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Crohn's Disease
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Posted 9/15/2014 3:50 PM (GMT 0)
Hello forum members. :) I've been on the hunt online for an active form about Crohn's and been having the worst time trying to find support, I'm hoping maybe this could be a place that could help.

I'm a 40 yo female who has suffered from abdominal pain on and off for 20 years, that for the most part I've been told I just need to learn to deal with. The pain is predominantly in the lower right quadrant, but everyone automatically assumes it's appendix pain because of the location. I still have my appendix and it's never been a problem.

Recently, the pain has been getting worse and worse, and my doctors are giving me the runaround. An emergency room visit a few months ago showed a small ovarian cyst that got labeled "normal" and I was put on birth control pills to prevent future cysts. A colonoscopy last year came back normal. A CT scan done on Friday compared to the one a few months ago showed "possible IBD" or "possible terminal ileitus", and I was given Cipro, Flagyl and Percocet (I was told this is a common combination for Crohn's patients?).

I have to call my doctor this afternoon as a follow-up to Friday's emergency room visit. I'm just tired of the horrible pain and the constant bathroom trips. If the CT scan is showing inflammation, why can't I get a diagnosis? Any support would be greatly appreciated - I'm having a really hard time and have no one to talk to about this. Thanks everyone.
Posted 9/15/2014 5:11 PM (GMT 0)
Hi and welcome,

I hope you do find this site helpful in your quest for an answer to your symptoms whether it turns out to be Crohn's or something else. I've had gynecological disease on top of the Crohn's and know it's frustrating to figure out what's doing what. Endometriosis can cause similar symptoms, which was one of my problems back in the day, and I had ovarian cysts that got the blame too until I had a complete hysterectomy and they weren't there to blame any longer. That being said, they can be extremely painful.

Have you had a colonoscopy yet? Even with that, Crohn's can still be hard to diagnose. There are posters here who haven't gotten a definitive diagnosis either. If you haven't had a scope yet, that's going to be the place to start.
Posted 9/15/2014 9:29 PM (GMT 0)
I had a colonoscopy last year and it turned up nothing. I don't know if they're going to suggest another one.
Posted 9/15/2014 10:43 PM (GMT 0)
I would ask for a pill cam. It can show things in the small intestine that can't be reached with a colonoscopy. And welcome to HW! This is the BEST forum I have ever been to. People are great, it's moderated well (sometimes we can be a bit hot-headed, lol), and there is plenty of information here.
Posted 9/15/2014 10:44 PM (GMT 0)
Also, antibiotics will make it worse for some people. They always cause me to flare. And are you taking a probiotic? Make sure you take one. I like Florastor, but VSL 3 is pretty good too. Otherwise with that amount of antibiotics you're taking, you could get c. diff. really quickly.
Posted 9/16/2014 2:17 AM (GMT 0)
If your Crohn's is located in your ileum and/or small intestine, they often can't see it or get to it with a colonoscopy. A pill cam is a good idea. You can also ask for other lab markers that will help confirm a diagnosis such as a fecal calprotectin yes which looks for inflammation in your stool or the Serology 7 IBD lab test that can also be predictive of IBD. The difficulty is that without a positive biopsy it is hard to give an absolute diagnosis, and they often can't reach your ileum with a biopsy. Try to make sure to see a GI that has expertise in treating Crohn's disease. And welcome to HW!
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