I’m A Parent With Crohn’s Disease — Here’s How That’s Worked Out For Me
By Paula Schuck
PHOTO © lyndseyerin/Twenty20
Apr 23, 2020
I was in the hospital waiting on surgery for a bowel obstruction when we got the phone call — the one you dream of when you are waiting to adopt.
We'd been matched with a healthy baby girl. Our adoption dream was about to come true, but for one small thing: the acute pain across my abdomen from a blockage, which meant I couldn't eat. How could I take care of a child when my body refused to function, when machines fed me liquids and the pain would not go away?
This is a question I asked myself for many years. Having Crohn’s disease — an incurable, inflammatory bowel disease — can be isolating. I was 14 when I was first diagnosed after several months of weight loss, diarrhea, nausea and stomach pain. In high school, I was in and out of the hospital many times. I finished first year university and was working part time in Waterloo when my bowel perforated in the middle of the night. It was July 20th. I was 20.
"For two years, while we worked through defining our intention to adopt, ... having Crohn’s disease felt like a huge flaw."
An ambulance took me straight to the hospital, a surgeon patched me back together and in September I returned to school to keep studying and eventually finish my undergraduate degree. Over the next 12 years, bowel obstructions and resections happened often. At least six times I had to stop everything and have major surgery followed by weeks of recuperation and reintroduction of food. In between, I met someone, fell in love, went to journalism school at Ryerson, got married and launched a career as a news reporter. But every single time I left my job and was hospitalized, it became harder to return to the newsroom. That last few months on staff, I spent a lot of time writing laying down on a sofa in the women’s restroom.
Crohn's and having a baby
While people with Crohn’s can often get pregnant, endometriosis and scar tissue from surgeries for bowel obstructions meant getting pregnant was unlikely, so we opted to adopt when we were ready to become parents.
For two years, while we worked through defining our intention to adopt, applying and then making that a reality, having Crohn’s disease felt like a huge flaw. But did you know that 19 per cent of the population in Canada struggles with chronic pain? In Canada, an estimated 129,000 people are affected by Crohn’s disease.
The morning after we got the call indicating we’d been matched with a baby girl, I had a bowel resection. They removed about a foot of diseased intestine that time. The baby was safe and healthy and living with a foster family. Birth parents had chosen us, and Children’s Aid agreed, so she was coming home to us. But when?
This mom feels chronic pain has changed her as a parent, but she's trying to rebuild her life. Read about her experience here.
My motivation to get out of the hospital was greater than ever, but I was a little anxious, to say the least. How would parenting an infant work after major surgery and how would parenting with acute Crohn's disease and chronic pain pan out over time? I doubted myself occasionally, but in a different way than many parents did. I wondered if I had the energy, if I could stay well and out of hospital, or if I’d struggle with flare-ups that were worse or more frequent.
From the minute she arrived in our home, all of my priorities shifted. Many parents the world over say that, but I was starting out with an infant and acute Crohn's disease. I was in my 30s and my life experience had taught me I was resilient. I began working harder at managing my disease and I started doing things a bit differently. I even learned to value the positive lessons from this disease.
How that worked out for me
Exhaustion is a big part of Crohn’s disease. You know how everyone tells new parents to sleep when the baby sleeps? That part wasn’t even remotely negotiable. In fact, I rarely fought that. I slept when my girls slept and woke when they did. We often napped together and for the first five to seven years of both of their lives I was asleep by 9:30 p.m. daily.
"I like to think that I’ve shown my kids, over the course of their childhood, not to give up or give in to pain ...."
I started to eat better than I had before, working to squeeze in three quick healthy meals whenever possible. Before becoming a parent, I was often irresponsible about nutrition. For instance, despite knowing that I couldn’t tolerate popcorn, I’d eat it when my husband and I went to the movies. That could mean an entire day or more spent in severe pain, a trip to the hospital the next day, severe nausea and dehydration. Food had been my enemy since symptoms first began, so I either avoided it or tried to bully it into submission.
After adopting our first, I realized I needed the energy to show up every day and I had to model better eating habits, so I cut out the things that I knew were big triggers for flare-ups. I ate better, knowing she was always looking on. I started doing yoga and I quit social drinking for well over a decade. Alcohol only served to make me more tired than I already was, and it didn’t mix with Crohn’s medications.
By the time we adopted our second child, I was in remission and I stepped up my workout game. My youngest had special needs and she was a constant flurry of activity. I needed to be able to keep up with her, plus yoga and pilates were my respite. My own experience navigating health care and insurance were strengths when it came time to advocate for a daughter with FASD (fetal alcohol spectrum disorder), a benefit that I couldn’t have foreseen.
Read about another mom's experience parenting with chronic pain here.
As a parent and someone who juggled a chronic disease, I planned purposefully for so many scenarios. If I was sick, I needed a support system. For years, my mom, mother-in-law and husband stepped in, caring for the kids and staying at our house, walking them back and forth to school whenever I went to hospital.
"I’m not for a moment suggesting I have cured anything or discovered a magic formula."
When work in the newsroom was no longer possible, I transitioned to working from home. My workflow revolved around the pain and fatigue. If I needed a break in the middle of the day when the kids were in school, I took it. Knowing that flare-ups were extremely unpredictable, I worked ahead and mapped my days out often.
I like to think that I’ve shown my kids, over the course of their childhood, not to give up or give in to pain, but to figure out ways to sometimes accept treatment, acknowledge limitations and move forward anyway.
But as I said, Crohn's has no cure. It’s treated with medicine and sometimes surgery. I’m not for a moment suggesting I have cured anything or discovered a magic formula. For decades, I felt a need to hide symptoms and even my diagnosis. It was always in my mind as a huge character flaw or a factor that would be held against us when we finally went to court to finalize both of the kid’s adoptions.
Now, as a parent of two teenage daughters, reflecting back, I can see that disease and chronic pain actually forced me to do things differently. It gave me a unique lens and it made me more resilient and flexible — and sometimes, that has been an asset on the parenting journey.