Btw, Jeane, I might try Cipro. Should I buy 250mg, 500mg or 750mg?

Your doc will probably prescribe 500 mg X 2 a day. Do not purchase this medicine on the internet (if you even can). Have your doctor prescribe it as it is a very strong medicine and can have significant side effects like tendon rupture etc.

Psyllium seed husk is sold as Metamucil in the US.

I agree that Cipro should be used only under a doctor's care, but tendon rupture is quite unusual. I take Cipro every day, and I have more concern about C diff than tendon issues.

jeanne, I'm sorry I wasn't clear. I never took anucort for that long. I was on it or canasa for 3 months before going to Mayo when I was told to stay on canasa until the cuffitis was in remission. I take the anucort when it is really bad.

I'm not going to get into if your cuffitis treatment or mine is the best or not. The standard treatment of cuffitis treatment does not include antibiotics. The standard treatment of UC is not antibiotics either and cuffitis is UC.

Cipro is a dangerous drug for me to take as I did get c.diff from it when I had a colon and I have had c.diff with my j-pouch so my physicians will not prescribe it for me and I won't take it. It is a great antibiotic for many to take. As with any antibiotic, it isn't good to take one when not needed either.

I take augmentin for pouchitis but not for cuffitis. I believe jeane use to take this antibiotic as well.

At the end of this treatment description link, from the Mayo clinic, for the treatment of Pouchitis it discusses the treatment for "Cuffitis" as being the same as UC with mesalamine (canasa).

http://www.mayoclinic.org/pouchitis/treatment.html

I agree with you TM Marie. I am just not sure why Canasa really does not help my anal pain and bleeding at times and cipro does. I also think I have fissures.

jeane, I think you have everything possible going on in the same area at the same time. Talk about atypical, I really feel for you and am glad Cipro gives you some relief.

I was at my Neurologist's yesterday and we were discussing the potential causes of the neuropathy in my feet. He said it could be from a past vitamin deficiency or medications such as chemo etc. that didn't cause the problem for years. I told him I didn't use any of the strong UC medications, biologicals etc., but that I'd taken Asacol from 1997 to 2010 and was currently using mesalamine, the same ingredient, daily for cuffitis. (Jan Dollar and I had a discussion about it's potential for causing neuropathy a while back as I had read somewhere that it could cause it. The only cases she found in research indicated the neuropathy showed up immediately after starting the use of Asacol and those were decades old cases.) I've read at least one person on here that had severe damage, I think to his colon, from taking Asacol. My doctor said Asacol could be a possible cause of the neuropathy but it is probably a slight chance so I should keep on using it. This was not reassuring at all as he was testing to see if it has spread to ny ankles or if my hands are going numb YET.

I hope you have made your decision of how you are going to proceed with your pouch treatment, procedure or surgery and will soon be feeling better soon jeane.

Thanks TE Marie. I hope you get some relief also.
I will post back as to the hopeful success of the dilation this month, but I am not getting my hopes up that it will be any long term solution. I just have to pull myself up by my bootstraps and probably move forward with advancement hoping it may solve the bulk of my issues and not present new ones (that is the scary part).

I didn't know you'd decided on which way to go first, good luck jeane

The best of luck to all of you!

By the way, have any of you had problems with the mesalamine suppositories? I don't know why, but the last few days then I have not been able to use them as I start having pain (burning, itching) immediately after taking them and "I need to get it out" straight away!

I honestly feel a bit lost. If I can't take the medication that it supposed to make me feel better, then what do I do? :-(

Yes I experience this often. Make sure you are completely cleaned out before inserting. Sometimes I cringe for about five or ten minutes and then the feeling passes. This is one of the reasons I don't care for Canasa. You can try anucort suppositories. I have complained about this to my GI more than once.

I agree with you both on this one. jeane is right on this one, I have a sprayer - similar to using a bidet - and make sure my j-pouch is empty and I am really clean. If I didn't have this I'd use a wipe or wash cloth. I also use a liberal amount of personal lubricant which helps coat and lay on my left side for insertion and for several minutes. The discomfort of wanting to expel goes away as the suppository becomes body temperature. I need to lay down and not stand up with a suppository inside or I feel like I need to expel it. I dislike using suppositories but dislike cuffitis more. I seem to not use them when we visit our adult children and missing 2-3 days causes me problems which motivates my use


I hope something I said helps. You need something like lube or vaseline to coat against the initial burn and itch. I think vaseline coats the pouch too much which defeats the purpose of the medication so use lubricant.

It's very useful, thanks. I have decided to try a few days on Pentasa 500m via oral, probably just to find out it's not enough and then I'll go back to the suppositories, at which point your advises will be very useful.

My GI gas suggested that if the Mesalamine suppositories continue to not help me, then he will suggest that I try prednisone 10mg suppositories, but to be honest then I dislike y the idea - I have read that there are some severe side effects. Any experience?

I personally will never take prednisone in any form again unless I'm on my death bed I hate it so much - but I may be overreacting

Why don't you take it orally and by suppository at the same time - this will bombard it with the mesalamine from both ends, so to speak.

Seriously, my GI, who is at a world renowned institution has never mentioned prednisone in any form of treatment now or in what if possible treatments for the future. jeane goes to a pouch expert, Dr. Bo Shen, at another world renowned institution. I wonder if he as ever recommended prednisone orally or by suppository to anyone of his patients. He has quite a few out of the box treatments.

Have you ever tried the Hydrocortizone suppositories? They are a much milder form of steroid. Maybe if you used them a few days or however long he would suggest then you could go back to the mesalamine and avoid the stinging. I would try that before the prednisone. To me that's like using a stick of dynamite, prednisond, when a firecracker, hydrodortizone, will get the job done.

Best Wishes!

Well if nothing else works try raw potato juice.
It contains protease inhibitors,I suspect your
mucus layer is thin and digestive protease is
not deactivated,which then attacks the tissue
and dissolves it.
Old Mike
http://www.ncbi.nlm.nih.gov/pubmed/15086363

I was diagnosed a couple of times w/pur anus/sorry can't think of first part. anyone even w/ a colon can suffer w/it. having bowel movements going from one extreme to the other. my surgery has been over 20yrs and just in the last 8 started dealing w/this. One doctor told me and what to do/not to do/other one didn't mention to me but wrote it on my bill. Not sure why he didn't help me out w/that. two yrs ago diagnosed w/ cuffitis and given canasa which worked for me but now its like it happens way too much. I tend not to want to eat anything but that is not answer either b/c then just bile comes out. Actually it is the only pain I've had that has been almost unbearable. Cause anxiety,less patience. dealing w/it right now. Hope you find relief soon. I DEFINITELY know how you feel.

Interesting article Old Mike. I wonder if that's why I crave mashed potatoes so much

Yes, it's very difficult to keep up a normal life like this.

To be quite honest, then I no longer know if I'm better with or without Mesalamine (oral or suppositories), I have so many ups and downs. I just know for sure that it has not made a significant difference for me and I'm more sore if I have been using it, so I'm ready to take the next step, it being Hydrocortizone, prednisone or something else. My surgeon is on holiday and when he is back then I'll move on.

It's been two months of pain, which isn't easy to manage with a good, but demanding job and two kids aged 2 months and 2 years. Thank god I have my very supportive wife ... And you guys :-)

By the way, my biggest problems occur when I'm standing up or walking. Sitting on a chair or lying down then I'm almost Ok. Is this normal or might I have other problems that the surgeon missed when he checked me?

I use a little liquid antacid on a wipe when I get the severe burning. Something like Mylanta . . . I use generic store brand. It cuts the acid burn temporarily until your body can calm down.

fq
Have you though about a bidet?

I occasionally get very painful and Questran works wonders for me. I separate it from my meds by 2 hours or more. When things get real bad, I'll get up in the middle of the night and take it too. For me, it brings amazing relief because the acid is no longer ripping me to pieces. That, combined with hydrocodone helps me cope. If I don't have these things, I try to avoid emptying my pouch and we all know what a joke that is. Once it was so bad I tried to quit going to the loo by not eating. It didn't really work, but finally things healed.