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My Story

A

Adjita

In the fall of 2016 I started having the most intense "stomach bugs" I had ever experienced. My gut, just above my belly button, would feel like someone was twisting it- ringing it out almost. First I would have diarrhea and once that side was empty I would vomit anything I ingested including water. At the time I was living in a noisy neighborhood in Brooklyn and going to grad school classes in the evenings/working a few part time jobs in the daytime- so I was a little stressed.

I saw a gastro and we started exploring what could be wrong, the endo showed nothing, the blood tests were inconclusive and after my colonoscopy showed nothing I remember crying "I swear I'm not making this up!" The pain I felt was the rawest kind, it would stop my words and cause a full body convulsion.

The next time I had an "episode" I went straight to get a CAT scan and sure enough, segments of my small bowel were inflamed.

Small bowel crohn's is the hardest to detect and reportedly the most painful, so I started Humira in January 2017. I was responding to meds until today, I thought it was a flare up but it's lasted longer than it ever has so maybe it's a virus. It's hard to tell with small bowel because 1) There's not that much literature I understand specifically about it and 2) I think it presents differently than other forms of Crohn's. Either way, I've been considering myself lucky, no surgery and relatively rapid response to the meds!

Anyway, I'd love to hear from others with small bowel.

Thanks :)
 
Jabee

Jabee

Hi. I have small bowel crohn's as well. Segments of my duodenum, jejunum, and ileum have been inflamed both individually and collectively over the last decade. I've been fortunate to have responded fairly well to a combo therapy of both high dose PPIs and Entocort. Last spring I was hospitalized again with a partial obstruction so my GI and I are now considering Humira. I didn't have a lot of pain when my duodenum was inflamed (with a stricture, too), but when my jejunum and ileum were involved the pain was unbelievable. I'm still having pain from last spring but the inflammation has healed. The inflammation shows up better with a CTE than it does on scopes. I also tend to dismiss my pain until
It gets so bad I can't eat or drink and have to be admitted to the hospital. My scopes are then a couple of months after IV then oral prednisone so they come back clear. That part is really frustrating. I don't usually have diarrhea; I'm usually constipated although over the past couple of months I've been having diarrhea so
I am wondering if it is now affecting me at the beginning of my colon as well. I'm really sorry you are't feeling well right now.
 
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