Fighting for a diagnosis - has anyone else experienced this??

[eleanor_rigby]

Hi all, here is my background:

Age: 26
Female
Father dx with ulcerative colitis managed well with asacol

Since as long as I can remember I have suffered with joint aches and joint cracking but no inflammation

Since age: 17 I started suffering from intense stomach cramps/spasms. They would come on every couple of months and last all day every day for sometimes weeks. I was generally ignored by GPs.

Age: 22. Developed what felt like a urine infection. Overnight developed horrific fever and right side pain. I was admitted to A&E with suspected appendicitis. CT scan revealed a 'mass'. Colonoscopy showed inflammation and ulcers and bowel perforation from suspected ulcer in terminal ileum. I had open surgery and a bowel resection and was diagnosed with Crohn's disease. After I recovered from my op I went to see my GI expecting to be prescribed medication and was told the pathology report from examining the bowel they removed in surgery stated "no evidence of crohns and it actually looked like a burst appendix". I was told to watch and wait and see.

NOW age 26. I had wonderful 3-4 years of being symptom free and then... The bowel spasms are back. Immediately I went to see my GI. I had tests done. Blood tests showed a mildly positive result for celiacs disease (7). Fecal calproctin was 65. I had an endoscopy which showed a stomach ulcer and mild inflammation of the small intestine. I had a negative test for helicobractor plyroi. 3 months later I had a repeated endoscopy and colonoscopy. The stomach ulcer had gone and small bowel was normal. Colonoscopy showed inflammation and an ulcer in the terminal ileum.

My GI therefore said it must be crohns. Well pathology have looked at the biopsies of my colonoscopy and they say it does not look like crohns. WHAT THE HELL??!!!!! What is going on? Do I have some rare blood disease, cancer or TB?! Or is this crohns and pathology can just never see it????

 

[ronroush7]

Welcome. I have Crohn's. You mentioned spasms. I was led to believe that that could mean IBS. Yoiu might want to ask your doctor about that.

 

[ronroush7]

Let us know how you are.

 

[my little penguin]

In order for pathology to check the crohns box on the report they need to find certain things
Including noncaseating granulomas .which are only found 30% of the time.
More than a few folks were dx with. Crohns by Gi
But not by pathology report due to lack of granulomas

 

[HorseAngel]

Honestly I'm seeing inflammation of your small bowel from two different reports you listed so I'm thinking you need a second opinion. I mean from a new pathologist and possibly a new GI as well. Getting a diagnosis can be a nightmare with the patient getting sicker as they look for the answer to bonk them in the head. Ulcers in you guts plus inflammation in your small bowel is enough for most drs. I've had some really bad pathologists before and part of the problem is they only see the samples not the history of the patient. Crohns isn't just in your guys it's uveitis it's joint pain high WBC counts high sed rates and erythema nodusum etc. My point is the pathologist isn't going to look at fissures or you in your entirety only your specific sample not the coexisting issues that may go with it. My best friend had her small bowel resection done for crohns and the pathologist that examined it after surgery said no crohns. It is ridiculous as she has crohns that had been diagnosed and treated for years. I'm sorry you're stuck in what seems like a very frustrating situation. Please consider a second opinion from both GI and pathologist.