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.
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?