Calmo
Visbiome

Skip to main content

CJB
Hi, I seem to be getting reoccurring cuffitis lately. I was good for the past 3 months. I initially took mesalamine suppositories, but needed to top that off with proctofoam when the suppositories ran out and for the last symptoms to disappear, which were the spasms. Now cuffitis is back again, and my surgeon is currently on 3 weeks vacation. I wouldn't self-medicate if I wasn't sure of what I was experiencing, and so my question is: I started a week of the proctofoam and I am not seeing much relief in the pain department yet. My anal canal causes me a lot of pain when I have cuffitis. Can I put the mesalamine in the mix here too? Can I use a Salofalk suppository in the mornings and the proctofoam in the evenings? I know there are a few out there who have a lot of experience with cuffitis (TE Marie, and Jeane I believe).
I know this way might not give me an answer about what is really working, but I am stuck here just needing relief. And have both meds in my house...mocking me, I believe Wink

Thanks for taking some time for me.

Any suggestions from fellow cuffitis suffered, or kind souls?

C-jay

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
Yes, you can use both mesalamine and steroid topicals at the same time (one morning, one at night). I always have my mesalamine suppositories on hand to use at the first sign of a cuffitis flare. I don't bother to call my GI. I just report it when I see him for my check-ups. I pretty much self treat unless the standard treatment is not working.

Jan Smiler
Jan Dollar
CJBCJBMember
Thanks. I've never had such a painful episode of cuffitis before. All the rest of the symptoms are the same though. Guess I need to give the suppositories a few days now. It's good (in a sad way)to know that others suffer like me, and good to read other similar stories to know that I am not alone.


C-jay
CJB
CJBCJBMember
Mema,
For me cuffitis feels like a horrible bruise in my anal cancel. I tend to not want to sit directly on my bum. It hurts when the stool is passing, and I also tend to get spasms when I get cuffitis which increases the whole uncomfortableness of it all. I have never yet seen blood. I do feel lousy, tend to eat a whole lot less and am very tired.

I also have a RV fistula and it is way more active when I have the cuffitis. I'm really feeling horrible these days.

Glad you're feeling better though. Hope it's my turn next! Did you take medication, or just started feeling better on your own?

C-jay
CJB
Mema 1Mema 1Member
CJB...I did start taking my medication, but still wondering if cuffitis is really what I had been feeling all week. For me, every time I had anything to eat I got a really bad cramping feeling and horrible spasms as well. I had a loss of appetite too and an overall feeling of just blah. By the other night, I just curled into a ball with a heating pad and slept most of the day. Just wondering if it wasn't a touch of pouchitis as well and if the suppositories helped with that.

Hoping that you will feel better very soon.

JHendrix, I think that TEMarie figured out that each suppository cost $22 - hopefully someone else can answer your question.
Mema 1
CJBCJBMember
JHendrix,
My surgeon originally prescribed one suppository per night for 30 days. But I was feeling way better after 2 weeks, so started a slow taper.

This episode though, I am taking one in the morning and one in the evening. I am having a lot of pain and it is definitely more sore on one side than the other. I'm still hoping it's just cuffitis but starting to worry it is an abscess. I have no fever though.

Mema, I feel your misery. Blah, indeed!

C-jay
CJB
Jan DollarJan DollarModerator, RN, retired
Typical dosing is once daily at night. The current suppositories are 1000mg. They used to be 500mg, but they stopped making the. Studies showed that 1000mg daily was as effective as 500mg twice a day.

I initially took them a month at a time per flare, then taper off to once a week or so. But, now that I take oral sulfazine and Simponi injections, my flares are infrequent and mild. Now, I just need to use them for a week or less.

Symptoms of cuffitis are the same as pouchitis (increased frequency, urgency, loose stools, malaise, sensation of incomplete emptying, etc.) except bleeding is more common (bleeding seldom occurs with pouchitis).

Jan Smiler
Jan Dollar

Add Reply

Views: 194
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.
×