Thursday, May 14, 2009

Two Steps Forward

I'm back from the New Doc!! It went exactly the way I hoped it would. She was awesome. She spoke very highly of my current doc, but completely understood where I was coming from with diet issues. She said there's no doubt in her mind that I'm dairy intolerant, and she said even if my Celiac test comes back negative, I'm probably gluten intolerant too anyway. She ordered a Celiac gene test so that should tell me for sure. But regardless, the message of today was, you should probably just avoid gluten anyway. Celiac or not. I'm going in for breath tests to see if I'm in fact lactose intolerant and also to see if I'm fructose intolerant. I didn't even know there was such a thing but I won't be surprised if it's positive. How many times have I said that sugar is not my friend? Basically, when talking about what I should and should not eat, she outlined the Specific Carb Diet, without actually referencing it, which is something I'd mentioned a bunch of times here too. That doesn't mean I'm going to dive head first into the SCD, that's totally grain free, but what I'm doing is pretty close.

She also showed me again my colonoscopy results and gave me more details. There is definitely narrowing of the terminal ileum, and significant ulceration, as well as a fistula. She stressed again, just as The Doc has, that my Crohn's is in the moderate to severe category and that I must stay on my medication. Fine with me! And also mentioned Remicade if things get any worse. I hoped I'd never hear that name, and I really hope it will never get that far. I think if I do what I'm supposed to do and keep my diet strict, I will be ok. She said I've probably had Crohn's all my life and it's very unfortunate that the doctor's didn't listen sooner. But I didn't complain enough either, anyway it doesn't matter, it's getting taken care of now!

So I feel a lot better. She's keeping The Doc in the loop with the tests that she ordered, and she said I can take some time and decide if I want to stick with him or switch to her. It's completely up to me. The thought was that maybe once The Doc saw how serious I was about counting diet as a part of my treatment plan, he might change his strategy, and I could also start seeing a nutritionist. I'm going to think about it. I don't have another appointment until July. First and foremost I want to see my test results. Imagine if I'm fructose intolerant too???? Oy.

Ok, it's time for my long weekend!!!!!

4 comments:

Diana said...

I'm so happy your appointment went well! Enjoy your long weekend!

Allie said...

Hey! Sounds like a success -- I think you should stick with the new doc - just seems like she is more supportive and willing to take you through everything and much less dismissive.

sallybranwyn said...

Uhoh, what's wrong with Remicade? That's what they want to put me on (per the results of this Tuesday's test)

Liz said...

YAY!!! A doctor that believes in gluten intolerance. She sounds like a great doc and I'm glad it went well with you. Keep us updated on the results!

(I didn't know fructose intolerance existed either)