Broken Colon, Still Rollin'
Q: Tell me a little bit about yourself.
A: I’m a 25-year-old newlywed from Michigan, with moderate Crohn’s and Proctitis. I’m pretty open about having IBD, and a lot of people know me as being active and healthy, with a love of traveling and cooking. But most people don’t know I took the drug Accutane - a drug linked to IBD - twice. I was on high doses of Accutane to treat severe cystic acne about 4 years before my IBD symptoms began. I had no idea it had been pulled from the market until I began researching IBD, and discovered lawsuits brought on by other IBD patients. I have no family history of IBD (I didn’t even know anyone with IBD at the time!), and was even misdiagnosed with Irritable Bowel Syndrome. While none of my doctors will directly say Accutane is what caused my IBD, I still blamed myself and often wondered if I “gave myself” IBD. Of course this is not true, but when I was newly diagnosed, I had a difficult time coping with that. I’m now in remission and doing very well on my treatment plan!
Q: How did you tell your partner about the symptoms you were experiencing?
A: My husband (then boyfriend) knew I had a sensitive stomach, so he wasn’t suspicious of me spending time in the bathroom. But when I started my first flare up, I tried to hide it from him. Mornings were particularly bad - I would sometimes have to go 5-6 times within the first hour after waking up. I would turn on the sink or shower and pretend to be washing up so he wouldn’t figure out I was going to the bathroom. I eventually had a breakdown - we were visiting his parents about an hour away from home when I suddenly felt extremely sick. I told them it was just a tummy bug and when we got back in the car, I started crying and told him something was really wrong, that I thought I was dying. At that point I was going to the bathroom 15+ times a day, and it was mostly blood. He was very supportive, and just three weeks later he took me to my colonoscopy, met my doctor, and helped me cope with my official diagnoses of Crohn’s.
Q: Was Crohn’s an issue on your wedding day? How did you prepare/handle it?
A: Crohn’s made an appearance on the wedding day - I actually spent the morning vomiting! I prepared by trying to keep my routine as normal as possible, but I ended up getting very sick with the flu the weekend before. Lots of rest and hydration, and “flare friendly” foods to keep me energized for events. As soon as I got my stress vomiting out of the way, the rest of the day went beautifully, and I was able to enjoy our delicious dinner and dessert without a peep from my colon.
Q: How does your husband support you through your struggles? Are there specific things he does to care for you?
A: My husband has always been loving and patient. There were so many nights I would be too fatigued to care for myself or our home, and he would pick up extra chores, make sure I was eating, or bring me heating pads when I couldn’t get out of bed. He listened to me cry and scream about hating being alive and in pain, and he allowed me to feel what I needed to feel, without telling me I was wrong or shouldn’t feel that way. He cares for me both physically and emotionally.
Q: What is the best thing your husband could do for you when you’re sick and in pain?
A: Bring me my heated blanket, wrap me up like a burrito, and watch Netflix with me (even though I’ll end up napping). Just BE there with me.
Q: In what ways does Crohn’s affect your love of travelling? Can you think of any specific travelling experiences that Crohn’s has impacted?
A: I’m no longer able to travel “without plans.” When I was in college I studied aboard for a month, and I never worried about where I would eat, when I would get home for the day, etc. Now, I need to have all activities researched beforehand, hotels booked, drive and fly times considered, seats picked… I even pick restaurants ahead of time! This way I never feel the anxiety of being caught without a bathroom, or not being able to locate safe foods. I’ll plan my eating schedules ahead of time so I know I have enough time to digest in case I accidentally eat a trigger food. It’s not the most adventurous, but I don’t want Crohn’s to stop me from seeing the world.
Q: What advice do you have for other Crohn’s patients who are looking to travel?
A: If you’re driving, pack an emergency kit with a roll of TP, wipes, and a change of clothes. Just mentally knowing it’s with you can be very calming. If you’re flying, get an aisle seat or sit in the bulkhead right in front of the bathroom - I promise it’s not that smelly. Don’t let Crohn’s hold you back - if you feel more comfortable planning every little detail, do it! You can still have an amazing time and be adventurous on a pre-planned schedule.
Q: How does your anxiety affect your Crohn’s? Is it a big trigger for you? Has treating (or working to lessen) your anxiety helped you better manage your Crohn’s?
A: Anxiety is definitely a trigger for my symptoms - In the past I have managed it with medications and therapy, both of which were extremely helpful, and I am now managing it through exercise alone. I highly recommend treatment for those who need it, in whichever form they feel is best for them. It has helped my symptoms immensely.
Q: How does your disease change the way you see the world?
A: You definitely begin to appreciate weird things. I appreciate port-o-potties at events, because hey, private bathroom! I also appreciate sitting at a restaurant and enjoying food - that’s not something I’m able to do when I’m not in remission, so I LOVE eating out while I’m able to. Just enjoying the atmosphere is fun for me.
Q: Describe a point in time where you’ve “kicked IBD?"
A: I kicked IBD just recently! My husband and I honeymooned in Maui and it was the most “adventurous” I have ever been. We biked down the volcano and kayaked in the ocean. Both trips were long and physically strenuous, and for once I was able to enjoy a vacation without being “on schedule” or even really thinking about my IBD. It was a great “break” and I felt like I could conquer anything (but I’ll still pre-plan our next trip… just in case)!