Rocket,

I don't think there's a "right or wrong" number of times to see your GI, or any doctor for that matter. If you are having issues, you need to be followed up, hands down, whether that is weekly, monthly, etc. As long as you have a good insurance plan and don't max out your visits, that is.

As for frequency of pouchitis, you are unfortunately probably entering chronic pouchitis territory if you are getting it this often. You may need to rotate antibiotics. Some people on this board take antibiotics continually. There are also many people here who manage pouchitis in other ways, such as with pepto bismol, enemas, pentasa or even prednisone, and I'm sure they'd be happy to fill you in, as I'm certainly not an expert on pouchitis treatments. You may want to discuss alternatives with your GI.

With respect to diet, my understanding is that there never really has been a solid or proven link for diet directly causing pouchitis, though as with anything, if you have certain food intolerances, they can aggravate an existing case.

Hope you can get things sorted out!

Spooky,

Thank you. I suppose others who have more experience with getting pouchitis all the time might be able to add some add'l info.

Anyway, I guess that is why my GI does not want me to take meds all the time as it will loose its affectiveness. The only meds that work for me thus far is Cipro and Flagyl.

In the past, he used to want to see me once a year, but the problem with that was, I would begin to get sick, and do nothing about it as far as making a doctor appt until 4 to 6 weeks went by before I could no longer take it. By that time, it was a severe case of pouchitis. And this happend at lease twice a year for the prior 3 years.

We discussed this last year and that is when it was agreed that he would see me every six weeks if he even saw that my pouch was slightly inflamed.

I am sure my pouch is inflamed right now but I have an appt in a couple of weeks.

Thanks again.

Rocket

The way I work with my GI is that once we have figured out the diagnosis and treatment, if I have a relapse, I just email him for a prescription, or just put in for a refill of my regular prescription, even if there are 0 refills left. The pharmacy contacts the doctor to get additional refills. If he thinks I need to be seen, then he has his assistant call me. But, otherwise, I just see him for a routine scope and biopsies every 12-18 months.

I'd go nuts having to see him as often as every 6 weeks, since I have other doctors I see. So, unless he was going to do something different or special, I don't see the point. Maybe I am missing something? I see what you are saying about putting off dealing with the pouchitis too long, but how about having a standing order that you can have filled without a visit?

Jan

Hi Rocket,

I see my GI every 6 weeks so for me, it is normal. At some appointments if I am doing super wonderful, she pushes it to ever 9 weeks.

It can be a pain, but honestly for me it helps knowing that things cannot get so out of control in terms of my pouchitis and CD that I will end up hospitalized before I see her again. My last GI was a once a year guy and my treatment ended up being administered through constant ER and hospital stays. I left him because I needed someone to be more active in managing my pouch.

I also have, like Jan mentions, a standing order for antibiotics and steroids. I also routinely get hydrated at the hospital by an IV infusion.

So, for me being hospitalized is much worse and a disruption of my life than seeing my GI every six weeks.

Hi Tammeykathleen,

I think I asked my GI once before about having a standing order of meds as Jan and yourself have received.

It can be a pain, but in the past, I would never act on my discomfort until it got way out of hand and I would be really miserable for two months or more. I would tolerate as best I could and after 4 or 5 weeks, when I had enough, then I saw my GI. By then, my Pouchitis was really bad.

Now, as often as I go, normally, my pouch is sometimes, slighly inflamed where he will tell me to use Canessa Sup. I don't use the Canessa everyday as I don't want it to loose its value by always using it as instructed by GI.

I thought I was the only one who saw my GI as often as I did. Thank you for sharing that info.

Rocket

I use canasa for chronic cuffitis and have a prescription from Dr. Loftus at the Mayo Clinic. I see him annually. He wrote me a prescription for 6 months and said to call if I needed anything else. I was instructed how long to use it, how to taper down and use a maintenance dose and also how to go back to a daily dose if I needed to. I'm seeing him next week and have called his nurses twice. This last time as my Internist and I think I now have Pouchitis.

I agree that you could be making too many visits plus I don't know that canasa, which is mesalamine, is a drug that we have to worry about getting use to like antibiotics. I'm not sure but they rotate antibiotics for that reason but they don't rotate canasa with anything.

That's my 2 cents. Good Luck.

TE Marie,

My doctor does not want me taking Canasa all the timd for just that reason, it may loose it being so effective.

Rocket

Boy, you have me really confused, since mesalamine is considered a maintenance drug, in addition to being useful for induction of remission. I have never seen anything about a drug tolerance occurring. But, it is true that frequent use of suppositories can cause anal irritation.

When I was first treating my cuffitis, my GI had me on Canasa daily for a couple of months. Then he said to taper off to whatever frequency kept the symptoms at bay, so that could be as infrequent as once a week or twice a month. When I got tired of the suppository thing, I asked to resume Azulfifine for maintenance, and just use Canasa for flares. He was fine with that.

Basically, it is OK to use them on an ongoing basis, but you do not need to stay at the same dosage that got you into remission. The point is to try to prolong remission and avoid flares as much as possible.

Perhaps my thinking is old school or not the current trend... I don't know for sure.

Jan

Thanks Jan,

I use it off and on. I probably should be on Canasa more often for now. When I was really bad with pouchitis, I would take one before bed, and 1 after breakfast.

At my last visit, my doctor wants me on it at just bedtime.