I'm so frustrated. I'm not sure if I am the pouchitis queen or what. Being a military family, we move SO much and when I finally find a Dr that isn't a complete butt, either we move or the Dr transfers. I called them today and what a surprise, I had to leave a message. I have no faith in any Dr's anymore. I know that may sound bad but I'm completely disgusted at the lack of care I have received. I've had my J-Pouch since 2000 and have had pouchitis quite alot. I was bleeding so much last night and feel completely awful today. My pouch was definitely packed and nothing was wanting to come out. I didn't have the pain of an obstruction (I've had LOTS of those) but I couldn't seem to go when basically, I always go. I was bleeding so much that it actually scared me. All of this and we are getting ready to move AGAIN. I just want to cry... OK, I am crying. Everytime we move, I get my hopes up that I will find a Dr that actually will take the time to listen to me and actually care. I get disappointed every time. I'm just so tired I thought maybe if I complained to people that actually "get it" it might help. No one I know can actually understand what I go through on a continual basis. I love my husband, and he really does try, but he doesn't understand. I have really been trying so hard with the whole mind over matter but when my butt is on fire, my tailbone is in complete spasm, and I feel like crap, it's VERY difficult to remain positive. I guess I needed to vent.. Thanks for listening to bunch of whining but like my post says... I don't know what to do anymore..

I know there's a post floating around somewhere about the "best" doctors in our opinion. I believe it's titled "best surgeons in america" or something like that. Have you ever taken a look at the list to see if there's anyone named near where you live or where you're moving to? There's quite a few listed on there from what I recall. If you don't see one, just mention where you live and ask someone here for a recommendation. I'm sure others would be willing to help out.

I think that when you have a condition that is not commonly encountered, you just have to become your own personal expert and advocate. I find that if I go into the doctor with a list of things that I think may be going on and another list of possible treatments, it gives us something more to talk about. He may disagree with what is presented, but at least we have a dialog about what may be going on.

Pouchitis seems to wind up being a "catch all" diagnosis that many doctors default to, no matter what the real problem is. Your symptoms could also be caused by cuffitis, anal stricture, fissures, irritable pouch syndrome, an overstretched pouch or dismotility---or a combination of more than one of these.

Without a digital exam, pouch scope, and detailed history, your doctor probably cannot really diagnose this. Bleeding is usually not associated with pouchitis and is most associated with cuffitis and/or fissures. Each diagnosis has a different treatment.

As far as finding a doc who cares, that's the $64 thousand question, isn't it? Plus, moving around doesn't do much for continuity either. But, what can you do? I don't know, perhaps other service folks will help you with dealing with that.

Good luck.

Jan

P.S. I do think it does help to vent to others who at least know what you are complaining about. Misery loves company, right?

I noticed you are in MD. I like my surgeon and live not too far from you here in Richmond VA. His name is Dr. Cary Gentry. He is fairly young, very personable and all the nurses said he was great.

http://www.crspecialists.com/physicians/cary.htm

He is bottom left in the picture. Hang in there!

Hi Maggie,

I just wanted to say VENT AWAY! Sometimes that's what we first need to do to get going again. There is nothing wrong with that and you're right - people here are the ones who will understand. So feel free! I am so sorry for what you are going through.

Secondly, I agree with Jan. It is sad but true - we do have to be our own advocates (and sometimes our own docs!) I think my husband's GI doc hates me but you know what? He gets better treatment because of me and the research I do. This website is a great resource for info as is the Internet in general. Arm yourself with as much info as you can and get your questions together. Too many docs want to keep it simple and dismiss you quickly but you're the one who suffers.

Regarding finding a good doc.... I have been thinking that often (depending on where you live) the surgeons tend to see more pouch-related conditions than the GI docs (like I said, depending on where you live). I mean, how many general-practice GI docs see patients with a pouch, and then of them, how many have pouch complications? 99% of the time these docs are just doing colonoscopies on old dudes checking for polyps or treating old ladies for constipation or business men for heartburn! It is the surgeons who perform these surgeries who at least KNOW a lot about the pouch issues so could either 1) diagnose and treat you, or 2) point you to a good GI doc who is competant in this special area.

We have also just moved and like you, my husband has chronic pouchitis and is frustrated. Some kindly soul on this board pointed out that there is an excellent surgeon here where we live so we will be consulting with him soon and hoping he'll have more for us than the local GI guy. I hope you may be able to do the same. Best of luck to you!

P.S. Love your name - it's our 'first-born' cat's name.

Hi Maggie, sorry you're having such a terrible time. As far as finding a good doctor, there is a thread on the board that lists doctors that some of us have used. You can find the thread on the home page.

Hope things sort out soon,

janna