Belle to followup my early post, at this point given the symptoms minimal response to basic meds and the pain levels coupled with the Accutane usage, I would certainly try to get into one of the larger groups like Mount Sinai
Phone number 212-241-0150
http://www.mssm.edu/departments-and-ins ... enterology
While I am certainly no doctor, I would consider myself a well informed patient. I'm not sure if you have had any of these test done and if you have not I would be suspicious at the thoroughness of your doctor
-The first one is a simple blood test which is covered by pretty much all insurances, it's called the "IBD sgi Diagnostic Panel" from Prometheus labs
http://www.prometheuspatients.com/Produ ... p#Serology
While not perfect it does have a fairly high accuracy rate of detecting IBDs like Crohns and several other IBDs.
-The next test would be barium swallow with a small bowel follow through. This is a test that after you swallow a drink that helps highlight any abnormalities in your small intestine and can be seen on a simple X-ray. This test generally will only see significant changes in the bowels like a constriction or fistula that are common in Crohns disease.
-The really cool one (as I am a techy nerd type) is the pill camera that is like a big vitamin pill that you easily swallow and a belt you wear for about 8 hours records the images the pill camera sends out. This generally is more usefull than the small bowel follow through as it gives thousands of images in a movie like format for the doctor to look at and any even mild to moderate inflammation or sores in the small bowel can easily be seen. This is necessary as there is no way for an endoscope to work its way through all 25+ feet of the small bowel.
-Have you had an upper endoscopy often called and EGD? This is like a colonoscopy except the tube, while you are asleep, goes down the throat to be able to see your stomach, duodenum and sometimes the first part of the jejunum, which is the first main part of the small intestine. More importantly the doctor can take small biopsies which are the gold standard in diagnosing these conditions.
These 4 tests are very common when the doctor suspects Crohns or other IBDs. Overall they are pretty easy, easier than the colonoscopy. Why this is important is that about 50% of the time IBDs present in the small intestine, which the colonoscopy cannot reach or diagnose.
Belle I hope these symptoms settle down soon and that you and your doctor can figure this out soon. While many conditions are painful and affect our lives greatly, conditions like Crohns also can cause permanent damage, which is why dealing with it earlier rather than later is important.
In my case I went for many years without a diagnosis after the symptoms first presented due to a doctor that did not listen. This resulted in me having to have surgery to have a segment of my small inrestine removed as it was too damaged to heal. The good news is I felt a lot better afterwards. Your fairly early in this and I doubt your at the point of damage like I was, I'm just trying to give you the information I wish I had so you can make the right decisions.
I know this is a lot of information, the main goal is I believe to get to a better group of doctors. Certainly as mentioned keep up with the diet that has been mentioned here as I am sure that the diet is at times more important than meds, they go hand in hand in helping you maintain your health; it's not one or the other, it's both.
As far as endometriosis, I would imagine talking with your gynecologist would be the best bet.
Take care Belle, I hope you can get into a good group of doctors, it is quite helpful and that you are feeling better soon
