Trouble getting diagnosed with Crohn's

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katieq132
New Member


Date Joined May 2018
Total Posts : 1
   Posted 5/4/2018 4:05 PM (GMT -6)   
Hi everyone! I joined the forums hoping to get some feedback about what I should do about my current situation.

Since September I've been having really bad gastrointestinal issues. Growing up I would have occasional issues with IBS but these past few months have been horrible and much different than what I experienced dealing with IBS. I'll have horrible cramping and D that started relatively soon after I ate. More recently, it'll be hours after I've eaten anything and then I'll start having horrible cramping that can last for hours. Then after the cramping I have really bad D. It's getting to the point where I'm not able to leave the house much, if anything out of fear I might have a "flare".

I also have some other Crohn's related symptoms like extreme exhaustion, low grade fevers, eye dryness and irritation, and joint pain. I can sometimes tell when I'm going to have a "flare" because I'll feel feverish an hour or so before it hits or my knees will start hurting very badly. On top of both, I'll be exhausted and be able to sleep an entire day away right before a "flare" starts up.

I went to a GI in late September of last year who didn't want to run any tests because he was sure it was just IBS. After months of dealing with these issues getting worse, I went to a new GI in March. He had me do the basic breath tests, blood work, stool sample to check for infection, that sort of thing. When none of those came back with anything, he ordered a colonoscopy. I requested an endoscopy as well because I understood an endoscopy went into the ileum and jejunum which is where I believe my Crohn's is the worst (because of stabbing pain in my upper left and cramping in my lower right quadrants). When I asked right before the procedure, he said that they wouldn't be looking at any part of my small intestine except for the very top which connects to the stomach (duodenum).

After the colonoscopy/endoscopy, I was told by the nurse that they saw inflammation in my colon and also bile acid in my colon and I was "diagnosed" with colitis. They also took biopsies along the way and I was told they would call with the results when they got them. Today, a nurse called and said that the GI believes I have IBS and should try taking IB Guard and follow up in two months.

I'm confused and upset by these results. From what I've read, inflammation doesn't occur in IBS. Also, they didn't go into my small intestine which is where my disease, I believe, is located. I don't want to keep GI hopping but I also don't want to keep living like this. I'm at my wits end here. I really think I have Crohn's disease. What would you recommend that I do?

Thank you so much for reading! I know this is a lot of text.

Post Edited (katieq132) : 5/4/2018 4:09:01 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 5/4/2018 4:25 PM (GMT -6)   
Hello & welcome to the forum. Sorry to read about what you are dealing with. I would get a copy of the written report from the first scope & biopsy report from gi #1, along with a copy of the lab testing that was done. Next, I would get a copy of the scopes & biopsy reports from gi #2 ASAP. Once you get those copies of medical records you can post them here. They are your medical records & you are entitled to a copy. Any time testing is done you should get a copy for your own personal file.

There are different types of colitis so I am not sure what the nurse told you. I feel certain the dr did not give the diagnosis of crohns based on the biopsy report. That is pretty much gold standard for a diagnosis. Is it IBS, I don't know, none of us can say. I do know people can have IBS from mild to severe.

You might want to consider calling Monday & see if the dr will see you sooner. It makes it difficult to say much without seeing what the biopsy reports state. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10537
   Posted 5/4/2018 4:29 PM (GMT -6)   
Obviously can't ever diagnose Crohn's from symptoms alone, but your symptoms were ticking nearly all of the boxes for an IBD. Thus I'm not surprised by the inflammation found in your colon. Before I address that bit, though, I just want to clear this up.

I requested an endoscopy as well because I understood an endoscopy went into the ileum and jejunum which is where I believe my Crohn's is the worst (because of stabbing pain in my upper left and cramping in my lower right quadrants).

No, a traditional endoscopy only goes as far as the duodenum, which is literally just a few inches into the small bowel - so the vast majority of the small bowel is not looked at. You might have been thinking of a capsule endoscopy, where a miniature camera inside a capsule is swallowed and travels through the entire small and large bowel, taking pictures as it goes.

Today, a nurse called and said that the GI believes I have IBS and should try taking IB Guard and follow up in two months.

Nope. I rarely tell people what to do but on this occasion I am. IB Guard is a glorified peppermint oil for IBS. Save your money, request copies of all your test results (including the biopsy report from the colonoscopy), find a new GI, and hand over a copy of all your test results. Begin a new plan of action, starting with proper medication.

PS: I agree, with suspected Crohn's you should have your small bowel examined as well. Either via a capsule endoscopy or a small bowel MRI scan. There's advantages/disadvantages to both tests, but the MRI scan is easier to do and is a more thorough visualisation in some ways (e.g. it can show thickening of the bowel walls, a characteristic sign of Crohn's).

Post Edited (NiceCupOfTea) : 5/4/2018 4:34:17 PM (GMT-6)

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