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I am pretty new to this group although I have been reading posts for several months trying to help myself get through this difficult recovery after my J-pouch surgery. Had the first stage done last August and take down in November. Neither one was a piece of cake, and now here I am almost at the one year mark and I am feeling worse than I did before I had this surgery! I had UC and my colon had to go but by now I had every expectation of gaining some weight and not being in pain, or RUNNING to the bathroom. I had my pouch scoped in April and my surgeon said there was no pouchitis. He did put me on Xifaxan for two weeks however, which did nothing. Still lots of diarrhea with urgency. The weirdest thing is that after eating some things I literally can watch my stomach bloat out in a very specific area, near my ostomy scar and several inches below and it is as if a ping pong ball is inside of me and it bulges out then in, moves toward the center a bit then outward. Of course it hurts the entire time, if I put my hand on it, it is a hard lump! I am thinking it is gas that has formed as I am digesting, but it is very soon after eating and it is severe and painful! I had SIBO years ago, before my UC diagnosis and I had similar symptoms. Can you still have SIBO with a J-pouch? I am thinking yes. Also, even when I don't have that type of severe digestive reactive I sometimes have hours of rectal cramping and pain there. I often run to the bathroom and don't have to go. Sometimes I do. They are incredibly painful often to the point I can hardly sit even on a couch. Have I understood this correctly that those of us that had UC can still have it but it is called cuffitis because of the small cuff of our colon that was left during the surgery? I am wondering if this is what I am experiencing and what is normally done for it? I am currently on Flagyl, which after 12 days has slowed my diarrhea some and also changed my movements from pure liquid to soft. Sorry for the graphic description but that is kind of the nature of this surgery unfortunately! Up until now I have only been followed by my surgeon but have an appt scheduled with the GI doc that he recommended in about 10 days. Hoping maybe I will finally get my recovering on track. Didn't think I would be almost housebound 11 months post surgery. Thanks for any info anyone can offer.   

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You can indeed still have SIBO, as the nature of SIBO is "small intestinal bacterial overgrowth," and you do still have the small bowel. Might be worth an elimination diet, then a reintroduction of offenders a month later. I found out some triggers by going through that.

Cuffitis is UC of the retained cuff.  My understanding is there are similar symptoms to UC, it happens in *more* who don't have a mucusectomy, or in those with larger retained cuffs (maybe more than a couple to a few centimeters).  Hallmark sign is bleeding, though.  Treatment is often local, such as with Canasa suppositories, or steroid enemas.

sorry to hear about your complications. I have chronic cuffitis and been through all of those symptoms your experencing. hope fully in do tIme things will settle down. Take physilium to bind the stool. I have chronic bleeding so that have to remove my cuff  still have UC in September the procedure is called a pouch advancement. This should be a last resort because it can be a very sensative and difficult surgery. My surgeon is from CC in Weston FL and I'm comfortable with him performing this procedure. stay positive and continue to try treatments. Good luck 

Joanm - I, too, have chronic cuffitis; diagnosed early in 2015. The only silver lining to it is that I can teach my two daughters the correct use of the word "literally" when I tell them that it is literally "a pain in the ass." I have been taking a relatively high dose of prednisone for several weeks; it helps a little but man those side effects (for me, it's my eyesight). I also have had three doses of Remicade - it's too early to tell if it's working. If I may add my two cents: As you proceed trying to get a handle on this situation, remember to pay attention to anal hygiene and anal care - cleaning, creams, ointments, whatever. You don't want to do what I did, which was develop some serious butt burn. Hang in there.

Thanks everyone for your helpful responses. Right now I don't even have a diagnosis as that was my real frustration with my recovery from my j-pouch surgery. At first everything I told my surgeon at my follow up appts he said were just normal for recovery and I had to be patient. After a while I just stopped progressing, still had 10 or sometimes more bowel movements a day, urgency, then I seemed to actually be regressing with more abdominal and rectal pain. But after my pouchoscopy in late April when he said no signs of pouchitis, I guess I was left wondering well, why am I sitting here 6 months post take down feeling so bad when I know that so many people are eating a wide variety of foods, have reduced their number of bowel movements and have found a new normal of lifestyle? And now here I am looking at the calendar and it was almost one year ago that I met my surgeon, and my first surgery was August 19, 2014. It is very disappointing as I did not think I would be in this shape approaching that one year mark. And I really don't know why I am not functioning better. I will be seeing the GI doc that my surgeon's office is referring me to on 7/20 and I can only hope he has a plan to figure this out and get me the right treatment to give me some kind of life back!! Sorry for the venting. Again thanks for all the sharing as it has helped me to feel like I am not alone. 

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