Well, this is interesting. My new GI doc, appointed by my new HMO (which i am petitioning to get changed back to my old group) pretty much said he can't help me out with my pouch. He didn't outright claim he can't help me, but he had no idea what to do when i told him i have cramps, spasm, gas, might have a stricture needing dilation, etc.

He performed a pouch scope which they called an ileoscopy and said it was clear according to the biopsy but didn't know what that means!! He just said he was going to fax all my stuff back to my j-pouch surgeon whom i haven't seen in 2 years! I called the surgeons office and he wants to see me again to help sort stuff out and fidn me a good GI. My HMO doesn't cover him (which is why i want to revert to my old medical group if insurance will allow) and office visits are 300$ each without insurance.

Anybody else faced with clueless doctors? I literally called my surgeon's office telling them i have no one to turn to if this thing goes south or flares up, etc. Current GI can't even determine the results of the pouch scope and biopsies, just said "it is clear". Whatever that means.

I asked him if the HMO could send me to a different GI doc and he said they wouldn't.

This is pretty lame if you ask me!

I just finished a week of Cipro 500mg 2xday (had the pahrmacy call in a refill to an old prescription and my surgeon was gracioius to approve) for what i think is pouchitis. Helped out for 48 hours or so then gradually started get worse again. The first tow days are bliss. I can seem to hold it for more than 4 hours which is amazing. But the effect doesn't last long.

My insurance company , HealthNet , is the pits, i want to switch, but can't because of pre-existing medical condition. No one will take me! I might have a chance to get on a Blue Cross PPO through work (group plan is my only hope i guess).

Oh good old insurance... here's to some kind of reform!

Doesn't it annoy you that you have to pay $300 for a visit when if you had insurance they would only pay a portion of that... if your surgeon is affiliated with a hospital you can work out a payment plan of some sort. (I know paying out of pocket is not fun! But you should deal with someone who is worth your time.)

I hear you about the pre-existing condition. I was so thrilled when I found out my soon to be husband's insurance, Keystone Health Plan East (connected to Independence Blue Cross) had no pre-existing conditions.

Good luck!

I bounced between 6 different GI docs after surgery. Not a single one of them could help me. I really think they aren't equipped with enough knowledge of the jpouch. I think your best bet is a colo-rectal surgeon. Atleast they understand the mechanics of the jpouch, maybe you'll have better luck with them.

Maybe you could dump it back in the ins. co. lap...so to speak. Ask them who they are have in their system that is an IBD specialist and can manage an ilioanal anastamosis....where they have that kind of care in their system. I did that with my HMO, they approved out-of -network. Because they didn't HAVE anyone. Their exact words when they approved my request for my specialist that I wanted," Yes, we don't think we could find anyone else to take your case." Worth a try.
LoriP

Great advice, Lori! My experience has been that my surgeon is the one I see for ANY issues I have with my J-pouch, including annual exams. He knows what he is doing. My GI doc is wonderful but J-pouches are not his specialty although he knows about them.

hey thanks Lori for the advice i'll give it a shot, too bad my ins. has terrible phone hours and support. good times.

chelsea, GI doc hopping doesn't sound very fun, i could try it if i had a PPO plan which i USED to have, oh well... now i just have to convince the ins. company no one else can help.

I hope it works for you, keep us posted.
LoriP