Today kicks off Crohn’s & Colitis Awareness Week.
I wrote this post last year and am republishing and updating it now to give a little background about my history with Crohn’s disease.
If you’re new here, hi! I’m Ali, and I have Crohn’s Disease. (Hi Ali!) I was diagnosed when I was 7 years old, so I’ve never really known life without Crohn’s. Throughout the past 24 years with this disease, I’ve definitely ridden the roller coaster of life with an incurable chronic illness. I’ve gone from super healthy and living the little second grader dream to hospitalized…within a few hours. That’s just how it happens.
Speaking of “how it happens,” this is your friendly disclaimer and reminder that everything you read in this post and on this blog is stuff that comes from my personal experience with Crohn’s disease. I’m not a doctor, I can only speak to what I’ve tried and what has and has not worked for me personally. Do as your doctor says, not as I do. (And we both say to take good care of yourself, seek expert opinions, and try dipping your cheese pizza in ranch dressing. I bet you won’t hate it.)
Also, I’m not here to sugarcoat things for you — not ever, and definitely not this week. So if you’re uncomfortable reading about bathroom stuff, I’ll see you back here next week when we can talk about things like running (maybe) and Ellie (duh).
In honor of Crohn’s & Colitis Awareness Week, I’ll be sharing posts all week long about my life with Crohn’s. If you have any questions or stuff you want to read about, let me know! I am all about increasing awareness about this disease.
First, a bit about my backstory with Crohn’s disease…
I was diagnosed when I was 7. I was so little! I got super sick pretty suddenly, was throwing up and going to the bathroom a lot, and my dad abandoned our family trip in the White Mountains (or Green Mountains…which one is Mount Washington in? whatever) to take me to the hospital.
The doctors at Concord Hospital couldn’t decode my issues — remember, this was 1992, so research wasn’t where it is now, and there was no WebMD to diagnose me with various incurable cancers or SARS or bird flus — so they sent me to Dartmouth Hitchcock Medical Center, where I was admitted and stayed for the next few days.
I remember three things about being at Dartmouth:
- The kickass arts and crafts room, where I fashioned little pieces of nylon into several dozen potholders. You’re welcome, mom and dad! I may have been sick, but it unleashed my inner Martha Stewart.
- The kickass brownies at the cafeteria.
- Having to drink chalky barium, and the lab tech screaming at me because I couldn’t drink it, and crying, and my mom crying, and everyone crying because it was very sad.
Beyond that, I remember being really sick and in a lot of pain. One memory that still makes me cry is being in the bathroom in my hospital room and sitting on the toilet crying in pain, holding my dad’s hand through the little crack in the door.
Eventually, the wonderful Dr. Edwards came to the hospital (it was either her day off or it was really late at night — she had no staff on hand to help her, so my dad had to help, and that didn’t work out very well) to perform an endoscopy on me. I remember nothing about the actual procedure. I can still picture the room, actually, but the only thing I remember is waking up and everyone telling me that my dad was supposed to be Dr. Edwards’ right hand man, but he passed out immediately and she threw a washcloth at him and was like, “Lock it up, David!”
He doesn’t do well with blood. Or needles. Or hospitals in general.
After the endoscopy, we had a diagnosis. Yay!
I was told I had Crohn’s disease. None of us knew what that meant.
I was put on a high dose of Prednisone — a pretty potent oral steroid — that kicked in almost immediately. I remember feeling better the very next day.
Fortunately for me, all this happened during summer vacation from school. When I went back for the start of second grade, my face was still all puffy from the Prednisone, but I rolled with it. I was a super happy kid, and I definitely didn’t realize the seriousness of the disease.
For the next, oh, 24 years, my life followed a pattern of randomness.
I would be healthy for months or years at a time and, at some point, would experience a flare-up out of the blue. I would get put on Prednisone, my face would get puffy (that’s a side effect of the drug — they call it “moon face”), and I’d feel better.
We eventually discovered a pattern: My flares typically came on during times of high stress, like when I moved away to college, when I went to Australia to study abroad, when I landed my first post-college job in New York City, when I got promoted to editor in chief, and when I was wedding planning. So convenient!
When I go through a flare-up, the symptoms are always the same, with varying degrees of severity. The primary symptom is the bathroom stuff, and let’s not sugarcoat it — that’s not what this week is about.
I get insane stomach pain and cramping, and what the doctors refer to as “urgency.” So you’re sitting on your couch, you’re going for a walk, you’re sitting at work, and all of a sudden you absolutely need to go to the bathroom right now or you’re going to have a toddler-style accident. (And yes, that happens. Know someone with Crohn’s? I bet it’s happened to them. It’s unpleasant and embarrassing and no one wants to talk about it, but here we are…talking about it.)
Once you make it to the bathroom, which hopefully you do, it’s painful and unpleasant. Yes, it’s diarrhea, but it’s also blood and mucus. Bloody stool = a definite Crohn’s flare, in my experience. And it’s not “OK I went, now I feel better.” When I’m flaring, I’m in the bathroom dozens of times a day. It is impossible to be productive during a flare-up. I have been known to bring an ottoman and my laptop into the bathroom with me so I can at least work from home. You do what you have to do.
My other primary pain-in-the-ass (truly) symptoms include high fevers, night sweats (think sweating through your PJs and the sheets, having to sleep on towels, etc.), joint pain (I get it in my back, knees, elbows, and wrists), wild fatigue and exhaustion, hair loss (scary), weight loss, anemia, and depression. (This post further explains my experience with the emotional component of Crohn’s. The mental aspect of this disease is unrelenting.)
During my worst flares, I’ll go days without leaving my apartment. I went on medical leave from my job two years ago because I just couldn’t get to the office, and I had exhausted all of my “work from home” and sick days. I eventually got myself home to New Hampshire to let my parents take care of me. This disease has forced me to miss out on trips (when Brian and I were first supposed to go to Hawaii for a friend’s wedding), major life events (I missed Tyler’s first birthday party because I was at “rock bottom”), and a whole lot of races (basically every race I signed up for in 2013 and 2014).
Eventually, the Prednisone trick stopped working for me, and I’ve been through the ringer trying different medications. I’ve taken Asacol, Lialda, Remicade (my miracle drug for years until I developed antibodies toward it), Humira (giving myself four shots in my stomach every week and it didn’t even work — hated it), Methotrexate (hands down the worst one), various diets, juicing, eliminating gluten, meditation, acupuncture (you try laying completely still on a table, covered in needles, and having to run to the bathroom), Canasa (that’s a suppository — fun!), enemas, and more.
I know what you’re thinking: Wow, Ali, this disease is so sexy and glamorous! How do you remain humble through times of such beauty?
My most recent “miracle drug” was the clinical trial I began in February 2014. I visited the doctor every four weeks and received three shots in my abdomen. I still don’t know what the drug is — we know it’s similar to Stelara, which is what my doctor wanted me on but the insurance company wouldn’t approve it and you do not want me to begin my rant on how doctors don’t get to be doctors because insurance companies are doctors. But update! I started on Stelara a few weeks ago. Yay!
I was in the middle of my worst flare when the trial came along, and I am tremendously grateful for it giving me my life back.
I came off the drug in April 2016 and am, unfortunately, back in flare mode. Hopefully the Stelara will start to work soon and I’ll be back to “normal” (what is that?) soon.
Last year, HealthiNation reached out to me about doing a video series about my life with Crohn’s. It was mid-summer. My hair had gotten very blonde.
You can watch the videos here.
Want to read more? Last year Brian wrote a guest post about what it’s like to live with and be married to someone with Crohn’s, and my dad wrote a post about what it’s like when your kid is diagnosed with a disease you know nothing about. Both posts made me cry.
NOW’S THE TIME TO TALK IT OUT. Questions? Concerns? Anything you wish you knew or understood about Crohn’s Disease?
39 Responses
I have a question! I know your brother has Crohn’s disease as well – is there a genetic component to it? Does it affect him the same way (or similarly) to the way it affects you? Do his children have it?
I can’t even imagine living with something like Crohn’s – I have been dealing with some hormonal issues for the past 5 or so years, and while struggling with intense fatigue and brain fog has not been fun I am so greatful that I haven’t been in pain. Good for you for maintaing a positive attitude and letting your experience be an inspiration for others.
*grateful
Hugs, my (internet) friend. x
Ali, is Fabrizio your doctor? Was just watching the videos…he has done amazing things for my close friend’s family and in my work life we are looking at trying to do some things with them and CCFA….
I have been following you for years and I was so sad when you were so sick for what seemed a very long time. A super long time for you I’m sure. I admire you so much and feel like I can give my patients a little more understanding even though I’ll never truly know. I also totally wish I could live in NYC and run there every day! Keep kickin ass!!
Thank you for sharing your experience and history with Chrons. You are an inspiration to those with chrons & colitis and other inflammatory diseases. I hope scientists continue to make progress with innovative treatments!
I just wanted to let you know how much I enjoy reading your blog! It is by far my favorite. I look forward to learning more about Crohns & Colitis through your blog this week!
Ali, thank you so much for your honesty in these posts! I found your blog while I was in the hospital during a colitis flare a few years ago, and have followed you ever since. Today I am “celebrating” 2 years since I had my colon removed after I developed antibodies to remicade and a spent a month in the hospital trying various drugs and steroids. While it hasn’t always been easy, your blog has always been so inspiring and a great resource. Especially because I am moving to New York next month!
I’m reading this from the bathroom at 1:26am Texas time! Yay Crohn’s Disease, am I right? I am so right there with you and would love to email my personal story to you someday. (Also, looking forward to those guest posts. I often wonder what runs through my husband’s mind.) We have so much in common it’s uncanny. I appreciate your honesty and openness (and even your at times comical approach, because to have this disease you have to have to get bathroom humor) to sharing your disease with an audience. I am still majorly curious about your weight gain and fluctuations. I have not been able to get rid of my Remicade weight in 5 years and counting! It has totally changed my body, and not in any of the good ways. Side note: your wedding was amazing and I’m so happy everything went well for you! Looking forward to reading more this week! Hugs from a Texas girl with Crohn’s!
I watched the videos and hearing your voice after reading for the last couple years was cool. I’m also a crohnie and a runner, and that was what brought.me here several years ago when I was contemplating a half in Vegas for CCFA. ( never mind I’d never run before!) I just remember thinking, ok…ill try it. Hopefully I won’t die! Reading your blog posts ( and the comments lol) made me realize running as someone who has Crohns is a thing 🙂 and I was inspired by your positivity. Looking forward to the posts this week!
You are just so awesome. I remember checking your blog daily for updates during your bad flare before the clinical trial. Funny how worried we can feel for someone we don’t even know. You are an incredible person to persevere and remain positive through it all. (Belated) congratulations on your wedding, and I hope you receive many more blessings this year and every year. Thanks for sharing your story; you are such a joy to read!
so inspiring! Great message and very composed. I am sure you are making a difference for someone. I wish you the best!
Hey Ali! For Crohn’s and Colitis week I am having a Colitis flare, yikes! Remicade worked miracles for me for a couple years then I started swelling and being in pain a few months ago, apparently a reaction to the medication. It’s been a struggle lately with switching medicine, the pain, the flare, and the arthritis like symptoms. It is nice to see someone share honestly what the experience is like! It makes it a little less scary to know others have gone through it and made it through, as you know there are some scary times! Thank you for sharing your experience, maybe someday there will be a cure. BTW, I really like the ottoman in the bathroom idea, seriously, particularly when you get to that leg aching phase. I was wondering what would happen when your trial was over, it seems cruel to stop you from taking a medication that is working for you! Good luck and thanks again!!!! Keep sharing!
A girl I graduated with from high school has Crohn’s and it kind of amazing to hear about it in full/real details. I say real because while the internet has the answers, I don’t quite feel its the same as hearing it first hand. And after an almost Crohn’s diagnosis for my sister, it shows me what it could have been like for her (fyi, she had appendicitis – doctors…haha.)
Ali, I’m so grateful for you and this blog. Your honesty and sense of humor always make me laugh, want to adopt a giraffe or ellie, and occasionally tear up a bit – that usually slightly scares the hubs…almost as much as me during a flare 🙂 as someone who was recently diagnosed with crohns colitis three years ago and who loves to bop along the roads and spend time with the little members of the family about as much as you, I really appreciate all you share and am so glad you are in a good place with the trial and surrounded by wonderful people. I was about to quote ‘Friday night Lights’…but I’ll spare you 🙂
I really enjoy reading your blog and watched your videos today. I started following you because I was a beginning runner with Crohns and it was nice to relate to someone else. Congrats on your nuptials and thanks for all you do to promote CD.
LOVE the videos! I have been following your blog (and journey) since the beginning and just wanted to say thank you for the inspiration. Your humor and storytelling abilities are second to none – thank you for sharing 🙂
Also, congrats to you and Brian on the wedding! And giraffe manor.. hello??! I was ready to book a ticket immediately after seeing your photos!!
Hearing your voice after reading for so long was pretty awesome.
Hearing Brian’s voice, talking about you…that brought tears to my eyes. The joy, the light, the energy he talks about? All reasons why I keep coming back here, even though I haven’t been on a run in AGES. 😉
I’m so happy for you both, and so inspired by you. Thank you for letting all of us in. xoxo
I found your blog last year shortly after my 11 year old daughter was diagnosed with Crohn’s. (Actually, I found your blog websurfing in the hospital when she was receiving her first Remicade infusion). I was just thinking earlier this morning (before reading this post) how much hope your blog gives me of my daughter being able to live a happy and fulfilled life with this disease. Thank you for being honest and telling it like it is!
I am ‘lucky’ enough to have inherited psoriasis and earlier this year when I was basically contemplating shaving my head and coating it in coconut oil to stop the itching and flaking (sexy, ooo yeah), my husband found this shampoo on Amazon and ordered it on a whim. It stinks horribly, but it has completely cleared up my flakes and itching. I used it every day to start with and now just use it a couple times a week (followed by a shampoo that doesn’t stink :)) for maintenance. Had to share! http://www.amazon.com/Psoriasis-Medicated-Conditioning-Formula-Shampoo/dp/B009ZBMVHU/ref=sr_1_1?ie=UTF8&qid=1448997869&sr=8-1&keywords=mg217
Ali, You are truly an inspiration to all of us Crohnies as well as to those who don’t suffer from this wretched disease. One of the best days of my life was stumbling across your blog. I was diagnosed late in life and since I worked in education was very self-conscious about my condition. Eventually it led to my having to retire. I have to add that my experience with this disease has been much less difficult than yours. For that I am very lucky. Having said that I want you to know that I have found your blog inspiring for a few years now and I want you to know I will continue to follow you in the future. Your attitude, sense of humor, ability to write and your amazing strength are like sunshine on a cloudy day. Best wishes for a better future.
Just wanted to stop creeping and say THANK YOU for sharing. Your blog was the first I ever started reading religiously, because you made me feel like there were other young, active, normal ladies out there who were battling days of constant cry-pooping like me but still leading somewhat normal lives. I have only proctitis so I am a lucky one – but it was nice to hear someone sharing their similar stories. So thank you!
Thanks for sharing your story. I think raising awareness about Crohn’s and Colitis is so important. I’m looking forward to all the posts this week.
BTW, the key to the bathroom IS THE WORST! There is an initiative in Canada called Go Here. Check it out!
http://www.kintera.org/site/c.4nJIJXPrEbKSE/b.9268541/k.851B/About_GoHere.htm
Big hugs!
Thank you for sharing this! I have UC, but have only had it for 3 years (my “anniversary” was earlier this month). I have thought many times how thankful I am that I didn’t get it earlier in life (I was diagnosed when I was 31) because it is such a hard disease. You are so strong and brave. I’m going to share this post on FB.
Ali, thank you so much for not only this post but all your posts! I’ve been living with Crohn’s now for almost 19 years. I was sick for almost 6 years before being diagnosed. This week means so much to me not just because I suffer from this terrible disease (currently, nothing is working and I don’t think there is enough space for me to type all that I’ve tried) but my Dad also has it. The upside to this is that we can talk to each other about it when no one else really gets it. I really look forward to your guest posts which I want to share with my boyfriend and family because I can see how much it affects them as well. Thank you again and stay strong!!!
Love you and your candor with Crohn’s. being a long time reader of yours when I was diagnosed it was so helpful to have your openenss about the disease as I struggled. Thank you for being you!
Hi Ali – I just want to say thank you thank you thank you for sharing your personal experience with Crohn’s. I was diagnosed in 2014 and I’m still very much adjusting to life with the disease. It fills my heart with such joy to read your story!
Ali, I can only imagine. I’ve had multiple health issues and one of them was a short (6 month-ish) bout with IBS, so most of the same symptoms as Crohns but without most of the pain. I too took my laptop into the bathroom, along with other reading materials, puzzles, etc. Night sweats were the worst! Moving to a different bed and changing the bedding multiple times each night. Ugh. I have been feeling for you for a long time, and I’m really glad you’re doing this. I also have chronic nerve pain from a back injury and the mental health issues that go along with chronic pain are real. Can’t wait to read more!
Love love love this post. Remicade was my miracle drug for 10 years! I wasn’t diagnosed until I was 18 (week before I left for college), so I can’t imagine what having Crohn’s as a kid and teen would be like. I understand exactly why you hate your Australia pictures, but you still look beautiful in them.
Loved watching your videos! It’s cool to hear your real “voice” after years of reading your blog:)
You are the best. The fact that you stay positive and laugh through this is is so inspiring. You’re stronger than you realize!
Hate and love this post at the same time. Always beyond impressed (or more like floored) by your courage and awesome despite this disease. Very few bloggers actually inspire anything but the desire to make my food look better if i ever were to photograph it, but you, m’am, kick ass.
Thank you for sharing your story, Ali. I’ve suffered from Crohns for 15 years (currently Remicade is still working for me) and because the disease is so “icky,” I never share the details with people. Thanks for being so honest about it!
There is one word that comes to mind when I read your posts or see your tweets or photos on Instagram and that is STRENGTH.
Looking forward to the other posts.
I love how open you are. I have been ill off and on since 1981 but no diagnosis until 1999. Ironically it took the birth of my son to create a long enough / bad enough flare for someone to pin down my problems to crohn’s. Before that I had so many random tests and diagnoses because my symptoms were either too short lived or atypical. Thank you for being so honest and positive at the same time!
Love to you my dear! My brother got crohns/colitis at age 13. His body showed one or the other back and forth for years. And remicade worked for quite a long time, but last January at age 24 he had his colon removed. Now he has to go to the bathroom every couple hours, but doesn’t have as much pain. Its always interesting to hear from others, thank you!!
I knew it was bad, but had no idea how bad the disease could be. I’m so sorry that you’ve had to go through this!
looking forward to the guest posts. I can’t even imagine. My husband had cancer but it was fast and in the 10 months from diagnosis to his passing I really only became a caregiver for the last few weeks. My point is I try to imagine what it is like when your significant other has a chronic illness. Thsnk you for sharing all this. It’s really eye opening for those of us who don’t have any connection to the disease. Glad you are feeling good right now 🙂