At my pouchscopy last month, my pouch was very milady inflamed but my cuff was severely inflamed.

I have tried Pentasa suppositories, 2g a day. I have also tried Predsol, which sucked as I couldn't keep it in at all. I then tried Predfoam, which contains 20mg Prednisone in the foam, twice a day.

Nothing seems to have worked. The Pentas seems to stop most of the painful cramps, but that's about it. The frequency and urgency are still there, though there's very little blood.

Last week I went for a checkup and I have developed small fissures. I think these were caused by inserting the applicator from the Predfoam again and again. Surgeon suggested I leave the Predfoam if I'm not convinced its working (it's been 3 weeks and no difference!) and stick with the Pentasa suppositories. He also gave me Diltiazem to help with the fissures.

If all fails, and the cuffitis doesn't settle, his last medicinal resort is something called Acetarsol, which is a suppository containing Arsenic. Not much is known about this treatment, but it does seem effective.

Have any of you had any experience of Acetarsol?

Any other advice? This cuffitis is seriously doing my head in.

AQ
I had cuffitis for quite a while. It took me months and months taking Proctofoam 4 times a day....spaced out and it did work. I never had to take anything else. If I am reading your post right it has been a month since you started taking different meds for it. It does not seem to be a quick fix. I started off on Proctofoam three times a day and told the surgeon I felt a little better but did not feel it was holding me so we went to four times a day. It was a pain cuz I had to bring it to work and insert during lunch time but I was determined not to go on to something else. It was a slow process but the doc also told me it usually takes time for the cuffitis to burn itself out.

Thanks Hope777.

What does it mean when people say "it will burn itself out?".

Maybe I should be more patient, but I'm finding life really tough right now. I have a baby on the way and I wonder how good a dad I'll be if I'm like I am now

You American's talk a lot about Proctofoam. I take Predfoam, which is Prednison in foam format. One squirt is 20mg, and I've to take that twice a day when I'm on it. How does Proctofoam compare? Is it a steroid? Similar to prednisone?

Keep smiling,
AQ

AQ
It is definitely hard to be patient when you feel miserable day after day! Meaning "it will burn itself out" is that eventually it will go away. My doc told me it is leftover UC that is in the little part of the colon that was left that the small intestine is sutured to. The Proctofoam is hydrocortisone acetate 1% and pramoxine hydrochloride 1%. It is used 3 to 4 times daily. It is steroid in nature. Infact, if you ask your doc yours sounds like it is stronger but I am not sure. The big thing that finally changed it for me (and I mean months after, sorry to say) was using it spaced 4 times a day, like I said. When I started it would start to feel a little better and then during the day I felt like it was wearing off so I asked if I could increase the frequency. Then I took it spaced out about every 5 hours.
Hope you find something that works for you soon. For me it took almost a year for it to finally go away and I did not have a severe case. But I did see gradual improvement. So as the months went by I asked the doc about it and he said it usually eventually "burns itself out" however, you do need some type of treatment. Over here some people use Canasa suppositories and they work well. I do not know if they are the same as your Pentasa but you could ask your doc.

I think they are the same thing: 1g of slow release Mesalazine right? I try and take them twice a day although they have become more difficult to insert due to the pain.

Another thing I've noticed is that my stool ia often really thick. Rather than be a good thing, it makes me go more often. It never used to be like this only since Feb this year. My diet hasn't changed. Any ideas?

Also, did inserting the procrofoam applicator that many times, with your cuffitis active, not hurt or irritate your bottom?

Yes, Canasa is Mesalazine also. I agree that thicker stool can make you have to empty more frequently. For myself I find I am better with a looser stool. To just throw out some ideas....if your diet has not changed do you eat fruit and vegetables? Do you take immodium? For me I have to keep fine tuning my immodium or it becomes thickened. No, I did not hurt or irritate myself by inserting that many times but I will tell you I had to go slowly. Sometimes I would feel a little burning but it went away quick.

AQ,
How do they diagnose fissures and how do you know if you have one? Do either of you or Hope find that the looser stool always causes the burning as it does for me? I find the thicker the stool the better even with cuffitis which I am constantly combating also. Trying canasa suppositories now which work until I have a day with several trips to the bathroom and then it seems everything is suddenly undone again.

Kjeane
Usually your doc can diagnose a fissure by visual inspection or by using a gloved finger tip. Usually a lot of burning and sometimes itching accompanies it. No, I find it better for me to empty with looser stool and it does not affect the burning feeling. I know that I must have some anal fissures because sometimes after passing stool and the water on my bidet hits the area it feels almost like being cut with glass. How long have you been fighting the cuffitis?

Hope,

It seems I have been battling pouchitis and cuffitis since takedown about 3 months ago. I also get the glass like pains/burning and itching and wonder about fissures and hemmorhoids and am going to make an appt to see my surgeon. I have been using casasa suppositories and have been on augmentin the whole time.

Kjeane
Don't give up....it took me about 9 months to get rid of the cuffitis but it did go away. Have you tried the proctofoam? Maybe a combination would work better for you. Just a suggestion worth talking to your doc about if you have not tried that. When I have that glass like pain I load up with calmoseptine on the area and it seems to sooth it down quickly. Hope you get some relief soon. It is no fun!!!

Thanks Hope. Lately it seems plain old vaseline and lots of it helps. It seems sometimes the pain is so bad from the cuffitis that even inserting the suppository hurts initially. I really do hope this goes away soon as between the back pain, rectal pressure and shooting glass pains have had me resorting to morphine pills the last couple of nights and I have not taken them since a week after my takedown.

For some odd reason I seem to feel worse now than I did weeks after my takedown as as time progresses things seem worse not better.