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01-05-2016, 04:11 PM   #1
Hamha
 
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Crohn's symptoms but no diagnosis?

I've been suffering from Crohn's symptoms for a bit over three years now. I pretty much have the full roster, excluding serious complications - you name it, I've probably either got it or have had it. Right now I'm in the middle of one of my worst flare-ups yet - I was in the ER a week ago and was sent home with T3, which helped at first but has already begun to lose effect. I'm spending most of my time curled into a ball and trying not to cry from the pain, or dashing to the toilet. I've been seeing a GI for two years, and he has been very reluctant to send me for any tests. I finally got a colonoscopy and gastroscopy in December, which he told me came back normal except for very minor hemorrhoids. I've been treated off and on for anaemia all year, but no doctor I've seen has pursued the cause of the anaemia (which seems wrong to me since my iron levels fluctuate wildly and can be very, very low at times). I asked for a referral to a different GI about a year ago and received it, but the referral was then rejected by the GI, no reason given. My GP is supportive but can't really help. My GI has announced that I have "sensitive nerves" and seems not to be interested in further testing.

Has anyone else ever experienced this? To me (unfortunately I am not a doctor at all) it seems like textbook Crohn's and I'm very frustrated to not have a diagnosis by now. Can anyone recommend a course of action? I'm desperate and ready to try just about anything to get answers.
01-05-2016, 05:48 PM   #2
ronroush7
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Ask a doctor for a fecal calprotectin. Will your insurance let you go for a second opinion without a referral? Keep us updated.
01-06-2016, 01:16 AM   #3
Hamha
 
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I have a stool culture on order, which hopefully will include fecal calprotectin. If it doesn't I will ask my GP to order it. I'm also going to ask for an MRE of my small intestine.

Unfortunately, I am in Canada and it is impossible to get an appointment with a specialist without a referral unless you go to a private practice, which I can't afford. I will be asking my GP again for a new referral as I do not think my current GI is going to help any further.
01-06-2016, 01:18 AM   #4
ronroush7
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Our best to you.

01-10-2016, 11:24 PM   #5
tzvia
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To get a diagnosis of Crohn's the Dr needs to see active inflammation or ulceration in the GI tract. Usually that is seen through the colonscopy, but i understand your was normal. Perhaps the MRE would show something. But without and imagery test that shows inflammation/lesions, it will be hard to get a diagnosis of Crohns. Have you ever tried to do an elimination diet to see if certain foods are a trigger for the symptoms that you have been having?
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Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira

01-10-2016, 11:54 PM   #6
Hamha
 
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Thanks Ron and tzvia. I will certainly be trying to get an MRE as soon as I can.

I have tried several elimination diets and at one point was off of all gluten, dairy, nightshades and almost all nuts. I am considering trying either the low FODMAPS diet or the SCD, but due to hypoglycemia I'm concerned about major diet changes.

Does anyone know whether the colonoscopy would have shown Crohn's if I was in remission at the time? I'm not sure whether or not I was, honestly.
01-11-2016, 12:05 AM   #7
ronroush7
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There is a section called Tests for IBD. You might want to check there.

01-11-2016, 05:22 AM   #8
Christi
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Also a biopsi would help
01-20-2016, 02:41 AM   #9
Hamha
 
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Thanks again everyone for your support and suggestions!

I saw my GI today and he has ordered the fecal calprotectin test. If it comes back abnormal he will order a CT scan. He's also referred me to a second, more senior GI in the area and is arranging a referral to a pain specialist. Not 100% the outcome I'd hoped for, but much better than my worst case scenario.

GI is currently fairly convinced that I just have a sensitive gut, and told me Crohn's is usually easy to diagnose and he thinks he would have found it by now. From reading this forum I know it's not always that easy, of course. Right now I am just hoping my referrals go through quickly and that I don't end up back in the ER anytime soon.
01-20-2016, 02:42 AM   #10
ronroush7
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Wishing you the best.

01-20-2016, 04:21 AM   #11
Catherine
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Do you have iron studies or iron panel results?

Does your Gi think it IBS?

Do you currently have anemia?
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
01-20-2016, 12:33 PM   #12
Hamha
 
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Do you have iron studies or iron panel results?

Does your Gi think it IBS?

Do you currently have anemia?
I was severely anaemic as recently as September, but blood work on the 28th of December showed safe iron and ferritin levels. This was three weeks after ending an intense course of iron supplements.

My GI doesn't think it is IBS; he is really just saying "I think the nerves in your abdomen are too sensitive".
01-20-2016, 04:08 PM   #13
Catherine
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Do you have the actual results and are you willing to post them?

What was the actual haemoglobin level?

Anemia is not normal and a reason must be found.
01-20-2016, 04:34 PM   #14
ronroush7
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It usually means you are bleeding somewhere, I believe.

01-20-2016, 08:22 PM   #15
Catherine
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Anemia can be caused by low iron, B12 or folate

Anemia due to low iron has a number of causes, bleeding is one.

https://www.betterhealth.vic.gov.au/...iciency-adults
01-21-2016, 08:39 PM   #16
Hamha
 
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My recent results (in grams per litre) for hemoglobin and ferritin tests:
July 5 - hemoglobin 147, ferritin 17
September 10 - hemoglobin 138, ferritin 47
December 11 - hemoglobin 138, ferritin 79
December 28 - hemoglobin 137, ferritin n/a

I'm assuming that because my hemoglobin levels have stayed in a safe range, none of my doctors have thought the low ferritin levels to be of particular concern.
01-22-2016, 04:47 PM   #17
Catherine
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Do you have the ranges? Were you take iron supplements when these tests were done?

Do you have any other iron numbers? Did they just put ferritin or did they do iron studies or iron panel?
01-28-2016, 02:32 AM   #18
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My sister went almost 20 years with Ulcerative Colitis and this fall she had to have surgery to remove her intestines and thats when they found out she had Crohn's this whole time.
01-28-2016, 02:36 AM   #19
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so know that the best way to diagnose is surgery.
01-28-2016, 08:39 AM   #20
ronroush7
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so know that the best way to diagnose is surgery.
There are always tests that can be done. I am sure it is easier to diagnose in some people.

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