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Hi there. I'm so overwhelmed trying to find a doctor that is familiar with J pouches. I am so tired of having to explain my anatomy to medical professionals. Right now I'm experiencing a mysterious problem involving pain in my rectum and transient periods of losing control of my bowels while I sleep. I feel like I've been kicked in the tailbone. No bleeding. Weird lump in my woman area. Gyno and GI keep passing me back and forth like a ping pong ball. I had an MRI but nobody seems willing to give me straight information on the results. I think it's because nobody knows what to do with me, and they keep trying to send me back to my surgeon in Pittsburgh which is a 7 hour drive away. I think it's unfair that I have to do that, especially since UPMC stopped taking Blue Cross Blue Shield. (Yeah, that doesn't make any sense, but that's what they told me.) What, am I supposed to move to the city next door to the place where I had my surgery and live there for the rest of my life???


I live in Delaware. So, that means I am within driving distance of Johns Hopkins and University of Pennsylvania. It seems absolutely possible that I should be able to find someone at either of those two centers who can help me. I tried their search feature but there are so many centers and doctors that I have no clue who to pick. I tried to make an appointment with a J pouch surgeon at Johns Hopkins but they said she won't see patients who have already had surgery and that I needed to go to a gastroenterologist. I didn't know which gastro docs knew about J pouches and after being on hold for an hour just for ONE doctor I felt like cold searching without a personal recommendation would just take far too long.


I'm in pain and I need help. I know something is wrong and I don't want to keep being told it's nothing. It's not nothing! I'm not fine! I think my doctors here just don't know what the hell to do with me so they are scrambling.


Please please someone recommend me a doctor. I actually need a gynecologist and a gastroenterologist and a psychiatrist. But i'd settle for a gastro recommendation to start.

Last edited by Rebel Sue
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Sue, I live in New Jersey.  My son had his surgery at Robert Wood Johnson University Hospital.  We use doctors with the medical school only.  There are several good doctors there.  I'm not sure how experienced in J-Pouch issues they are, depending on your problems.  The reason I say that is because they are sending us to Cleveland Clinic because my son has an unusual issue with his J-pouch and my surgeon has never encounter that problem.  Our surgeon has done over 200 pouches and has had very few complications.  Hence the issue for us.  I also have a wonderful GYN with 30 years experience and saved my life when he was a young doc.  You can private message me and I'll give you some names.  Also, we saw someone at Fox Chase Cancer Center in Phila. For a second opinion.  My aunt recommended him and he was extremely helpful and knowledgeable.  I'd be happy to give you his name as well.



Thanks so much to both of you for your replies. I will be looking into the Penn doctors because that's a reasonable driving distance from me. I considered Johns Hopkins but it involves going over the Bay Bridge...while I'm sure I could do it while feeling well, not so sure about when I'm sick. Yikes. That is one scary bridge.


Anyway, I went to the ER this morning because I was so tired of not having any relief or clear diagnosis of what was going on despite an MRI and a CT scan. The ER doctor gave me an actual old school physical exam and determined that I had a small abscess and pouchitis. The abscess is not connected to my pouch but both are being treated with flagyl and cipro. The Xifaxin that my GI physician had given me was totally doing NOTHING and my regular doctor was like 'You're fine." :::facepalm::: I actually have started to feel better already today with the new abx.


Christiana Care in Newark, DE sucks. I'll be cancelling all followups with them and moving on to UPenn. 

Sue, I think PA is a good idea.  There is no way in hell you could get me over the Bat Bridge!  I can't even get over the Delaware Memorial!  If for some reason you can't find what you need or need a second opinion. New Brunswick is only an hour from Phila.  Also the guy at Fox Chase I mentioned is excellent.  He was our second choice from our son.  


Good luck!  Glad you are feeling a little bit better.



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