I saw the gastro doctor today. I was all up in arms ready to tell them off and demand an answer, but when they came in, they were very pleasant. Actually, it was one doctor. Then she went and got "the attending". She was a small Indian woman and he was a big, Caucasian guy. They said basically that my intestine is getting partially blocked by inflamation from the OUTSIDE due to scar tissue; that its open inside. There is no treatment for it and it is getting progressively worse. I need to ALWAYS go to the ER when this happens (unlike my mom not taking me the last two times!) because although the symptoms would be worse (!!) should a complete blockage happen, I can't really know and this can cause intestine to die pretty quickly, necessitating emergency surgery. (Just exactly what happened when I was a newborn, hence why I have all these problems to begin with.) He said in 20 years he's seen several people with my symptoms, though all of them had no physical reasons for their symptoms, unlike me. He said I could electively have surgery to remove the scar tissue that is in there already, but this only has a 20% chance of long-term success- the rest either rescar to what they were before or probably worse. I kind of jokingly said "Well could you put some vaseline in there to keep the intestines from sticking back and forming scar tissue?" He said "They tried that 10 or 15 years ago and it doesn't work." He did give me the name of doctor at another hospital that he thinks is very good to do the surgery, but its my choice about having it. Now, should the above emergency situation ever arrise, then they'd have to go in and then they get rid of the scar tissue at the same time. I have a hydrogen breath test still (in about 3 weeks) because I missed it before when I was sick. Once the results of this come back, they are going to start me on 2 weeks of antibiotics to try to get rid of any infection that might be causing this. The narrowing that happens when these flarups occur is like what happens during an asthma attack. I asked her if that's what its like and she said "Yes- good analogy!" Mainly, the only thing I can do now is go to the ER next time this happens. They were supposed to give me some papers to take with me if I ever need to go to an "outside hospital", but I am pretty sure they put a note to this effect in my file on the computer system today; They will give me an IV for rehydration, a nasal tube into my stomach, some phenegren for nausea and vommiting (I thow up dozens of times during one of these episodes), and morphine for the horrible pain. This way I won't have to throw up or be in pain. I told them about my stomach be distended when this happens and he said that's consistent with everything else and that I should ALWAYS go to the ER, as I said above. Just shows how lazy and IMO selfish my mother is when I feel this way. She said "no. Stay home" last time. All I can do in situations like these is call an ambulance as I am barely able to walk, nevermind drive.
So when I left, I was all upset. I sat outside on the steps of the hill between the hospital and the lower parking lot near where the emergency life copters "park" and cried. Its a GORGEOUS Fall day out today complete with cool air and blue skies and sunshine. It just hit me on the way out of the hospital that I very well could die because of this and that my options are severely limited in treatment and there is no cure. Christopher called, as I'd IMed him minutes before and we talked for maybe 15 minutes. I would never tell him this, but, he told me that I am not the illness - I am love and I am perfect and whole. That is something I try to believe, but I just wanted to say "Yeah. You told that bird that too, and she died!" (He found an injured pidgon a few weeks back and was talking to it and petting it and trying to calm it down so it could heal; however, when we came back it was dead. He said he thought it got cold and lonely. I dunno.) We talked some after that once I got home, too. Oh- and to make matters worse, when I got to my car, I had a ticket for parking "this far" on the other side of a no parking sign.
I also have a raging yeast infection (as of yesterday) so I'm on diflucan again. Otherwise, I got Nataleigh's bday present- a Barbie Pediatrician complete with office furniture and instruments.
I think she'll like it. I couldn't decide between that, the vet one, and the horse stable one. However, the horse stable one was out because it didn't come with the horse- that made the price double. So now all the kids are getting bday presents from me on their bdays.