I was wondering if anyone who has been diagnosed with Crohn’s disease could help me.
I developed a fistula in July’s of 2021. I have no family history of IBD disease. When I realized most people who get fistulas also have IBD I started having severe stomach pain 24-7 I couldn’t eat for months.
I did my first colonoscopy which was normal had some polyps removed and biopsied everything was fine.
My endoscopy showed acid reflux but nothing else.
Capsule endoscopy showed slight erosion in the duodenal part of the intestine. I have suffered from chronic headaches for years and have abused NSAIDS terribly. However my GI was not sure if that could cause redness or inflammation so he put me on budesonide assuming it’s Crohn’s. The budesonide did nothing. To be 100 percent sure he did a colonoscopy to go further into the internal ileum.
The colonoscopy was completely clear all biopsied fine.
Still having pain I went to another GI.
Calprotectin stool sample number was 5.. he said normal.
Blood work cbc metabolic and inflammation markers all completely normal.
MRI showed no fistula even though my previous MRI said I had one. Went to 2 rectal surgeons where one said I don’t have a fistula and one said I did but it closed up on its own and just to watch it. The second MRI I had actually said it is now a healed fissure? Very strange.,
MRI enterography showed no structures, no peri anal disease, stomach clear, small bowel clear, internal ileum clear, and no stricture however the report also says this
Hyperadvancement of the wall of the sigmoid colon could be inflammatory related or incomplete distention. Possible fibrofatty proliferation and engorgement of the mesenteric Vessels in the sigmoid colon. Findings may represent ibd .
The GI said he looked at everything and there is no evidence of Crohn’s.
I sought a third opinion from another GI and he did bloodwork again all normal. He said the erosion in the capsule endoscopy is concerning. He suggest a Prometheus test to rule this out.
If anyone can give me any advice I get pain once in a while in the stomach and lower right side but I am so stressed and have such anxiety from this. I was also taking anti anxiety meds and ambien for sleep for a while to relax and I stopped all that cold turkey I thought maybe those drugs were screwing up my stomach but I can’t stop thinking about this anyone who reads this and responds I appreciate it I know it’s a very long message lol