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!

happy colonlessiversary...or something.

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

From being stapled shut after surgery---->

40 staples

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

FrankenBelly

Two days ago on World IBD Day.

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

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

From being stapled shut after surgery---->

40 staples

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

FrankenBelly

Two days ago on World IBD Day.

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

My lips are Sealed. Day#3

Ciao!! Today's writing challenge is anything but. Here it is from WEGO.

---->>> It's Day 3 everyone, and it's our first "Wordless Wednesday"!

Post a picture that symbolizes your condition and your experiences.

I can not pick one picture to symbolize what my struggle has been as there have been many different ups and downs and phases. So I picked three that I felt had good visual impact for the varying degrees of status! Enjoy...

Smiling through excruciating pain. That was all I could do to cope with it all. 

Embracing my ostomy. I didn't slow my life down after my colectomy. Instead, it was very much the opposite.

Miss Semi-colon. Doing things confidently I haven't been able to do in years. Things 'normal' people take for granted. A 15 minute car ride for instance. That can be scary when you have no control over your malfunctioning and diseased colon. 

Ciao!! Today's writing challenge is anything but. Here it is from WEGO.

---->>> It's Day 3 everyone, and it's our first "Wordless Wednesday"!

Post a picture that symbolizes your condition and your experiences.

I can not pick one picture to symbolize what my struggle has been as there have been many different ups and downs and phases. So I picked three that I felt had good visual impact for the varying degrees of status! Enjoy...

Smiling through excruciating pain. That was all I could do to cope with it all. 

Embracing my ostomy. I didn't slow my life down after my colectomy. Instead, it was very much the opposite.

Miss Semi-colon. Doing things confidently I haven't been able to do in years. Things 'normal' people take for granted. A 15 minute car ride for instance. That can be scary when you have no control over your malfunctioning and diseased colon. 

What's left behind..

So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

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

Pain with a capital P.

I just wanted an easy transition. Not getting it. The surgical pain has been nothing. The intestinal pain on the other hand has been intense. The majority of my small bowel wasn't used for months. Now, it is not happy to be put back to work. I am in pain. I can not describe the internal/maybe rectal? pain that occurs when something starts moving into that area. It paralyzes me for a few moments. So intense I feel like I may have an accident. Then is passes like it never happened. I can only assume that feeling is waste entering the newly formed pouch. I am still trying to figure out how things feel. Having to go #2 feels completely different now that I'm using different body parts to do it. So, trying to discern what is just intestinal pain vs the urge to go has been a challenge this last week. I end up hanging out in the shitter because I don't know if I'm in pain, or if I have to go. So obnoxious.
For those who are unfamiliar with the Jpouch, here's an image of what my insides basically look like now after all the surgeries are done.

I have to keep reminding myself that it generally takes up to a year for the Jpouch and system to adapt and become somewhat normal. I'm only 11 days post OP. Everything is a very slow adjustment process. My small intestine needs to start absorbing more water so my 'output' is more solid. Yeah, there's a nice visual. HOT!!
I'm completely out of my mind thinking I should be able to pick up my crazy life and run with it. It hurts to sit sometimes. 11 days is nothing. I need to snap out of it. I almost look normal, so I want to feel normal. Patience is not my strongest quality. It might not even be a quality I have.
 Here's pic from today of FrankenBelly. It looks so gross.

It's so scabby and itchy and it actually is very uncomfortable. Hopefully my wound care nurse can pop them out tomorrow. They are now to the point where it hurts because my body wants them gone. Ewwww.. and I'm totally a scab picker so you have no idea what kind of will power it is taking for me not to go after this thing. A lot. Tons. It's ridiculous how bad I want to pick at it.
So, I'm plugging away. There's a ton of stuff I want to do to this house that I haven't been able to because I've been sick for 100 years. Slowly putting my ideas to work so right now that is keeping me motivated. All my ideas cost money though, of which I am officially running out of all the cash I had stashed away. Looking at my bank account brings back the thoughts of now what and wondering what the hell I'm good at and where to go from here. So, I'll stop thinking about it for now. It gets me really upset. How am I 35 and feel so lost out of nowhere? Ok- I'm done.
New entryway wall unit soon, new paint for the downstairs bathroom and I plan on painting our island in the kitchen to change things up a bit. Fun stuff. I'll start buying the Lotto tickets anytime. I think Lotto winner sounds like a perfectly acceptable career!
Have a great day everyone.
XO

I just wanted an easy transition. Not getting it. The surgical pain has been nothing. The intestinal pain on the other hand has been intense. The majority of my small bowel wasn't used for months. Now, it is not happy to be put back to work. I am in pain. I can not describe the internal/maybe rectal? pain that occurs when something starts moving into that area. It paralyzes me for a few moments. So intense I feel like I may have an accident. Then is passes like it never happened. I can only assume that feeling is waste entering the newly formed pouch. I am still trying to figure out how things feel. Having to go #2 feels completely different now that I'm using different body parts to do it. So, trying to discern what is just intestinal pain vs the urge to go has been a challenge this last week. I end up hanging out in the shitter because I don't know if I'm in pain, or if I have to go. So obnoxious.
For those who are unfamiliar with the Jpouch, here's an image of what my insides basically look like now after all the surgeries are done.

I have to keep reminding myself that it generally takes up to a year for the Jpouch and system to adapt and become somewhat normal. I'm only 11 days post OP. Everything is a very slow adjustment process. My small intestine needs to start absorbing more water so my 'output' is more solid. Yeah, there's a nice visual. HOT!!
I'm completely out of my mind thinking I should be able to pick up my crazy life and run with it. It hurts to sit sometimes. 11 days is nothing. I need to snap out of it. I almost look normal, so I want to feel normal. Patience is not my strongest quality. It might not even be a quality I have.
 Here's pic from today of FrankenBelly. It looks so gross.

It's so scabby and itchy and it actually is very uncomfortable. Hopefully my wound care nurse can pop them out tomorrow. They are now to the point where it hurts because my body wants them gone. Ewwww.. and I'm totally a scab picker so you have no idea what kind of will power it is taking for me not to go after this thing. A lot. Tons. It's ridiculous how bad I want to pick at it.
So, I'm plugging away. There's a ton of stuff I want to do to this house that I haven't been able to because I've been sick for 100 years. Slowly putting my ideas to work so right now that is keeping me motivated. All my ideas cost money though, of which I am officially running out of all the cash I had stashed away. Looking at my bank account brings back the thoughts of now what and wondering what the hell I'm good at and where to go from here. So, I'll stop thinking about it for now. It gets me really upset. How am I 35 and feel so lost out of nowhere? Ok- I'm done.
New entryway wall unit soon, new paint for the downstairs bathroom and I plan on painting our island in the kitchen to change things up a bit. Fun stuff. I'll start buying the Lotto tickets anytime. I think Lotto winner sounds like a perfectly acceptable career!
Have a great day everyone.
XO

1 week down.... Now what?

Well, well... Here we are. So much was leading up to this. Anticipation, fear, excitement, anxiety... it was all rather anticlimactic in the end. Truly. I am so happy I have gone through it all, but I guess to put it simply, pooping again is just really nothing to jump for joy about! ;-) I am neither overly excited or relieved. Life just is... in a small way it is like I just got back on the highway after being on a really shitty rural detour for a few years. I guess I was expecting some mental fanfare or elation. Nothing. Woke up, stoma gone. Ok. Moving on.

Discharge day!!! ------->> Time to carry on....

I am one week post OP from my ileostomy reversal. It was a piece of cake. Honestly. After the pain and recovery from the colectomy, this was a breeze. The hardest part this past week was not eating for over 4 days in the hospital and the migraines and nausea it caused. Throwing up with nothing but a popsicle in your body in 4 days hurts. Bad. And all that abdominal contracting from throwing up made my incision and former stoma site hurt more than ever. I don't know how many of you have gone multiple days without eating or drinking but it is horrible. I've done it multiple times now. I ate Tuesday afternoon and got a popsicle on Friday evening. Not even ice chips in between. Torture. Then, I didn't eat actual food of substance (mashed potatoes, chicken noodle soup- the dreaded Low Res Diet) until Sunday. Seriously having GI issues and surgery is the worst for that stuff. They starve you. You go nuts. Luckily, those IV fluids kept me alive!!
Aside from that (NBD), the hospital stay was easy. The floor was quiet, I didn't have any nurse drama and didn't have to report anyone for not giving me my pain meds! SUCCESS!!!! I have 6 staples in my FrankenBelly. They are already itching like MAD!!! The pain has been tolerable. They gave me 10mg Norco and said to take 2 every 4-6 hours but I would be drooling on myself. I'm taking 5 every few hours and it is completely enough. I do have some soreness (not pain) doing that but I'd rather be functional and a little sore. I've had worse so I'll live. Here's some of me the night of surgery. ------>

 Obviously I'm drugged and happy?? Ok... guess I was feeling ok. Happy to be a JPoucher!

By this time, I am way puffy from fluid. Obviously zonked and may be in pain by the telltale canyons between my eyes that are screaming for botox. The oxygen is a good look.


Here's the incision the day after surgery. I laughed when I saw it.

Me, tired the day after ------->>>

As of today I have had some half-caff coffee, some pepsi, iced tea, mashed potatoes and gravy about 6 times, cooked ground turkey once, cooked carrots once, some french fries once, eggs twice, pancakes twice, bread, ice cream once, and a chicken sandwich once. That's been it in a week. I'll spice it up and maybe have macaroni tonight. ;-)
It will be so good that my health issues will no longer be a burden on my family. I'm out of commission and the entire house is crazy. Dillan is not good when I'm in the hospital. Mat stresses doing it all, while trying to work at home. Even during recovery now, I can't lift more than 10lbs so that obviously rules out the munchkin. Well, Mat has commitments that he can't bring a toddler to, and we have to debate leaving her here and what are the chances I'll have to carry her. And NATURALLY her separation anxiety has kicked in full force. She wants to be carried constantly. Nice timing, kid.... Nice.

So now what? That's been my question to myself. Now what. yes, I definitely have some recovering to do still, and adjusting to my brand new digestive system, but if this is as bad as it's going to be then I'm good. So now what? Sick has kinda been my thing. I never defined myself with it, or felt like that was what I was, but it ran my life whether I liked it or now. Now what? Who am I now? I need to get back to work. To get my greater sense of independence back. But what do I do? Go back to doing the unfulfilling thing I did for years just because? Should I have gone through all this just to go back and get another job? I don't wanna(said in whiny 2 year old speak). I still have that mindset of needing to find my direction. Retail companies are not it. It's thankless, and pointless, aside from getting really great product pretty cheap. Not to mention the schedule many times in not conducive to me happily being with my family. It's like I can't go back. Between being sick and getting royally screwed over by the last company who I bent over backwards for, I can't go back. So now what? I don't know. I'm going to take another class this spring and see how it goes. The science I've taken thus far has kicked my ass and I know how competitive the programs are. I just don't know if my life will allow me the time to be an A biology student. I don't want to set myself up for failure. So we'll see. Time away from my kids has to be worthwhile, fulfilling and productive. Being sick definitely taught me not to sit around and let days go by not living life. At the same time, I don't want to be in denial about what is possible and what I'm capable of. I'm a realist like that.
I don't know. I feel a kind of let down. A little lost. Experiences and time change you and you can't fit yourself back into the mold of your former self. I tend to think that's a good thing, but in some instances it can be frustrating. What would have once worked for me, doesn't now. It is almost a last resort to what clearly is a different expectation.
Now what? I'll let you know when I figure it out. In the meantime I'll be updating you on my recovery! I may venture out for a drive on my own today. We'll see.
Thanks for reading. XO

Well, well... Here we are. So much was leading up to this. Anticipation, fear, excitement, anxiety... it was all rather anticlimactic in the end. Truly. I am so happy I have gone through it all, but I guess to put it simply, pooping again is just really nothing to jump for joy about! ;-) I am neither overly excited or relieved. Life just is... in a small way it is like I just got back on the highway after being on a really shitty rural detour for a few years. I guess I was expecting some mental fanfare or elation. Nothing. Woke up, stoma gone. Ok. Moving on.

Discharge day!!! ------->> Time to carry on....

I am one week post OP from my ileostomy reversal. It was a piece of cake. Honestly. After the pain and recovery from the colectomy, this was a breeze. The hardest part this past week was not eating for over 4 days in the hospital and the migraines and nausea it caused. Throwing up with nothing but a popsicle in your body in 4 days hurts. Bad. And all that abdominal contracting from throwing up made my incision and former stoma site hurt more than ever. I don't know how many of you have gone multiple days without eating or drinking but it is horrible. I've done it multiple times now. I ate Tuesday afternoon and got a popsicle on Friday evening. Not even ice chips in between. Torture. Then, I didn't eat actual food of substance (mashed potatoes, chicken noodle soup- the dreaded Low Res Diet) until Sunday. Seriously having GI issues and surgery is the worst for that stuff. They starve you. You go nuts. Luckily, those IV fluids kept me alive!!
Aside from that (NBD), the hospital stay was easy. The floor was quiet, I didn't have any nurse drama and didn't have to report anyone for not giving me my pain meds! SUCCESS!!!! I have 6 staples in my FrankenBelly. They are already itching like MAD!!! The pain has been tolerable. They gave me 10mg Norco and said to take 2 every 4-6 hours but I would be drooling on myself. I'm taking 5 every few hours and it is completely enough. I do have some soreness (not pain) doing that but I'd rather be functional and a little sore. I've had worse so I'll live. Here's some of me the night of surgery. ------>

 Obviously I'm drugged and happy?? Ok... guess I was feeling ok. Happy to be a JPoucher!

By this time, I am way puffy from fluid. Obviously zonked and may be in pain by the telltale canyons between my eyes that are screaming for botox. The oxygen is a good look.


Here's the incision the day after surgery. I laughed when I saw it.

Me, tired the day after ------->>>

As of today I have had some half-caff coffee, some pepsi, iced tea, mashed potatoes and gravy about 6 times, cooked ground turkey once, cooked carrots once, some french fries once, eggs twice, pancakes twice, bread, ice cream once, and a chicken sandwich once. That's been it in a week. I'll spice it up and maybe have macaroni tonight. ;-)
It will be so good that my health issues will no longer be a burden on my family. I'm out of commission and the entire house is crazy. Dillan is not good when I'm in the hospital. Mat stresses doing it all, while trying to work at home. Even during recovery now, I can't lift more than 10lbs so that obviously rules out the munchkin. Well, Mat has commitments that he can't bring a toddler to, and we have to debate leaving her here and what are the chances I'll have to carry her. And NATURALLY her separation anxiety has kicked in full force. She wants to be carried constantly. Nice timing, kid.... Nice.

So now what? That's been my question to myself. Now what. yes, I definitely have some recovering to do still, and adjusting to my brand new digestive system, but if this is as bad as it's going to be then I'm good. So now what? Sick has kinda been my thing. I never defined myself with it, or felt like that was what I was, but it ran my life whether I liked it or now. Now what? Who am I now? I need to get back to work. To get my greater sense of independence back. But what do I do? Go back to doing the unfulfilling thing I did for years just because? Should I have gone through all this just to go back and get another job? I don't wanna(said in whiny 2 year old speak). I still have that mindset of needing to find my direction. Retail companies are not it. It's thankless, and pointless, aside from getting really great product pretty cheap. Not to mention the schedule many times in not conducive to me happily being with my family. It's like I can't go back. Between being sick and getting royally screwed over by the last company who I bent over backwards for, I can't go back. So now what? I don't know. I'm going to take another class this spring and see how it goes. The science I've taken thus far has kicked my ass and I know how competitive the programs are. I just don't know if my life will allow me the time to be an A biology student. I don't want to set myself up for failure. So we'll see. Time away from my kids has to be worthwhile, fulfilling and productive. Being sick definitely taught me not to sit around and let days go by not living life. At the same time, I don't want to be in denial about what is possible and what I'm capable of. I'm a realist like that.
I don't know. I feel a kind of let down. A little lost. Experiences and time change you and you can't fit yourself back into the mold of your former self. I tend to think that's a good thing, but in some instances it can be frustrating. What would have once worked for me, doesn't now. It is almost a last resort to what clearly is a different expectation.
Now what? I'll let you know when I figure it out. In the meantime I'll be updating you on my recovery! I may venture out for a drive on my own today. We'll see.
Thanks for reading. XO

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

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.