Hey people who’ve elected to get their colon’s removed, I would like some input. I’m possibly facing making a decision here soon on whether or not to remove my colon. Need some brave people who’ve had experience with this, so please read and feel free to let me know the good and bad. I’m not 100% sure yet, but things are getting to the point where this may need to be done so I can live a normal life… well, normal life without a colon.
Where I’m At with My Colitis:
Blake here, I’ve written a few stories on this website so far, but I’ll give you an abbreviated story of what I’ve been going through. I’m 30 years old, father of a 2 year old boy, husband and trying to work full time job. I played baseball and soccer all 4 years of high school and college, always enjoyed weight lifting since graduating college and got descently strong and big naturally, until this nasty disease is taking everything away.
Okay, diagnosed with Ulcerative Colitis in February this year (2011). I was seeing blood in my poop, was hoping I had a hemorrhoid or something, but it was nasty old UC. I should mention I also told my doctor to test me for Celiacs cause it runs in the family and was tested positive as a Celiac. I was so happy cause I thought all I had to do was cut out gluten and this problem would fade away. My first flare lasted a couple months and was hellish. I was pooping blood all the time, had diarrhea mixed with blood all the time, but the flare went away with Prednisone and Asacol. A couple months later, started seeing blood in my stools again, red lights went off. I knew this was happening again, but I didn’t know how because I had been eating gluten free for months now, no cheating. I called the doctor, we did a colonoscopy/endoscopy June 22nd and revealed UC of course along with some other medical terms I don’t remember. He did say that my small intestine looked good and could t ell I was eating gluten free. It was very early in the flare, so at this point I was just seeing blood in my stool. In July and August the frequency and urgency picked up along with diarrhea. I decided to keep a food/poop journal after I started the SCD diet on 9/25/11 through 11/10/11-(this is the date I gave up on SCD because I hadn’t had any relief and I could make absolutely no correlation between my diet and my craps). I ate Jimmy Johns the day I gave up SCD, no bread, just their sandwich in a lettuce wrap, bbq chips and cool refreshing Coca Cola. Bad idea! I crapped so many times at work that day and it all floated at the top of the water (it may had gluten in it). Anyway, my journal shows a range of 10-25 craps per day, I would say average of that little over a month period was about 15 a day. I know I’ve had a couple days that I didn’t keep track where I had to break 30.
My wife and I weren’t satisfied with my GI, so we switched to a highly recommended doctor who only deals with IBD patients. My first visit was 5 hours long with her. She scoped my a-hole and took biopsies which hurt like a motha trucka. I could feel her ripping my colon apart and I could see it on camera which made it worse. The day before I saw her I only crapped 4 times, was the best day I had in months and seriously thought I was getting better. The day after I saw her, I crapped blood all day and night, I didn’t keep count but it was a lot. The biopsies really messed me up. After looking at my colon, she wanted to put me in the hospital to get a Remicade treatment started right away, so I did. I got my first infusion and a 24 hour stay at the hospital. I was expecting Remicade to be my miracle, but then I almost shit my pants on the drive home from the hospital and reality sunk in. What if this doesn’t work? Am I at the last resort? I can’t live like this any longer, I have to work, and I can’t miss 6 months out of a year because of my UC or else there goes the house, the cars, everything my wife and I have worked for. Okay, so maybe I’m over reacting a bit because my wife makes more than me, but we both need to work. I need to give Remicade another chance or two to see if it’s really going to work.
Then my doctor’s assistant nurse calls me today and wants me to go to the hospital today (2 days before Thanksgiving) to get my colon removed.
I said WTF, where did this come from?
I found out that my wife had been calling the doctor behind my back telling them how bad I’ve been, which I can’t blame her because all of her conversations with me the last week or so have been with me wrenched in pain on the toilet. I think I have been pooping out tiny bits of colon. Things are not getting better and haven’t been for about 5 and a half months now. I tell the nurse hold up, we need to give Remicade another chance atleast. My doctor told me that it sometimes takes 2, 3 infusions for it to work. Why all the sudden is she wanting to take my colon from me. The nurse tells me that the doctor now has realized that the Remicade probably won’t work for me because I have not had any positive results since the first infusion and she doesn’t want my colo n to get any worse so we should take it out now. I told her I’m not gonna rush into a decision like this without some time, without another infusion and without consutling my family about it and without enjoying some food at Thanksgiving.
So that’s where I’m at today. I’ve been trying to wrap my head around life without a colon for some time now because I figured it would get to this point. Maybe I’m jumping the gun and the Remicade will start working soon, but maybe it won’t. I need to start thinking about my options.
That’s where I need some people
who’ve had their colons removed
to chime in cause I got a million questions.
I’ve been doing a lot of research on the web today about J pouch procedure because that’s probably the one I would want to do, although I’m weary about this. It seems that a lot of people find themselves going to the bathroom a million times a day still and that their asses leak when they sleep. I’m trying to avoid that, so why would I want that option. The other option is living with a colostomy bag the rest of my life. Doesn’t sound so bad, but it doesn’t sound very good either. I’m just gonna start writing questions so here goes:
1) If you’ve had a J Pouch, I’ve heard the first year or two can be almost as bad as when you had UC. Is that true? I hear the pouch needs time to stretch out and get used to it’s new function. Is it easier to hold your craps in, because I can’t with UC and I have many ruined undies to prove it.
2) Is there anyone that wishes they did not get a J Pouch and would’ve just got the colostomy bag? If so, why?
3) How much recovery time do you need to get back to work? I work in an office environment, no heavy lifting at work or anything, would I be able to go back after a couple weeks?
4) I like to lift weights and would be devastated if I could not work out again. I know I would need to recover before hitting the gym again, but is it possible to get back to where you once were before the whole UC mess? Can you lift weights with a colostomy bag or do you have to worry about your stoma popping loose or anything?
5) I think it would be pretty cool to never have to sit on a toilet for the rest of my life (meaning just getting the colostomy bag), but is that a dumb decision just because I’m scared of the J Pouch not working for me? Also, does losing the function to defecate and fart have any kind of psychological effects on a person? It’s weird to think I may never use my sphincter again.
6) When a person with a colostomy bag passes gas, does the bag inflate like a whoopie cushion and is there some type of valve or something to get that gas out or do you have to change that bag?
7) How irritating is wearing a bag day in and day out? I’m thinking you must get used to it. I mainly sleep on my stomach, is that possible with a bag?
8) I’ve heard that getting your colon removed is the only sure way to beat ulcerative colitis, but my doctor’s assistant said that wasn’t true. She said I would probably need to still take Remicade even if I had my colon removed. I said, “but if Remicade doesn’t even work for me and it’s the reason I’m getting this mother taken out, why the hell would I need to continue taking that expensive ass drug.” Her answer was something to the fact that it would have a lot better chance of working once the colon is removed. Sounds like BS to me. Any thoughts?
I’m sorry that these questions sound pretty silly, but these are the things I’m wondering at this point. I may not get responses to all or any of these, but thanks for reading. I’m really hoping that things take a turn for the better here soon, but I need to come to terms with the fact that they probably won’t and get ready for worst case scenario. Thanks all!
Prednisone-Been on Prednisone probably 6 months of 2011. Mostly 40mg’s, have done 60mgs also
Asacol-helped get me out of my first flare
Asacol HD-has done nothing for me since I started taking it a couple weeks ago
Sulfasizine-found out I’m allergic and it’s crap
Remicade-have had one infusion, next one is scheduled Monday 11/28/11. First infusion didn’t do anything
Hydrocortisone enemas-think these actually help
AMP Floracel-it’s a natural pill made with the healing properties of aloe, felt like it made the blood go away for a while, but hasn’t done much else.
Florastor-Probiotic pills 3X a day
Lomotil and Immodium-they work about the same, slow down digestion, but still unpredictable
SCD Diet-did this about 40 days in a full flare, didn’t seem to help-still eat relatively SCD, but added white rice, potatoes and some other stuff (cheetoes and Funions cause I had enough) including Coke every once in a while.
Long list, but wanted to include everything (I’m probably forgetting some stuff) that I have take. I’m currently on 50mg’s of Prednisone, Asacol HD and Florastor (probiotic).
– Thanks so much everyone, Blake
My name is Blake, I’m 32 years old. I have a 4 year old son and a beautiful wife. I used to suffer from UC until I had surgery. I’m celebrating 1 year and 1 day with a J Pouch today (8/23/13).