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.