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Reaching out to the Crohn’s Community for help

I was diagnosed with Crohn’s about 10 years ago. I had gone to see a doctor when around the holiday season, when I’m working out less and eating a little more, I lost a significant amount of weight in a fairly fast amount of time (40lbs over about 6 weeks). After the initial scare of an unknown illness that up until then I had vaguely heard of, and the bounce back of my weight I choose to just “manage” my symptoms. I figured between diarrhea meds and holding off eating when out and about was easy enough, and I had reservations about starting a biologic due to the immunosuppressive nature of the drugs.

Fast forward a decade to 2019 and my Crohn’s started making the biologic choice for me. In early April of that year I had what I thought was a hemorrhoid that wouldn’t go away (with as much as I was going to the bathroom it made sense). One day, a week or 10 days in, I noticed that I felt what I thought to have been a small “accident” as the seat of my pants felt wet when I stood up. I went to the bathroom to clean myself up an noticed that what was present was not fecal matter. 20 quick minutes online and I read enough to convince myself that the hemorrhoids were excreting some sort of fluid and let it go.

At this point I didnt have a family doctor or GI as my wife and I had just relocated back east, so a week of “leakage“ later and I go to the walk in clinic. I get a guy my age and I mention I have Crohn’s and I think what is going on is related to it. I explain my symptoms and (although he doesn’t believe so and sends me home with a cyst diagnosis) ask if it could be an anal fistula. Sure enough I had multiple fistulas and a number of perianal abscesses

I started on Remicade September of 2019 with 8 week infusions, now on 6 weeks. I had a follow up colonoscopy and endoscopy today and was told that the Crohn’s is dormant and the meds are doing what they need to do. What’s confusing to myself is I feel worse than ever. My stool is sand consistency at best. I’m in the restroom minimum 5-7 times a day, and 20 minutes after I eat. I get so nauseated at times I cough until I dry heave to calm it down. As strange as it sounds some things I can’t explain, like “tasting a feeling” or “feeling a taste” but it’s not quite one or the other.

Biopsies are pending of the esophagus, stomach and bowel, but 2 years in to find out I’m better but not, is where I start looking at this from other angles. Are there any similar stories? Anything that someone has thought was Crohn’s related that turned out to be something else? Any other autoimmune diseases that track along with Crohn’s that need specific testing? I’m wondering if we are blaming the Crohn’s for some other issues harm

Appreciate any feedback


Staff member
New York, USA
Hi Ash nd welcome to the Forum. It sounds like since you saw improvement with Remicade, that is definitely helping with the Crohns'. As far as the continuing symptoms but clean scopes, some things to look at (these are just suggestions, I'm not a medical doctor!!)- gall bladder issue, motility issue, how are your bloodwork numbers? Are all your vitamin levels ok including D and B12?

my little penguin

Staff member
Also add did they do an mre (mri with entography) to image small intestine and a capsule endoscopy (pill cam ) ?
These look closely at the small intestine which is quite long to determine if there is damage there
The majority of the small intestine can not be seen by a scope