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

Date: October 5, 2017 at 4:32 pm- by Ali- Comment(s): 16

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.

patient advisory board

#TBT to a healthy spring!

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.

patient advisory board

Trying to get answers with a CT scan. It showed “severe Crohn’s-colitis” so…good to know? At least the robe was cute!

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.)

patient advisory board

Totally *not* relying on special medicine to get through the ferry ride to Fire Island…

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.

patient advisory board

I made this! And it was delicious!

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.

patient advisory board

Love a good fluid IV! But…it didn’t help.

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.)

patient advisory board

DO YOU THINK ELLIE HAD FUN AT THE BEACH?!

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.

patient advisory board

DO YOU THINK ELLIE HAD FUN AT MOUNT KEARSARGE?!

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.

patient advisory board

This was after I attempted a run in Central Park a few weeks ago. I psyched myself up for it SO much, and it went about as badly as you could imagine. So I sat in the grass and felt sorry for myself. And my friend Feeney sat with me and made me LOL even though I was really set on being sad.

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).

patient advisory board

Drinking an apple cider mimosa in my Ellie caftan after my failed Central Park run. It helped for a little while.

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!

16 Responses to "A Crohn's Disease Update + What I Learned Being On A Patient Advisory Board"

Thank you so much for your blog and your willingness to share. What I will share is my frustration with the side -effects of all of these meds. Humira caused total hair loss–alopecia universalis, which is yet another auto-immune disorder. Now I have three! (Crohn’s, AU, and psoriasis). I am off Humira and my dermatologist, with the approval of my gastroenterologist, wanted me to go on Xeljanz to test the AU, but bc it is only approved for rheumatoid arthritis, the insurance company said no. Even though it would treat all three!!! gah!!! So I guess I also share the insurance company frustration. Anyway, hope things improve soon.

Oh Ali I’m so sorry you’re having such a crap time still. SO sad for you. It sucks.

Excellent caftan though!

Ali, sorry you are having a crappy time with Crohn’s. I hope that things will improve for you soon. And I bet Ellie thinks your the best doggie mama out there!

My brother’s experience with Chrons has been very different, he also has epilepsy, so cognitively is a 4 year old despite being 26. But eventually my parents had his colon removed…I have no idea if that’s something that would work for you, but the pain is gone. now the urgency is more predictable (and no bag situation required at this point!). I’m glad that the stellara folks reached out to you, hopefully the insurance company figures it out and helps you get the dosage your doctor is recommending!

Thank you for your openness in discussing your Crohn’s. I found your blog googling running and crohn’s/UC. It’s helped to hear other’s stories when dealing with a multi year UC flare. I 2nd all of the frustrations you listed! I am a primary care doctor and having UC has opened my eyes to what it means to be a patient. Now I know how annoying it is when I ask a patient to get their blood drawn again, go for another test or how it can be scary to hear all the possible side effects of a medication I prescribe. Also the cost of medications in this country is astronomical and we need legislation to address this. People are incredibly stoic and it is amazing to see. Thanks for posting all of your running stories, Ellie pictures and the podcasts have been a blast to listen to. I wish you better days ahead!

It’s so good to see a post from you! I know you have had a tough year, and its always great to hear from you on IG or a podcast, or here on the OG blog!

I think you are very brave for trying new things, its not a waste at all! Like you said, it won’t hurt.

I have no words of wisdom or advice on tackling insurance assholes. Just know that my dog Foxy and me are over here cheering you on from the middle of the Midwest!

Genuinely curious how it felt to be in a room with people who have all pooped their pants. Pretty sure my 1.5 year old nephew is the only one in my life who has done that. IBD is the fucking worst.

I don’t think it’s stupid trying a new way of eating. It’s worked for me on a couple of fronts. I’ve been trying a ketogenic diet which really seems to have eliminated my morning toilet trips. In fact I was getting totally smug about it until Crohn’s reappeared to remind who is really boss last week when I was having a stressful time at work. Which leads to the other way I think it helps me; I feel more in control and less anxious about what I’m eating. For me stress and anxiety are my major trigger so that can only help. Good luck Ali. I hope this shit disease we are unfortunate enough to have in common gives you a break soon.

Monica C. says: October 6, 2017 at 4:01 pm

Please don’t underestimate what giving up sugar can do. I know you hear a million suggestions on what to do/not do, but I definitely want to share my experience whenever I can, just because I am so convinced about what happened. I have RA, was diagnosed in my late 20s but was largely asymptomatic until my 30s, after having my 2nd child. At that time, the sugar addiction that I’d always had was completely out of control – I was consuming massive amounts of sugar (in the form of candy (Sweet Tarts, Skittles, Sprees, etc.)) on a daily basis. I never gained weight, was a marathon runner, so I didn’t think anything of it. When the Plaquenil that I’d been on for RA stopped working, I resisted changing to another med. I definitely did not want to go down the Methotrexate-Humira-Enbril-slippery slope. But my condition continued to worsen, causing me to go on a couple of Prednisone stints . Everything hurt, I had no strength in my hands or wrists, I could not get a good night’s sleep, I was drained of energy, and all of it while being a wife and the mom of 2 young children, working full time as an attorney. In the back of my mind, I knew my sugar habit was out of control. My teeth started literally falling out and I have tens of thousands of dollars of implants to show for it. Finally, I got on Arava/Leflumonide,which I am still on today, but what finally stopped my mad descent into hell was that on a Tuesday in July 2014, I said no more and decided to break my sugar habit cold turkey. That changed everything. The inflammation, stiffness and soreness went away. The last 3 years have been dramatically different, and I have regained 95% of my prior health. I still consume sugar, but minimal amounts compared to what I used to, and more importantly, I broke the addiction and will no longer touch a single piece of the candy I used to eat every day. It sounds crazy to say that Sweet Tarts and Sprees were killing me … but no matter how crazy it sounds, IT IS TRUE! Sugar = inflammation, and if not consumed in moderation, that shit will kill you. Best of luck to you in your search for answers.

As someone who suffers from a completely different (but equally frustrating) autoimmune disease, I found every word of this post to be 120% relatable We could honestly spend hours sitting on the couch discussing our rage about our rogue immune systems. I went from that “easy” pill taking patient to becoming allergic to my suppressants (after 10 years!!!) and flared BAD. I get you, girl. I hope the diet helps (and that you enjoy sugar-free jello 🙂 ) Chin up!

Yup, stress and anxiety. I agree with above. I wonder if you could write a letter to Janssen begging to be their special friend and could they give you your 4 week in between meds? Just a thought- since you scratched their backs…
On another note, totally know the dark place and identify with your explanation of fighting. You keep fighting, Ali. IT WILL GET BETTER XO

Once again you amaze me with your strength and courage. Thank you for helping all of us that love someone that suffers from Crohns/Colitis to understand just a little more clearly how much this disease can invade your lives each and every day….. and by the way I was POOPING while I read this😳

I’m so sorry for how long this flare has been going. The uncertainty is definitely one of the worst parts. If only we could know how long the flares would last, I feel like that would make it a little more bearable to get through. The part about worrying about everyone around you more than yourself really hit home. I always feel so bad for everyone around me trying to help and stopping their lives because of my sickness. And don’t even get me started on doctors appointments and insurance 🙁 Hoping things look up for you soon!

I can completely empathize with you here. I’m currently appealing to my insurance company and benefits center to continue getting coverage for my Imuran. It has kept my Crohn’s mostly in remission for 5 years now. I’m beyond stressed about what I will do if my claim is denied and while not $50,000 a pop the number is comparable to my monthly mortgage cost.

Reading this post reminded me how frustrating it is to be sucked into the medical vortex of chronic disease. My son has Cystic Fibrosis and your frustrations are so similar (even the poop part!). Trying alternative medicines has always been frowned on by the doctors and even called ‘Voodoo’ medicine. I learned early on to be his advocate and to research alternatives that would work for him. Diet did make a huge impact on his day-to-day living (CF affects the lungs and digestive system). He found that the exact opposite diet that they recommend (low-fat vs high-fat) was beneficial to him. Good luck with your new changes. It does take time to find what works for you. Hang in there!

Maybe your Doctor can consider getting another IV induction dose like you got when you started

Leave a comment

required