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30 years of symptoms - never diagnosed

I developed gut issues in my late 20's. They were annoying, but manageable, and I was told (and believed) that I had IBS. A decade later I saw a gastro in Australia due to worsening of symptoms and was told that he thought I probably had Crohns. He was unable to give me a definitive diagnosis and before we could explore it further, I relocated to England for my husband's work. I oscillated between feeling lousy and feeling great - one bad year - one good year - back to another bad year. The good years almost made the bad years worthwhile.

In my early 40's we relocated to the US - again for my husband's work - and have now been here for 12 years. My gut has been somewhat unreliable on and off during this period, and past colonoscopies have revealed ulcers in my terminal ileum...which had gone by the time a follow up colonoscopy was performed, swelling in my small intestine...which had gone by a follow up appointment, and so on. Two other gastros told me that they thought I had low level Crohns.

About 6 months ago my bowel habits began to change - constipation followed by diarrhea then back to constipation - with periods of normal bowel movements in between. I managed it all ok, but knew something was changing. Then two months ago I had what I can only describe as a profound diarrhea episode with cramping so bad that it was unbearable. I shook, sweated bullets, thought I'd pass out...till it passed after about an hour leaving me exhausted. I was scheduled for a colonoscopy - then was diagnosed with pneumonia the day before, so it was cancelled. Three weeks later - same thing. And then - once more - we relocated - this time to Boston. Three days in my new home and same thing again. I've found a PCP here and her feeling is that I've had Crohn's for years and that it's finally escalating. I have a colonoscopy scheduled again and am hoping for some definitive answers.

I guess my main question is - during a flare up, does anyone else have pain as bad as this during diarrhea? I have the normal nausea, fatigue and joint pain, and I've read people talk about pain with Crohns, but the pain during these intense bouts of diarrhea, which last for about an hour, is unlike anything I've ever experienced. Until my bowel is completely empty, the pain from the cramping is so severe that I am unable to talk or stand. I feel as though I'm about to pass out and do, in fact, sort of waft in and out.

I think I'm looking for someone to tell me "Oh hell, yeah! That happens with Crohns!" For some reason, I think I'd find this comforting.

Thanks for your support and I hope I can make a positive contribution here.

Whitby.
 
Hi Whitby,

Welcome to the forum. Sorry to hear of your long battle to get a diagnosis. That does seem to be quite a common story with Crohn's and your symptoms do sound like this might be the right diagnosis for you.

I do think people with Crohn's can experience extremely severe pain with bowel movements. I know I have at times with this disease had the sort of pain that you describe where I feel like I might pass out.

I hope you can get some definitive answers from your upcoming tests and are able to start some treatments that help you soon.

There's an 'Undiagnosed Club' support forum here which you might find helpful right now as you'll find other people there waiting for a diagnosis. Lots of luck :rosette1:
 
While I don't think you should take this as confirmation you have Crohn's, yes, Crohn's can certainly cause pain that severe. It can cause mild pain, moderate pain unbearable pain, pain with bowel movements, pain after eating, pain for no apparent reason whatsoever....

I hope your next colonoscopy can provide more useful information for you. Have you had any other types of test, such as an upper endoscopy or imaging studies? What about more general tests like blood tests? Have they ever shown abnormalities? Have you discussed the diarrhoea/pain episodes with a doctor at all?
 
24601 - Thanks for your encouraging post. :) It was nice to hear I'm not the only one out there who is struggling. And I will definitely check out the other forum - thanks for the link.

UnXmas - I have various other symptoms - mucus and very occasionally blood in stools, regularly recurring mouth ulcers, a CRP which has never been below 20 on testing and, as I mentioned, ulcers in my terminal ileum which had gone by my next colonoscopy. My problem, if you can call it that, is that it's always been comparatively mild (only comparatively!) so my symptoms come and go - but go more than come. Recently, tho, they've become more consistent and considerably more severe. Over the years I've had various imaging studies (most recently only a few weeks ago) and they have, on occasion, shown swelling/thickening in various parts of my large intestine and upper small intestine/esophagus. So all that to say, I'm hoping for a diagnosis this time. And yes, I've discussed everything with various doctors - 2 of whom told me I just needed to take antacids. (Can you say "not listening'??!)
 
Oh absolutely "not listening" was probably the main characteristic of most of my early consultants...in fact I think they took not listening so seriously they must have actually thought it was a requirement of their job. My GPs who thought my symptoms weren't serious could also say "stress", "anxiety" and "lack of fibre".

I know that we on the forum can't know whether this is the right diagnosis for you but it does sound like you have had symptoms and test results that would have resulted in a Crohn's diagnosis from some doctors. Of course there are differential diagnoses to be ruled out and it's nice if you have the certainty of confirmation from biopsies - but as you'll see in the 'Undiagnosed Club' there are people there who have similar stories to yours with test results being considered 'equivocal' and findings not being consistent - observed on one scan and not on the next.

What we can be certain of is that regardless of your diagnosis you are very welcome here and will get support on this forum from people who experience similar GI symptoms, and I think it's always nice to be around people who have an idea of what you are going through!
 
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