Help. Could I have Crohn's disease?

[Koog]

Hi. I'm new to the forum and decided to register and reach out to people knowledgeable of IBD. Starting about a year ago, I always feel sick and am extremely fatigued. There is always a burning feeling in my small intestines and they often feel very bloated and the pressure causes a sharp pain in a few spots. No cramping due to peristalsis though. I have a fever that comes and goes; and simply walking for about 5 minutes causes a fever. I've had a CT scan, MRI, colonoscopy, upper endoscopy. Docs don't know what's wrong. My lower abdomen bothers me the most. CT scan appears to show mesenteric edema (swelling) and comb sign of intestinal arcades, but not "misty mesentery" associated with hypertrophy such as with ischemia, etc. The swelling causes displacement and matting of the intestines against my abdominal wall. The area of the swelling feels very firm and pressing on it often helps relieve the pressure/bloating feeling in my intestines. It feels like there's a stricture in my small intestines, but the gastroenterologist says the radiologist would have noted that from the CT scan. However, the GI doc has contradicted himself and said a CT scan it's not a perfect test and that the small intestines are all always moving around...a CT scan only captures a moment in time and a stricture would not necessarily be detected. I've been tested for celiac, TB, and many other things. My white blood cell count is a little high but other results seem to be fine.

That's a basic summary. This is a final desperate attempt to figure out what's wrong with me. I've been sick for a little over a year and can't do this anymore. I'm done.

 

[irishgal]

Kind of sounds like an infection to me. The fever screams infection. Not even necessarily IBD, but have you been checked for all of the common GI pathogens? E. coli, C Diff, etc. I was thinking intestinal TB as I read, but then I see you've been tested for that. Are you in the US or have you travelled anywhere in the third world where infections are more common? Maybe go to an infectious disease doc rather than a GI. I feel like they're more open minded.

 

[ronroush7]

I hope you get answers soon . Go to the infectious doctor.

 

[Koog]

I haven't been asked to give a stool sample so I don't think I've been tested for G.I. pathogens. I don't have diarrhea associated with many G.I. pathogens so maybe that's why? I agree with your impression of G.I. doctors. My G.I. has been somewhat dismissive and said that maybe it's just stress or in my head. I doubted myself for a while and didn't go back until my parents visited and saw that i'm vomiting, have a fever that comes and goes, and have lost a lot of weight. I think I will see an infectious disease doctor next. Thanks for the suggestion.

 

[irishgal]

I haven't been asked to give a stool sample so I don't think I've been tested for G.I. pathogens. I don't have diarrhea associated with many G.I. pathogens so maybe that's why? I agree with your impression of G.I. doctors. My G.I. has been somewhat dismissive and said that maybe it's just stress or in my head. I doubted myself for a while and didn't go back until my parents visited and saw that i'm vomiting, have a fever that comes and goes, and have lost a lot of weight. I think I will see an infectious disease doctor next. Thanks for the suggestion.

Yes, probably best to get away from whatever doc told you it was all in your head. This is a common complaint I've heard from GI patients. Because the disease doesn't fit into the standard pattern (ex: no diarrhea) it's easier to tell the patient the issue is psycosomatic than to investigate further. Crohn's presents in very different ways, so a diagnosis is hard to nail down, sometimes taking years (5 years in my case.) And the fever is what makes me think infection, but I'm not a doc. Also, vomiting is not normal, so trust your instinct that there's something wrong. They told my parents when I was a teen that I had an eating disorder, since that was easier than actually figuring out that I had Crohn's. It made things worse, since I didn't get the care I needed and the docs looked at me as if I had a mental issue rather than a physical one. Luckily my parents didn't believe them (since I ate a ton and everything just came through!) and kept on the docs. And I had a classic case, so I can imagine how hard it would be for those who don't present in the typical way.

Also, keep in mind that some researchers think that Crohn's is triggered by a pathogen, so both the infectious and Crohn's theories could be correct. If you narrow down all of the standard pathogens through an infectious disease doc and still don't come up with anything, you may want to consider sending your blood to Otakaro pathways in New Zealand for the Crohn's pathogen testing. Message me if you need help, and I'll give you all the info. I'd start with standard testing first though, since you may have a common intestinal infection. Best of luck! Hope you find answers, and don't doubt yourself. You know your body best.