Not understanding why nobody will help you. You mentioned your surgeon and primary...what about your GI doctor?

Believe it or not my GI isn't too familiar with pouchitis so he said that he needs permission from my surgeon. It's a constant circle with these people. I had to explain to my primary and the woman at the walk in what a J-pouch was. They have never heard of it. Yes this is what I am dealing with haha

The most common meds for pouchitis are cipro and/or flagyl. I'm surprised your surgeon would not prescribe something for you, because pouchitis isn't something you want to leave festering. That being said I've encountered quite a few people in the healthcare industry who have no idea what a j-pouch is and consequently won't touch me with a 10 ft pole. I suspect that might be what is happening in your case. I'm currently my GP's only patient with one (as of my last physical in July), and up until recently she was reluctant to prescribe me anything without running it by my surgeon or GI first.

Probiotics can be helpful to manage pouchitis, but they're more to keep it in remission rather than treat an existing case.

Either way, you need to get to the bottom of your issues. Can you get a referral to another GI? Are there any others in your area? Perhaps you can start making some calls.

I agree with spooky that you need a different GI. It's one thing for a GI to acknowledge limited experience with J pouches, and quite another to practice such an ignorant brand of medicine that they've become incapable of reading about things in their own specialty. Good luck in your search for a real doctor.

I am sorry for you as this sounds insane. Maybe if you print some literature down on pouchitis treatments and show your surgeon he/she may be willing to help you or you need to find a very qualified GI who hopefully has some jpouch patients.

Many of us are on rotating antibiotics and also sone are on them for long periods of time for pouchitis. If your surgeon does not want to prescribe repeat doses of antibiotics (not sure why), he should be able to refer you to a qualified GI who can help manage you medically. Don't give up hope and research if you must for a qualified GI. I left mine and found one with jpouch patients as I was not satisfied with my prior GI's lack of knowledge for jpouch patients who were experiencing post op issues that were really no longer treatable by my surgeon from a maintenance perspective. Still my surgeon did not abandon me and did prescribe antibiotics for over a year straight after my takedown due to pouchitis. Good luck.

I have an appointment with a pouch specialist but not until mid Feb. My primary called a script in for prednisone because he said it will help with pouchitis. All he had to do was google it and find out antibiotics work. Luckily I found a bottle of flagyl that I had before my surgery that I never used. Yay!

Yikes, I would avoid taking prednisone at this point, if you have flagyl on hand. While prednisone is prescribed sometimes for pouchitis, it is usually reserved for severe, chronic antibiotic resistant cases. It's not a first line med, and the prednizany side effects can be much worse. Definitely further proof that you need to find a practitioner with appropriate pouch experience.

Why is Prednisone being prescribed rather than Entocort aka Budesonide? Entocort is in the same class of drugs as Prednisone, but it is a designer steroid with way less side effects and way less harshness on one's body. I don't get this. Has Entocort been attempted? It is usually the only drug in this category that is prescribed to treat pouchitis, and certainly is preferable to Prednisone for many reasons.

And antibiotics is the first line of treatment before ANY steroids meds.

AKK,

I agree with spooky. As bad as my cuffitis and pouchitis have been at times over the last year, neither my surgeon or GI has yet to prescribe prednisone. I think if they did, they probably would feel the surgery has been a failure, but they are also looking for less invasive medical options with fewer side effects.

Your pouch specialist should be able to call in antibiotics right over the phone for you if they know you are struggling while waiting to see them.

quote:

Your pouch specialist should be able to call in antibiotics right over the phone for you if they know you are struggling while waiting to see them.

Yes, this. Can you call the specialist's office and ask for a prescription in the meantime? Explain what is happening with your primary care doctors. You shouldn't need to suffer like this in the interim.

I refuse to take any steroids since I was on them for 2 years. They did more harm than help. So far I have started the flagyl so hopefully that kicks in soon. I am just so miserable right now. When I go to the GI tuesday I will ask for a scope and biopsies to be done to prove to everyone that there is a problem. Until them I am just resting and staying hydrated!

This is crazy. Find a GI with pouch knowledge, even if it means you have to travel a bit.