A Crohn's Update + Life After A Clinical Trial

Date: April 26, 2016 at 7:40 am- by Ali- Comment(s): 17

If you’re new around here, hi! I have Crohn’s disease. Here are a few posts that’ll bring you up to speed on my history with the disease:

April 12 marked my final clinical trial appointment.

Crohn's disease

SnapChat all day every day. (I’m aliontherun1, and I mostly just Snap stories of Ellie doing stuff and not doing stuff.)

In many ways, that’s exciting! Not only did the trial pretty literally bring me back to life, it also helped me rediscover a level of health I hadn’t known or experienced in years.

During my 112 weeks in the study, I was generally healthier than I’d ever been. After more than two straight years battling the most challenging Crohn’s disease flare-up of my life, this was a very welcome change.

In spite of a somewhat mild flare-up two months before our wedding in September (likely on account of stress), ultimately I was happy and healthy the day we got married and throughout our honeymoon. (BRB, breathing major belated sigh of relief.)

Crohn's disease

Imagine traveling to Africa mid-flare? Nooooo way.

While I may have received a placebo during my first two injection rounds in the trial (I don’t think I got the placebo, though), the drug ended up being a miracle for me. It’s no cure (there’s no cure for Crohn’s disease, laaaame), but it feels pretty close for now.

That, of course, brings me to now.

What now?

The trial is over, and that means a few things for me.

  1. I no longer get the mystery drug I was given every four weeks for the past 112 weeks. Mega bummer. As much as I hated going to the doctor every four weeks for lengthy, day-altering appointments, I sure did love the effects of that magical medicine.
  2. The drug worked beautifully, but it will not be approved anytime soon. It still has to go through at least one more phase of trial-ing before it’s FDA approved and is eventually available to patients.
  3. Yes, there might be a compassionate extension program which would possibly allow me to keep getting the drug before it’s fully approved. But my doctor’s office has been largely unhelpful in helping me navigate this process. So I’m not banking on that option.
  4. My doctor — my life-saver — recently left the practice to be the Chief of Medicine at NYU. He’s such a baller. I call him Dr. Webber, like on Grey’s Anatomy. That’s not his name, but he’s nice about it. I also refer to him as the Chief of Surgery, and he regularly reminds me that’s not at all his job nor title. Anyway, he left the practice, and I was planning to keep seeing him at his new location after the study was complete. But I can’t do that, because my insurance says I have to see doctors in my new location, which is New Jersey! (What. the. hell.)

So yeah. What now?

Crohn's disease

Happy and healthy with no core strength whatsoever.

I emailed Dr. Bosworth to ask for doctor recommendations in New Jersey. I trust his opinion more than a random Google search. He emailed me back within five minutes — from Israel, where he’s celebrating Passover. He is the best person in the world. Once I have his recommendations (you know, after Passover), I’ll start making calls and meeting with new doctors until I find Dr. Right.

And in the meantime, I’ll be doing my best to handle any stress that comes my way with a level-head (Brian, stop laughing), since I know stress triggers flares.

I’d love to not be on any medicine going forward. I’m not a big fan of medicine, especially not in the long-term. But I also know that my body has a historically difficult time bouncing back from a flare-up, and that it’s easier to take preventative measures than to wait until I’m on my death bed and to try and revive myself.

Crohn's disease

Happy hugs! Healthy hugs!

Before the trial ended, Dr. Bosworth and I discussed options, and he advised not going off medicine entirely based on my history and my “angry colon.” (The trial made it un-angry, but now it might get angry again! What a temperamental bitch.) He suggested Entyvio as an option, and said I may finally be eligible for Stelara which, while not yet approved for Crohn’s (in spite of all its success), is approved for Psoriasis, and lucky me, I have both a chronic digestive disease and a dry, itchy, peeling scalp. (BRIAN, U R SO LUCKY.)

So that’s where I’m at. Healthy, hoping to stay that way, and officially a Clinical Trial Survivor!

Crohn's disease

Running happy! Running healthy! (Running at Citi Field!)

I was so hesitant to enroll in this clinical trial because I was so scared and nervous and didn’t want to get the placebo since I was really sick at the time and the trial was a last resort for me. But I am so glad I went for it, and am forever grateful for the doctors, nurses, and amazing people at the Jill Roberts IBD Center who gave me my life back. The past two years have been the best of my life, and that wouldn’t have been the case if I didn’t have my health along for the ride.

TBD what exactly happens next. So in the meantime, I’m appreciating every single day of being healthy.

Health is a wonderful thing. Don’t take it for granted! (I’m so preachy this week. I’m sorry. Sarcastic list-based posts to resume shortly.)

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