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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Diagnosed with crohn's but now they are uncertain


10-25-2015, 08:29 AM   #1
Dou8036
 
Join Date: Oct 2015
Diagnosed with crohn's but now they are uncertain

Hi everyone,

I would really like some advice / get in contact with anybody in a similar situation.
My story: I am 20 years old & 5 months ago I was diagnosed with Crohn's disease. I was unwell on and off for a while & then got into a bad flare- I lost over a stone, had mucus & blood with bowel movements and could barely eat without triggering it all off so ended up in hospital. I had a colonoscopy, CT scan, bloods & calprotectin. My calprotectin was in the thousands, I had frank ulceration throughout my bowel but worse area was my terminal ileum, my biopsies were inconclusive, my CT showed inflammation and my CRP was up. No signs of infection on bloods.
I was started on prednisolone and pentasa. 3 weeks after leaving hospital my consultant called to say that they cultured campylobacter in my stool- I was told to continue medication and that there is a possibility I do not have crohns and that the bacteria caused all of this but that only time would tell. I was never on antibiotics.

I have improved greatly however I still suffer with pain in my right lower abdomen it is like a constant ache but is especially tender to press on and never goes away. My bowel movements can also be all over the place but that's normal now, I have had 4 anal fissures since and I rarely go a day without mouth ulcers. I have also started to suffer pain in my right hip. My last two meetings with my consultant he seemed confused I was still unwell as 'he thought I would be better and he could discharge from care' he then put each of my symptoms down to another reason, so the pain to constipation also the fissures. The mouth ulcers he had no answer for- neither the blood / mucus. I'm just really confused as I'm now being treated as though I do not have crohns but I am still suffering with all of these symptoms. Currently my calprotectin is in the normal range. Help please x
10-26-2015, 05:44 AM   #2
IvyL
 
Join Date: Oct 2015
I think a new doctor and repeats of tests are needed!
11-03-2015, 12:01 AM   #3
tots
Senior Member
 
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Join Date: Feb 2012
Location: Austin, Texas

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It took a long time to get my Dx, and each Dr has made me "prove"I have it. One reason not to move very often.

Don't let up, if you think something is wrong, push them.


Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
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