u/Few-Citron6941

Alright y’all, I’ll try to give as much information as possible. Last year around May I started having horrible stomach issues that progressively got worse until I was unable to leave my house from September -mid October due to how severe and frequent my diarrhea was. I had already started the low FODMAP diet which didn’t really do a whole lot. I decided to be very strict with it and go gluten free entirely which actually helped a lot. I was still having some issues but much less severe.

When I was finally able to see a GI doctor, she suspected celiac disease considering that taking out gluten helped so much. I had a colonoscopy and endoscopy in November that came back clear for celiac (the bloodwork was also clear) so it was ruled to be IBS. I DID have active ileitis found in my colonoscopy. Well, my stomach issues never ended. I ended up shitting blood earlier this year and went back to the GI.

I got a CT scan which showed inflammation but not much else. I was prescribed budesonide because I have EOE, BUT this actually ended up helping my stomach issues as well. I had another endoscopy soon after, and they found that the eoe had decreased significantly. My GI doctor was surprised that my stomach issues had also improved dramatically (I was still having issues but not nearly as bad) so she decided to order a capsule endoscopy.

I did the capsule endoscopy about a month ago and it showed that about 50% of my small intestine had an unnumberable amount of small, but deep, bits of erosion. There were about 3 larger ulcers as well. I was told this was highly likely to be crohns considering the findings from the capsule endoscopy, family history of autoimmune disease, active ileitis from my colonoscopy, calprotectin showing increased inflammation (done it 3 times), and the improvement on Budesonide.

Last week I got a double balloon enteroscopy where they found nothing. The dr told me that he believes the budesonide is working and that’s why nothing was found. My normal GI messaged me and told me there is no evidence of IBD at this point. What do I do? I’m supposed to be stopping the budesonide in about 2 weeks and I know everything is going to go back to how it was, and I’m going to be suffering everyday again. Even currently I still can’t do everything I once did because my ass is so unpredictable. I did message her back saying that I am still having symptoms, and asked about the budesonide working well and that’s why nothing was found. She had previously told me that the protocol for crohns is to take Budesonide to get it under control then start biologics. To me it seems that the budesonide got it under control but now we’re not going to call it IBD at all. What else could this be?!

Has anyone had experiences like this with their diagnosis process?

Edit: I forgot to mention that from the start of this occurring, I was 150 pounds and dropped down to 120 within 2 months. I am now under 120 and continuing to lose weight. I am unable to gain any of the weight back.

Alright y’all, I’ll try to give as much information as possible. Last year around May I started having horrible stomach issues that progressively got worse until I was unable to leave my house from September -mid October due to how severe and frequent my diarrhea was. I had already started the low FODMAP diet which didn’t really do a whole lot. I decided to be very strict with it and go gluten free entirely which actually helped a lot. I was still having some issues but much less severe.

When I was finally able to see a GI doctor, she suspected celiac disease considering that taking out gluten helped so much. I had a colonoscopy and endoscopy in November that came back clear for celiac (the bloodwork was also clear) so it was ruled to be IBS. I DID have active ileitis found in my colonoscopy. Well, my stomach issues never ended. I ended up shitting blood earlier this year and went back to the GI.

I got a CT scan which showed inflammation but not much else. I was prescribed budesonide because I have EOE, BUT this actually ended up helping my stomach issues as well. I had another endoscopy soon after, and they found that the eoe had decreased significantly. My GI doctor was surprised that my stomach issues had also improved dramatically (I was still having issues but not nearly as bad) so she decided to order a capsule endoscopy.

I did the capsule endoscopy about a month ago and it showed that about 50% of my small intestine had an unnumberable amount of small, but deep, bits of erosion. There were about 3 larger ulcers as well. I was told this was highly likely to be crohns considering the findings from the capsule endoscopy, family history of autoimmune disease, active ileitis from my colonoscopy, calprotectin showing increased inflammation (done it 3 times), and the improvement on Budesonide.

Last week I got a double balloon enteroscopy where they found nothing. The dr told me that he believes the budesonide is working and that’s why nothing was found. My normal GI messaged me and told me there is no evidence of IBD at this point. What do I do? I’m supposed to be stopping the budesonide in about 2 weeks and I know everything is going to go back to how it was, and I’m going to be suffering everyday again. Even currently I still can’t do everything I once did because my ass is so unpredictable. I did message her back saying that I am still having symptoms, and asked about the budesonide working well and that’s why nothing was found. She had previously told me that the protocol for crohns is to take Budesonide to get it under control then start biologics. To me it seems that the budesonide got it under control but now we’re not going to call it IBD at all. What else could this be?!

Has anyone had experiences like this with their diagnosis process?

Edit: I forgot to mention that from the start of this occurring, I was 150 pounds and dropped down to 120 within 2 months. I am now under 120 and continuing to lose weight. I am unable to gain any of the weight back.