A Crohn’s Disease Update + What I Learned Being On A Patient Advisory Board

A few weeks ago, I traveled to lovely Willow Grove, PA, to take part in a patient advisory board at Janssen Biotech. Janssen is the company that makes Stelara, the medication I’ve been taking for my Crohn’s disease for about a year now.

When the Janssen team first reached out asking if I was interested in being part of the advisory board, I was psyched. This was back in mid-March, when it seemed like the Stelara was finally working, so I was thrilled to get to tell them how thankful I was for this medication. After years of trying so many different drugs, I felt like I had found my fix.

But that was March. March was my good month. Parts of February and April were good, too. By May, though, I was fully flaring again, and it hasn’t let up since. I’ve now been flaring for more than a year (save for those good spring weeks), and there’s no cute or eloquent way to spin it: It sucks.

Life isn’t the best right now. I have good days and less good days on the physical and emotional spectrums. I was in a pretty dark place for most of summer, and only recently started to feel those scary clouds begin to part. (Yay!) That can all change in an instant — I’ve had this disease long enough to know that. I know that one minute my stomach could be totally chill, and the next I could be in the bathroom, in pain, for hours at a time. (Yes, hours. To say I haven’t been super productive lately is an understatement…)

I’ve spent a lot of the past year feeling really helpless. It’s no secret that I want managing this disease to be easy. I want to be one of the “lucky” sick ones, who can pop a pill or get an injection every few weeks and feel fine. And it’s hard because I used to be one of those people! I don’t know what changed. I don’t know why, after decades of living with Crohn’s disease, I’m experiencing it so intensely during what I thought would be the best, most action-packed years of my life. That’s what makes this hard — the constant uncertainty, the lack of answers, and the never-ending guessing games.

I’m still on Stelara. My doctor thinks that because I did start to feel better this spring, the drug is capable of having positive effects for me. The last time I saw him, my doctor said he wanted me to start doing the Stelara injections every four weeks instead of every eight. But the insurance company won’t approve it. Because the drug was approved for an eight-week cycle, moving to every four weeks qualifies it as “experimental,” and the insurance won’t cover that. We’ve been appealing the decision for months now to no avail, which is just insane. Yet again, my doctor wants me to get medicine that could possibly help bring me back to life, and the insurance company is shutting it down! If paying out of pocket, even just in the short term, were an option, I would suck it up and do it, but for $50,000 a pop (yes, $50,000 per shot), that’s just not happening.

Meanwhile, I’m finally doing more to take charge of my health however I can. When you’re depressed — actually depressed, not just having a bad day or two — “fighting” feels impossible. So the truth is, I haven’t been fighting. I know many people will defend that, which is very kind, and they’ll say that just getting through the day, just acknowledging the fight, is, in fact, fighting. But I disagree.

To me, fighting is figuring this stuff out on my own. Fighting is doing something, anything, about it. I preach about being your own advocate when working with a doctor, but at this point, it seems clear that my bonus medicine is basically being held hostage, and that’s a situation I’m probably not going to win for a while. (If anyone has experience successfully breaking into and robbing medical laboratories, though, please hit me up. Would love to collaborate.)

Fighting is trying — really trying — different diets and lifestyle choices. They may not help, but at this point, they can’t hurt. And I’ve resisted all that for a long time. I’ve dabbled in dietary changes, sure. I’ve been mostly dairy-free since Christmas, which has helped a bit, and I picked up a nice little medical marijuana habit, which I thought was helping, but may not have been after all. (I talked about this more on Episode 38 of the Ali on the Run Show — you know, the one where I boldly declared myself “back.” My bad.)

Right now, I’m doing the diet the team at Parsley Health prescribed: 90 days without gluten, dairy, sugar, or alcohol. It sounds restrictive, and compared to my normal diet, it’s definitely a major change. (The alcohol and dairy parts are easy for me. The no sugar and no gluten or processed stuff makes it harder.) But I haven’t made a major change in a long time, and I may as well give it a shot. (So, see you in 2018, chocolate lava cake.) I’m four days in (#heroic) and so far it’s been fine. I’m also keeping track of everything in a massive spreadsheet, including my sleep habits, my meals, what time I eat, every ingredient in what I ate, how I feel immediately after, any workouts I attempt, how many bathroom breaks I have to make during workouts, etc.

Managing my health feels like a full-time job right now. And it’s tough because it has basically taken over my actual full-time job. All summer, I was working long days, managing a bunch of different projects, and loving it. Sure, my health sucked, but my work felt fun and rewarding and I was into it. Plus, I could do it from home, which was accommodating. But eventually, I knew I needed to take a step back. Fortunately, all of my editors are incredible and were super understanding, so I’ve scaled back in a major way in an attempt to prioritize my health, whatever that means on any given day. I still have a handful of clients I’m writing for on a pre-scheduled weekly basis, but I’m on hiatus from the less predictable ones. And frankly, that sucks. It’s hard not to constantly focus on how much this disease can take away — my work, running, taking Ellie for long walks and on playdates — but here we are.

Anyway. I wanted to talk a little more about the Janssen panel, because it was a fascinating, eye-opening, super interesting day. I can’t get into tons of details about specific group discussions, because those were protected by all kinds of NDA paperwork and confidentiality agreements, but here are a few personal takeaways I gleaned after spending 12 hours with fellow Crohn’s disease patients.

1. We are hyper-aware of how the world sees us. This includes our family, friends, doctors, coworkers, and even strangers. 

We talked a lot about the struggles we face by having an invisible illness, particularly one many people still haven’t heard of or don’t understand. Whenever I recount an episode of being denied access to a public restroom, friends will say, “Well did you tell them you have Crohn’s?!” Yes, of course I tried that. And no, the bathroom guard didn’t know what it was and didn’t care. And by the time I explained how my insides were feeling, it was too late. Everyone could relate to this.

I have always loved blogging about my experience with Crohn’s disease because it has introduced me to an incredible community of people who understand — or are willing to read more in order to understand. But it’s also tough because you open yourself up to criticism. I can take criticism about most things (that’s a lie, I hate it, TBH!), but criticism about how I’m handling my disease feels especially personal and cuts deep. (Even writing this post, I know people will say — or at least think — that the diet changes I’m making are stupid or won’t help, or that I should try a different medication. It’s tough being on the receiving end of criticism when you’re already sick. I get it, but it’s hard.)

2. People still avoid saying the word poop!

Everyone poops. Some of us do it more urgently than others, but we all do it. So can we stop acting like it’s a bad word? We were two hours into the day before anyone said the word poop. (And yes, it was me.) We would say “going to the bathroom” or “number two” or “urgency,” but I finally flipped out when I realized no one was willing to say this word. If you can’t say it in a room full of Crohn’s disease patients, how can you expect the outside world to understand what we’re going through and to be less grossed out by us?

3. We all worry more about how our disease affects other people than about how it affects us. 

I know this disease is hard for me. But it’s also hard for the people in my life, and that weighs on me more than anything. It’s hard for Brian, who sees me with this disease every day and who, I know, is frustrated that he can’t “fix me.” (We talk about that more here.) I know it’s hard for my parents, who have not just one but two kids with this disease. (Shout-out to Ryan! We may as well be twinsies!) And it’s hard for my girlfriends, who are upbeat and positive and amazing, and who send me flowers when I’m having really bad days, but who also have to expect that I’m either going to break our plans or avoid making them at all. It affects my colleagues, my editors, my bosses…and it affects Ellie, who just wants to go out and play, and I can’t always do that with her because I’m chained to the bathroom.

I hate how much my Crohn’s — and my inability to manage it — can bring down the other people in my life. And they’ll never say it brings them down and they are always very heroic in their pursuits to help me feel better, but it sucks, and I feel tremendous guilt about this. I hate the idea of being a burden.

4. We are frustrated. 

We’re frustrated it takes weeks, even months, to see our doctors. We’re frustrated that once we get those appointments, we can’t always get enough time with our doctors. We’re frustrated by the prospect of switching doctors because it takes 45 minutes to recount our history of symptoms and medications. We’re frustrated by doctors who say “well your bloodwork looks fine,” and then don’t take our symptoms as seriously or urgently. (My current bloodwork all looks great! My inflammation markers are all within the normal range, my iron isn’t low, and my CED rate is A-OK. Go figure.)

We’re frustrated treatments cost so much. (Shout-out to the Janssen CarePath program, though. If you’re on Stelara, make sure you check it out! It takes your co-pay from $70 to $5!) We’re frustrated doctors just want to throw drugs at us. We’re frustrated there are so many unknowns. We’re frustrated when we commit to trying stuff and it doesn’t work. We’re frustrated there are so many lifelong medications but no actual cures. We’re frustrated there isn’t an easier way to prep for colonoscopies! We’re frustrated that it always feels like something is working against us, whether it’s our bodies, our insurance company, or the receptionist at the doctor’s office who is neither polite nor helpful. And we are so, so, so frustrated by the insurance companies.

5. Everyone hates Prednisone and corn. 

The entire room laughed at one point when someone simply mentioned the word corn. CLASSIC CROHN’S JOKE! And everyone had Prednisone horror stories. (It’s a steroid, and it’s the worst.) Oh, and we have all been depressed at some point, and have all experienced some level of arthritis.

Overall, I’m so glad I was part of this experience. It was equal parts comforting and frustrating. I loved being in a room surrounded by people who got it, because that’s rare. But it was frustrating to know that we all shared so many of the same seemingly unfixable issues (namely the insurance ones).

OK. That’s a good place to stop. I have a lot more to say about Crohn’s stuff, but now that I remember how to log into my blog, I’ll save that for another day.

Thanks for reading! (If you made it this far, power to you!) And if you’re running the Chicago Marathon this weekend, GOOD LUCK!