. For me, most of my small intestines haven't been used since May 20th. It's going to be interesting. Very excited. I put in what should be my last order of ostomy supplies today. It will be nice to have that drawer back in my bathroom. As excited as I am about surgery, there is this little part of me that thinks, "Maybe I should just keep the stoma". Weird huh?! It's just that, I know what to expect with the stoma. I've gotten used to it. We understand each other now. I'm not pissed off at it anymore because our relationship has grown over the last 3+ months.  =) So yes, there's a part of me that is slightly intimidated by the unknown of the J pouch. I know it's going to be an adjustment. Big time. More importantly, completely inconvenient to poop again! Hahahaha..seriously. Totally weird. So I'm kinda struggling with that one. I don't know. Excited and a little anxious. Hoping it doesn't throw my life into a tizzy again. So, I'm basically counting down. It'll come at a good time too. Right about when I need to start wearing jeans and pants. Right now, summer dresses are easy and accomodate the wafer. Buttoning pants over it is tough, and searching for pants that sit low enough to be under it while not having my ass hang out is a challenge. I'm not a fan of the escaping butt crack. Trashy!!
My skin was doing so awesome... right now I'm just dealing with it being raw. It's weeping through the adhesive. I think it's because I've been slacking on blow drying the adhesive after showering. My skin staying wet under it is not creating a good environment. Ugh. So I'll be changing it daily for a few days to hopefully get rid of the inflammation. A few months ago I would have cried over this. Now- I have my life back so these little issues are a pretty fair trade off!!
I'm ok with my stoma. Looking forward to see how this J pouch works- but for now, life is good. No complaints. If this is how life is with no colon, I'm good!! And happy! =)

Loving bright color block denim for fall. So far I've bought this blue, red, green and I also got a grey leopard print! Obnoxious! Love it!! =) Now if only this hell fire weather would knock it off. 100 degrees still! Make it stop!! Ugh.
Dillan has her first swim team practice today!!! So exciting. She better love it because the check already cleared! ;-)
I'm counting down to flying to NY with the girls at the end of this month. Nervous about how Violet is going to be. I had always bought Dillan a seat when she was young and just had her in her carseat in the plane. This time I didn't and she's NOT going to be happy having to sit on laps. This kid loves to GO... Every day I get closer is a day I get more stressed about it. I'm going to be one of THOSE parents. I know it. I can already feel the eyes burning holes in me because my 14 month old is going to be a total spaz! I want to fast forward through that flight. I'm not even that stressed about my ostomy and the TSA compared to Violet. I'm sure it will make for a great story. :-/

For some odd reason, the days go by FASTER now that the kids are in school. It's already noon. It feels like I just woke up! I've accomplished nothing but a shower. I have about 5 crafts I keep 'meaning' to do but just haven't done it. Ridiculous. I'm such a procrastinator. Not sure why... nothing I have to do is stressful or causes anxiety. I've always been this way. Even with easy stuff. I'm an oddball.
Hope everyone had a great long Labor Day weekend.

I stumbled across this quote from Roald Dahl and I'll leave you with it---->
One of my favorite childhood authors.
"...if you have good thoughts they will shine out of your face like sunbeams and you will always look lovely.” 

Thanks for reading. Feel free to share! XO

Just some bitching.. I'm fired up!

I'm feeling crabby today so I'm going to do some bitching.

First of all, got a second denial letter from SSDI. It is a good thing they aren't a bank because you'd never be able to withdraw your own money. Once again they said that in all the time I was sick, being hospitalized, on tons of meds, getting blood transfusions, in severe pain, in the bathroom 20+ times a day, and requiring an entire organ to be removed, I should have had no problem maintaining FT work. And as long as I was following my doctors orders I was A okay. My doctor's orders weren't working, which is why the doctor's decided I needed to be gutted. Soooooo.... Riiiiggghhhtttttt... Delusional mother F*ckers. Mind you, I'm not applying for open ended disability. My attorney is seeking a closed window payment of the time I could not work from my first hospitalization until when I recover from this last surgery. I am well aware that I will be healthy enough to work after my recovery. In fact, you bureaucratic assholes, I welcome it. But don't tell me that I could have been working all this time no problem. I couldn't have and I didn't. But it's fine... you just hang on to MY MONEY that I have been paying into since I was 16 when I got my first job. You know, paying into it in case I ever need it. Like RIGHT NOW!!!!!!!! Yes, instead keep denying me...so now we need to appeal it, and go to court and take up court time and government employee time to go to court. That sounds like a much more efficient plan than JUST GIVING ME A SHORT TERM stipend of MY MONEY because I was/is unable to work due to a disease. Healthy people do not need organs removed in order to improve their life and thrive. AARRGHHHH...... So irritated. Seriously. HEADS UP THEIR ASSES.

My second rant comes a discussions going on in a Facebook group I'm in for Crohn's/Colitis. Basically it's discussing how people think they can give advice on how we IBD'ers can 'cure' ourselves and get rid of our symptoms. Now, that being said, we all know the average person is basically uninformed about general biology. The reason I make that statement is because it is proven to me again and again on a daily basis. People are ignorant. If they weren't, companies wouldn't be making millions of dollars off of people for quick gimmick weight loss pills/diets, or fat burning cream you rub on at night. Yeah, your body just doesn't work that way. So, how is it, that the average person suddenly becomes a digestive expert when you have IBD? Hmmmm.... that's weird? Oh, I need to lose weight and my disease will go away? Oh, I need to exercise more and my disease will go away? Oh, I need to watch my diet and my disease will go away? Such an interesting school of thought. But, ahh no. My disease went away when they TOOK THE DISEASED ORGAN OUT!!!!!!! People- keep your mouths shut about shit you know nothing about. You are not well read on autoimmune diseases (and NO they are NOT the same thing as AIDS so that's a great response when I tell you I have an autoimmune disease. Clever). Go back to being experts on the Kardashians, and 'Toddlers and Tiaras'. My GI spent years trying to get my disease under control with no success. But suddenly, you, who probably doesn't know the first thing about how your colon works, is going to give advice on my illness. The illness I'm living with, and have spent countless days reading and researching what was going on with my body. Reading about and trying every drug out there, who's side effects generally are worse than me dealing with UC. Yes, I'm sure if I ate more veggies I'd be swell. Too bad roughage is like the archenemy of IBD. But thanks! I'll consider your suggestion of green leafy veggies that will tear the shit out of my insides and make me run to the bathroom in 20 minutes where I will spend 3 days bleeding out my ass from your salad suggestion. Yes, by all means, preach it. It might work. Doubtful. You know what WOULD work?! If you listened to what an IBD'er is saying. If you didn't cut them off and say you understand b/c Taco Bell makes you shit your brains out. And maybe, just maybe, if you gave half a shit, you'd do some reading. Get some general knowledge about the human body. It is actually quite helpful to know how your body works, sick or not. But hey, what do I know. I just live it.

That is all.. I had more but I'm too crabby to even listen to myself rant. Maybe I should take that leftover Valium from my hypaque enema. Still having weird discomfort from that a week later. Discomfort is the wrong word.... How can I put this simply..... my ass hurts. Bad. You people with your anal sex are completely out of your effin mind. You must be masochists. Seriously. OMG.
Ugh--- ok, I'm sick of myself right now. Thanks for listening and sorry for the potty mouth today. I try to hide my sailor language tendencies online, but today it wasn't happening.
On the positive I got my haircut yesterday and I feel like a million bucks. Maybe 2 mill.
Cheers everyone.

I'm feeling crabby today so I'm going to do some bitching.

First of all, got a second denial letter from SSDI. It is a good thing they aren't a bank because you'd never be able to withdraw your own money. Once again they said that in all the time I was sick, being hospitalized, on tons of meds, getting blood transfusions, in severe pain, in the bathroom 20+ times a day, and requiring an entire organ to be removed, I should have had no problem maintaining FT work. And as long as I was following my doctors orders I was A okay. My doctor's orders weren't working, which is why the doctor's decided I needed to be gutted. Soooooo.... Riiiiggghhhtttttt... Delusional mother F*ckers. Mind you, I'm not applying for open ended disability. My attorney is seeking a closed window payment of the time I could not work from my first hospitalization until when I recover from this last surgery. I am well aware that I will be healthy enough to work after my recovery. In fact, you bureaucratic assholes, I welcome it. But don't tell me that I could have been working all this time no problem. I couldn't have and I didn't. But it's fine... you just hang on to MY MONEY that I have been paying into since I was 16 when I got my first job. You know, paying into it in case I ever need it. Like RIGHT NOW!!!!!!!! Yes, instead keep denying me...so now we need to appeal it, and go to court and take up court time and government employee time to go to court. That sounds like a much more efficient plan than JUST GIVING ME A SHORT TERM stipend of MY MONEY because I was/is unable to work due to a disease. Healthy people do not need organs removed in order to improve their life and thrive. AARRGHHHH...... So irritated. Seriously. HEADS UP THEIR ASSES.

My second rant comes a discussions going on in a Facebook group I'm in for Crohn's/Colitis. Basically it's discussing how people think they can give advice on how we IBD'ers can 'cure' ourselves and get rid of our symptoms. Now, that being said, we all know the average person is basically uninformed about general biology. The reason I make that statement is because it is proven to me again and again on a daily basis. People are ignorant. If they weren't, companies wouldn't be making millions of dollars off of people for quick gimmick weight loss pills/diets, or fat burning cream you rub on at night. Yeah, your body just doesn't work that way. So, how is it, that the average person suddenly becomes a digestive expert when you have IBD? Hmmmm.... that's weird? Oh, I need to lose weight and my disease will go away? Oh, I need to exercise more and my disease will go away? Oh, I need to watch my diet and my disease will go away? Such an interesting school of thought. But, ahh no. My disease went away when they TOOK THE DISEASED ORGAN OUT!!!!!!! People- keep your mouths shut about shit you know nothing about. You are not well read on autoimmune diseases (and NO they are NOT the same thing as AIDS so that's a great response when I tell you I have an autoimmune disease. Clever). Go back to being experts on the Kardashians, and 'Toddlers and Tiaras'. My GI spent years trying to get my disease under control with no success. But suddenly, you, who probably doesn't know the first thing about how your colon works, is going to give advice on my illness. The illness I'm living with, and have spent countless days reading and researching what was going on with my body. Reading about and trying every drug out there, who's side effects generally are worse than me dealing with UC. Yes, I'm sure if I ate more veggies I'd be swell. Too bad roughage is like the archenemy of IBD. But thanks! I'll consider your suggestion of green leafy veggies that will tear the shit out of my insides and make me run to the bathroom in 20 minutes where I will spend 3 days bleeding out my ass from your salad suggestion. Yes, by all means, preach it. It might work. Doubtful. You know what WOULD work?! If you listened to what an IBD'er is saying. If you didn't cut them off and say you understand b/c Taco Bell makes you shit your brains out. And maybe, just maybe, if you gave half a shit, you'd do some reading. Get some general knowledge about the human body. It is actually quite helpful to know how your body works, sick or not. But hey, what do I know. I just live it.

That is all.. I had more but I'm too crabby to even listen to myself rant. Maybe I should take that leftover Valium from my hypaque enema. Still having weird discomfort from that a week later. Discomfort is the wrong word.... How can I put this simply..... my ass hurts. Bad. You people with your anal sex are completely out of your effin mind. You must be masochists. Seriously. OMG.
Ugh--- ok, I'm sick of myself right now. Thanks for listening and sorry for the potty mouth today. I try to hide my sailor language tendencies online, but today it wasn't happening.
On the positive I got my haircut yesterday and I feel like a million bucks. Maybe 2 mill.
Cheers everyone.