Content Warning: This post contains detailed descriptions of gastrointestinal symptoms, medical procedures, and health experiences.
It’s been almost five weeks since my last post, and I have some genuinely good news to share. Things are looking up.
The Steroids Are Working
As I mentioned in Part 2, I started on steroids—budesonide, specifically. The regimen is 4 weeks of 3 pills (3mg each) per day, then 2 weeks of 2 pills a day, and another 2 weeks of 1 pill a day before tapering off completely. I’m currently in the middle of the 2 pills a day phase, and the improvement has been remarkable.
I’ve been able to eat a lot more things I couldn’t tolerate before. Foods that would have sent me running to the bathroom or left me doubled over in pain are now back on the menu. But the most amazing part? My bowel movements have become normal.
Let me emphasize that for a second. For the better part of my life, I’ve suffered with diarrhea and only the occasional periods of solid stool. I was always running to the bathroom, sometimes multiple times in an hour. I figured I just had a fast metabolism. That, and I knew I didn’t always eat the healthiest stuff. But it seems it’s been a bit more than just that all this time.
Having normal, predictable bowel movements feels almost surreal. I didn’t realize how much energy I was spending just managing my digestive issues until they weren’t constantly demanding my attention.
Ruling Out SIBO
We also did the SIBO test to see if Small Intestinal Bacterial Overgrowth might be causing the gas and bloating issues I’d been experiencing. The results came back normal, so that’s not what was causing the problem.
Honestly, since I’ve been on the steroids, I haven’t had the gas issues at all. That constant, painful bloating that would send me to the ER? Gone. It’s been an incredible relief.
A Few Side Effects
It hasn’t been completely smooth sailing. Recently, after changing to the 2 pills a day dosage, I’ve had a couple of periods of side pain and gotten a bit bound up. Nothing like what I was dealing with before, but noticeable enough that I needed to address it.
I take a pain killer and stool softener when it happens, and that helps. The bigger lesson I’ve learned is that I need to stay extra hydrated. When I let my water intake slip, I pay for it pretty quickly.
Preparing for Biologics
While the steroids are managing my symptoms, they’re not a long-term solution. My doctor has been preparing me to start biologic medications, which means getting my vaccinations up to date first. You can’t get live vaccines once you’re on biologics, so we needed to handle this now.
Over the past few weeks, I’ve gotten quite a list done:
- COVID vaccine booster
- Flu vaccine
- Pneumonia vaccine
- Updated Tdap
- First round of the shingles vaccine
I spaced them out to avoid overwhelming my system—two vaccines, then two weeks later another two, and just this week I got the shingles vaccine. Thankfully, I didn’t have much in the way of side effects from any of them. A little soreness at the injection sites, but nothing that slowed me down.
The Big Decision: Which Biologic?
This is where things got interesting. My gastroenterologist recommended Remicade as the first-line treatment. It has the longest history of success, particularly with healing fistulas, and there’s a lot of data we can reference about how well it works.
But I wanted to do my research. I spent time reading up on Remicade, Tremfya, and Skyrizi—understanding how they work, what the side effects are, and what the treatment experience looks like for each one. I even used AI to help me put together a detailed comparison and answer my specific questions.
After going through everything, I decided to rule out Remicade for now. My main concern was that it weakens your entire immune system, whereas Tremfya and Skyrizi are more targeted in their approach. They work by blocking specific parts of the immune response rather than suppressing everything.
When I discussed this with my gastroenterologist, he said he was okay with that decision in my case. The only reason he’d pushed for Remicade was its long track record with fistula healing. But since my fistula seems to be doing okay after the surgery—the abscess hasn’t returned, and there haven’t been any complications—we decided we could try one of the newer medications first.
Tremfya vs. Skyrizi
That left me choosing between Tremfya and Skyrizi. Both are relatively new for treating Crohn’s disease, so there isn’t as much long-term data on how they help with fistula healing specifically. But they’re showing promising results overall, and both have roughly the same risk of infection.
The deciding factor for me? The injection method.
Skyrizi requires starting with three IV infusions, one every 4 weeks. After that, you use an On-Body Injector (OBI) at home, which is a device that attaches to your skin and takes about 5 minutes to deliver the medication.
Tremfya, on the other hand, can be started with injection pens from the beginning. No IV infusions, no device attached to my body for 5 minutes. Just a quick injection and I’m done.
It might seem like a small thing, but when you’re looking at a treatment you’ll be doing every 8 weeks for the foreseeable future, those details matter. The injection pen felt simpler, less intimidating, and more like something I could easily manage on my own.
So Tremfya it is.
Where I Am Now
I’m feeling much better than I have in months. The steroids have given me a glimpse of what life without constant digestive distress can feel like, and I’m cautiously optimistic about maintaining that with the biologics.
Most importantly: I haven’t had any hospital visits recently. That’s a huge win.
In a few weeks, I’ll be starting Tremfya. I’m nervous, I’ll admit that. Starting a biologic is a big step—it’s acknowledging that this is a chronic condition that needs ongoing management. But I’m also hopeful. If the biologics can keep me feeling even close to how the steroids have made me feel, that would be life-changing.
In the next part of this series, I’ll share my experience starting Tremfya and how my body responds to it. If you’re navigating treatment decisions for Crohn’s or any chronic illness, I hope sharing my journey helps you feel less alone in the process.