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IBD Purgatory: symptoms, but no diagnosis

Hi CDF~

I as diagnosed with lupus at the tender age of 17, and ten years later, started having gut troubles after getting a bout of gastro on a cruise ship. About a month after that, I woke up one morning to find the area around my gallbladder to be tender, then painful, then agonising as the weeks progressed. I went to a US hospital and was tentatively diagnosed as having gallstones by two very tired doctors doing a dodgy bedside ultrasound. I went back to Australia, had a proper ultrasound and CT, and no stones could be seen - only a thickened/inflamed upper right colon.

Since then, my guts have been in anything from mild discomfort to floor-writhing, wretching agony, with no answers as to why. Bloods and urine and stool tests are all normal. CTs and x-rays and ultrasounds show inflamed inguinal lymph nodes and occasional visible colonic inflammation, but nothing definitive. The pain never moved from that one spot until about a month ago, when the area around my appendix/terminal ileum joined the fray and now hurts worse than the original site. Antibiotics help when it gets particularly bad, for some reason.

Today involved yet another trip to the hospital. After days of agonizing pain and worry about the chance of atypical appendicitis (because I have consistently tested negative for infection), I went in and had a CT scan which showed everything to be 'normal' - even if my pain is regularly a 7 out of 10 on the hospital scale.

The frustrating response of the doctors I've seen is 'you have IBS'. As far as I know, IBS doesn't entail pain in specific sites which don't wander or shift, for one, or sharp, hot, stabbing pains which aren't affected by voiding. In fact, it generally makes the pain worse! I also get crops of mouth ulcers, despite not having any detectable vitamin or mineral deficiencies.

I have read a number of posts on this forum and have gained much from reading other people's stories. I am not sure what I have, but I don't think its IBS. It could be a manifestation of lupus attacking my gut, but as I am being treated for lupus and have it fairly well managed, I am doubtful. The fact that the pain responds to antibiotics makes me wonder about Crohn's Disease - because I don't have any signs of H. Pylori, either. I've lost a fair amount of weight since this began.

Are there others here who have this weird combination of normal bloods/urine/stool tests, normal radiography results and other tests, but with severe pain in particular spots? I've been seeking a diagnosis for nearly 9 months now, but no luck. I have heard hearsay about some people having a very long and difficult road to a diagnosis of Crohn's, and wonder if anyone here has had a similar experience to what I've described.
 

nogutsnoglory

Moderator
I'm so sorry you need to go through all of this just to try to come to an understanding of what's wrong with you. IBS and IBD share some similar symptoms but major differences can include blood and inflammation of the intestines. If you are really concerned that you don't have IBS I suggest you go for a second opinion to an IBD expert. If they too believe its IBS that may very well be what you have.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the community. I'm sorry to hear of your struggles :(

You mention stool tests. Have you had a fecal calprotectin done? And have you had a colonoscopy done during all of this?

All my best to you.
 
Hi David,

No, I haven't had the CALPRO test or a colonoscopy. I've had upper and lower CTs with contrast, x-rays, ultrasound, and pretty much every other stool, urine and blood test. All negative, including the occult blood check. It is mystifying, because of the severity of the pain and the persistent sites of pain in the lower terminal ileum region and the upper right, near the gallbladder.

Thanks for the advice! I am going to the doctor tomorrow for Round Eleventy, and will mention the CALPRO screen. I was planning to have my ANA checked to see if it is lupus-related.
 
I'm sorry you're having trouble getting diagnosed, for many of us it is a long, complicated process. There's a thread, here: http://www.crohnsforum.com/showthread.php?t=13113 for those still trying to get diagnosed.

Although your pain may not be typical of IBS, I don't think it excludes it. IBS is a very vague diagnosis which doctors use when they can't think of another explanation for a patient's digestive problems, and as they seem to want to be able to include as many symptoms in it as possible, any kind of abdominal pain can be made to fit an IBS diagnosis. Pain in specific spots is not typical of IBS, but I don't think it contradicts the criteria.

I'm not saying that means you do have IBS - because I think it's a ridiculous diagnosis and that many many people with all sorts of different medical conditions get labelled as IBS - but I do think you may have trouble getting doctors to revise their diagnosis based on the nature of your pain. The symptoms which rule out IBS are fever, unintentional weight loss and passing blood. If you have any of these, then a doctor should be looking for a diagnosis that isn't IBS. If you don't have any of those, you'll probably have to have further tests and see if anything else is found.

My blood tests are often normal and I've had normal urine and stool tests too. My blood tests have been abnormal at times, but definitely not always. I had to have an endoscopy to be diagnosed.
 

David

Co-Founder
Location
Naples, Florida
While you may also have IBS, IBS does NOT cause inflammation. Inflammation doesn't necessarily mean IBD, but they cannot pawn the inflammation off as IBS and need to determine if it is acute or chronic and what is causing it.
 
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