
Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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I have had colitis for 25 years with flare ups occasionally. The past two years it cannot be controlled and I have been on predinisone all the time. Varying strengths. My problems have never gone away. Now i have episodes several times a week with throwing up along with the other problem. and it last for several hours. Has anybody had this happen? Last year they recommended to remove my lower colon. The Dr. doesn't seem to think i can do a J-pouch because of the damage in my rectum. i want to know what it is like to live with a bag and is it worth it? i would like to get my life back and not be stranded in my house afraid to go out.
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Second, I'd get a second opinion for sure. It took me three consultations to find the "right" surgeon and I'm really glad I did that even though it took time and frustration and getting out of my house which was the last thing I felt like doing. This is the rest of your life. It's worth it.
You definitely sound like surgery will improve your life - I was at the same place you sound like you are - couldn't get off prednisone, couldn't get out of bed, puking, awfulness.
All that being said, I have heard people say that they got very used to the bag and it was worth it and that they would take the bag over colitis anyday.
For me, it caused major complications because it didn't drain properly and caused me to go septic so I only had the bag for a month - that for me was plenty. I was told that was an incredibly rare situation.
At the same time, septic sickness aside, I still would rather have had the bag then be "living" like I was with the UC.
The pain is gone, you no longer bleed. You still have the bathroom issue (at least right after, it probably adjusts), but it's so much better than with UC.
But i would really try to find a surgeon who will talk to you about the pouch. I can't understand why he said your rectum is too damaged when they remove the rectum anyway. Ask the surgeon about a total proctocolectomy w/ ileal anal anastomosis - that's the technical term for the j pouch surgery. The procto part refers to removal of the rectum.
Good luck. It's hard to get your head around, but the point that you're at, trust me, it is SO much better than living like that. There are hurdles, but you get there eventually and you never look back.
She has her energy back! She back to being her crazy self! She can run circles around everyone - amazing the energy she has...
I thought the throwing up happens because diseased passages become narrowed? You have to pass what you're eating one way or another...Thought this difficulty was mostly in Crohns patients though... I think a second opinion would be the best thing to do.
I hope you feel better, I know how rough it can be, and try not to let yourself get too dehydrated. Also, if your not already, try going on a liquid only diet (like ensure or boosts or another meal replacement drink), it helps to rest the bowels.