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Crohn's Disease Forum » General IBD Discussion » Help getting Diagnosis


06-22-2017, 10:30 AM   #1
Elliot
 
Join Date: Jun 2017
Location: Glasgow, United Kingdom
Help getting Diagnosis

Hey,

So Im a 23 year old guy looking for some advice as to what to do next.

My main symptoms are infrequent abdominal cramps and constant diarrohea which can cause nausea. My bowel movements sometimes have mucous, but most often do not. In terms of colour, I have pale yellow, green or brick red. Also, Ive lost about 14 ibs in 4 months which has put my BMI to about 16.5-17. On top of that, I get really bad mouth ulcers on my gums, tonsils and the roof of my mouth.

So after fighting my GP who refused to consider IBD (or IBS!) I have been to see a Gastro who has run the following diagnostics:

Fecal Calprotectin - 165
Endoscopy: Upper - Heitus Hernia and
Chronic Gastritis.
: Lower - Normal except tight
junctions.
: Biopsy - Negative.
MRI Small Bowel Study - Normal
Capsule Endoscopy - Small, scattered ulcers
in the small intenstine.

Would just like to say, Im really grateful for all the tests Ive had, I know many people here have to fight for some of the investigations I have had. But Im just looking for advice as to what to do next.

My Gastro is saying that he doesnt think this is adding up to Crohns but that I should have a trial of Budesonide for 8 weeks to improve my symptoms or consider paying a bit more to get a balloon enteroscopy done so they get biopsy the ulcers.

My concern is that, Budesonide is used to treat Crohns and if it works well, then surely that is suggestive of me having this illness. Does anyone here know of being able to get a diagnosis through responding to treatment? Additionally, I have read in a few places that mild Crohns can first present as small apthous ulcers. Has anyone here had small ulcers which arent enough for Crohns, but have got worse in time enough for a clear diagnosis?

So, should I go for the deep bowel examination or should I see what the steroids do? If they help, how long should I expect to be symptom free before problems start to occur?

I would really appreciate some advice, the thing Im finding most challenging is judging what the Gastro is thinking and what questions I should be asking him.

Any advice would be greatly appreciated.

Also, apologies if my bowel movement descriptions are a bit much. No offense intended.

Cheers
06-22-2017, 10:48 AM   #2
Scipio
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Location: San Diego

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Hello and welcome.
When I was first diagnosed it was seeing a few apthous ulcers in the ileum via capsule camera endoscopy that cinched the deal. Prior to that the GI was uncertain. I had anemia, mild abdominal pain, but no diarrhea and a clear colonoscopy.

And some ailments can be diagnosed by response to specific therapy. For example bile acid diarrhea can be diagnosed by a favorable response to bile acid sequestrant drugs such as Questran. But I've never heard of that diagnostic approach being used with budesonide on IBD though. I'm not saying it's nonsense. I'm just saying it's unusual.
06-22-2017, 11:18 AM   #3
Jabee
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It certainly sounds like crohn's: chronic oral ulcers and scattered ulcers throughout your intestines. What does your GP think is happening? As far as a double balloon enteroscopy to get biopsies goes, I think under 50% of crohn's patients have biopsies that are positive for crohn's. Has your GI said that he will keep you on Budesonite if your symptoms improve? Or does he want to do another capsule endoscopy to check? Budesonide does treat small bowel crohn's, targeting the terminal ileum most specifically, so I suspect you would start to feel better while taking it. Losing weight unintentionally is not something to play around with so I am confused by his approach.
06-22-2017, 12:56 PM   #4
Elliot
 
Join Date: Jun 2017
Location: Glasgow, United Kingdom
Hello and welcome.
When I was first diagnosed it was seeing a few apthous ulcers in the ileum via capsule camera endoscopy that cinched the deal. Prior to that the GI was uncertain. I had anemia, mild abdominal pain, but no diarrhea and a clear colonoscopy.

And some ailments can be diagnosed by response to specific therapy. For example bile acid diarrhea can be diagnosed by a favorable response to bile acid sequestrant drugs such as Questran. But I've never heard of that diagnostic approach being used with budesonide on IBD though. I'm not saying it's nonsense. I'm just saying it's unusual.
Hi, thanks for your response and its very interesting that a few ulcers (which sounds similar to me) was enough for your diagnosis. I asked my GI what it was about my ulcers which fell short in his opinion but he didnt respond to that question.

I dont think the steroid has been prescribed to aid diagnosis...I get the feeling its more to get rid of me for now so we can watch what happens with my symptoms in time.

Guess I will just have to wait and see!
06-22-2017, 01:04 PM   #5
Elliot
 
Join Date: Jun 2017
Location: Glasgow, United Kingdom
It certainly sounds like crohn's: chronic oral ulcers and scattered ulcers throughout your intestines. What does your GP think is happening? As far as a double balloon enteroscopy to get biopsies goes, I think under 50% of crohn's patients have biopsies that are positive for crohn's. Has your GI said that he will keep you on Budesonite if your symptoms improve? Or does he want to do another capsule endoscopy to check? Budesonide does treat small bowel crohn's, targeting the terminal ileum most specifically, so I suspect you would start to feel better while taking it. Losing weight unintentionally is not something to play around with so I am confused by his approach.
Hi,

Those are very good questions and are exactly what I was looking for in coming on here, so thank you very much.

In all honesty, I was very hesitant to undergo a deep enteroscopy because its expensive and I barely tolerated the colonoscopy to the TI.

So far, my GI hasnt shared anything except a desire to put me on those meds for a trial of 6-8 weeks.

I proposed a monitoring of my calprotectin levels and if or when they spike, to do another capsule endoscopy. Again, my GI has not responded with regard to that suggestion.

But, I look forward to asking those questions when I see him.

Whether or not he will answer them is another story!
06-22-2017, 04:12 PM   #6
ronroush7
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I agree with Jabee. Wishing you the best.
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