well that isn't ideal. I was on long term steroids before my colectomy

Me too. Long term and high dose. It does not mean you will get it, just a higher risk. This is just something to keep in the back of your mind, so that if the situation presents itself, you might be more willing to accept it.

Jan

I was too, and no major issues to this point.

I was on a very high dosage of prednisone (60 mg) for quite some time prior to colectomy and my UC had severely deteriorated despite the treatment. My surgeon said the colon was dissolving in his hands as it came out. I have had chronic pouchitis for 18 years. I certainly fit with this theory.

I was on mega doses of Prednisone unfortunately. So far...knock wood...it's been three years and I haven't had pouchitis yet. In the grand scheme of things my pouch is just a baby so who knows what the future will bring. My sister told me that in her 21 years with her j pouch she hasn't experienced pouchitis and she was on prednisone way longer than me. Interesting though.

we're the other side - my son was only on steroids for a very short time as they didnt work for him. He was put on higher risk meds like Tacrolimus then 6MP then eventually Remicade. Since surgery over 5 years ago he has had mild pouchitis pretty much continuously. The only symptoms he has is leakage at night. It's usally very light and he's learning to control it based on what he eats in the evening.

Am I wrong in thinking that 71.5% of the patients who DID not develop pouchitis is fairly good odds?

I wonder how many of the 244 patients were on steroids just before colectomy? If I am reading this study correctly, it was based only on 66 patients who developed pouchitis.

No, the study was based on the entire 244 patients that met the inclusion criteria. What is not stated in the abstract is whether UC was an inclusion criterium. So, there could be some with FAP, who have a very low pouchitis risk. That might explain the low pouchitis incidence in the study group. I believe other studies I've read indicate pouchitis rates closer to 50% for IBD patients.

What the study was saying is that it was taking high dose or long term steroids right before surgery was a risk factor, not just taking steroids at all. So, if you had been taking 20 mg or less for less than a couple of months, you are not in that group.

To me, it may not be all that meaningful, because it largely is an indication that if your disease was severe at the time of surgery, THAT might be the real factor. It might place you in a particular subtype. But, still, it could be cause and effect from the drug too.

Jan