Crohn's Disease Forum » Support Forum » Undiagnosed Club » Don't know what i have


10-29-2013, 04:59 PM   #1
eleanor_rigby
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Don't know what i have

Hi. I am 24 year old female. I have always had stomach cramps during periods of stress but no other issues regarding my digestive system. I have also always had aching cracking joints. Then 2 years ago I was experiencing horrific pains on my right side and cramps one morning. I went to hospital and was discharged. I continued to go in and out of hospital for the following few weeks. After being given multiple different diagnoses (urine infection, appendicitis, crohn's) I had a colonoscopy. This showed I had a perforated bowel and lots of inflammation and general mess. They diagnosed me with crohns and operated on me. I had a small bowel resection and had all the mess cleared up and have recovered since with no problems.

Here's the confusing part. So the surgeons sent the part of my bowel which they removed to pathology for examination. Pathology send it back saying there is no evidence of Crohn's and in fact I had acute appendicitis which mimicked crohns. They said my appendix burst and blew a hole in my bowel and all the poison caused all the crap in my bowel, ulcers and an abscess. So now doctors are confused. So two years post-surgery I have done two fecal occult blood tests. Both have come back 100% negative. I have to have another one this week and see my gaestroenterologist next month.

Today I got a stomach cramp for the first time in 2 years. I'm feeling paranoid right now and don't know what to believe.
10-29-2013, 05:16 PM   #2
Cat-a-Tonic
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Hi, welcome to the forum! Wow, what a confusing situation, I can understand why you're feeling paranoid! If it were me, I'd ask for a copy of the pathologist's notes to see exactly what he said. I believe they're also legally supposed to hold on to medical specimens for a certain amount of time, so if they still have your pieces of bowel, perhaps you could request that another pathologist look at it and give you a second opinion.

For now, I would recommend that you keep a food diary and track everything you're eating and what symptoms you're having. If it's just cramping, perhaps it's related to something you're eating - a food & symptom diary can let you see patterns over time that you might not notice otherwise (that's how I figured out that garlic is a trigger food for me). If the symptoms are not related to what you're eating, at least you can show that to your doctors so that they can pursue other avenues.

Another step would be to have some bloodwork done, and maybe other stool tests as well. Stool samples can check for (and rule out) things like bacterial infections and parasites. Bloodwork can check your inflammatory markers (CRP and ESR), and can also look at your vitamin levels - things like vitamin D, B12, iron and folate are often low in people who have Crohn's.
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