Crohn's Disease Forum » Support Forum » Undiagnosed Club » Do I have Crohn's Disease?

11-22-2013, 07:18 PM   #1
Join Date: Nov 2013
Do I have Crohn's Disease?

Hello everyone,

The reason I am here is because I have struggled with some of the symptoms of Crohn's Disease now for the last 18 years. I am now 35. I have been to countless doctors over the years and I have been through many different tests to try and figure out what's wrong with me. Every test comes back negative... they see nothing wrong.

I do't know what all the tests we for for I've had bloodwork, breath tests, allergy tests, an EKG, tests for ulcers, etc. They have me on Dexilant right now for the last year to reduce the acid in my stomach but it doesn't seem to be helping.

Anyways, here are my symptoms :

1.) I feel nauseous on a regular basis. Sometimes so bad I dry heave on the toilet (do not normally throw anything up). This usually happens more at night or almost always if my stomach is empty.

2.) I feel bloated often. My stomach feels like it's going to burst and is painful.

3.) I now have had diarrhea for almost 2 months straight. Diarrhea is not uncommon for me but this is the first time it's last this long.

4.) I occasionally have blood in the stool... maybe once a month.

5.) It's very normal for me to have stomach pains in the intestine region... always feels like gas is stuck in there and cannot escape.

6.) Some foods seem to trigger my stomach pains more than others. Things like milk, alcolhol and especially thing like energy drinks. I had an allergy test and they tested me for over 100 things and I'm not allergic to anything.

Anyways, every doctor just says, we are not sure what is wrong with you. The say it's just it's IBS (irritable bowel syndrome). That's just hard for me to take as It's very hard to live my life with this discomfort and pain.

The fact I have had diarrhea for so long mad me wonder if it's possible I had Crohn's Disease.

I thought I'd get some of your opinions... from the people that have it. Does this match your story at all? Or do i definately not have Crohn's Disease?

Thanks for your time
11-22-2013, 08:18 PM   #2
Join Date: Oct 2013
Location: Australia
Have you been to see a gastroenterologist? Go see your doctor and tell him your symptoms and that you want a referral. The gastroenterologist will preform tests that your GP can't like camera tests to see what is going on, and normally you will have an immediate diagnosis.
In the meantime, don't suffer with diarrhea, take immodium/gastro ease, they make a massive difference, and keep your fluids up of course. I am on Pramin for my nausea and it is amazing! The nausea goes away as quick as 30 mins and I don't know how I ever lived without it.
Good luck trying to find a diagnosis! It can be hard but don't give up!
11-22-2013, 08:33 PM   #3
Senior Member
Join Date: Jun 2013
Location: Canada

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Agree with sammybeggs (haha iPad autocorrected to spammy eggs) that if you have not seen a GI that you should ask for a referral. Or ask to see another one and keep trying until you find one that will figure things out. Sounds like it could be Crohn's, but could be other things too.

Have you ever had a colonoscopy?

Heard about an interesting test at a lecture my GI gave this week. Testing stool for fecal calprotectin. GP should be able to order.

It is new and non-invasive. Around $100 in Ontario and only some insurers will pay.

Hope you get some relief and answers soon.
Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Humira, Entyvio every 4 weeks, Levofloxacin 750 mg, Vitamin D

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran
11-22-2013, 09:39 PM   #4
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I also agree.

Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-22-2013, 09:53 PM   #5
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Join Date: Nov 2013
Location: Rochester, NY

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I'm so sorry for your pain and your frustration. The symptoms you describe certainly could be Crohn's, and dairy, alcohol, and caffeine can all trigger Crohn's symptoms. If you haven't yet, I totally agree that you need to see a gastroenterologist (or a new one if yours hasn't gotten a diagnosis) and have a colonoscopy. It can be so dehumanizing when you have to constantly push to get testing done or to be taken seriously. You deserve answers. Stay calm and carry on, and best wishes for some resolution!
11-22-2013, 09:57 PM   #6
Join Date: Nov 2013
I have been to a GI and he had a quick look and saw no issues. Not sure if the 3 minute check is all the is required or not... or if there is a more thorough one.

I guess I just don't want to go to my doctor and asked to get checked for Crohn's if it's not likely what's wrong with me. They've tested me for pretty much everything else... i'm just frustrated
11-22-2013, 10:07 PM   #7
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Join Date: Nov 2013
Location: Rochester, NY

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I feel your frustration. You can't tell if someone has Crohn's by looking at them, feeling their belly, checking their vitals, or even bloodwork. They need to look inside your GI tract to actually see what is going on. I would say "I want to be checked for Crohn's". After all you're going through, why not get this answer? If you need any more incentive, if left untreated, Crohn's can actually cause damage to the lining of your intestines. I don't want to be scary, but I do want to encourage you to not stop trying to get an answer. You deserve to know why you're feeling this way.
11-22-2013, 10:40 PM   #8
Join Date: Nov 2013
ok, thanks for the advice. I just didn't want to ask my doctor to be tested from Crohn's if my symptoms didn't match what someone with Crohn's would have.

Which is why I am here.
11-23-2013, 09:01 AM   #9
Join Date: Oct 2012

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I agree with the replies above - Crohn's can be confirmed or ruled out with a colonoscopy and upper endoscopy. However, these tests are invasive so some doctors might be wary of performing them if other signs and symptoms don't justify it. Have any of your blood tests shown abnormalities? Any signs of inflammation or deficiencies which might indicate malabsorption?

Nausea, diarrhoea and stomach pain would not necessarily indicate Crohn's disease. While Crohn's can certainly cause all those symptoms, there are many other conditions which could also be causing them. Doctors would probably view the bleeding as more significant. Have you been checked for haemorrhoids and other causes of bleeding?

Finding a good doctor who understands the effects your symptoms are having on your life is the best way to start looking for some answers and treatment. It can be hard to find good doctors, so don't worry if you have to see several before you find one who you want to stick with.
11-23-2013, 11:57 AM   #10
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Join Date: May 2012
Location: Charleston, West Virginia

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Alrighty. Let's get to it.

First off, if you have bleeding, there is something going on that needs to be found. It is not IBS. IBS does not cause bleeding. So yes, it is likely you have Crohn's (although there are other possibilities as well, so please don't self-diagnose).

A "three-minute check" is not acceptable. I'm not even sure what a GI could do in three minutes that would give them any idea of anything at all. You need to have a colonoscopy done soon, possibly followed by a CT scan, capsule endoscopy, or endoscopy if nothing is found on the first scope. They need to see your digestive tract. If your doctors aren't helping, please try to switch to different ones. You deserve to be taken seriously and you should not just be dismissed and left to deal with this.

I hope things get better for you soon!

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

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