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hannahleigh89 posted:
So I went to the doctor today for my follow up appointment after my colonoscopy last Monday. Unfortunately, he still has no idea what's going on with me. He said that the local lab said the biopsies showed inflammation in my ilium that he didn't see, and that they said it was Crohn's, but the stuff they described sounded more characteristic of UC to him. He didn't like their findings so he sent the biopsies off to a bigger lab that deals with more GI issues in Memphis, and he hasn't gotten the findings back from them yet. He said right now, he's changing my diagnosis to IBD until he can figure out what's going on, but if he had to narrow it down, for now he'd call it UC. He still says that he doesn't think I have both because of how rare it is. He said that the pain I have is more on the level of Crohn's Disease but my colon shows UC, so he said maybe I have IBS on top of it. Although he said before that he didn't think you had IBS and IBD at the same time. So it seems like things keep getting more ridiculous so he's going with the diagnosis that was previously too ridiculous but is now seeming more likely.

So for treatment for now, since I am doing slightly better, I'm supposed to continue the Cimzia for the Crohn's (not approved to treat UC) and I'm supposed to continue the Entocort for the inflammation in my colon (that he's calling UC.) I just don't get why he's treating both if he refuses to believe that I have both at this point... I'm supposed to go back May 5th because he said he'll have the results from Memphis back. I also had to take in stool samples today but I think they're just doing a regular culture and testing those for C Diff, I'm not sure. He's also going to request the records from the hospital in St. Louis that diagnosed me. I was seeing a different GI there, but she moved so I switched to this one. He said he has their findings from my previous colonoscopies but he hasn't actually seen the pictures for himself. I asked why I had inflammation in my small intestine in a few other previous scopes if it was just UC, and apparently he's thinking I didn't now since he wants to see them for himself... I just don't believe that it's only UC. Because I was diagnosed with UC, treated for it, it didn't work, had more scopes done, they found my small intestine was in really bad shape and then I got my diagnosis of Crohn's Disease and started the Remicade.

I just don't know what to do. And I'm getting tired of being jerked around with this. He brought up surgery again today but he terrified me, so now I'm even more against it than I was before. He was trying to make me more comfortable with the idea by telling me how much better it was now than it was previously... And then he told me that apparently the surgery has a history of causing infertility and the inability to climax in young women. He was explaining that it's much more rare now than it was previously, but I had no idea it really did that. So now I'm definitely not having it. I want babies and orgasms.

Anyway, that's how my day was. Any comments?
LATH_Aches responded:
I know what you mean about being jerked around. For the last 5 years I've been bouncing around with my general practioner, multiple opthamologists for my iritis, gastroenterologist for the UC, and now rheumatologist for my aches/stiffness. Sometimes I feel like its follow the bouncing patient...boing, boing, boing.

Oh well...we do what we gotta do.
mindyj1971 responded:
Oh, I'm so frustrated for you! I certainly hope that this doctor gets things straight by the time you go back in to see him. My understanding was that ibs was only a diagnosis used when there was no other diagnosis. You apparently have too many diagnoses, so for him to throw in the ibs thing is just insulting! Does he think that you do not know the difference between the 2 conditions? They are very different, as all of us know. And just because having UC and Crohn's is very rare doesn't mean that you aren't that rare person who does have it. You already know that you have symptoms of both; I don't know why he is being so closed minded about that! That is so irritating! I will keep my fingers crossed for you, Hannah! I hope that you get some kind of answer very soon! Please keep us posted.

Take care-Mindy
hannahleigh89 replied to mindyj1971's response:
Thanks Mindy.
AzJohnny responded:
Wow Hannah, that GI is sounding less and less competent. I've heard of a few cases of Crohn's Colitis so he certainly should have heard of it. I sure hope he gets his act together, it would be the pits if you had to start looking for another GI again. At least you're feeling better than you were for a few weeks.

Hang in there kiddo, we're all pulling for you.
hannahleigh89 replied to AzJohnny's response:
He really is a good doctor, I don't know why he's having such trouble with this. We do live in a small area so I know he hasn't seen the amount of cases that other doctors in more populated areas have seen, so maybe... I don't know.
Louise_WebMD_Staff responded:
Ugh. One of the members of my diabetes exchange has a doctor he calls Dr Flip Flop. This sounds like his brother!

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