Hey everyone!

Well, after about 2 months using the Canasa suppositories, I can say the cuffitis is truly gone. Wheee! My query is this:

I wanted to switch over to something oral for maintenance, rather than having to do the suppository every night. I called my GI, and these were the options he presented:

1. He would let me take the Azulfidine if I wanted, but he was concerned that, because it breaks down in the colon, it would pass through undigested in me and not provide any benefit.
2. He would let me take Pentasa if I wanted (4 capsules, bid), because it breaks down in the small bowel and might provide benefit.
3. I could taper down use of the Canasa suppositories to 1 or 2 times a week.

Now, I remember some people here (Jan, specifically) have switched to a sulfa drug orally to control cuffitis, so why would my GI stipulate that it might not provide any benefit, given that it "breaks down in the colon," (which of course I don't have)?

Also, option 3 sounds the best, of course, but I'm afraid that might not provide enough maintenance, and the cuffitis would return. I don't have any problems using the suppositories, really, just wanted something with a little less "nuisance factor." (Thanks, Jan, for that fun term!)

Anyway, wanted to see what y'all thought; whether anyone had any good advice. Hope you're all well, and thanks for your help!

I also recall that Jan does number one. Hahaha hahaha haha - at least she doesn't doo number two. Is there a reason you'd prefer doing number three over number one?

Anyway, I'm so glad the cuffitis is gone.

kathy

Hey Ken Congrads! I was on casa suppos. for 7 or so months and it did work great in keeping it at bay and under control (1000 mg a day or 2 x a day) when I came off them it always went back to the spasms and that urge where it felt like i couldnt stop pushing ... Thus I went to my end illeo and cuff removed (plus I had dyspl. cells in at and so on ) I am really looking forward to keeping up on this post and seeing what other meds you try and how it works! Glad your doing better and please keep this post updated!

I think your doc is just trying to forewarn you of the possibility that it may not work because of the delayed release.

However, Azulfidine begins to break down in the terminal ileum (at least for us). Azulfidine releases its mesalamine by bacterial action on the bond between the sulfa and mesalamine. So, it would be released in the pouch, unless you do not have any bacteria in your pouch. So, you see, you do not need a colon, just bacteria. But, if you are having a high frequency, even with bacteria, there may not be time for the bacteria to break down the bonds.

There is your pharmacy lesson for the day.

http://www.rxlist.com/cgi/generic/sulfasal_cp.htm

Oh, and once I asked about using Azulfidine and my GI said OK, I overlapped the treatment about a week or two with the suppositories before stopping the suppositories. Now a box of suppositories lasts me about two years. I only use them for a day or two when I develop a little rectal bleeding.

Jan

My daughter has been using pentasa for years to contro cuffitis. She did the suppositories and overlapped with the pentasa and then stopped the suppositories. I think she only needed the suppositories once in three years. So for her the pentasa is doing what you are looking for.

Thanks to all for your replies, and thanks to Jan for the pharmacy lesson. I never woulda known! I think I should be fine giving the bacteria enough time, because my frequency is very low, comparably. (Usually 4 times per day)

I think I'll try the Azulfidine, merely because it seems to be far fewer capsules to take (2 per day rather than 8 for the Pentasa). If I find it's not working as well, I'll switch over to the Pentasa.

Stell -- hope I'm as lucky as your daughter!

I'll keep you posted on this development, and (hopefully) post a new message soon that reads:

Kennymac 2: Cuffitis 0

Hey Kenny,

Hope this works out for you. Please keep us updated, I’m also interested in how Cuffitis can be controlled or “maintained”. I’m on the same boat Jason took, but my charter hasn’t docked at end-ileo Island yet. My J-Pouch is disconnected and I have a temp loop-ileo. I had multitude of issues including Cuffitis. All the others have been taken care of, but when my surgeon attempted to reconnect me this past June my Cuff was still a little inflamed. I’ve been using Cortifoam and it seems like it works very well. But it’s not something I’d want to do long-term if I decide to get re-connected.

Look forward to your 2nd quarter score.

Hey guys, I'm about 6 weeks post surgery. I had the one step. Anyway, I've been having a lot of gas, liquid stools, and bleeding (basically the same UC symptoms I had before) so I went to see my GI today. He did the little scope thing and my cuff is inflamed.

He didn't give me any medicine and said that I should wait and see if it heals on it's own. I highly doubt it will, and its really being a pain in the ass(excuse the pun).

Should I wait and see? Go to another GI? Start taking some of my old UC meds? I still have some Colazol and Mesalamine Rectal Suspensions. Unfortunately I don't appear to have any Canasa suppositories.

Thanks in advance.

Rather than just doing your own thing, I'd call your GI back and tell him that you are just too uncomfortable to wait and see and suggest that you might try your old meds or perhaps could he prescribe the Canasa.

I let mine go for 4 years before treating. It did not go away, but I guess if I could wait 4 years, I guess it was not that bad, but mostly, I didn't know how good I could feel until I had a full blown episode of pouchitis and got complete relief after only one dose of Flagyl. When the symptoms returned after completing the Flagyl, we presumed it was due to the chronic cuffitis.

I think it is important to communicate how miserable you are. They assume you are doing OK when you don't call back. This early in the game it is a tough call because the gas and frequency could easily improve given enough time. But if your bleeding is consistent, then I think you need to call back.

Jan

Reading the above makes me a bit relieved...I must be experiencing cuffitis. I feel crampy in the small of my back, I feel bloated and there's blood - a lot of it. Aaaaargh! And, to make matters worse, I've just had two days off work, hanging out with an old school friend who's come to visit. I've not even been stressed out in other words!
The only thing I've done that has been out of the ordinary is exercise a lot more since we've had great weather and have gone for long, long walks. I haven't drunk a lot of alcohol or had wild nights out or anything. Can increased exercise strain the pouch?! She's leaving in half an hour and I have to go to work (it's 6 am Norway time right now) and tonight I have to go to dinner with co-workers as one of our team is leaving. We're eating Thai so I'm hoping a bit of garlic and ginger will combat any bacteria (if it's bacteria that are the problem) and that the rice will help calm things. This really is a bummer. The sight of blood really makes me freak. But I hope I'll get this under control with Asacol supps...I've had bleeding before and it did go away, so I really hope it does now.

Kennymac, I take Pentasa and take 4 in the morning and 4 in the evening. So if you only need to take 4 a day, you can take all 4 at once. Mine, at least, are not spaced out. I was diagnosed with Crohn's of the pouch (after surgery for UC). Pentasa and Flora Q (probiotic) seems to keep things under control for me (knock wood, fingers crossed, and all that). No bad side effects that I can tell anyway. Well wishes to you.

Alex, I agree with Jan, call the doc back!

Soph, I'm sorry to hear about what's going on, but I've noticed that my symptoms tend to arise after the stress is over and I'm relaxed. It almost seems as though the defenses are down, and the little devils in my pouch say, no defenses? Let's attack? How's that for scientific theory? I hope your plan works for you and that it gets under control soon.
Mav+

Exercise can cause the pouch to bleed, but it should be very self limiting.

I doubt that there is enough ginger and garlic in the food to make much of a difference if you have bacterial overgrowth or pouchitis.

The primary treatment for cuffitis is hydrocortisone or mesalamine suppositories, not antibiotics.

You know Mav+, I am very much like you. I never would get a UC flare unless I had time to be sick. I never missed a day of high school (perfect attendance is rare even for healthy kids). I would get sick during summer vacation.

Jan

Kenny,

I take Azulphidine for my cuffitis. Two tablets in the morning and two in the evening. So far so good for me...and I'm happy to hear yours has cleared up with the canasa. Thanks to Jan, for all the information she supplies to this site. I too, keep a box of canasa on hand just in case I have a bad flare. Azulphidine is what I had taken for years for my UC, and it still works for that little cuff of mine. I hope it works as good for you as it has for me..Good luck Kenny!!!
Karen

A couple months ago I started canasa for cuffitis. Now it is gone but if I stop the canasa completely it comes back. My GI thinks i will be on it long, long term. I was using it everday. But how fun is that. I experimented on my own and now I only use it maybe 3 times a week and the cuffitis is not coming back. So for me this is acceptable. It's not a daily hassle.

Canasa and Asacol are similar aren't they? Or maybe I'm thinking of Pentasa. Well, the bleeding stopped...so far. I get so freaked by the sight of blood and that heavy tug in the pelvis. Too many bad memories of UC. Mav, you're right - I did have a lot of stress just before. I got a streaming cold at the same time as I started bleeding, and after a really great night's sleep last night I do feel a lot better. I should stop flapping and squeaking every time I get a bump in the road, I guess!
Jan - thanks for putting my mind at ease.