You may need a surgeon who is willing to do a mucosectomy or pouch advancement to help salvage your pouch. If you can, get to the Cleveland Clinic in Ohio.

 

Jan

I think if your Dr. says diet doesn't matter, you need a new Dr. Do a search at the top of the page for "sugar". Also look at the dietary guidelines under "Information" above.

Sugar and carbs may make a difference with pouchitis, but I am not so sure about diet and cuffitis. That is a different problem. Certainly, it is worth a try to reduce/eliminate carbs as much as possible, but I have not seen it as a pouch saver for cuffitis.

 

Jan

Cuffitis is a horse of a different color.  It's UC per the biopsy reports taken from my cuff and I agree with Jan. I don't think diet helps it much. My GI referred me to an IBD specialist when we couldn't get rid of my cuffitis with Canasa and Anucort.  I tried one for a while and then the other or 3-4 months before he referred me to a Mayo Clinic IBD specialist.  He told me to keep using canasa until it got better.  I also used anucort too when things were most painful.  Canasa in the p.m. and Anucort in the mornings.  It did gradually get better. Every time I went off of canasa cuffitis would return. He had me use it every other night and then 2-3 times a week to keep it in remission. I thought about pouch advancements with muscucomies too.

You need to find a surgeon who is very skilled with pouch advancement and mucosectomy before giving up on the pouch. I second Jan's recommendation to see someone at Cleveland Clinic . I would recommend Dr Remzi there.  I have had similar issues due to a stricture and ongoing inflammation in my cuff and he is the surgeon I would pick if I ever have to advance my pouch.  I have had relief with ongoing Canasa suppositories when I have alternated  these w anucort also. Best of luck.  I know this can be very frustrating and incredibly painful.

Thanks for all the responses.  I definitely feel the need to get into Mayo Clinic, or Cleveland Clinic from what some of you are referring to.  Any more specialists that people know would help.  Anyone found a lot of success with a certain specialist?  

In defense of my comment about diet, I don't think you can have inflammation anywhere and expect to keep eating the same as usual. There is a long list of foods (including refined sugar) that doctors recommend you avoid for UC. Cuffitis is UC in what's left of your colon. Whenever I begin to have problems, I eat only white rice, well cooked with extra water (mushy). That helps my system calm down and heal. This being said, I agree that you need to see a specialist at CC or Mayo if possible.

After reading your first pos againt I caught the part about seeing a surgeon in 2 weeks and wanting help before then. Hopefully the surgeon you are seeing knows more about cuffitis than your GI.  Hopefully s/he can give you more guidance and help with your cuffitis and/or can refer you to someone that is a GI that is more specialized in IBD/cuffitis.  We understand you not wanting further surgery.  It is crazy that such a small portion of our j-pouch can cause so much pain. I think part of it is because our cuff is assaulted with more acidic waste than before. I didn't have the same sort of pain when I still had UC and the cuff is in the same place now that it was then, attached to our sphincter.  I'm not saying it is worse than UC but it sure burns more than I remember doing before my surgeries.   

It is months after you posted your shout out for help with cuffitis, and I am hoping you have found relief, a new GI and have gotten some help. My daughter went through so much of the same issues. Her cuffitis was so bad that she eventually had to have j-pouch and rectum removed and K-pouch built. So much better!! She still has issues, pain...but more good days and not the agony that you are going through. We are in Farmington Hills MI, and have a good GI here. But, when she needs help we head to Cleveland. 

Mayo  Clinic  or Clev  Clinic.