To conclude Crohn’s and Colitis Awareness Week, my friend Sara is back on the blog to share about her stepson CJ’s diagnosis with Crohn’s disease just over a year ago, and how he is doing now. Thanks, Sara!
Kerri: Hi Sara! Thanks for sharing your family’s story about CJ’s Crohn’s Disease diagnosis with us today. Tell us a bit about yourself!
Sara: I’m Sara. I am a mom, caregiver + patient advocate, writer, a lover of photography and a real estate agent in Ottawa. I have a blended family with four kids, two boys and two girls, an amazing husband and a five-year-old Australian Shepherd. Both boys have Type 1 Diabetes and one of those boys has Crohn’s.
Tell us more about your experience with CJ’s diagnosis of Crohn’s.
I came into CJ’s life when he was seven years old and I think, in my non-medical opinion that he was born with Crohn’s or developed it very early on. He was always a very slow eater and spent a long time in the washroom. He also never had a big appetite.
After he was diagnosed with Type 1 Diabetes in May 2013 he started to have constipation and stomach pain. We were in and out of the hospital with checks and scans and nothing ever showed anything. The doctor prescribed a laxative to help with the backup. That worked well for almost two years.
Fast forward to [Canadian!] Thanksgiving 2016, that is when things got worse for CJ. CJ was in so much pain just hours after eating and a lot of pain throughout the day that he couldn’t go to school without pain killers. He was spending a long time, upwards of an hour, in the washroom every day. He had “to go” but couldn’t. When he started vomiting a week after Thanksgiving, my husband took him to the Children’s Hospital. They weren’t sure what was happening but again, after scans and tests, nothing but a backup. A few weeks later the pain was much worse, he was vomiting more frequently and we noticed that he was losing weight. Back to the hospital CJ went, and they couldn’t tell what was wrong because nothing was coming back on the tests. They had him in isolation for days, to make sure it wasn’t contagious. He wasn’t.
It was October 30 when they confirmed Crohn’s, when they could not get the scope in far enough due to the ulcers. He was started in biologics that day–because of his diabetes; the steroids would make it more difficult for [keeping his blood sugars in] balance.
How has CJ’s diagnosis affected him? What about the rest of your family?
Honestly, he hasn’t had a flare since he was first diagnosed. He likes that he can have unlimited time in the washrooms at school, but he may take advantage when he is older.
There were no dietary change needs for CJ but there could be when he is older. We eat gluten free at home because of my [Celiac] disease. We have found that the move to a gluten free diet has worked wonders for his washroom needs. He doesn’t need to go as urgently and things move faster. However, when we are out, we need to make sure if he needs a washroom we find one.
The biggest challenge as a family is that there are five of us sharing one washroom. He has the right to kick us out.
What do you wish people understood better or knew about Crohn’s?
I wish people knew that washroom use should never be limited and if someone needs to go, it is a medical need. Someone with Crohn’s may not be able to “hold it”.
Crohn’s is another invisible disease so people rarely “look sick”.
A flare can happen anytime which can be painful. I have had friends who have Crohn’s who cancel plans because they are doubled over in pain and as much as they may want to go to xyz, they just can’t move.
Has connecting online been a part of your experience parenting a kid with Crohn’s? Why or why not–and if so, what has that looked like?
I haven’t connected online with anyone online except for reconnecting with my friends who have Crohn’s. They have helped me understand what it is like for kids their age. And what it can be like for when he moves out on his own.
Thank you, Sara! If you have Crohn’s disease and take biologic (infusion) medicines or are on long term steroid treatments, wearing a Crohn’s disease medical ID bracelet or necklace is important. Check out our selection here.