About Crohn’s disease on the constipation side of things

Sorry to hear how difficult it has been. I don't know what to say about the constipation. My diagnosis is not clear, and I think that the constipation is due to the inflammation, not allowing normal, well-formed stools. I say this because I have changed my diet to a lot of water, prune juice, fruit, and vegetables. And it is only when the inflammation eases a bit with a steroid enema that I can pass a copious, well-formed stool.
So far, I have not responded to any medication, two biological trials, and the last trial with Mesalamine, both suppositories at night and tablets during the day. It has been 3 years of a nightmare. My GI doctor, who is very good, initially thought it was Crohn's, but is no longer sure.
I am wondering if anyone out there with Crohn's or Ulcerative Colitis can share what has worked?

@claudiod
I also have Crohn’s Disease with constipation. Have you had a colonoscopy yet? My colonoscopy showed that I have a torturous large intestine which is the cause of the constipation. My GI doctor put me on Trulance 3 mg daily and I still take MiraLAX each afternoon. It works but the timing of BMs is a bit unpredictable acting sometimes in one hour sometimes in 3 hours. It’s very frustrating but at least I have BMs without straining. It can be sort of explosive.

@skypledger
Hey! I had a colonoscopy a year ago and it showed that I had inflammation in my ilium where the small intestine is right before it meets the large and they pushed it away saying I had irritation due to prep and now a year later running into more issues and high calprotectin levels I did a ct that showed inflammation in the same spot so they are doing that it is Crohn’s now.
I am really not a fan of my gastro that I go to and am waiting to get in else where it’s just taking a long long time. The constipation is just miserable tho and nothing seems to work well.
I am currently in the workes of doing a clean out and then I am going to use things like stool softeners and Maralax religiously to try and see if I can keep some relief, but it’s like nothing works besides the hardcore laxatives.
IBS-c meds don’t seem to do much for me since I’m having issues with my small intestines and they only pull water into your large ones, I tried linzess and that seemed to make things worse to once I clean out I am going to try IBSRELA.
The constipation part is just miserable and my gastro is telling me that since I don’t fall under normal symptoms being that Crohn’s is normally diarrhea that my bathroom struggles and stomach distention isn’t due to the crohns probably which makes zero sense to me. Are u on biologics for your Crohn’s?

@claudiod
That sounds miserable and I can definitely relate to u, did u have a colonoscopy done? And do they know specifically where u are inflamed?

Yes 1 colonoscopy and 2 sigmoidoscopy and the location is in the rectum

@claudiod
If u don’t mind me asking, what biologics were u on because I know specific ones treat different spots?
Also did u ever do a calprotectin test, and was it high?

1st one Inflectra infusion ; 2nd one Rinvoq.
The calprotectin test has gone up from 29 in October 2023 to now 990 (January 2026)

Hi @claudiod - what was your doctor's interpretation of this rise in the calprotectin test?

Just saw yesterday and he is not sure and said the case is very atypical and is not Crohn’s nor Ulcerative Colitis. He wants to do a new colonoscopy very soon

Is he a mayo Dr? My gi outside of mayo had a hard time diagnosing since I have colonic crohns… but mayo figured it out quickly