Edit, December 18, 2025: Although all signs point to mild Crohn’s Disease, there hasn’t been enough data for a formal diagnosis, which I had not realized until recently. My actual diagnosis at this point is “Ileitis” or inflammation of the terminal ileum.
IBD is found among 70-80% of PSC patients, but usually it is Ulcerative Colitis (UC). Although I have no symptoms, it was prudent to have me checked. From the colonoscopy on October 15th, it turns out my large intestine (the area impacted by UC) is entirely clear, but at the very end of my small intestine there are “erosions” with recent/active inflammation as well as signs that they’ve been there a while.
The biopsy analysis noted the inflammation is mild and it could be caused by NSAIDs. But I haven’t had any of that class of drug since April when my second liver enzyme test was elevated. Given the inflammation is acute (recent), NSAIDs as a cause are almost entirely ruled out.
My primary care doctor was very on top of it and made a referral to gastroenterology the next day. I called to make that GI appointment but apparently it takes a moment to assign me to a doctor and get those wheels turning. So I am to call back on Tuesday morning if I haven’t heard. I don’t know how long it’ll take to see someone and given the possible treatment paths I note below, at this point it seems quite possible that our previously expected January RV departure will need to be put on hold for a bit longer.
Next Steps (as far as I can tell at the moment)
- Initial appointment with a gastroenterologist
- Additional testing/imaging to see whether the inflammation is elsewhere also, as Crohn’s can appear throughout the gastrointestinal tract. Possibilities include:
- MR enterography to visualize the small intestine.
- Endoscopy to examine upper GI areas like the esophagus, stomach and first segment of the small intestine.
- Blood tests – tuberculosis test at a minimum, as I don’t believe that’s been done recently, but there may be others.
- Fecal calprotectin shows inflammation. They might want a baseline now even though the disease is mild so they can compare later & determine if treatments are working.
- Treatment plan
- Steroids
- Usually people start with steroids. Insurance often requires this as a first-line treatment.
- Likely Budesonide, which stays more in the gut than Prednisone. But when your bile ducts are compromised like mine, even the Budesonide is more broadly impactful.
- They seem to be prescribed for an 8-week course, followed by a 2-week taper, and another 2-week taper.
- If we go this route, I don’t understand how maintenance treatment will happen ongoing. If I’m asymptomatic, how do we know if it has come back? If it comes back, are we planning for me to be on steroids every couple months ongoing? That much steroid use seems like a bad idea overall.
- Biologics
- Biologic medicines block the specific immune pathways that drive Crohn’s
- There are some that can be self-administered (after a ramp-up at a medical facility) and could be used while we travel.
- I’ve read it is possible to get an insurance exception for cases where bile flow and liver function are compromised. I don’t know how likely this is or how long the wait would be.
- Right now I feel like I’d rather go straight to biologics because they’re a more proactive, ongoing, and proven way to eliminate inflammation (and therefore cancer risk). We’d need to keep syringes in the RV refrigerator and have them shipped to us on the road, but that doesn’t feel like a dealbreaker to me.
- Steroids
- Confirm the treatment plan is working
- Across the board I’m not sure how we know the treatment is working, given I have no symptoms.
- I’m sure this won’t be the case, but it would really suck to have multiple endoscopies/colonoscopies per year to determine inflammation.
Certainly there are unknowns for the path forward, but there are effective treatments for Crohn’s, unlike PSC. Our son was diagnosed with Crohn’s about 6 years ago and aside from a rocky start on the steroids, his disease has been extremely well-managed via infusions. I would hope for the same, albeit without the need to be anchored to a medical facility.
If it turns out my disease is truly just in the terminal ileum, this seems to be better news versus if I had Ulcerative Colitis throughout the large intestine. While UC is the more common finding with PSC and oftentimes treatment seems to be more straightforward (i.e. “just” a pill), I’m reading that UC can drive more long-term cancer risk than terminal ileum Crohn’s. While I could develop Crohn’s in the large intestine later, at least for the moment I’m thankful for those clear biopsies.
Either I’ll hear from them on Monday, or I’ll call on Tuesday morning. Given the possible timelines, I’m not letting this appointment-setting phase drag out. This was exactly the situation I foresaw that made me upset when Mayo delayed my initial colonoscopy by 3 weeks due to a lack of interdepartmental communication. Pretty frustrating to have lost that time already. Regardless, I’ll get things moving to figure out whether my steps 1-4 above are correct and how my questions about ongoing maintenance will be answered.
More to come!
Addendum: I secured an appointment on November 18th with a highly-credentialed gastroenterologist. There was an option to start with someone who finished his fellowship in 2023 on November 6th and talking with my parents helped me see that it probably was smarter to wait the extra 12 days for the more experienced doctor. In the grand scheme, this isn’t THAT long to wait to see a specialist.
Next up, I have a big testing moment on November 11th, with updated fasting bloodwork and another MRI so they can look at the blood clot. I will finally be able to sit down with a hepatology doctor in the Transplant department as a follow-up on November 17th, as I’ve only worked with a nurse practitioner to this point. Then the gastroenterologist the day after. Going to be a big couple days.