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Hi everyone.  I was diagnosed with ulcerative colitis at age 16, and had the j-pouch surgery in 2007.  Since then I have had lots of issues with the remaining cuff/rectal portion.  It feels like there are razor blades in my rectal area.  The pain is so severe, and I have a lot of inflammation and bleeding as well.  I've been in and out of ER's for the past several years.  My GI has tried Canasa suppositories once a day.  I even tried Humera injections for the past 6 months.  I have good stretches where it goes away for a month or so, and then it seems to come back.  My GI doc tells me I need to get a bag, and feels its time to give up on the pouch.  

  I am not ready to give up on the pouch, but rather wish that I could find someone who has better knowledge of cuffitis.  Also, I have never tried a diet, and would love it if someone could give me tips on what I could/should cut out.  Sugar is my weakness, and I read some of you saying that this is bad for the pouch/cuff.  My GI doctor claims that dieting doesn't help and doesn't support it.  I live in Grand Rapid, MI and need a recommendation of a specialist or doctor that is willing to work with me.  

  Please help!!!  Time is running out.  In two weeks I am supposed to meet with a surgeon to discuss giving up on the pouch and resorting to a bag.  Being only 29 years old, I don't feel ready for that without exhausting every option.  

  Any type of tips or advice would help.  THANKS!!!!

Last edited by jd9998
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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.

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. 

Currently going through a bad razor blades cuffitis here. Making my life a misery.

How long have folks had to have been on the Canasa/Pentasa to actually see a result?

I feel it isnt making a lot of difference after 2 weeks, it always used to, but now I feel like I am in dire straights. Its the sort of pain that makes you think that you are going to perforate or something, its scary.

@rcrossco_1 make sure it really is cuffitis and not an anal fissure. I misinterpreted my anal fissure for several weeks to be inflammation.

If you do an enema with water only and the sharp pain vanishes, then it's likely to be a fissure where some particle got stuck and flushed away by the water. Using a bidet / shower after a BM can also help with that.

If it is cuffitis, you could also do a budesonide enema or apply cortisone foam.

Last month I had razor blade pain that I think was from anal fissure & hemorrhoids. I don’t know, maybe cuffitis?  It’s been an ongoing problem for years.  When it’s bad I do hot sitz baths & then I started using Calmoseptine ointment after every bowel movement and it has worked wonders!  I also have a bidet.  I tried many other things & I can’t believe how much the Calmoseptine helped. Bought it off Amazon.

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