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Crohn's Disease Forum » Your Story » Help me undiagnosed!


05-15-2014, 02:37 PM   #1
Cgreen
 
Join Date: Apr 2014
Help me undiagnosed!

After years of stomach issues - diarrhoea, abdominal pain etc I had been told I had IBS. I got used to the symptoms and accepted that this must be what I have. In March of this year I became very poorly and after 3 weeks went to the doctors who sent me straight to a&e. I was experiencing extremely bad night sweats to the point where I would sweat through several towels and sets of pyjamas and was very dehydrated. I was going to the toilet for loose bowel movements around 10 times a day with pretty bad stomach pain. I also had itchy eyes, joint pain and muscle aches. I also had back ache and the feeling of bladder pain. I spent two weeks in hospital where my inflammatory markers were 279 on my first blood test. I had an x ray which suggested inflammation of the small intestine, a ct scan which showed thickening, a sigmoidoscopy which showed nothing also had a later mri scan which showed nothing. As an outpatient I had a colonoscopy with biopsies which showed nothing. I had a course of steroids during my time in hospital which brought the inflammation right down by the time I left hospital. Am now confused as to what is wrong with me as I expected my biopsies to show inflammation. Also there was no evidence of infection in my body, white blood cell count normal etc. If anyone could shed some light on this I would appreciate it greatly.

Thank you
05-15-2014, 02:42 PM   #2
valleysangel92
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Sounds like you've been having a rough time of it lately.

There is a chance that you still have crohns even with a clear colonoscopy.

When you have a colonoscopy, they can only see the start of the small intestine so there is a lot of small intestine that doesn't get seen. You could ask them to try an endoscopy or a pill cam.

An endoscopy won't reach all the way through the small intestine, but a pill cam won't allow biopsies so there is a downside to both. The best thing to do is have a chat with your GI and see if they are willing to give one or both of them a try.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-15-2014, 02:46 PM   #3
Cgreen
 
Join Date: Apr 2014
If you have Crohn's further up in your digestive tract are the normal symptoms vomiting? because I only have diarrhoea and nausea and the pain in is my lower abdomen. Could it be possible that the steroids have got rid of the Crohn's for the time being?
05-15-2014, 03:03 PM   #4
valleysangel92
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Everyone is different, the lack of vomiting doesn't mean you definitely don't have it in the small intestine. There is a possibility that the steroids have made things look clearer than they would of if you'd had the tests before the medication. There is some debate over the effect of treatment on test results. I've seen a few people say that results have been negative after a course of steroids and then further testing a few years later has clearly demonstrated IBD so yeah there is that chance.
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