Newbie with lots of questions

Hello, All! I'm not even sure where to begin! I have been browsing around the site, trying to find a thread to help me, but so far I haven't been able to. I will admit, there is SO much info, I just may not have gotten to it. That being said....

I have suffered from constipation my entire life. My mom says I was a constipated baby, and it has just gotten worse throughout my life. Along the years I have been diagnosed with colonic inertia, chronic idiopathic constipation, celiac disease, and now Crohn's. I've been calling them my "4 C's" :P The Crohn's diagnoses came in March 2023, but my doc believes I've had it for the past 8-10 years. I was started on Humira to try to heal a fistula connecting my terminal ileum and cecum, control the Crohn's, and try to avoid surgery. I have had abdominal pain for years, that improved somewhat once I went gluten free, but never really resolved completely. I am on Motegrity for the CIC. Bowels are still off & on.

I just had a 3 month check since I have started the Humira. It was an MRI enterography. It appears the fistula has healed (yayyyy), but there is a small stricture now in the terminal ileum/ileocecal valve. Doc does not think this is contributing to the constipation. The abdominal pain continues and seems undisturbed with whether I eat/drink or don't. The guy (my tummy) is just a jerk no matter how nice I am to him. Doc says that surgery at this point is not necessary, but that if I am telling her I am desperate to try anything, then we can do an ileocecectomy. That there are no guarantees it will help, but she can't say it won't either.

I AM desperate. I do not remember a time in my life where I didn't have pain, and the thought of it is so enticing even if the chance is small. I am terrified of surgery though! Has anyone here had this surgery, & what was your experience? It would be done robotically (always a chance for open of course). Thanks for reading all this! I appreciate any advice.

The stricture was found on the MRI enterography.

I had a c-scope with bx in Jan. 2023, then a CT enterography to confirm the crohn's (which is where they saw the fistula). I had a c-scope 8 years ago that showed ulcerations in the TI, but I had a different doc at that time, and they opted to "watch it". Another c-scope 5ish years ago looked a bit better.

I'm not sure of the size of the stricture- I honestly didn't even think to ask that, but I will!
No discussion of an additional C-scope at this time.

Pain is usually lower abdomen (unless I get glutened- then it's upper/lower/everwhere).

Thank you for taking the time to respond!

No, they didn't see the fistula- they think the inflammation & ulcerations were so bad it was difficult to ascertain. I am under the assumption the stricture is new- once the humira started healing everything it scarred down.

I know it's hard to say if surgery will help. I'm not looking for a definitive answer, but rather the different outcomes of others who may have had a similar experience. I understand everyone is different.

I will look there, thank you!

Hello! Yes, I did have biopsies in January, and on my original c-scope 8 years ago. The original biopsies were blown off IMO, even though all my inflammatory markers were also elevated. The scope 5ish years ago was good- mild inflammation, but no ulcerations, then this past January the TI was a mess! Severely inflamed & ulcerated. They biopsied it & it was indicative of Crohn's, so I was sent for a CT enterography to confirm. That's how the fistula was found, which I was told is definitively Crohn's.

The stricture dilation has not been mentioned, so I will ask my doc about that also. Thank you for the tip!

I looked at my test results (MRI) as suggested for the size of the stricture, but all it says is: "there is a short segment stricture in the distal small bowel in the right lower quadrant on image 36, series 17 with mild hyperenhancement in this segment of bowel in the distal ileum, without small bowel obstruction."

I've had C since a baby, so I don't think the stricture is the cause of that (nor does my doc), but I'm curious if the resection may improve things with the C, as I see lots of people have D after surgery. Just desperate & hoping surgery would maybe even things out a bit?

I also checked out the archives as suggested. There is a lot of good info there, however I couldn't find anything on the robotic resection. Seemed like a lot of the info was from several years ago. I'm still digging!

Thanks again for the suggestions!

I am on a prescription drug called Motegrity. It does help, but i still only have a couple BM's/wk.

Yes, I have an appointment in 1.5 weeks to discuss surgery/other options. I will definitely ask about a stricture dilation. And this surgeon is one of the top in my area, so I am lucky there. She said she's a "weird" surgeon cause she tries NOT to operate on people, lol. Anyway, guess I'll see what happens and that appointment & go from there as far as a second opinion.

I am so sorry to hear how much you suffered! I cannot even imagine how awful that must have been. I hope your currently stable with everything.

I'll add those places to my reading list, thx!