If steroids help, does that mean it is IBD after all?

[CharlotteLucas]

GI originally said, after scopes and a pill camera, that there was nothing wrong. But my primary doc went over my paperwork and he said it did indicate some inflammation, so he conferred with GI and then GI had me come back in. GI said they usually attribute the level of inflammation that I had to the bowel prep itself, unless the patient has symptoms. I guess it took my primary care doc calling back to get him to hear my symptoms: 100 pound weight loss in 15 months, pain, daily mucous-y diarrhea, loss of appetite. So since I have symptoms he prescribed 10 days of a steroid as a test. If inflammation is cause of my symptoms, he says I should see "a night and day difference." I am to call after 10 days and then if steroid helped he will prescribe something better longterm (he did not say what.)

This is day 5. I could tell a difference the morning of day 2. Diarrhea has gone from 3 or 4 bouts in the early morning to 1 time (or even less, one day it was a normal BM. I really don't think I have had one of those in over a year.) Pain is definitely less. Not gone, but less.

So is this tantamount to diagnosing me with IBD? If steroid helps, what else could it be? What other medicine could he mean other than a biologic or immunosuppressant, which would have to be prescribed for something, right?
They don't prescribe those for IBS.

I don't want Crohn's but after 2 months of testing I really wanted to know something and be out of this limbo. My weight loss seems to have stopped (though I think it is partly because my body has adapted to getting by on much less food. I had few weeks there where I was eating maybe 600-800 calories a day and I think that has an effect on your metabolism, though I am eating more than that now.) The pain was better while I was eating low-fiber (and the weight loss stopped during those low-fiber weeks) but when they said it was not IBD I started eating raw vegetables and nuts and whole grains again. And the pain gradually came back until last Saturday I actually screamed at one spasm. But Sunday after one dose of steroid the pain was way down. I had some pain and a little diarrhea today, day 5, which has me confused. But still diarrhea is down by two thirds anyway, and the pain is way less.

Do doctors diagnose people with something else bowel related that they would treat with a steroid? My primary care doc feels sure this is Crohn's. I think so too. But I am not really sure what the GI is really thinking, if he is saying it must be IBD if the steroid helps, or if he has some other hypothesis.

Thanks everyone,
Charlotte Lucas (not my real name!)

 

[ronroush7]

I have Crohn's Disease and I have trouble with nuts and a lot of vegetables. I would probably lean away from IBS although I am certainly no expert. Let us know.

 

[ronroush7]

I knew I had Crohns twenty five years ago. I was just diagnosed with IBS earlier this year. Don't know if it is significant but I was on steroids long before I was diagnosed with IBS.

 

[Robrich]

I dont think you can diagnose IBD just because it responds to steroids although that is a good indicator and likely rules out other causes like infections. Steroids suppress inflammation but not just from IBD. Not a doc but it seems the inflammation could be Crohns or maybe something else, even parasites perhaps.
Did they do biopsies?
Cal protectin?
Stool culture?

 

[CharlotteLucas]

They did test for Celiac, parasites, and a couple of bacteria, all negative. He did not do Fecal Calprotectin. I don't think they stained for Mast Cells either. One place in my paperwork it actually says "normal mucosa and areas of inflammation consistent with microscopic colitis" or some kind of doubletalk that doesn't make sense to me. Got to look up the exact phrase.

 

[ronroush7]

They did test for Celiac, parasites, and a couple of bacteria, all negative. He did not do Fecal Calprotectin. I don't think they stained for Mast Cells either. One place in my paperwork it actually says "normal mucosa and areas of inflammation consistent with microscopic colitis" or some kind of doubletalk that doesn't make sense to me. Got to look up the exact phrase.

My doctor did fecal calprotectin recently and it came back fine . He wants to do another stool test. I am wondering if it is one mentioned above.

 

[Robrich]

Microscopic colitis is different than Crohns and far less serious.
It can only be diagnosed with a biopsy.
Were you prescribed budesonide or prednisone?
Budesonide is the standard protocol for microscopic colitis.
There is a thead Here on microscopic colitis.
If that's what you have then immune suppressants and biologics are not the correct treatment

 

[ronroush7]

Crohn's and ibd

 

[Cat-a-Tonic]

Hi CharlotteLucas, I'm actually in a really similar situation. I've been ill with presumed IBD for about 6 years now. The first year I was ill, all of my tests were normal or inconclusive. I asked to try a steroid, and I was given a 5-day trial of prednisone. It was definitely like night and day for me - within an hour I noticed a difference, and within the first 24 hours my symptoms pretty much disappeared. I felt so fantastic!

As others have mentioned, steroids really only work on inflammatory conditions. There are other illnesses that are inflammatory and can cause IBD-like symptoms - Lupus, Addison's, Behcet's are a few that come to mind. So, once I had a good reaction to the steroids, my doctor set about to rule out other inflammatory conditions. I've had a lot of tests, mostly bloodwork, and we've ruled those out, so at this point although I'm not technically diagnosed, I have a tentative diagnosis of presumed IBD. So, to answer your question, yes and no - I'm not fully diagnosed but my doctors treat me as though I have IBD and I respond well to those treatments. If your doctors have other hypotheses, let them test and confirm or rule things out. For me, that's what it took - a good response to steroids plus ruling out other possible suspects means it's pretty much got to be IBD for me, just not sure yet of the finer details. I hope that is helpful to you!