Does anyone know how long before anucort should heal cuffitis? I have been on it for 3 weeks (1 25mg suppository in am and 2 pm) and as soon as I miss a dose I start to bleed.

Today I tried to use a canasa suppository in
the am in place of the anucort and this evening after emptying my pouch I am bleeding again. I am concerned after a few months of this on and off bleeding (canasa did not help), that I may be doing real damage to my remaining cuff and anastomosis even though when I was scoped in early Jan the surgeon said the inflammation was mild and I had mild narrowing at the anastomosis. I have also bee on augmentin since takedown constantly (8 months) for chronic pouchitis.

Has anyone used other meds with success and does this ever really clear now that the area is being irritated more often from passing stool and the stool is so much more acidic and irritating. I also think the anucort is causing more gas and pain for me as I never had these symptoms before even with my mild pouchitis at the bottom of my pouch.

It just seems I have had almost everything you can imagine not work in my favor since having this surgery and I am so frustrated 8 months in and still having ongoing issues and the only real answer the surgeon had was cuff removal and pouch advancement surgery if meds fail. At this point I am praying I do not have to go through this.

I'm have an appointment with my GI Friday and I hope he helps. From what I've found out is there are also mesalamine suppositories. I don't know if that would work for me as that was the basic ingredient in asacol and it quit working on my UC. I guess it makes sense. Please see the following about it:

http://www.wellsphere.com/dige...tion-cuffitis/696844

I've also found out that some people with it hardly ever bleed. My bleeding doesn't happen much is why I think I've had it almost all of the time I've needed pain meds. I'm done with my anucort, once a day for 2 weeks and I'm not any better either. I knew it wasn't going to do it, that's why I'm going to my GI and not back to my surgeon. If I need another scope my surgeon is not going to do it.

Also I'm hearing cipro and/or flagyl should be done as well because most treat for pouchitis at the same time. There are a couple of other strong ones but I can't remember their names. This is because it's hard to tell where cuffitis ends and pouchitis starts. I'm wondering if you've been on the same antibiotic too long and might need to rotate in something else. Many on here talk about rotating for chronic pouchitis. I can't remember if you can take these or not. I did a course of flagyl a few months ago and it cut down on the frequency for a while but is nauseating, yuk.

I have increased pain after I have a BM and am wondering if you do too? It makes sense to me that it would aggrivate the cuff. Someone suggested to cut out fiber for a while, so I'm not taking metamucil and quit taking immodium months ago. I've gone down to liquid diets so many times before and they didn't help.

I am also have pain from scars and adhesions, what a mess.

Hopefully someone will post that will help us both. I know how tired you are and I am as well. I'm 13 months post take down and still can't go back to work.

My sleeping pattern is all messed up. Some days I only get 3 to 5 hours of sleep but got over 13 the other day and didn't get up until 3:45 p.m. on Sunday. I would wake up to use the RR, drink water and take my daily medications - like for my thyroid. I would lay down again and boom I was sleeping. My husband kept comming in to check up on me but left me alone. I think he was scared as I never sleep that long. I don't think I've ever in my life slept like that. I think my body gave me a break as no pain woke me up. I had nothing left to pass, which probably explained that.

Have you been able to sleep better? I would like to take a sleeping pill but am afraid to because of the pain medication, antidepressants and anxiety medications as well.

I don't have any real experience yet just wanted to share with you what I've learned from the facebook groups. Most of the people on there are also on here as well. If you are on facebook and want to get into those groups PM me. A lot of it is more social but we get into supporting each other too. I asked what people did for cuffitis, which is basically what you asked here and several people were really helpful. They are closed groups so no one can read our posts unless they are in the group and the only way to get in a group is for a current group member to add you. So if you think about it it's better than on here in the way that non members can read here. One of the groups is set up by Bill who runs this site.

I pray we get a treatment that will help us get over this so we can get back to a new "normal" life.