HealingWell
Search Close Search
☰

Daughter may have Crohn’s

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/13/2025 4:32 PM (GMT -5)
Hello, I am a newer member of these boards and since I have UC, that is where I normally post. My 18 year old daughter had told me a few months back that she was having some blood in her stool. No other symptoms. Of course I asked all the logical questions…any diarrhea, was she constipated, straining, any pain, on her period, etc. No to all. Her appetite has been fine, she has not complained of any pain or digestive issues. No fevers. Due to my unmistakeable and obvious symptoms of UC, I wasn’t too concerned at first and we took a wait and see approach for a bit. Ultimately she went to the GI in November. Bloodwork looked okay but FCP was a little over 700. Thursday was her colonoscopy and although I was somewhat prepared for a diagnosis of UC, or perhaps proctitis, I was not prepared to hear Crohn’s. My heart is broken. At least I was 34 before my life was changed and honestly I’d rather it be UC. I don’t know a lot about Crohn’s but it seems to me like it’s worse. Strictures? Fistulas? Are these things always part of having this disease? I feel terrible. Although it’s not official, I think it’s pretty likely at this point. If anyone can offer any input, things we should do or ask, I would very much appreciate it. I have a lot of knowledge about UC, of course, but that’s not so useful.

I’m going to post below what I think is the relevant information from her scope report. What I understand is that the inflammation is at the end of the small bowel in the ilium and appendiceal orifice which is why the doctor believes it’s Crohn’s. My daughter does take ibuprofen for cramps during her period, but I wouldn’t think that kind of use would cause this. And of course I have spent all evening Googling and there can be other explanations, but Crohn’s is number 1. Everything else looked ok but she took biopsies to look for microscopic inflammation throughout the colon. Next step is MREnterography and possibly a capsule endoscopy. (She also has super mild psoriasis which 4 of our 5 kids have all inherited from their dad. None have been on prescription medication for it or had more than a very mild case.) Here’s what I pulled from the report:

The perianal and digital rectal examinations were normal. Scattered mild inflammation characterized by erosions,erythema and aphthous ulcerations was found in the terminal illium. Biopsies were taken with a cold forceps for histology. Localized moderate inflammation characterized by congestion
(edema), erosions, erythema, friability and aphthous ulcerations was found at the appendiceal orifice. Biopsies were taken with a cold forceps for histology.
Biopsies were taken with a cold forceps in the entire colon for histology.

The retroflexed view of the distal rectum and anal verge was normal and showed no anal or rectal abnormalities.
- Mild inflammation was found in the ilium secondary to ileitis. Biopsied.
- Localized moderate inflammation
found at the appendiceal orifice
secondary to colitis. Biopsied.
- The distal rectum and anal verge
normal on retroflexion view.
- Biopsies were taken with a cold forceps for histology in the entire colon.

Thank you in advance!
Posted 1/14/2025 1:17 AM (GMT -5)
Unfortunately, yeah, that sounds like it's probably Crohn's disease. There's a small chance it's from the ibuprofen use, but that's pretty unlikely, especially with the family history.

I'm sorry for you and her.

The good news is that it doesn't seem to be very severe, you caught it early, and there are multiple treatment options available these days.

Many people find out they have Crohn's only when they've gotten pretty bad off and already need a surgery.

The MR enterography is a good next step to assess the rest of the small intestine. I wouldn't do the capsule endoscopy because of the small risk of it getting stuck if there is a stricture (a narrowing) in the small intestine, something that sometimes happens with Crohn's. The capsule is better reserved for when the MR enterography is clear or indeterminate, and you're unsure of the diagnosis. That's probably not going to be the case here, as the scope saw the ulcers in the TI and they were biopsied.

Hopefully the MR enterography comes back showing only the terminal ileum and beginning of the colon are affected, with the rest of the small bowel spared.

That would be a very typical presentation of Crohn's, which commonly affects that area (where the small bowel and colon join).

Yes, over time fistulas and strictures can happen with Crohn's. Historically, most people with Crohn's (probably 70% or so) would develop one or both, sometimes already at diagnosis and sometimes years or decades later.

But with the newer treatments, complications like fistulas and strictures can be prevented to a fairly good extent. And even before modern treatments, not everybody with Crohn's developed such complications.

So it's good that you got the appropriate tests done, got what appears to be a solid diagnosis (pending biopsy results), and are moving forward with the next appropriate test (MRE). After that, a discussion with the doctor should be about which medication to start with. They all have pros and cons, and what's best is different for each patient.

Good luck and keep us updated.

Post Edited (beave) : 1/14/2025 2:29:04 AM (GMT-5)

Posted 1/14/2025 7:43 AM (GMT -5)
Nattyjk,

FIrst of all, (and likely due to your experience), you're doing everything right. I would echo all of the sentiments that @beave has pointed out. It certainly is pointing to Crohn's, but until those biopsy results come back, you won't know for sure. MRE follow-up is a very good idea. I wouldn't rule out Celiac yet, ( unless they've tested already).

As mentioned, get her off of the Ibuprofen and onto Tylenol for pain.

I know as a parent, it's so hard to get this news. I've certainly been there. The good news is, she seems to be presenting fairly mild. If she remains mild to moderate, the scary things you mentioned like strictures and fistulas are much less likely. Often when finally diagnosed, things can be a real mess, as the disease has been left to run rampant, unmedicated/treated, without even lifestyle modifications. She seems do be pretty good right now. There's so much more hope now, even since my Daughter was diagnosed almost 20 years ago. The medications have improved dramatically, and in her lifetime, the improvements will continue even more dramatically.

Lastly, this forum is an excellent resource, and you'll get plenty of really good advice and support here. Keep us posted and good luck with things.
✚ New Topic ✚ Reply