Learning Life as a Parent of IBD
Guest Post by Tracy Jackson
Knowledge is Power
When I became pregnant, I read everything. I read parenting books, psychology books, what to expect books, you name it, I probably read it.
To me, knowledge is power, the more I know the better it will be to handle things as they come my way. As my kids Sarah and Danielle grew, I read about the “terrible two’s” and raising school age children. Having kids only 15 months apart, I started to get familiar with the teenager books and hoped I could manage the road ahead that they would be facing almost at the same time. Raising a teenager is hard. The idea is you are supposed to be giving them more responsibility as they mature, guiding them towards independence & adulthood. Adding Crohn’s to the mix of teenager really complicates things.
Danielle was 11 years old when she first showed symptoms of IBD. Over the course of 6 months, she lost over 30 lbs., unable to keep anything in her body. This high energy, sports loving girl went from playing outside with friends all the time to turning away from everyone because she couldn’t be the outgoing person she was, feeling so exhausted and constantly tied to the toilet.
Wading through the health care system advocating for her, so doctors would take this more seriously than a bad stomach virus, was exhausting all on its own. My husband Mike and I were sent from doctor to doctor, hospital to hospital with Danielle, until she finally got so bad at our first appointment with our new GI, Dr. Kovacs, she admitted her to North York General Hospital (NYGH) right away.
Dr. Kovacs and the team at the hospital did anything and everything possible to stop the endless diarrhea and vomiting, and the going to the bathroom 26 times a day. We were at the tipping point when her pancreas and kidneys started to shut down. I have never been so scared in my life than I was at that moment.
NYGH set me up in the room with Danielle and I was with her every step of the way. Sarah was even able to stay a couple of nights with us. Danielle endured weeks of bowel rest, getting a PICC line, TPN and an official diagnosis of indeterminate colitis the day before her 12th birthday. It felt like overnight she lost her innocence of childhood. After her scopes and pathology results, and a day pass to go home for a few hours to celebrate her birthday, she started on Remicade. After being in there for a month, we all finally were able to go home. A few months later with an MRI, we got the diagnosis of Crohn’s disease.
Growing up Crohnie
We started to accept this as our new life, preparing as you would for any life change. We started schedules for pills and infusions, and I started reading everything I could on Crohn’s.
Overnight, our conversations in the house became a lot more grown up. We have talks about boys and concerts, acne and school. We also have conversations about the latest IBD research, the G.E.M. Project, surgeries, cancer risks, and depression. Drinking and drugs take on a whole new meaning when you mix Crohn’s medications into the conversation.
Sarah has learned to be an even more supportive sister in those social situations when teenagers go off on their own and I can’t be there to explain to their peers. One positive to this is it has brought my girls closer. They both have a respect for how fragile life is and seem to appreciate their time together more. They still tease each other like only sisters can.
After only 5 months Danielle had a severe allergic reaction to Remicade, changing our course to find remission. There are days with setbacks that make you feel powerless in all of this. We are trying to find the right combination of drugs to allow Danielle to lead the life she wants and contemplating the risks associated with surgery. I would be so happy if I never saw Prednisone again.
A Parent’s Diagnosis, Too
Since diagnosis I have had my own moments of helplessness, wondering what I could have done to prevent this; or what can I do to make it go away. I long for those days of Mommy and Me classes where you join with like minded parents to share what works and what doesn’t. So far I haven’t found one for Crohn’s parents yet. Online forums have helped.
I also blog to share stories and IBD news. I am determined to find other parents in my area to set up our own network so others don’t feel as alone as I do. I finally realize I can’t do this on my own and need support. I know my teenagers need it too. In my entire search I still haven’t found a book on how to raise a teenager with Crohn’s. I guess it hasn’t yet been written and I will just have to learn this part as we go.