Crohn's Disease Forum » Your Story » 2 years with pain already

01-03-2019, 10:55 AM   #1
Join Date: Jan 2019
Location: Virginia
2 years with pain already

Hello everyone.

I was trying to read as much as topics here but generally they don't solve my questions. I will describe shortly my confusion and pain and maybe someone will be so kind to tell me something about the pain and genesis of the disease.

My pain started more than 2 years ago. First as an uncomfortable feeling in the upper left belly (just under rib cage), then as cramps that were coming and going. Once I almost fainted when a cramp pain strucked me and I went to emergencies. They ruled out pancrea, lung, kidney pain. I had really good insurance and I had colonoscopy done 1 week later (after 3 weeks from when the pain has started).

Colonoscopy was clean, nothing out of ordinary. My PCR was clean although I had small amounts of blood in stool (having diarrhea a lot). Then I was prescribed some meds for bacterias that caused me a gastroenteritis. When I healed that with Ciplofloxacine I had duodenum irritated (gastroscopy) and I was taking omeprazoles for it. Then I was released but was having pain everyday in the same place. I went to emergencies 3 or 4 times and all blood tests and radiologies went clean (I just had big gases in the colon).

Now.. It was 2 years ago and since then I am having pain every day. Lately It started to hurt me in the same place but on the right of the belly. I was diagnosed with IBS but after having very special diets, probiotics, stress relievers and everything that is supposed to help with that it doesn't. Over the time I had elevated calprotectine, low iron, no blood in the stool.

My question is: When you were diagnosed with Crohn's, how long did it take for the doctors to make sure it is that? Or how long were you with pain before real sympthoms (like blood in stool) appeared? I've been looking for help since
2 years and although I was told it's not Crohn it was 2 weeks after the pain has started based on Colonoscopy (2 years ago). The only drug from around 30-40 that I was told to take for different diseases was cramp reliever Drotaverine. It helps me for 1-2 hours. Besides having pain and diarrhea or loose stool everyday I have hashimoto and I'm afraid of Crohn's as it is common to have it with my condition.

I would very appreciate your opinion or explanation of your diagnose time. Thank you.
01-03-2019, 11:05 AM   #2
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

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Hello, welcome to the forum

Unfortunately Crohn's disease and ibd in general are notoriously hard to diagnose as there are so many different symptoms and patterns of disease.

For me, it took almost 5 years to get a diagnosis, and even longer for all of my doctor's to agree.

My first symptom was pain too, but as a teenage girl it was put down to all sorts of different things, usually related to being female. I had a few different tests but nothing really showed up, so I was pretty much left to get on with it really .. it took until I lost over a stone in weight and was vomitting even when I only had tiny amounts of water to drink for more investigation to be done.

I had an MRI scan and a colonoscopy, and was finally diagnosed with Crohn's disease after that, but colonoscopy isn't conclusive for everyone. Crohn's disease can be active anywhere in the digestive system, and there is a portion of the small bowel that can't be seen by either colonoscopy or gastroscopy because the scope doesn't reach far enough. This is where something called a capsule endoscopy can be useful, it's basically I tiny camera in the form of a pill that can be easily swallowed to take pictures of the intestine. It can't take biopsies but it can record any visible inflammation in the small intestine. A full bowel MRI can also be useful but it's not always accurate as it has missed flare ups for me before.


coeliac disease/Osteopenia /Crohns/Arthritis/cluster headaches/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
01-03-2019, 11:10 AM   #3
Senior Member
Scipio's Avatar
Join Date: Oct 2015
Location: San Diego

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I landed in the hospital with severe anemia, and that began the search for the cause. It took a full year for them to come to a firm diagnosis of Crohn's. I had a dull lower right side pain for years (maybe 10 or more years) prior to that, but not severe enough to send me to the doctor.

Once the search for a diagnosis started in earnest my colonoscopy, upper endoscopy, and lab tests (other than the anemia) were all normal. Crohn's was finally diagnosed by capsule camera endoscopy - the "pill cam," which showed aphthous ulcers in the ileal region. Thickening of the small bowel in the same region was later confirmed by MRE.

Crohn's can sometimes do a pretty good job of hiding in the small bowel. If your doc hasn't taken a good look at your small bowel you may wish to discuss with him/her the possibility of a capsule camera endoscopy and/or MRE.

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