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Hello, The information on this site has been invaluable to me so far. Thank you all for sharing. I haven't done the j pouch yet, but assume it is coming. A few questions and comments:
1. Do you still have to take meds after the j pouch similar to what you took pre pouch? A number of people are talking about Humira and prednisone, and other collitis drugs after they had their j pouch.

2. Many people seem to be talking about the same "additional" ailments (in addition to the urgency, diarhea, etc of UC) even after the j pouch -- the joint pain, fatique, vitamin deficiencies, leakages, butt burn. Am I getting an accurate picture?

3. Just an observation: I started with endometriosis at 13 and had it until I had a complete hysterectomy at 40. Then I got the fibromyalgia, and after 15 or so years, was thinking I got it under control, and now I get the UC. I am starting to think I am doomed to a life of some sort of autoimmune disease causing me extreme pain and misery. So what is next, assuming I ever get the UC under control?
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As was mentioned already this is a board that primarily caters to people with problem pouches. The stories about people taking humira and prednisone are about people who are in a very distinctive minority. I have had pouchitis for 18 years, but I have never taken humira or prednisone. Humira and other biologics are generally thought to be a "last line of defense" against pouchitis. So even within the pool of people with problem pouches, those treating with humira and prednisone are in a minority. It should be noted that Entocort is the preferred treatment over Prednisone and is a milder version of the same drug which is actually designed more specifically for gastrointestinal use than is Prednisone, which is a garden variety immunosuppressant steroid drug that has many applications and generally worse side effects than Entocort.

I am taking some meds for the pouch and controlling the pouchitis. However life is much better than when I had UC. The UC I had could not be controlled with the meds, whereas my pouchitis can be controlled with meds. The main thing I have back is my continence and I am pain free. I can go to the bathroom when I want and do not have to run to get there.

You are correct: surgery removes ulcerative colitis. It does not remove the underlying autoimmune disorder that caused the UC, and may cause other problems in the future (including pouchitis, which is a different disease and different manifestation of IBD). How it will manifest in your body in the future is unknown. From what you have posted your immediate concern has to be your colon and its current status, and whether it will stay in one piece until the time when you make up your mind about surgery. That is what your concern should be. When was your last scope?

Worry about the present and treat actual problems before potential ones. The autoimmune disorder cannot be taken out of your body and there is no way to know how it will manifest in the future, so do not worry about that which you cannot control. It's also possible that you have surgery and you end up with an excellent result and do not see any other manifestation of autoimmune disorder. But if you get sicker because the meds cannot control your UC, your chances for a good surgical result will go down and the surgery will also be much tougher on your body.
Last edited by CTBarrister
It's great that you are looking around at this site and observing others recoveries. Yes, some people do continue to have manifestations of UC post surgery; either in the cuff, or arthritis, etc. Some get chronic pouchitis, and thousands of others are like me; I take no medication for my pouch or anything else. I'm 12 years from surgery and I live a very active life and no in my close circle of friends would consider me different than them. Like you I had read this board and became knowledgeable on the 'what ifs' before making the decision. My belief has always been, if the jpouch didn't work out, I would go back to an ostomy. I just really wanted to be healthy and so far I have been.

Sue Big Grin
Again, I say thank you to everyone for your insight and information. I realize I cannot predict the future and should deal with what is on the table now. I am just so depressed and afraid right now. I will see the GI doc again in January, after which he plans to do a scope. My impression is that he wants to give the remicade some more time. Next infusion (#6 or 7) is next week and hopefully will see some progress. If no improvement, I will push to have an appointment sooner. In early December I am seeing a colorectal surgeon at a different hospital about the hemmorroids (I think it is hemmorhoids) which may be a major contributing factor to the pain and misery I am experiencing now.

Again, thank you, thank you, thank you.

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