I just found out I have cuffitis with two large, deep ulcers that are causing my pain. Typically if I have pouchitis (which I have had off and on for 4 years), it will go away with cipro in a couple days or at least the symptoms do. This cuffitis isn't going away and I am 2 weeks out from my scope. I use a bidet and take cipro. They started me on Procto-foam to help take away some of the pain. Does anyone have any advice? Does it typically take this long?
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Canasa suppositories and anucort if foam not helping. This takes a LONG time to get under control. Soft stools and use a biget or squirt water bottle to keep anal canal as clean as possible after emptying pouch. Prescription numbing creams can help.
Jeane--
How long is a long time? That is what I was afraid of.......I do have lidacaine (sp?) and have a bidet so am good there. Made the mistake of eating raspberries today and almonds yesterday and I don't think it was the best choice.
How long is a long time? That is what I was afraid of.......I do have lidacaine (sp?) and have a bidet so am good there. Made the mistake of eating raspberries today and almonds yesterday and I don't think it was the best choice.
For me, it took about a month to get significant results from Canasa suppositories. I would alter your diet to avoid roughage (like nuts, seeds, popcorn, raw fruit and vegetables, etc.) until this is under control, similar to UC when you had a colon.
The time to get into remission varies from person to person, just like with UC. But, in the case of cuffitis, a persistent case may mean something else is going on, like Crohn's or ischemia.
Here is a link to an interesting article by Dr. Bo Shen at Cleveland Clinic about someone who had persistent cuffitis, that responded well to release of adhesions in the gut and pouch revision surgery.
http://onlinelibrary.wiley.com...0.1002/ibd.21448/pdf
Jan
The time to get into remission varies from person to person, just like with UC. But, in the case of cuffitis, a persistent case may mean something else is going on, like Crohn's or ischemia.
Here is a link to an interesting article by Dr. Bo Shen at Cleveland Clinic about someone who had persistent cuffitis, that responded well to release of adhesions in the gut and pouch revision surgery.
http://onlinelibrary.wiley.com...0.1002/ibd.21448/pdf
Jan
Jan, that makes me nervous because at my last scope (2 weeks ago), the dr. noticed that my small intestine was inflamed. She said that she knew I didn't have Crohn's, but thought it was due to the Fleet enema I prepped with. Does UC ever turn into Crohn's?
No, it does not really "turn into" Crohn's, but what happens is that you had Crohn's all the time, but just not with signs and symptoms that would point to it. There are a number of folks here who were certain they had UC, but later after colectomy were diagnosed with Crohn's.
Not sure why a Fleet enema would cause inflammation like that, but next time you are scoped, don't use it. Just use plain tap water instead. I open the Fleet enema, throw it out and refill the bottle with plain tap water.
Still, some rectal cuff ulcers do not mean it is Crohn's. But, say they assume it IS Crohn's, then that would mean there are more drugs you can try to treat it (there are more drugs approved for Crohn's than UC and most often the insurance company will only pay for FDA approved treatments). Case in point: I use Simponi for my enteropathic arthritis, and my pouch and cuff have never looked better. Same thing when I was on Humira for the same diagnosis.
Jan
Not sure why a Fleet enema would cause inflammation like that, but next time you are scoped, don't use it. Just use plain tap water instead. I open the Fleet enema, throw it out and refill the bottle with plain tap water.
Still, some rectal cuff ulcers do not mean it is Crohn's. But, say they assume it IS Crohn's, then that would mean there are more drugs you can try to treat it (there are more drugs approved for Crohn's than UC and most often the insurance company will only pay for FDA approved treatments). Case in point: I use Simponi for my enteropathic arthritis, and my pouch and cuff have never looked better. Same thing when I was on Humira for the same diagnosis.
Jan
It took me 9 months, after diagnosis, to get my cuffitis under control BUT I was using Anucort and Canasa off and on. I ended up using just Canasa during the last 4 months to get into remission. I had acute and chronic cuffitis which means I will probably have times when I'm not in remission. I am taking daily Canasa again for a flare up. Cuffitis is UC, per the pathology reports. I had small ulcerations and bleeding when it was diagnosed.
Some people do well with Anucort which is much cheaper than Canasa.
Some people do well with Anucort which is much cheaper than Canasa.
What is Canasa or Anucort? I am on cipro---don't know if it is similar?
Jan--what is Simponi? Humira? Do you have Chron's or UC?
Thanks to all of you!
Jan--what is Simponi? Humira? Do you have Chron's or UC?
Thanks to all of you!
Canasa is mesalamine suppository (same drug as Asacol). Anucort is hydrocortisone suppository.
Humira and Simponi are both in the class called biologics. They specifically target the inflammation causing substance called TNF. They are by injection only. Remicade is another one, but is by IV infusion only. They were first used for rheumatoid arthritis, then ankylosing spondylitis and Crohn's. Simponi is awaiting FDA approval for UC. Anyway, they are expensive and generally used after failing other treatments.
I have UC, as far as I know.
Jan
Humira and Simponi are both in the class called biologics. They specifically target the inflammation causing substance called TNF. They are by injection only. Remicade is another one, but is by IV infusion only. They were first used for rheumatoid arthritis, then ankylosing spondylitis and Crohn's. Simponi is awaiting FDA approval for UC. Anyway, they are expensive and generally used after failing other treatments.
I have UC, as far as I know.
Jan