Hello to all who are reading this now. I'm 23 years old, female, and have suffered from gastrointestinal distress for a couple of years now in a different way than usual (was a lactose intolerant kid and allergic to peanuts but this was nothing like anything I'd ever felt before.) So I booked an appointment with a gastroenterologist back in November (2014). My doctor ordered a full battery of tests (breath testing, upper endoscopy, colonoscopy), the breath testing which found fructose malabsorption, lactose intolerance, and bacterial overgrowth in the small intestine, the upper endoscopy found some generalized inflammation in the lower third of my esophagus and entire stomach lining, and the colonoscopy yielded a normal looking colon, but showed marked areas of inflammation and ulceration (though not too advanced yet) in the terminal ileum that the doctor suspected was Crohn's disease. So he scheduled a capsule endoscopy and a Prometheus blood exam (tests for Crohn's genetic markers and acts as a prognosticator, which I have heard is not all that accurate). I did a little research, and the ileal inflammation, my European Jewish heritage, and all my symptoms, it made perfect sense to me. The capsule test yielded no other abnormalities in the small intestine. I expected to have all of my results ready yesterday but he did not have my blood test results or any of my previous test results (granted there was a minor computer issue), and decided that since the capsule was normal that he didn't need to do anything, he told me to just keep doing what I was doing (restricting my diet and taking supplements that never work or just upset my stomach worse) and to come back in three months. This seems completely ridiculous to me. Nothing is going to get any better during that time. I'm worried I may have to find a new doctor, one who will take me seriously and not leave me on this diagnostic cliffhanger. Any and all constructive advice is welcome and appreciated. It's been an extremely stressful time.
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Suspected Crohn's : Diagnostic Lag and Bad Doctors
- Thread starter gadgetninjette91
- Start date
Your story is very similar to mine, minus a couple of factors. My EGD came back normal, as did the colon, but I also have ulcers and non-chronic inflammation in the ileum. Just did the capsule today, but I'm worried that the quality of the prep may not be very good as this round was not nearly as productive as the colonoscopy prep. Anyway, I wish you luck with your doctor. Perhaps you can convince him to trial and error with a couple of drugs to see if anything helps. I'm due for a breath test next month, but now I'm wondering whether or not I should ask about the Prometheus as my GI has not mentioned it at all. Keep us updated.
Hi Gadget, welcome to the forum. This is a great resource and a fantastic community. I've learned so much here.
They must have done biopsies during your scope work, what were the pathology reports there? They're usually pretty descriptive of the findings and usually give you the best indication of what's going on.
When your blood tests come back look at your HCT, ESR and CRP levels. These are used to get a sense of the inflammatory activity in your body and are typically used for scoring Crohn's activity.
Capsule endoscopy in and of itself is really not a good diagnostic tool. It's great that it showed no visual ulcers or damage in your small intestine, but it can't tell you anything about inflammation in the intestinal walls.
Everything I've learned about Crohn's is you want to interdict to try to get the inflammation under control, because the chronic inflammation may lead to permanent tissue damage and result in complications.
The current paradigm seems to be to catch the disease early, treat it aggressively, and change its natural history.
They must have done biopsies during your scope work, what were the pathology reports there? They're usually pretty descriptive of the findings and usually give you the best indication of what's going on.
When your blood tests come back look at your HCT, ESR and CRP levels. These are used to get a sense of the inflammatory activity in your body and are typically used for scoring Crohn's activity.
Capsule endoscopy in and of itself is really not a good diagnostic tool. It's great that it showed no visual ulcers or damage in your small intestine, but it can't tell you anything about inflammation in the intestinal walls.
Everything I've learned about Crohn's is you want to interdict to try to get the inflammation under control, because the chronic inflammation may lead to permanent tissue damage and result in complications.
The current paradigm seems to be to catch the disease early, treat it aggressively, and change its natural history.
I know they took biopsies during the colonoscopy but wasn't given specific details about it. All it said was suspected Crohn's. I know my doctor's office did a complete overhaul of their computer systems recently so I wonder if my records got mixed up as a result but I have hard copies of most of it. I'm getting ready to find another doctor though because I feel like I'm not being taken seriously.