Today’s Crohn’s & Colitis Awareness Week post comes to you from my dad. He’s the strong-willed dude who held my hand when I was diagnosed with Crohn’s, took me to my very first Remicade appointment (and held my hand when the nurse stabbed me repeatedly trying to find a suitable vein), and answers every single one of my hysterical phone calls when I am sick and crying and can’t get through it by myself. (I survived 20+ years without saying the F-word in front of my parents, but when I was really sick, I dropped it during a phone call with my dad, and he was like, “It’s OK.” So now I am allowed to drop F-bombs, but only during Crohn’s flares. I am 30.)
I am not a parent, so I cannot imagine what it’s like for your child to be sick and to feel fairly helpless. But my mom and dad can. So I asked my dad to write about their experience through my diagnosis and then, just a year later, my older brother’s diagnosis.
Take it away, Dad!
Our daughter was 7 years old. A vibrant girl that lived life to the fullest every day, who very rarely complained about anything. (Editor’s note: How times have changed! I love complaining!) While enjoying an extended family vacation in the Green Mountains of Vermont and the White Mountains of New Hampshire (Editor’s note: That answers my question from the other day!), Alison was continuously complaining about not feeling well. While the other cousins were playing, riding bikes, and horsing around, Alison just wanted to lie around.
There was definitely something wrong, but it didn’t register with us. It wasn’t until she got physically sick on the Cog Railway to the top of Mount Washington that we realized we needed to do something. It was Saturday, and we were off to the hospital.
It wasn’t long before we were told we needed to transfer Alison to Dartmouth Hitchcock Medical Center, where a pediatric gastroenterologist was coming off her vacation on a Sunday to give Alison a procedure to determine what was causing this young girl to be so sick.
The next morning, we were told that Alison has Crohn’s disease.
“She has what?”
The doctor explained the disease to us, and immediately started Alison on a high dose of Prednisone. Thus began our journey…
Looking back at pictures, we were shocked that we were unable to see there was a problem way before the doctor told us. She was emaciated and pale from being anemic, and was very tired. How did we not see this? Why hadn’t we noticed? Was it something we did in her upbringing? (Editor’s note: Here we go again, with the crying…) Was it something in our past that we passed along? How could this be happening to our family?
All we could think of was that this was happening to her because of something we did. We still wonder about that.
As Alison rested in her hospital bed, we began the long journey to learn everything we could about Crohn’s disease. That journey continues to this day.
About a year after Alison’s diagnosis, her brother, Ryan, was also diagnosed with Crohn’s disease. Although they both have Crohn’s, the disease affected them very differently.
As young children, a bowel disease is devastating. The kids were uncomfortable on trips and didn’t want to be in unfamiliar territory. We learned to understand that this was directly related to the comfort they had when they knew where the closest bathroom was, and their anxiety when they couldn’t locate a bathroom. This was difficult for us and we may have pushed too hard because we simply didn’t understand.
So what were some of the obstacles we faced, and how did we deal with them?
We were told that both kids were behind the average in their growth pattern, and this would continue for some time. We were concerned, but the experts were right: eventually they caught up.
The disease also affected their interactions with their friends. When the kids felt sick, they didn’t want to venture far from the bathroom — a well-founded concern for sure. Over time, we became very aware that we all needed to know the location of every bathroom wherever we went, and we never hesitated when they said they had to go. This could be frustrating at times for us — so we can only imagine how frustrating it must have been for them. (Editor’s note: Hey Dad, remember Christmas two years ago, when we went skiing at Mount Washington and I was so sick I made you guys pull over on the highway so I could go to the bathroom on the side of the highway, during a snowstorm, in -1 degree weather? Classic!)
We learned a lot about the serious drugs that are used to help treat this disease, which currently has no medical cure. Several of the drugs are used for cancer treatment. This really scared us. We researched the heck out of everything and never hesitated to ask her doctors questions. Not that all the answers made us feel better, but it helped us make decisions as to what we felt were the best treatments for each of our kids.
Remicade was a “miracle drug” for both kids at one point. It’s administered through an IV in the hospital every 6–8 weeks. Watching your child get medication in the infusion suites, which are predominately occupied by chemotherapy patients, is not easy.
Then there’s the cost of treatment. A single Remicade treatment costs more than $10,000 out of pocket. Insurance coverage is very important, as is finding a doctor willing to work within your financial parameters.
The ongoing journey of dealing with Crohn’s disease in the family involves knowing when to talk and when not to. We would do anything to relieve the suffering we’ve seen our children endure, but at the same time, we know there is nothing more that we can do.
We have learned many things over the past 23 years, but the most important was to support both kids, be sympathetic to what they’re going through, try to comfort them when it’s needed, and get them to accept the situation and take responsibility for their health and the lifestyle they choose. (Editor’s note: Dad, are you telling me to stop running marathons? BE HONEST.)
It doesn’t matter how old your kids are — we are still their parents, and we want to protect and help them.
To wrap up this post, I asked my parents two questions…
What is your best piece of advice to fellow parents whose kids are sick?
Mom: “Have patience. When your child is having a tough time and he or she needs to vent, don’t take their words or actions personally. This is much easier said than done!”
Dad: “Expect to be inconvenienced. Try to put yourself in your child’s shoes and understand that the inconvenience they are experiencing is much worse than yours! Be continuously encouraging, and always be a good listener.”
What do you wish you knew when Ryan and I were first diagnosed?
Mom: “I wish I had a better understanding of the disease and how it would affect our whole family. I wish I knew how best to help you guys, because I felt like there was nothing we could do to help you feel better.”
Dad: “When we first learned about your diagnosis, we didn’t know where to turn. The internet wasn’t what it is now. Research the disease, the treatment options, the side effects, and everything you can get your hands on. Doctors will make recommendations for you, but you need to understand them and ask the right questions before choosing a course of action.”
Thanks for sharing, parents! I’m wicked lucky to have you both.
15 Responses
Hi Ali,
I have never commented but I just wanted to say that I find all your Crohn’s posts to be so interesting. I hope that doesn’t sound weird! I learn a lot from them so thank you! Your dad and husband’s posts were beautiful. A kind of weird question, but I wonder back when you were in the office setting, how did you handle Crohn’s and the urgency? Like, did you ever have to book it out of meetings, etc. Did Crohn’s play a part in your reasoning to go freelance fulltime and (I’m assuming here) work from home?
Not a weird question at all! Being in the office was so hard — YES, I did frequently have to run out of meetings and HUSTLE to the bathroom. Fortunately my office was pretty close to the bathroom, and with three stalls there were rarely lines and I didn’t have to wait (thank god). Of course, that was when I worked at Dance Spirit and was very close with my coworkers, all of whom were female and were super understanding. It was more difficult when I went to JackRabbit — there was only one bathroom and we had to share it with the customers in the store. There was ALWAYS a line, and the bathroom wasn’t on the floor I worked on, so that was really tough and caused a great deal of anxiety. Crohn’s did not play a part in deciding to go freelance. I was actually super healthy when I made the switch (I actually miss being in an office setting!), so that wasn’t why I made the career change.
As a marathon runner with UC, I *love* this series. Relieved to hear that you take your laptop to the bathroom during flares too. I have been known to watch entire netflix series when things get really bad.
Thanks for this!
My parents told me the same thing your dad answered. Doctors can give guidance and recommendations, but ultimately, the choice is yours on how to proceed, what to do, etc. #BestAdviceEver
I really appreciate that you and your family have shared your experiences with Crohn’s. It’s given me a much better perspective of the effects and impact of the disease. Mad props to you for your strength and positivity throughout the years.
Could you talk a little bit more about your brother’s experience with Crohn’s? Your Dad mentions that the two of you had very different experiences, but he doesn’t really elaborate. Does Crohn’s affect men and women differently?
My brother is just a bit more of a private person than I am when it comes to Crohn’s, so I wanted to be respectful of that without talking too much about his symptoms, emotions, etc. The major difference in the way the disease affects us — and I don’t believe it has to do with gender, just the presence of inflammation in our respective bodies — is that I will be generally healthy most of the time, but when I get a flare-up, it pretty much knocks me completely out of commission. I get the bloody diarrhea, the pain, the fevers, and the inability to be further than 15 seconds away from a bathroom at any given time. The way my brother experiences Crohn’s is that he is more affected by it on the day-to-day, but in a much more mild way. So his stomach doesn’t react well after he eats most of the time and he’ll have to spend quite a bit of time in the bathroom, but he doesn’t experience flare-ups like I do. (We each think the other has it worse!) He remains on Remicade, which has proven effective for him. I hope that helps — if not, happy to elaborate further to answer whatever questions you may have. Thanks for reading!
Interesting! I think I’m a blend of you both. I have it mildly most all of the time. But my last two flares were total bitches that landed me in the hospital.
To Ali’s parents,
Thank you for sharing the Crohn’s experience from a parent’s perspective. It is obvious you are wonderful parents because you have raised such a lovely and talented daughter. I don’t personally know Ali but my daughter Michelle and I have regularly visited her blog since Michelle was diagnosed with Crohn’s disease a few years ago at age 23. (Michelle’s younger brother was diagnosed with Ulcerative Colitis just a few months later; we understand the double whammy though count ourselves a bit fortunate that they were young adults as opposed to children when they got sick.) Like you we knew next to nothing about Crohn’s disease at the time of diagnosis. We took to the Internet and it was our great fortune to come across Ali’s blog. Her spirit, energy, honesty, warmth and humor were a light for us during a very dark time. When it felt like life wouldn’t be normal again, we saw through Ali a framework for a full and meaningful way to live with the disease. We’ve read about Ali’s journey through her pain, sickness, health and great happiness (what a beautiful bride!) as Michelle enjoyed remission, flared again, got better, flared again…you know how it goes.
Mostly I want you both to know that your child helped my child at a time when I was pretty much at a loss for what to do or say.
Well, this is the nicest comment ever. So I am going to go ahead and retire from blogging now. I’VE PEAKED! (Seriously, Patti, thank you and Michelle for reading and for saying such nice things. It means the world.)
Please don’t retire, we would miss you so much!
From one Crohn’s parent to another, thank you for your perspective and sharing. It’s a tough road, but I appreciate your honesty. Thanks!
You’ve done a great job putting the spotlight on Crohn’s (and other digestive diseases) and being so open and honest in your discussions (as I just read on a blog about mental illness “f*ck stigma!”…and oops sorry for swearing on your parents guest post lol). This has been such an eye opener, and the link to the HealthiNation series was so appreciated (great video, and nice to connect your voice to your blog). Thanks!
You’re allowed to swear! We’re all allowed to swear when discussing Crohn’s-related things!
I love your parents. I think this perspective is invaluable to anyone with a sick child, especially one with Chron’s. Thanks for sharing, mom and dad!
This, exactly: ‘Looking back at pictures, we were shocked that we were unable to see there was a problem way before the doctor told us.’
Our baby was diagnosed with a congenital heart disease almost one year ago, at three months old. He has had surgery and is happy and healthy now, but we still struggle to look at pictures from his first months without thinking the exact same thing. I always thought as a mother you would know something is wrong with your kid, but that’s too much to ask of yourself. Yes, you will realize when something is out of the ordinary, but if the disease has always been there, your sick kid is normal to you.