Crohn's Disease Forum » Support Forum » Well, I haven't posted in a really long time...

09-06-2008, 08:37 PM   #1
mrs. vr
Well, I haven't posted in a really long time...

Hello everyone. Back at the end of last year, beginning of this one, I posted that after years of extra intestinal symptoms my rheumatologist was positive I had Crohn's (I have the ASCA antibody), and was sending me for all the scoping tests (colonoscopy, endoscopy, pill cam swallow, etc). ALL those tests basically came back perfectly normal! It shocked me, (and my rheum)but I thought, well, ok, let's just get rid of these joint pains, etc, and I'll deal with it.

My rheum. kept telling me that he thought that the tests were just a snapshot of how things looked THAT DAY, and he was convinced that something would eventually declare itself. In the meantime, he put me on pain meds for the joints. Since then, all my symptoms have gotten worse, including the intestinal ones (tonight I vowed I was never eating solid food again), and really, the ONLY relief I've had have been from two short bursts of prednisone. Because I don't have a confirmed dx the rheum doesn't want to put me on them long term, which I agree with, but nothing else is helping.

During this time, my hair started falling out. The rheum sent me to a dermatologist who yanked out a freaking handful of my hair and said "oh, yeah, that's not supposed to happen" (no kidding, put that back, you jerk!), and dx'd me with telogen effluvium, saying that once they figured out what my underlying problem was it would quit falling out.

Yesterday I went for a second GI opinion. I saw a doctor that my rheum works closely with and he (the rheum) told me they have worked together and solved other "medical mysteries" like mine before.

After talking to me and examining me, he agreed that EVERYTHING points very strongly to IBD, specifically Crohn's, except for the internal exams!

He is sending me for the IBD 7 serology, which my insurance probably wont pay for (ugh) and an abdominal ultrasound to look at my gall bladder and liver.

I have to tell you, I almost burst into tears at one point. I told him that this rheum was only the second doctor over the course of years now who even halfway took me seriously, and didnt just tell me it was all nothing. He looked me right in the eye and said "oh no, this is REAL". I can't even begin to describe how that felt.

Another thing I found interesting, he asked me some questions I don't remember anyone else asking before, such as "Do you ever wake up in the middle of the night with cramps and have to use the bathroom?" (Um, yeah, only about once a month or so for years, I just thought it was something I ate) and, "have you had any unexplained weight GAIN?" (I really could have kissed him. I have gained so much weight, and I don't know WHY! I eat like a freaking bird, I swear I lose more than what I eat in the bathroom, I exercise frequently, etc). Up until now, docs had been saying "oh, you just need to eat less, calories in, calories out you know" like I didn't already know that! Grrrr. I didn't know you could have IBD and GAIN weight.

Since I last posted, my husband has had some work uncertainties, and my mother was diagnosed with Ovarian cancer and has begun chemotherapy (my parents live with us in an inlaw apartment), so to say I've been stressed is an understatement. I am positive that isn't helping with how I feel. I also homeschool our three kids, and there have been days that I am just so darn tired I feel like I got hit by a truck. I hate it.

Anyway, sorry this is so long. I guess I got a little depressed after all the testing and didn't know what to say. I don't and never have WISHED to have Crohn's, but at this point, I just want them to find SOMETHING AND FIX IT.

We have our oldest son's Bar Mitzvah coming up in January. I don't want to be fat bald and smelly for that!

Thanks for reading.

edited to add a PS- I also had my annual exam yesterday, and for the first time in my entire life, my blood pressure was elevated. I THINK it's probably medicine related, but yay, one more thing to worry about.

Last edited by mrs. vr; 09-06-2008 at 08:50 PM.

Crohn's Disease Forum » Support Forum » Well, I haven't posted in a really long time...
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