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A great pair of genes....

Hello everyone!

I'm 27 and have been dealing with undiagnosed Crohn's Disease for probably 10 years now.

After going to the emergency room twice in a span of a couple montwanna few years ago and having them stuff me full of maalox with lidocaine & send me home still with crippling pain, I decided it would be a waste of time to ever go back to the ER for stomach pain. I saw a GP, who referred me to a GI. I had a pan-endoscopy and he found that my ilium was inflamed. He said he didn't want to call it Crohn's but would treat me as if it was. He put me on Pentasa (8 pills a day!!!) and it seemed to help. But being a broke college student, I stopped taking it when my insurance stopped covering it. about 2.5 years have passed since then and I did alright for the most part with occasional flare ups (a few being semi-bad). Then, this May (2012) I had a particularly horrendous flare up at a friend's BBQ. I decided I needed to see the GI again. I just did a couple weeks ago. I had an ultrasound to rule out the gall bladder (gallbladder is just fine). He put me on 10 days of Entocort and said if it didn't help, he would go a different direction, but if it did, then it meant it was probably Crohn's or at least something like it.

Well it DID help! Immensely! For the first time in 10 years, I had no diarrhea! For a week! No abdominal pain! I told him this & he wrote me a scrip for 3 months of Entocort. MAN it is expensive! I find that sickening, especially since my insurance covers MOST of it! I start it tomorrow. And good timing too considering I am missing an awesome rock climbing trip with my hubby & friends this weekend because I'm in so much pain at the moment!

Still no diagnosis, so I'm not really sure what to think seeing how the doctor is treating me for it without officially stating so!

Anyway, I'm looking forward to frequenting these forums! Sorry for the long rant!
 
Last edited:

David

Co-Founder
Location
Naples, Florida
Hi marichino and welcome :) I'm really pleased to hear that the entocort is doing you well, but yes, it's super expensive :( If you would like to connect with others on it, we have a subforum where people discuss entocort (as well as other steroids).

With all that said, you need a specific diagnosis. It's quite important in my opinion. If your doctor isn't willing to do the tests necessary then my suggestion would be to find one who will.

Again, welcome to the community :)
 
Thanks David!

Yes, I agree. I would really like to have some definitive answers. When they did the scope, they took some biopsies, which didn't show any granulomas (which I know are not always present). He keeps "suggesting" Crohn's, I'm just not sure why he's not diagnosing it. (other than the fact that he said IBDs are very difficult to diagnose since they are not black & white for everyone). I'm hoping to get some confirmation of what it is or is not when I see him again after the entocort. :ybatty:
 
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