Cuffitis

This doesn’t sound to me like cuffitis, but it does sound miserable. I’d suggest trying to protect your bottom: zinc oxide after each BM, and rinse instead of wiping, if you can arrange it. It’s hard to know what set it off - maybe the antibiotics changed your stool consistency?

I hope it clears up soon.

Thanks Scott, I think it may have been too much sugar....my weakness! It will be a long time before I do that again. 

Still curious, what are the symptoms of cuffitis?

Cuffitis can mimic pouchitis. Increased frequency is common, and bleeding is much more common in cuffitis than pouchitis.

Thanks Scott!

I’ve had a sore bottom, sometimes bleeding and a high frequency (9-12) since take down and I’m almost 10 months out. At 3 months out, I went back to my CC surgeon who performed a pouchoscopy and ordered a manometry test. Results were some inflammation in the anal transition zone (cuff) which I was told is common and to just watch it. The manometry result put me in pelvic floor therapy for a few sessions. The exercises I can and still do, but the digital “massage” and stretching I couldn’t continue due to the extreme pain. Fast forward to this week. Found a new gastroenterologist at the UVA Digestive Health Center. After reviewing my records and a visual exam, he said I have cuffitis and prescribed Canasa and VSL3-DS. When the pain subsides, he wants me back in therapy for at least 3 sessions of biofeedback. I’ve started the prescriptions and have my fingers crossed. I need progress! 

Hope the Canasa & the VSL3-DS helps. I wish I could use a bit of Canasa but Unfortunately, with my prescription coverage, it would cost me over $400 for a month and I'm not willing to spend that. Hope yours is more reasonable than mine is. I am feeling much better now, except the tuss is still a bit sore but nothing like it was before.  I have been using lots of Calmoseptine. 

Hang in there!

With insurance, 30 tabs of Canasa was going to cost me over $200. I went to the Canasa website, called them about the savings card program, applied and qualified. When I got to CVS, I gave them my card numbers and they re-ran my prescription bypassing my insurance. The new cost? $30! This offer is good for 6 refills. Try it!

Thanks so much, unfortunately, I just went on the site and it does not cover Medicare patients....I swear, the older you get they less they cover. Do ya' think it should be the other way around....grrrrr!!??

Great, I’m 63 and have that to look forward to. 

You can try Cortifoam for cuffitis. Cheaper than Canasa but unfortunately it was on backorder last time I tried to get it refilled. 

Mesalamine enemas are the same medication as Canasa, and might be much less expensive. For now, at least, the suppository is brand-name-only.

Jfill21, I suggest that you should stock up on Canasa if that's what you want to use before you reach 65!!!

jeane posted:

You can try Cortifoam for cuffitis. Cheaper than Canasa but unfortunately it was on backorder last time I tried to get it refilled. 

My GI said the foam is good, but can “miss” the cuff and end up in the pouch whereas the suppository is placed right where you need it. Wish the Canasa was as easy to administer as the foam though. 

Every time I had bleeding it was cuffitis. I'm not talking about blood that could be from a sore/cracked bottom.

This was not a prescription j-pouchers use but My friend got a $400 Walgreens priced prescription her insurance would not cover, for $40 from COSTCO's mail order pharmacy. It is a name brand with no generic option. The way generic otc imodium is going up in price I'm considering checking out their price for loperimide. My insurance stopped covering it last year.

I doubt very much if Canasa would be so inexpensive from Costco. I'm wondering about the Lomotil though, I paid over $100 for a three months supply. Might go to Costco to check it out. 

I agree about canasa but you never know.  She is taking an imunosuppressant that patients take after receiving transplants.  So it is a drug for a relatively small amount of people. Canasa is high as well. There aren't many of us that use it.

Hi, 

I am wondering if I have  Cuffitis . I have no bleeding at all just a sore butt like almost raw! I too was prescribed Canasa and the foam stuff (forget what its called) but could not use my butt is so raw. Then I was prescribed Tinidazole 250 mg was on 500 hundred but did not agree with me and this also does not agree with me. Now what feeling awful it just came on like going to the bathroom multiple times and the pain its intense! My nurse is not giving me anything else because of having C-diff a while ago! Has anyone ever experienced all these things not working for you and what were you prescribed with?

Thanks 

LJK

My butt is very often raw and irritated. I know the feeling that you're talking about and it is intense. If I leak and if I don't clean myself immediately my butt burns. It's hard just putting my bottom in water it's so sore. Try taking a sitz bath if you can bear the pain, it will releive it. I have also found that keeping something on, like a Calmoseptine or Desitin at ALL times makes it a bit better and is less likely to get sore. Hope this helps. 

Judy