Calmo
Visbiome

Skip to main content

L
Hi all, Am feeling devastated, as I have been battling Cuffitis since September. My take down was in March, and I've struggled through the adjustment period with pretty typical issues, but was scoped in September due to high frequency (15-20 BMs daily, many at night) and bleeding. My GI said it was only Cuffitis, and the pouch and above were all good. Since September I've tried many things to help the inflammation- Canasa suppossitories, HydraCortisone Foam which I'm still using 2 times daily, 10 mg Prednisone, then Entocort, then 30 mg Prednisone, and now 40 mg. Prednisone! Maybe slightly better but not much. Today they said I have Anusitis, as entire anus is also quite inflamed. What's next? Not liking options. Have another appt with my surgeon and GI in few weeks and
I know the are going to talk about a temporary or permanent diverting ostomy, though I'd also like to think about other options- Biologics maybe. Was on Remicade for 4 years until it stopped working, Humira 2 months with no results. Isn't it too early to give up on my pouch?! I do not want an ostomy but not sure what other options there are. Please tell me if you think there are options or if you think Prednisone may just need more time to kick in. Any suggestions/ insight would be sincerely welcomed! We talked about BCIR or Koch pouch but they did not think a good option. As I know all of you who are also struggling wish you had better outcomes, I too just wanted to be one of those with a successful outcome after all this! Thanks for your support! Laurie

Replies sorted oldest to newest

D DaleerMember
Is it possible that they left too long of a cuff when they did your operation? Before my operation I told my surgeon I wanted the absolute minimum size of cuff left that would be susceptible to cuffitis and I haven't had problems. If that is the issue and they are going to do surgery perhaps they can get rid of more cuff. I'm really not sure but I'm sorry for what you're going through - I know it's not easy.
D
Jan DollarJan DollarModerator, RN, retired
I used to deal with chronic/recurring cuffitis. Then I developed enterpathic arthritis (probably had it all along post op, but it took a decade before it got bad enough to send me to a rheumatologist). Anyway, I was started right away on biologic. Enbrel first (didn't work too well), then Humira (was pretty good, but I needed weekly injections). I am now on Simponi (monthly injections) and it works fairly decent on my arthritis. But, I now only have the rare cuffitis flares, and my GI said my pouch never looked better.

I take oral sulfazine, but no Imuran or methotrexate.

Simponi is approved for UC, so maybe worth looking into.
http://www.simponi.com/ulcerative-colitis/

I think that if prednisone is not working in a week or so, it is not a solution, and definitely not a long term solution.

Jan Smiler
Jan Dollar
J JJAMember
I used to have chronic cuffitis, and once I got my bidet, it really helped. The soothing water, being able to keep that cuff area very clear of stool, made a huge difference for me. I developed chronic pouchitis later, but I had about 2 great years in there post-bidet with smooth sailing from the cuffitis.

You can buy one for under $200 online. I use the $179 biobidet i3000, but there are many different ones on the market. I like the range of water pressure and that it hooked directly up to the warm water supply for the nearby sink and didn't require an outlet. (and that my not that handy hubby could even figure out how to hook it up!)
J
L LjzMember
Thank you Daleer, Jan and JJA for your response and ideas! I will check on length of cuff but I think it is not big- 1-2 cm. I will have to bring up the bidet to my hubby, if there's a chance that could help and will go back to 3-4 hot baths a day in the interim. Will also talk with them about Sulfasalazine- I did ask my nurse about it yesterday as I was on it for RA before my surgery and it did help the RA inflammation. Would be great if it could be that simple! Keep the ideas coming, as I will try most anything before I give up! I do really notice some improvement in hours following use of Hydrocortisone foam, but can only use that 2 times day. Typically my afternoons have been the most difficult with small amounts of stool leakage- whereas I'm continent all morning and for 3-4 hours at night.thanks again! Laurie
L

Add Reply

Views: 211
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×