Meet Mary and her husband, Chris. Chris has Crohn's Disease.
Q: Tell me a little bit about you and your husband.
A: Chris and I first locked eyes five years ago at college. Chris was in the second year of his Masters program studying medieval history and I was a junior getting my BA in history. We were in a split course and one of the rare times graduate and undergraduate students really mixed. Part way through the quarter he disappeared from class and I was left wondering what happened to him. As it turns out he was going through the long and difficult process of getting diagnosed with Crohn’s Disease. It wasn’t until a year later, at a history conference, that we actually learned each other’s names and got to know one another. I was about to leave and teach in Turkey for the summer and I didn’t want to lose touch with him again so I took a leap and asked him out! We made it official and just had our four year anniversary in May (two days before our wedding)!
Q: When did your husband start experiencing symptoms? How did he tell you about his disease?
A: We suspect that Chris has actually been having symptoms his whole life. His family is one where doctors are for severed limbs and anything less is just you being a baby. Chris recalls, even in elementary school, spending the night in the bathroom and crying in pain. He was officially diagnosed in February of 2011. He was very open about the disease and even when we first started dating he was experiencing an infection called epididymitis caused by his medications and disease.
Q: Was Crohn’s an issue on your wedding day? How did you prepare/handle it?
A: Crohn’s was definitely an issue around our wedding, but not in the way you’d think. Between his original diagnosis and getting married Chris’ diagnosis was changed to Ulcerative Colitis and he had a total colectomy. For two years we did great! Chris lost 80 pounds, got his masters degree, and he started a doctoral program for history. With our wedding right around the corner, moving to a new house, and finals Chris started to not feel well. And that’s how, four days before the wedding, Chris was re-diagnosed with Crohn’s.
Q: How do you support your husband during a flare up? Are there certain things you do to help him?
A: Patience. And Gatorade. When Chris is sick and not feeling well I tend to spend most of my time making sure he feels loved, cared for, and knows I am there for him. When you don’t feel well the last thing you need is to be stressed out by grocery shopping or trying to stock your own toilet paper.
Q: What is the best thing you can do for your husband when he is sick and in pain?
A: Flares are scary. They are stressful. The best thing to do for him is to advocate for him. Whether it’s at the doctor’s office and making sure they know how often he has pooped today or in the hospital and making sure he gets meds when he needs them. Being sick and in pain makes it almost impossible to keep all your health issues and needs straight so having someone there to help and advocate is really critical.
Q: In what ways does Crohn’s affect your relationship?
A: It has made us a very strong couple. We have spent anniversaries and holidays in the hospital. I changed his ileostomy bag. We moved across the country and both got advanced degrees while he has been sick. We have never had a fight. We talk openly and frequently about his health, both mental and physical, and what we need from each other. It has forced us to be patient and kind and to ask questions.
Q: What goes through your head when your husband is in a flare?
A: I am a planner through and through. As soon as he knows he is sick I think through my schedule and identify what meetings or projects can shift around to make way for me to be with him as much as possible. I think about what support we will need to call in from family and friends. I make a grocery list of flavored Gatorades and jell-o…and any food that is shaped like Star Wars characters.
Q: Have you noticed a change in your husband since his diagnosis?
A: We are in a unique situation since I have been with him through two diagnoses (Ulcerative Colitis and now Crohn’s again) and he was originally diagnosed before we met. With the most recent re-diagnosis a few weeks ago we definitely went through the classic stages of grief: shock, denial, anger, depression, and then acceptance. With a clear plan of care and a really wonderful physicians it has been great to see Chris reach acceptance and become increasingly optimistic about his disease.
Q: Describe a point in time where you’ve “kicked IBD” together?
A: I think Chris has kicked IBD every single day since his diagnosis five years ago. He was in his MA program at the time, and anyone who has been sick knows it’s hard to concentrate and get work done. He always pushed himself to get back to his research and to writing his thesis no matter how sick he was. After his colectomy and after every hospitalization he turned around and worked. Last year he was able to complete his incredible thesis and defend and begin a doctoral program. To be accepted into a PhD program after so many years of frustration and sickness and work (and to have finished his first year with a 4.0) speaks to how he thoroughly he has kicked IBD.