How Many Went From IBS To IBD?

[LodgeLady]

So my results from my upper GI and SBS show no active Crohns. However my Dr said because I am responding to Entocort and Pentasa that I still may have some level of inflammation not being picked up by X-ray. So the diagnosis still remains IBS with undetermined Crohns.

So my question out there is how many went from IBS to clearly diagnosed IBD? How many years with IBS before the change in diagnosis? I have a feeling I am right there but my symptoms are so mild and what was there has cleared up. So far I can count close to 30 years with IBS.

 

[Ihurt]

wow, I am surprised that the doctor actually gave you the entocort since it is a steroid with only an IBS diagnosis. I am glad it is helping you though along with the pentasa. I also have been diagnosed with IBS. I have had issues since 2012. I did pretty good for about 8 months and again am back in a flare since a couple weeks ago. I had many tests that did not find anything which is why I keep being told IBS, even though my symptoms are not typical for IBS. When I last saw my gastro doctor he also said that some gastroenterologists are prescribing Pentasa to IBS patients. They said that IBS can cause low levels of Inflammation they are finding out. I guess it is inflammation that is not usually visible when doing tests though.

 

[LodgeLady]

Well initially I did have colitis at the TE on biopsy and colonoscopy. But X-rays and a repeat colonoscopy don't show any active Crohn's. I was on lots of Pred and a short stint with Humira. So it's possible it all resolved. But because all my bloods and results show mild inflammation he's not 100% sure I don't have Crohn's and I continue to have symptoms and elevated sed rate with mild anemia. Sooo, he still feels IBS is the major contributing factor but again defaults to I can still have low lying inflammation which is why Pentasa is working ( and why Entocort did).

I want to know how many crossed over from IBS to full blown Crohn's?

 

[Khaley]

I was diagnosed with IBS at least as far back as 1990 and didn't get a Crohn's diagnosis until January of 2007. Even my colonoscopy and abdominal ultrasound I had in December of 2005, when I was clearly having Crohn's symptoms, came back normal. I felt like my doctor had given up on me after so many years, so a year later I changed doctors. Right off the bat he was interested in the fact that I had a history of parianal fistulas and abscesses. He started over on tests - ultrasound and CT scan - which both came back suggestive of Crohn's and then it was finally confirmed by colonoscopy with biopsies. It's so frustrating that it can take so long and we have to suffer so much before getting treatment. Sometimes I think IBS is just a synonym for undiagnosied.

 

[Gail Jothen]

So my results from my upper GI and SBS show no active Crohns. However my Dr said because I am responding to Entocort and Pentasa that I still may have some level of inflammation not being picked up by X-ray. So the diagnosis still remains IBS with undetermined Crohns.

So my question out there is how many went from IBS to clearly diagnosed IBD? How many years with IBS before the change in diagnosis? I have a feeling I am right there but my symptoms are so mild and what was there has cleared up. So far I can count close to 30 years with IBS.

I think I had undiagnosed IBS for about 17 years and last Jan. I was diagnosed with IBD: no c or d, but 9 ulcers in my small intestine. My diet makes a big difference in my pain and I never thought of diet until 3 years ago so for years I was eating many things I should not have. Oh, my son and family live in your town. I live 45 minutes away.

 

[UnXmas]

Sometimes I think IBS is just a synonym for undiagnosied.

This is definitely true.

I guess the difference in this thread, though, is whether IBS is (mis)diagnosed simply because tests haven't been performed, and whether IBS is diagnosed because test results are negative for Crohn's.

 

[2thFairy]

This is definitely true.

I guess the difference in this thread, though, is whether IBS is (mis)diagnosed simply because tests haven't been performed, and whether IBS is diagnosed because test results are negative for Crohn's.

I was labeled with the dreaded IBS simply because tests weren't performed. Many docs just assumed my issues were a result of a belly full of adhesions from previous surgeries and my type A personality, which is a reasonable conclusion, but after years of this it should have been investigated further and just wasn't. Eventually I just gave up. Many years later (18 years), my Ob/Gyn convinced me to try it again and this time I was heard. Got my UC diagnosis and immediate treatment.

 

[Absentminded]

I was also originally given a diagnosis of IBS, when in fact I have Crohn's. I struggled for 5 years (although I believe that my Crohn's symptoms began 5 years before that) on a high fibre diet, convinced that it would make me better.
Eventually I began throwing up every time I ate, going to the toilet 15 times a day and screaming in pain on the floor with crippling stomach cramps, at which point I went to A&E and was diagnosed immediately with severe Crohn's, without even having a scope (I had one a couple of days later to confirm the diagnosis.)

 

[Gail Jothen]

I was diagnosed with reflux for 20 years although my only symptom was pain behind my belly button. So only treated with PPIs which of course did not help and, according to my present and 5th GI doc, was not a good drug for IBS or IBD, which is what I really have. A pill cam diagnosed the IBD 5 months ago.