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:
- My history with Crohn’s disease
- The mental and emotional side of Crohn’s
- Enrolling in a clinical trial
April 12 marked my final clinical trial appointment.
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.)
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.
The trial is over, and that means a few things for me.
- 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.
- 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.
- 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.
- 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?
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.
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!
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.)
Awesome sauce!!!!!!! I was diagnosed with Crohns in 98, have been on a plethora of medications. A bowl resection in 2008 due to exacerbations running my life. Was crohns free up until 2013 ( at least I thought) and now I’m in Texas with a new doctor Whom I’ve only met twice, recently had a colonoscopy and being considered for Remicade. Was looking for some insight since the side effects scared the hell out of me. Thank you for sharing your story
Thanks for all of your stories about Crohn’s. I love your positive attitude and your focus on things that we can control!! I just read the W&G article on how to be a morning person (something I really need to work on) and thought of you. Then scrolled back up to save it and realized you wrote it!! Haha. Clearly you are an inspiration. Thanks for all you do. Fingers crossed you find a new Dr you love.
I feel your doctor sadness/frustration/confusion/mixed emotion. As a Crohn’s patient diagnosed 12 years ago, I had found and built a relationship with a doctor for 7 years. He suddenly and very unexpectedly passed away last Saturday. I am beside myself and struggling on so many different levels. Crohn’s is such an emotional disease that can result in a very strong patient-doctor bond.
I am so happy to hear that this drug was a miracle for you, but it’s such a bummer that you now have to go off it! Funny thing…my gastro doc’s name actually IS Dr. Weber (one B though). LOL. Anyway, just wanted to tell you that I started Entyvio a year ago and it has been my miracle drug 🙂 If that’s the route you go I hope it works as well for you as it has for me!
I’ve followed your journey for a while now and I’m so happy to hear that the clinical trial worked so well for you! I’m sure you’ve done your own internet searching, but I came across this article on compassionate use that I thought may be of some interest to you. http://www.cnbc.com/2014/08/05/a-case-for-compassionate-use-when-unapproved-drugs-are-the-only-hope.html
I’ve recently experienced some of my own health issues and I’ve learned that you have to be your own health advocate, even though battling doctor’s offices, insurance companies, and big pharma is the last thing you want to spend your energy on.
Thank you for the reminder to be grateful for good health. It sure is something I take for granted, but shouldn’t.
So happy that you have been healthy and the trial worked so well for you. Sending positive vibes that the next steps in treatment keep you there!
I have nowhere near the history you do but after a year of being very sick, when I finally got into remission with Remicade, your perspective on having health changes so drastically. Sounds cheesy but I do not take it for granted anymore!
So glad you felt so well during the trial, and that you contributed to valuable research!! As another IBD sufferer, I’m grateful for that. I also know how frustrating it is when insurance makes it impossible to continue accessing what has been working for you, whether it’s a great doctor or a medicine that finally worked. Fingers crossed you find another doctor you connect with and a treatment that maintains how well you’ve been doing!!
I’m so happy that the trial worked for you and hope that you continue down the happy path you’re on!
Also, I love your blog, you are funny, and that is all <3
So happy for you. Praying this goes to market so we can all benefit from your work. Love your snapchat
Isn’t it cool to think that you were a part in helping the manufacturer get on the path to FDA approval?? That stinks that you won’t be able to get the trial drug anymore especially because of how life-changing it was for you!
I definitely get your desire not to be on long-term meds. I’ve been on Humira and Lialda for 3 1/2 years, and I’m so over it! Still, for the first time ever I made it a year without needing to see my GI, so I guess it’s finally truly working. I’m still going to talk to my doctor about working to get off one or both meds, but I know that will be a hard sell.
I hope you are able to find an awesome doctor and good treatment plan soon!
Ali, I’ve been reading your blog for some time now and totally feel your pain regarding auto-immune conditions. I’ve been diagnosed with one called polymyositis by my wonderful rheumatologist. If you need a recommendation for one in NJ, he (Dr. Guma) practices in North Arlington, NJ (201)998-2800. Hope this helps!
Ali – I have been following you since, I don’t know, 2011? It was BB – Before Brian. 🙂 But this post made me super teary because I feel like I know you (cheesy, yes) and I am so happy this drug made you healthy. Sending you good vibes, puppy-full thoughts, jazz hands, whatever will work that insurance/doctors get their shit together so you can continue the drug or find another happy, healthy option. Thank you for sharing your life with us!
I love your blog! That does’t seem right that the trial ends and you can’t get the meds. Ugh. My son has Crohn’s so I get i all. And we have a dog which makes it all better. And I like to run. Thank you!
Congratulations!!!! (I mean, not that the trial ended, but that you had a positive experience). I hope Dr. Webber gives a great referral and you can keep finding what works best for you and that bitch of a colon (hope that wasn’t too far, my brother had to have his removed last year, so I’m extra bitter.)
Yay! I am so happy that you are so happy. (And I hope things go as well post-trial.)
Can you write a post that is a retrospective on leaving Dance Spirit? I thought you were leaving because you were so sick all of the time, and was sad, but then your life seemed to get even more awesome, plus Ellie, you still saw Hamilton, etc! It’d be fun to see you look back at that decision now that you know what happened next. Thanks!
Haha “you still saw Hamilton.” Yeah, I can do some kind of career-related post soon, definitely. Being sick ultimately factored into my decision to leave DS, but it was definitely more than that (which I probably won’t get too much into, but happy to expand a bit). I still freelance for Dance Spirit and its sister publications, and am actually stepping back in to help out in a few weeks while the current editor is on maternity leave. So it’s definitely still a part of my life and my career!