20 times a day?

jen I am so very sorry you are suffering so much and have been suffering for so long.
Best thing I think you can do is to get to an expert jpouch facility - such as Mayo or Cleveland clinic. I am wondering if there is some mechanical problem with your jpouch that possibly only a very experienced jpouch GI doc would see. I think scheduling a trip to one of these facilities and plan on staying several days so they can get all sorts of testing done would be a good thing for you now. Even if the end result is a decision that your best option is for jpouch removal and perm. end ileo at least you would be more fully informed about your full health and what results to expect with that.

I believe TEMArie (a frequent poster on this board) has gone to Mayo for more expert jpouch care. You should PM her as she can probably help you find some doctor names,etc. I am very familiar with Cleveland Clinic docs, processes, etc.. and if you opt to go there I will be happy to help you navigate their system.

Also there are many of us on this board who have suffered with "failed" jpouches and opted to have them removed and now live with permanant ileostomies. I cannot think of anyone on this board who has regretted that decision.

hang in there. sounds like you've made a big step in trying to reclaim your life. keep going!

Thank you Liz! I am going to call my insurance to see what steps I need to take to see an out of town specialist. I am also going to call mayo clinic to see what they suggest.

Dr. Edward Loftus Jr. M.D.
Director, Inflammatory Bowel Disease Clinic
Gastroenterology and Hepatology
Professor of Medicine
College of Medicine

Mayo Clinic
200 First Street SW
Rochester, Minnesota 55905

Appointments @ 507-284-2469, fax 507-284-0538 and his secretaries/nurses are at 507-266-0538

My local GI referred me to Dr. Loftus when he could not get my cuffitis/UC to go away with traditional treatment. He said that he was a generalist and I needed an IBD/j-pouch specialist. I saw Dr. Loftus in 1998 for a second opinion regarding my UC diagnosis. My local GI and he trained together at Mayo.

Dr. Loftus is awesome and asked me questions that made me think that he must have a j-pouch too. I can reach him quickly. His nurses get back to me quickly when I call with questions or if I email him he responds with-in a day. I don't get through to my local doctors as fast as I do to him. Needless to say I highly recommend him. He looks at more than my j-pouch and UC problems and considers my underactive thyroid, fibromyalgia, neuropathy and other health problems thus considering how they all affect and interact with my j-pouch. He's had testing done in those other areas that have not only helped with them but have in turn helped with my j-pouch. I can not recommend him higher.

One example: Did you know an underactive thyroid adversely affects j-pouch function? This is just one of the simple things he found that my local GI didn't think of looking at. My Internist has been having a hard time getting my medication for my thyroid at the correct level since my surgeries. Dr. Loftus picked up on how my super low thyroid reading was and explained how adversely it was affecting my pouch function.

One of my biggest complains with specialists has always been that they are myopic about the one thing they are looking at and don't look at the BIG picture of the entire body. He looks at the big picture. Everything is connected and I have many autoimmune health problems.

Things aren't perfect as I am dealing with chronic cuffitis and IPS as well as adhesions. But I have a good treatment plan and have my problems under control. Unfortunately I am in the 4% or whatever percentage of those that gets UC in the 2cm of the rectum left at the rectal cuff. I also have IPS which I'm not surprised at since I had IBS along with my IBD. I've had 5 abdominal surgeries so adhesions are going to happen. It is what it is. At least I know what I'm dealing with and how do deal with it.

I really feel for you and all of your years of suffering.

I had a horrible time with my temp ileostomy too. I had dehydration problems and attachment problems. I was afraid I was going to have to go to give up on my j-pouch and was afraid of going to a stoma too. After reading posts on here for close to 3 years I've come to find out that permanent ones are very different. I can not understand how your doctors have let you suffer for all these years without referring you to an expert

Take care and please let us know how you are doing.

quote:

but can't seem to get straight answers from any of my GI dr.'s. I feel like they are annoyed with me.

I can totally sympathize with your impression that the doctors blame you. But they are much more likely vexed and anxious over your condition, not YOU as a person.

Put yourself in their shoes. They desperately want you to be well, and they are failing to do so.... if they are blaming anyone, they are blaming themselves.

Thank you for all the info TE Marie! I am going to call and see about making an appt as soon as I can. I guess I never realized that my GI's weren't specialist.

yes jen, at one time we all thought our GIs knew everything. But in the big scheme of things there are very few jpouchers out there in the world. And even if a GI is an IBD specialist (which most probably aren't even that), it doesn't mean he deals with many jpouchers.
So dial away girl. Get into TEmaries docs at mayo and see what they can do for you.
best wishes.