For the past eight months, I’ve enjoyed feeling healthy. And not just “healthy for me” or “healthy for someone with Crohn’s,” but generally healthy, without any distinctions or clarifications.
It’s been years since I’ve felt this good, and I’m appreciating every single day. I can leave the apartment! I can take the subway! I can run! I can run marathons! I can make plans with people and not cancel them! All these little things still feel like such major victories to me.
I’m approaching the one-year mark since enrolling in a clinical trial to get my Crohn’s disease into remission. I had so many questions when I started the trial — and still have many questions — and thought I’d share a bit of what I’ve learned along the way. If you have more questions, of course feel free to leave them below and maybe I can answer them semi-coherently.
As always, this is based on my personal experience in one particular trial. I’ve only done one, and it’s not over yet, so this is just a progress report. Please don’t sue me if I say something that seems untrue. Oddly enough, I am not a doctor.
First, a very brief background of my history with Crohn’s disease:
- I was diagnosed when I was 7 years old. No one really knew what Crohn’s disease was then.
- I would flare about once a year — usually in the fall, which some people say has significance and others say does not — and my doctors would treat me with a high dose of Prednisone, a very potent steroid with gnarly side effects (it makes your face chubby, makes you gain weight, you can’t sleep, I get very skittish and jittery constantly; not fun). Prednisone worked until college.
- My flares kicked into higher gear once I went away to college, and the Prednisone was no longer effective. I was hospitalized while studying abroad in Australia, which was particularly horrible.
- By senior year in college, I found a doctor who suggested I try Remicade, which was very successful for patients with Rheumatoid Arthritis and had found recent success in Crohn’s patients. It’s an IV infusion that takes about three hours, and I got doped up with it every eight weeks. It was my miracle drug. The first time I got Remicade, it kicked in within 24 hours.
- After I graduated college and moved to NYC, my Crohn’s stayed mostly calm for a while, but eventually the flares came back, and in a much more aggressive form than ever before. I had to miss a ton of work, and it was clear the Remicade was no longer working. I had built up an immunity to it.
- I went through several doctors — finding one you love and trust and respect is crucial — and tried so many different drugs (Humira, Asacol, Lialda, Methotrexate), treatments, diets, and lifestyles. Nothing worked.
- Finally, after going on medical leave from my job and being rendered largely useless for much of 2013, I agreed to go with the last-ditch effort: enrolling in a clinical trial.
My hesitations about enrolling in a clinical trial:
- You’re a guinea pig. I like to know what the side effects of a drug may be; I didn’t want to be the person finding out what the side effects are.
- I was scared. Getting pumped up with a mystery chemical without knowing anything about it? Ew gross why?
- My study was a double-blind study — meaning that I wasn’t guaranteed to even get the drug. I could have been given the placebo. And I wouldn’t know until the trial was over. It could be a total waste of time.
What I didn’t realize about enrolling in a clinical trial:
You are really at the mercy of your doctor and the trial. They essentially need you more than you need them. You’re helping them find out about a new — potentially life-saving for some people! — drug. They need you to cooperate and be available.
You have to be available. I don’t decide when my appointments are, and I don’t get to schedule them based on my own preference and availability. I was given a calendar at the start of the trial (it’s a 112-week trial) listing the dates of all my appointments for the next 112 weeks. I have to take all of this into consideration when planning trips, or even work meetings.
You have to undergo a lot of tests. Before I was even enrolled, I had to do an EKG, an eye exam, and so many other “random” tests that seemed silly to me but were necessary for the trial. Now, before every appointment, I have to take a pregnancy test and I do an EKG at every four appointments. I also have to go in for routine eye exams to make sure the drug isn’t making me blind. Totally chill.
The appointments are long. I go in every four weeks to get the drug administered, and the appointments consist of turning in my “study diary” (more on that, hold please), waiting for the Study Lady to make sure I’m “still eligible,” taking my vitals, getting a physical exam from my doctor (just some quick poking and prodding and talking about marathon training, since he just ran his first marathon!), waiting for the drug to thaw (yup), more vitals, getting the drug (a series of three shots, given subcutaneously in my stomach), more vitals, and then a 30-minute to six-hour “monitoring period” (the length of the monitoring period varies by visit, and it’s to make sure I don’t have a bad reaction to the drug, like getting a rash or dying).
You have to keep a very detailed diary. Every day, I have to keep track of my temperature, my overall well-being, my stomach pain, my bathroom activity, and whether or not I took any medications that day.
You can’t really take any other medication. So like right now, I have a cold. But I don’t want to take anything for it because I’m not really supposed to. There are certain medications I can take while in the study, but I don’t want to call the doctor every time I have a sniffle to see if it’s cool for me to slug some Tylenol.
It’s free! I don’t have to pay a copay for any of my doctor visits now, and don’t have to cover the cost of the drug. I didn’t realize this when I enrolled, and it was the greatest surprise ever. I do not know whether this is the case for all clinical trials, or how it affects different insurance plans.
Now, I am of course so glad I gave the study a chance. I won’t know until the end whether or not I received the placebo to start, but after the initial double-blind period was over, all patients enrolled in the trial were guaranteed to get the drug. (That’s not always the case.)
And it has clearly worked. I also believe making a huge lifestyle change has played a large part. I’ve better learned how to handle stress, which can greatly affect Crohn’s flares, so that’s a good thing for me and the people with whom I interact on a daily basis.
After 112 weeks, though, the study will end.
And then what?
Then I don’t get the drug anymore. According to Study Lady, the period for getting a drug approved after its trial runs from 2–5 years. So…that sucks. My doctor and I have talked briefly about what I’ll do after the trial, and he suggested one drug in particular that was recently approved by the FDA and could be successful for me. I want to see how I do coming off medications entirely — am I in remission enough that I don’t need a maintenance medicine? — but that carries its own risks, worries, and fears. So we’ll see when we get there. But either way, I’m cut off from the study drug after the trial’s completion and won’t be able to get it until it’s eventually FDA approved.
Added to the list of reasons I hate the FDA and health insurance companies. Like my wonderful doctor always says, “I’m your doctor, but I’m not really the one who gets to treat you — the FDA and the insurance companies are the ones who decide what medicine you get.” I call bullshit, man.
That about covers my end of the clinical trial stuff, but since I opened this up to questions a few posts ago, here we go with the Q&A portion of this post!
“I know you are (or at least were) on Remicade – I’m about to (hopefully) get started on Humira. Were you scared at all about the biologics, and if so how did you make yourself feel better about it?” —Dayna
Yes, I was on Remicade as well as Humira (not at the same time). I had success with Remicade for a while, but never got into remission with Humira. I wasn’t scared about the biologics. I know the idea of them scares a lot of people, but I was at such a sick point that I was willing to try just about anything. I seem to have a relatively strong immune system other than the whole Crohn’s thing, and I just focused on what the drugs could do for me instead of the harm they might have. Ignorance is bliss? Probably not. But that was my approach.
“I am curious about your weight gain.” —Amy G.
Me too! Over the course of the past year, I have gained about 30 pounds. I don’t weigh myself at home, but I’m weighed every four weeks at my doctor’s appointments. At this time last year, I was very sick and underweight (per my usual weight; I don’t know what “normal” or “healthy” is for my height, which is 5’5″). As soon as the drug started kicking in and I started getting healthy, I gained weight fast. Now I think I’ve settled into a mostly stable weight, but it’s hard to know what my “normal” is because it has fluctuated so much over the past few years, going back and forth between sick and healthy. I’ve weighed between 116 to 143 pounds in the course of one year. It’s an emotional roller coaster for sure, and it’s hard not to be frustrated by the weight gain when it happens so fast. I do try to remind myself that it doesn’t matter because I’m healthy and that’s most important. I will write more on this another time because (unsurprisingly) I do have more to say on the topic.
“I’m curious to know how your Crohn’s is doing and how you manage it when you travel?” —Jewel
Plan for bathrooms. Always. Get aisle seats on planes. Don’t take buses or trains that don’t have on-board bathrooms. The extra stress is not worth it. And of course plan for your diet and bring whatever food or drinks you need to have with you.
“If you have any advice — what to read, what not to, good docs and bad, how you found the clinical trial, what’s worth panicking over, what’s not — it would be greatly appreciated.” —Andy
I like CrohnsForum.com because it’s nice to hear other peoples’ stories, but don’t get caught up in them or read too much into them. Blogs can be nice (The Great Bowel Movement is good, even if I don’t love Crohn’s puns, I do adore and respect the girls who started the site), but again remember that you’re only getting someone’s personal experience. I’ve had this disease for 22 years and still feel completely uneducated and sometimes stupid when I talk about it.
I found the clinical trial through my doctor’s office. They sought me out because I was a candidate for that particular trial (based on my symptoms).
Try not to panic over anything. It makes things worse. Easier said than done, I know.
“If it’s not too personal, can I ask how you and your significant other have dealt with the fact that you’re sick?” —Melissa
Too personal? What does that mean? (Brian may disagree.) It’s so so so hard. Truly. The two years I spent at my sickest were really hard on Brian and me. I felt gross and sad and ugly and unattractive, and he felt like there was nothing he could do to make me feel better. (Not true — he did so much to help.) It’s hard being sick, but it’s almost just as hard seeing someone you love be so sick and not being able to help. Communication is key. Be kind to one another, and be sensitive. (I’ve asked Brian to write a guest post on “dating someone with Crohn’s.” He hasn’t written it yet. Maybe if you ask nicely, he’ll actually get around to doing it.)
From Brian, just now: “OK. Yeah. I’ll do that.” (Deadline TBD.)
“Any tips for running with Crohn’s?” —Dayna
Plan your route. Know where the bathrooms are along the way. Bring extra toilet paper just in case. (It happens, it’s OK.) Know where the bushes are along the way. Stay close to home if you need to. Go easy on yourself. Be aware of how your body recovers, because it may take longer than other people. Get more rest than you think you need. Stay extra hydrated. People with Crohn’s are often more dehydrated than usual, so pay attention to your body’s hydration levels. Fuel the way that’s best for you. If that means eating Swedish Fish or Starburst mid-run, then do that. Don’t just do what everyone else is doing. That doesn’t matter. You matter, and your body matters.
People will love to tell you not to run because you have Crohn’s. You don’t always have to listen to them. (Your doctor? Maybe. But I’ve never had a doctor tell me that running will make my disease worse. Yes, it may affect your recovery and your ability to stay strong. Listen to them about that. But in general? Eh…)
“How do you keep from not going crazy with all of this frustration and pain and seclusion?” —Paige
I did go crazy. I was very deeply depressed during my lowest, sickest points, and I did not handle it well. I wrote a post all about the emotional side of Crohn’s disease months ago and have yet to hit the “publish” button because it’s — dare I say — almost too personal for me. But maybe I’ll get that one up and running at some point. In short, though: It’s hard. It’s lonely. And it’s really sad and scary. I didn’t handle my emotions well, so I’m probably not the best person to ask on this topic. I got mean and sad and didn’t treat my loved ones with very much respect or appreciation. I didn’t want to talk about it, so I didn’t. In hindsight? Try to talk about it.
“Did you eat Spam Musabi in Hawaii?” —MJ
Yes! I got it at Marukame Udon in Honolulu. I did not like it.
WOW that was long! But I hope it was helpful.
Take good care of yourselves, people. I need you.
38 Responses
Ali-
I found your blog about a year ago when I started running. I was just getting the idea in my head of running a longer distance race and was searching for CCFA fundraisers. My husband has Crohn’s and I thought it would make sense to do my first long race in a way that might benefit him. Through that search, up popped your blog. I suppose this was just about when your started the clinical trial. I was captivated by your story. It was so powerful for me to read all of what he has experienced through someone else’s eyes.
Being “the healthy one” is so hard. Granted, it’s nothing like being the Sick One, but a different kind of hard. Even when he’s healthy, he’s still sick. Even when I’m sick, he’s still sick. The love for him is always there, but the patience and compassion really need to be fought for sometimes.
Reading your experience – specifically when you’d talk about your fatigue (that’s usually where I struggle the most because when he’s healthy he looks so healthy….but he’s always TIRED) and also about the emotional toll that every element of this disease takes on you. Reading your story has helped me to be more patient and understanding and I really can’t thank you enough for that. You are a treasure and I’m so grateful that you keep this blog.
Not to mention the fact that you’re hysterical and you inspire me in this running journey. I finally did run my first half marathon – though not a CCFA one – and came across some November Project people as I was dragging myself up the ridiculous mile-long MOUNTAIN at the end. They made me think of you and how joyful you are about being able to run. Totally got me through lady.
I hope only the best for you with all this Crohn’s stuff…and especially with all the exciting things that this year will bring to you!
Thank you for posting this! I found you when I was searching for “running” and “Crohn’s” and so happy I did. I love your blog and when I read your posts I’m like Yes, Yes someone else feels the way I do! I just recently started running last year and was diagnosed 5 years ago. Although mine is mild to moderate and many suffer worse then I do it can still be hard to deal with at times. I love reading your blogs, you always make me laugh! I hope you decide to post your emotional side blog and would like the Brian guest post too. Congrats on the engagement and I’m so happy everything is going so well for you!
P.S. I love cheese 🙂
I had no idea you had Chron’s for this long. I thought it was a fairly recent discovery.
Thank you for posting this! I’ve been struggling with colitis for the past 2 years and feel as though we have been down similar paths so hearing your success gives me hope! I totally understand not wanting to publish to the world how you dealt with your emotions, but I would like to encourage it. I have not been dealing with the emotional side very well myself (how I still have friends and a bf I will never understand), but hearing how you got through the tough times would hopefully inspire others (an me) that may be facing a similar situation. I love reading your updates, they always make me smile 🙂 Keep them coming!
Only you would make bug eye goggles from your medicine cups! Cause your AWESOME! I hear you about the crappy times (oh I kinda made a funny). I am on the other side of “hell” with crohns and always worry about getting really sick again and it’s starting to act up which sucks. It’s crippling as you know. But on the upside … Its awesome to “live” with crohns. That’s what you do. Thanks for the real post. I can hardly wait for a run tomorrow in the snowy mountains of Wyoming! Keep on trucking Ali!
Haha well actually, Brian is the one who stuck them on my face. I think he was trying to make me laugh. It worked.
I loved what you said about how hard it is to see your loved one so sick and not be able to do anything about it. My husband was diagnosed with Crohn’s while we were dating and had surgery for a fistula 2 months before our wedding. It is heartbreaking to be so helpless. Before his surgery even I didn’t fully understand what the disease was doing to his body, and most people definitely don’t understand it either. Everything you said in this post and others about everyday life, finding a good doctor, and dealing with insurance and medication issues is all true for us too. I will finish up my dietetic internship and take my exam to become a Registered Dietitian this summer, and my husband’s Crohn’s has really focused me on my area of practice. As part of my internship I am working with the CCFA to provide nutrition information to patients. I hope you continue to stay healthy and that this trial is a successful one overall. Good luck to you and congratulations on your engagement! I hope your Brian (my hubby’s name is Brian too) writes his post, as I would love to read it and share with my hubby. And if you do decide to share your post on the emotional side of Crohn’s, we would certainly welcome it, too.
That’s so great that you’re working with CCFA! Love that! And yay for boys named Brian. They’re the best, I think.
All clinical trials are free (and some even offer payment and incentives!) and you can find trials here:
https://clinicaltrials.gov/
Yay! Thank you for sharing!
This really resonated with me: “Don’t just do what everyone else is doing. That doesn’t matter. You matter, and your body matters.” It can make even the healthy times feel bad, seeing everyone else’s beautiful virtuous salads.
I agree with the comments above–your blog has helped me so much. You started to feel better right around the time my last flare began, which helped give me hope that I would eventually get better too.
And re: dating, my boyfriend and I had been dating only a couple months when I started to flare. He made me so much happier than I would’ve been alone, and I know he preferred my ever-more-frequent sobbing-on-his-chest breakdowns to the alternative of me staying quiet and taking it out on him. I even got in a car accident picking up stool-test supplies on a day that began with me being told I’d have to have another colonoscopy, and he drove me everywhere–to every lab, every pharmacy, every appointment–for over a month afterward. Trying to appreciate loved ones is so crucial, and most will understand if you lash out at them occasionally.
I love you and I want to hug you. I think the car accident thing would have sent me right over the edge. Hang tough, girl. So happy you have an awesome support system. xoxo
Don’t get me started over who is actually treating patients. Sometimes I feel like Medicare is treating my older patients with all the rules and shit! GAH!
I followed you through the sad years and it tickles me pink to see you feeling well. Your awesome!
We need you too! I hope to one day read the post on the emotional side of Crohn’s. I have many supporters, but no one will ever really understand what living a day in the life of a chronie is like. Thank you for sharing everything that you do, and always, for all the laughs. “NOT A DOCTOR”
Bless this post!
Thank you thank you thank you. I can’t emphasize enough how helpful this post is. I’m a runner that’s been following your blog, cuz you’re awesome, for ~4 years now and was JUST diagnosed with Crohn’s (like truly just, 12/19/14 to be exact), and I really appreciate how open you’ve been about your whole experience. What initially drew me to your blog was running, obviously, but once I realized the extent of your poo problems I quickly realized we had more in common then I knew. Ive probably had Crohn’s since I was a teen but only flared (twice) this past late summer/fall. Did the whole “oh must have eaten some bad cherries” denial for a bit until the second flare hit with a fucking vengeance. I truly admire your “fuck it, I’m gonna run even if I have to stop at every god damn bathroom” attitude, which motivated me to keep running and training through my own shitssues (shit issues – coined it). So happy the trial has been working for you and that your overall health is so strong right now. I start Remicade next week so it’ll be interesting to see how that makes me feel, and more importantly, if it does work, how long I actually respond to it. Joy of fucking joy, there’s only like 4 approved treatable meds, and they all seem to stop working eventually. Here’s hoping that thanks to your trial we’ll add another treatment to the pot. Overall, just wanna say thanks, and if you’re ever in the Bay Area (San Francisco), hit me up and we’ll swap poo nightmares. Also, let’s be friends forever k bye.
p.s. I’m a firm believer that if your significant other can’t handle your poo issues, then they should be flushed.
I always think that I will quit blogging “soon,” but then comments like yours make me want to keep writing. I’m down for the friends forever thing. Let me know when your flight to NYC lands. (And seriously, thank you for sharing. I’m so sorry to hear of your new diagnosis, and hope it’s mostly smooth sailing and healthy days going forward. Will be thinking of ya!)
Wow. You have gone through so much with Crohn’s and I had no idea how these trials worked either. I love how much this has helped you and how GOOD you feel and I really hope you continue to feel good after!! xo
<3
As a researcher involved in several clinical trials (in a totally different area of science), as well as a fellow Crohny, obviously I can’t keep my mouth shut on this post 🙂
NK’s post above is exactly right. Clinical trial meds are essentially always free, and usually there is a financial incentive for participation. As well as likely access to additional (free) medical screenings and tests. Not so important up in Canada where I am, but certainly something to think about in the U.S.
Also it may be worth asking your study coordinator if there is a contact for the industry sponsor who is likely funding this study (the drug company). At times, with novel therapies, there will be some possibility to extend treatment from a clinical trial (on “compassionate use”) during the FDA approval period (I’ve seen it happen). This is especially likely if you’ve failed ALL THE DRUGS before. It’s worth a try, I’d hate for you to end your really positive run on this med if there was any alternative.
Third: congrats! So happy you have found something that has worked for you. I’m lucky to be stable on Humira, but that solution didn’t come without a lot of trial and error. And I am totally feeling everything about your opinions on frustration, mood impact of a totally embarrassing chronic disease, and impact on interpersonal relationships. Living it, lady! It’s amazing how improvements in your physical health really do allow for all the other pieces to fall into place. So happy for you, again! Nothing but rainbows and puppies headed your way. 🙂
This is great and so good to know! Thank you for sharing! And so happy to hear Humira is working for you. That’s the best. Keep taking good care of yourself and ENJOY the health!
Your strength is amazing, and inspiring. And so happy you are doing so much better!
I am in the process of trying to get a diagnosis and have to say it is the most frustrating experience ever so bless you for dealing with this the majority of your life.
I just started Asacol and am hoping it helps with the canasa but am also helping new doctor next week is more helpful in getting to the bottom of it. Your reality makes me realize that I have it good!
Ugh, I’m so sorry, friend. I can totally understand the frustration. Let me know if I can do anything for you. And YUM, Canasa! Been there 😉 Hope it helps! xoxo
Just as a heads up, all clinical trials are free. In fact, many/most of them actually pay participants. Insurance isn’t going to cover interventions not approved by the FDA, and you’re taking the risk of all the side effects and making a human guinea pig of yourself. They can’t ethically ask anyone to pay for treatments that they don’t even know for sure are safe in humans, or have any track record of efficacy. Presto change-o, free. And often extra monies for doing it so that people are more enthusiastic about being willing to try it.
This is great information. Thank you for sharing and for clarifying! (Also WTF, I want to get paid…LOOKING INTO IT.)
Thank you so much for this post Ali. I have said it since the first time I read your blog: there is something so therapeutic about reading your thoughts coming from someone else. I have struggled with being a runner and having crohns for years…I found your blog right after my sickest year and have been hooked since. Thank you for letting us into your life!
<3 <3 <3 (Because I don't know how to make emojis.) And thank YOU for reading.
ahhhh posts like these are a breath of fresh air. it is easy to feel isolated and alone with disease, but gosh what a nice reminder this was that someone out there gets it. seriously could not have made it through my first few months after diagnosis without your blog. fingers crossed you stay this healthy for a good long while!
That means so much to me. Thank you for the nice words. Cheers to happy and HEALTHY years ahead. Keep taking good care of yourself.
Thank you for this post! I love the running posts, but the Crohn’s posts are what keep me coming back. February will be a year of a never ending flare up. Remicade started failing after 3 years, humira attempt failed, tried to get the new drug Entyvio approved that failed, hospital stay, now back on Remicade and Imuran which are failing and just picked up a nice bottle of our fave Prednisone. I’m usually pretty strong mentally and can physically handle some serious pain, because let’s face it, we kind of just have to. But I lost my will fight over the last few months. The stress of life in general this year with two job lay offs, being a single parent, and my body constantly hating me has kind of just made me hate myself. I’m digging out of it. It’s kind of like you snap out of it one day and just don’t want to be the mean miserable person that the disease, stress, pain, and loneliness has turned you into. I’ve made great strides to cut stress out and try to remember that my friends and family are just trying to help, they don’t understand exactly what i’m going through and it’s not their fault so no need to be mean to them about it. I think you should publish the post you have on hold about the emotional part to Crohns. I know i’m not the only one out there that is where you were..I have LOVED the posts about Brian and literally cried when I saw you got engaged. (overly emotional all the time now and cry at everything..sooo…) But really..BRIAN PLEASE WRITE YOUR GUEST BLOG POST!!! Because i’m sure there are tons of single twenty something Crohnies that don’t feel like there is anyone out there strong enough to understand or deal with all that comes with dating someone with Crohn’s.
I hope your 2015 is freakin’ fabulous and when the trial ends..I hope nothing but good things come your way!
Oh girl, it sounds like you have been through the ringer. You also sound tough as nails. I can completely relate when it comes to losing the will to fight — and the “emotional side of Crohn’s” post that I have yet to publish touches on that quite a bit. I’m glad we have each other and can bond and relate. Take good care of yourself, and thank you for the kind words. <3
Our Crohn’s stories are so similar. Currently on Humira injections once a week and Imuran. I find your blog comforting, funny, and inspirational. I really appreciate your frankness and although I don’t know you am proud of your amazing progress and comeback! Good on you Ali.
Hi Ali
Thanks for this very informative post about the trials. I know it takes time to write your blog but you know we all appreciate it.
I was wondering, do you know what the medication is that you are given in the trial?
I don’t know what it is. I won’t find out more information until the end of the trial.
I thought it was a Stellara trial for Crohn’s…?
Your blog is amazing. I read every word and am never bored. Keep ’em coming! And I definitely look forward to Brian’s guest post and more about how you handled being so sick.
When I’m writing blogs about my races and training, I’m like “ugh, writing is so hard!” and then I think about what you write, how personal it is, and how much I appreciate that you share your story. Then writing about winning and trying to sound modest seems so trivial!
Haha well if I ever have to write about winning a race (HAHAHAHAHAHAHA that will never happen), I know who to ask to proofread for me!
Thanks for the Q&A section of your post. I don’t have Crohn’s but I do have depression and just hearing how you dealt with it connected with me.