Capsule endoscopy negative for Crohn's. Im relieved beyond words, but now what?

Cporosus1

New Member

Joined : Jan 2015

Posts : 14

Posted 10/24/2021 8:04 AM (GMT 0)

For around 10-15 years I have struggled with mildly increased bowel movements, "million wiper" sticky poops, and flatulence. I rarely have full blown diarrhea (less than once every five years) and I have no pain at all. I had a single perianal abscess/fistula 7 years ago, but I have had every test under the sun for Crohn's (including capsule endoscopy, fecal calprotectin, two colonoscopies, CRP, MRE, etc) and everything has been normal. Even my GIs are stumped as the capsule is the defining test to rule out Crohns. I have had no further problems with my butt, so they say it was a cryptogladular fistula (my uncle had one too). This isnt too surprising since I would often let my bowel movements just sit in my anus, so clogging the pores isnt a surprise. But Im still have sticky poops that require a million wipes.

Its important to note that Ive been on the SCD diet for 9 months and I was on the diet during my MRE, capsule and calprotectin tests. I have noticed that my wiping problem has been worse on the SCD diet. Im uncertain of what to do, since the SCD diet makes my symptoms worse, but I also have this (likely irrational) fear that the tests came up negative for Crohns because the SCD diet healed it...but thats not possible right? Particularly given that my symptoms remain? I have tried psyllium husk/metamucil as well but it just gives me craps and loose stools. I do not get cramps otherwise.

My symptoms have also not gotten any significantly worse or better over the past decade and a half. I did try cholestrymine for a month. For the first two weeks I felt like all of my GI issues were cured! But it seemed to stop working. Does that suggest bile acid diarrhea might be the issue?

Gallbladder problems run in my family and my uncle (the aforementioned uncle who had the fistula) needed his gallbladder removed. He also doesnt have Crohns. But whenever I bring up gallbladder my GI docs (Ive got to five!) blow me off since I dont have upper right quadrant pain (my uncle didnt either, but he suffered from constipation).

Any help is greatly appreciated! I feel like Ive tried everything.

straydog

Forum Moderator

Joined : Feb 2003

Posts : 19850

Posted 10/24/2021 2:03 PM (GMT 0)

Glad to read your testing has been all normal! A gi knows what to look for visually & also what the biopsy reports state too. There are telltale signs in the intestines when a person has either crohns or UC even if their disease is in remission. I think you can safely move on from having either disease. Stool consistency would not be a good marker to diagnose IBD because we often have IBS too.

There are so many different diets out there, I tried the SCD diet & it did nothing for my crohns. I've tried various ones like millions of others, personally there is a lot of money being made off of these diets, just my opinion, lol. My thoughts are perhaps someone with very low disease activity may do well on a diet. I do not follow a specific diet, I eat whatever agrees with me. Diarrhea has been a long standing issue for me, I always keep Imodium on hand, I never know when it will hit. I may eat something today without an issue but eat the same thing 2 days later & it's back.

I had my gallbladder taken out nearly 20 years ago. My problems reared up when I ate anything fried. I avoided fried foods, however, I had a weakness for fried fish at a particular restaurant. We would go there once a month to eat & I always got sick, radiating pain, throwing up & diarrhea afterwards. My gi sent me for an upper gi, it was normal, no stones. The next step was the HIDA Scan to see how my gallbladder was functioning. It was not functioning as it should be, so I had it taken out. Why not ask your GP to send you for a Hida Scan, you don't need a gi's blessing for that.

I suggest that you keep a food diary, yes it sounds boring but if you will track your food there is a good chance you can find what foods are triggering things. As I mentioned, I am out on the diet thing from trying so many in the past.

Take care.

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