Celebrations | IBD | Ostomy
I am a dad, and my wife has Crohn’s Disease…
Charlotte and I met in 2004, we pretty much had a whirlwind romance. At the time, she had already been diagnosed with Crohn’s Disease, and had a few major surgeries. She was open with me about it, and her belly full of scars. She didn’t have a permanent ostomy, yet, though. For the most part, she seemed healthy other than the occasional ED visit for dehydration. We had 2 kids, after some stressful pregnancies, and scheduled cesarean sections.
I had never heard of Crohn’s Disease before meeting Charlotte, but since meeting her, I have had the education of a lifetime. It’s hard watching you love deal with this disease. When we went out, she was always aware of bathrooms, how long she would be in the car, or timing her meals so that she shouldn’t need the restroom during a trip. She gave a lot of thought to what she could eat when we went out, couldn’t eat out before a movie, because then she would need the restroom during the show. I sat with her at countless doctor appointments where she would recount her symptoms, and not be believed.
In 2015, her j-pouch failed, big time. Again, we were faced with a doctor who just simply didn’t believe us. We went for a 2nd opinion at the University of Chicago, and she was in surgery less than a week later. We were told that surgery would take about 3 hours, and it ended up being almost 12. I was terrified, and with no medical background, I was overwhelmed. It was evident that Charlotte had been sick for much longer than the surgeon knew about- but we knew, just no one believed us. When she woke up from surgery, in pain, that I couldn’t even imagine, it took days to get it under control. I felt lost, I didn’t know what to do, or how long we would be away from our home and our kids.
The kids were with her parents, and they were living life as normally as they could. Our friends helped with some distractions, and quality time. Charlotte and I worried about being away from them, as well as what life would be like when we returned home. Life didn’t really change for them; they knew something major had happened to their mom- she wasn’t the same as when she left. How do you explain something like pooping through a hole in your stomach to a 6 and 9-year-old? It’s our usual motto to tell them the truth, even though we tend to leave out some of the gory details. However, it still wasn’t a super easy discussion to have.
The recovery from major surgery was long and challenging. It took months for her to get her stamina back, so I picked up a lot of the responsibility relating to the kids and the house. Even little things like grocery trips zapped her energy, so I found myself hanging out with the kids in the evening, while she had an early night. We made a “bed” of sorts in the living room, so she could be with everyone, without having to make unnecessary trips up and down the stairs. The kids enjoyed snuggling and watching movies with her during her more coherent periods. She improved very slowly and started to become the mom they used to know.
Now, don’t get me wrong, it was tough, but this surgery was not all bad. Once the recovery period was over, and we were learning how to live with Whinnie (her stoma), some things improved. She doesn’t have the urgency she used to, so we can spend longer time in the car without so many stops. We’ve gone to some concerts and done things we haven’t been able to do before. And even her diet doesn’t have to be quite as strict as it used to be, though sometimes she still pays for her bad choices!
Each time we face surgery or hospitalization, our friends and family are always amazed by how resilient we are. Unfortunately, or fortunately, however you look at it, these things are just how this disease works, and we do what needs to be done, and move on. Do we have another choice we don’t know about? Charlotte always worries about me when she’s sick- am I eating, getting sleep, needing anything? She arranges for her friends to feed me and check on me, when it should be the least of her worries. That’s the mother in her, and she views me as her biggest kid, I guess.
As we continue our life together, I will celebrate every Crohn’s related victory we are able to have, like, this year we are coaching our daughter’s softball team together. Both of us, at the same time, not just me. This is huge! A few years ago, I didn’t think that would ever be something we could do. Who knows, maybe we won’t have the opportunity again. However, I will seize every day of wellness, and reprieve we get from Crohn’s Disease.
I sometimes take on more than my fair share of housework, yard work, or kid related activities. I am glad to do it, because the reality is, if the tables were turned, she would do it for me…. No doubt in my mind.
Cliff Rensberger is an Indiana local, who was transplanted to Michigan. He loves all things sports. Notre Dame football. Chicago Cubs baseball. Indiana University basketball. He is the cook of the family, and enjoys all things meat and barbecue related. Cliff plays acoustic and electric guitar in the church worship band, and serves in the youth ministry.