Advice needed :(

My fiance was diagnosed with UC when he was 16. I met him when he was 22 and at the time (other than the millions of pills he took) his life seemed pretty normal. He didn't have a ton of flare ups, and if he did get one it was easily controlled. Last February (2013) he had a horrible flare up that they couldn't get under control. He decided that he didn't want to use Humira/Remicade with the side affects and low success rate, so instead he decided to have j-pouch surgery. Before his first surgery (July 2013) he had lost 40 lbs in about 5-6 months. With the temp ostomy, life got so much better - he was able to have a life again that didn't revolve around laying on the couch and in the bathroom. He had his take down surgery (October 2013) and everything seemed to go well. We started planning our wedding and bought a house. However, about a month or two ago life has gotten rough again and we now are thinking about postponing the wedding. He is in horrible pain and nobody can seem to help us. The surgeon has been trying different medications to get the gas under control but none of it seems to be helping. He continues to lose weight (down to about 110lbs and is 5.8). I worry about him constantly and you can tell he is extremely depressed. I am at a complete loss - I am here for him 100% but like he says "I can't understand the pain" Between worrying and lack of sleep I am completely at a loss Frowner Any advice would be greatly appreciated!!
Original Post
You are to be commended for being there for your fiancé with all he has been through and he is very fortunate to have you. I have been through a lot medically during the past 4 years, and my wife’s support meant everything to me. It is my understanding that the Cleveland Clinic has some very highly rated doctors that deal with problem J pouches. A consultation there might be very beneficial. A low carb diet could reduce his gas problems and there are numerous posts on this board addressing that issue. As regards weight loss, I found diet supplements like Boost and Ensure helpful in stabilizing my weight after surgery and until my appetite returned. Issues involving depression should be brought to the attention of his doctor. I hope everything works out well for the two of you!
Boy, this sure sounds like a familiar story. Those symptoms really do sound like SIBO (small intestine bacterial overgrowth). There could be any number of reasons for it, but it would seem that he needs someone with expert skill in diagnosing j-pouch complications. That would be Dr. Bo Shen at the Cleveland Clinic Pouchitis Clinic. The fine docs at CC also do remote second opinions, where you send them your records for review. That might be a good place to start, if travel to Ohio is out of the question right now.

You may want to do a search here or on Google for SIBO and see if that sounds like his trouble.

I echo Bill's kudos to you for being such a great support to your guy! Also, don't feel that you need to post only in this forum, as you can participate in all the other forums if you wish.

Jan Smiler
Thanks so much for the quick response!! His surgeon actually did his fellowship at Cleveland Clinic - so he is certainly knowledgeable, which is helpful!! He has an appointment with his GI tomorrow, I am curious if it is possibly pouchitis or chron's. I know he is also going to talk to his surgeon tomorrow about getting a temp ostomy back. He has an anal fissure that doesn't seem to want to go away even with medication cream to put on it. I just want my happy fiance back.
Gee, anal fissure adds a whole other dimension to this! That one little thing can completely rule your life and make it so you cannot eat, sleep or even concentrate on work.

When those creams fail, the next option is sphincterotomy, either surgical or chemical. I vote for the chemical, which is Botox injections. The effect is temporary, wearing off in about 3 months. It can cause incontinence while in effect (same as surgical sphincterotomy).

So, yes, there are things to discuss. A diverting ileostomy could aid his tolerance of the sphincterotomy side effects and/or whatever is going on now.

Jan Smiler

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