How I talk to my kids about my Crohn's disease

Three years ago, after having had a j-pouch for 16 years, I became horribly ill and required extensive emergency surgery. At that time, I was working full time as a Pediatric Nurse Practitioner and was happily married with two young children: Mallory, 8 years old, and Colby, 5 years old.  When my pouch started to fail, I struggled to find any medical option that would prevent yet another surgery. However, after many unsuccessful tries, my body just became too sick and surgery became inevitable. The least of my worries at that time was myself- I worried about my relationship with my husband and how I could effectively mother my kids.  It was a tough couple of months, but we made it through, and we are a stronger family now than we have ever been.

When I was almost 15 years old, I started to have diarrhea all the time, severe abdominal pains, and blood in my stool. And not just a little blood, a lot. It was like that for almost a year, before I told my parents. I didn’t tell them, because I knew that if I did, they would take me to a doctor and unpleasant things would happen. I still vividly remember the night I told my mom, the toilet bowl was full of blood and I had forgotten to flush. She was worried I was having a heavy period, only I wasn’t on my period at the time. So she asked me a bunch of questions, and then went downstairs. A few minutes later she came back upstairs and said that she wanted to take me to the Emergency Department. The next few months consisted of many doctors’ appointments, millions of questions, and uncomfortable procedures. My parents were honest and open with me, but the providers as a whole were not. They spoke either as if I wasn’t even present or in hushed tones behind closed doors.  I remember feeling as if I had zero control over anything that was happening to my body, and this made everything seem so much worse. My parents did what they could to make sure that I knew what was going on and that I could choose my own course of treatment.  That was so important to me.

I have never hidden my Crohn’s disease from my kids. Kids are so much smarter than we “adults” give them credit for.  Mallory and Colby know that I have a disease that has no cure, which makes me very tired and gives me a bad tummy ache.  They know that sometimes I have to stay in the hospital and that I poop from a hole in my stomach.  On rough days when I spend a lot of time in bed, they come cuddle, warm up my heat pack, and make warm tea. They helped name my stoma- Winnie (yes, the pooh).  My kids have seen my naked body, scars, ostomy bag, and all. And you know what? They still love me, and I will always be their momma.  

Even though my children aren’t the ones who are experiencing my illness, I want them to be fully informed, because I don’t want them to ever feel like they were blindsided or lied to.  Kids as a whole are observant and can pick up in subtle changes in behavior or demeanor, which many adults may overlook.  Lying to them can be pointless, because they have likely already been putting things together in their own mind. If we don’t given them correct information, the story they create in their imagination is often inaccurate.  I want my kids to know that being their momma is my number one priority, but in order to do that, I need to manage my Crohn’s effectively.  Sometimes that means missing out on social things, overnight hospitalizations, and surgeries. By ensuring that they understand what I am dealing with, I find that they are able to truly experience what they mean to me, because they see me fight the fatigue, nausea, and abdominal pain for them on a daily basis.

When they ask questions, which they do, I answer them. I provide them with age appropriate, honest information.  Mallory once asked me if she was going to get Crohn’s disease and need to get an ostomy too. My answer?  I don’t know. I hope not, but if you do, I am an expert and we will help you get through it. I asked her if there was anything going on that made her think about it- I mean, maybe she was having symptoms I was unaware of. Luckily, this was not the case, she was just plain curious. I have told her my diagnosis story, and expressed to her the importance of telling me about any symptoms she may be having (as I was having symptoms for almost a year myself before I told my parents). Mallory doesn’t ask many questions, she just quietly observes and takes it all in. However, the conversations we do have are open and honest, and I will do everything I can to keep it that way.

Colby, like every 8 year old boy, thinks everything to do with poop and farting is funny. He bursts into fits of giggles when my stoma gurgles. He has watched as I change my appliance or empty my bag. He likes to select the air freshener and to remind me to flush. He loves having jobs that make him feel important.  However, my momma’s boy struggles when I need to be hospitalized. He is very routine oriented, and any deviation from the usual throws him off for weeks. Any sign of illness and he is doing what he can to help me recover at home- he tucks me in better than anyone else, knows where I keep my rice pillow, that it takes 2 minutes in the microwave, and that I only take one teaspoon of sugar in my tea.

If they have one thing that sticks out in their mind about me, I don’t want it to be that I have Crohn’s Disease- I want it to be that I loved them like crazy, and that they never doubted that.

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Charlotte Rensberger is from Battle Creek, Michigan. She has been battling Crohn's disease since she was 16 years old and currently has a permanent ileostomy at age 36. She has been married for 13 years and her husband owns a beef jerky and chocolate store. They have two school aged children who keep them busy. Charlotte is a Pediatric Nurse Practitioner with 16 years of pediatric nursing experience. She currently works in a community hospital's newborn nursery and loves her job! In her spare time, she bakes, re-finishes furniture, buys antiques, does crafts, ands sing with her church's worship band. She started a Facebook page/blog in 2015 when she underwent permanent ileostomy surgery. During that time, she realized that she enjoys writing and finds it fun, relaxing, and therapeutic. Charlotte is happy to be featured as a guest blogger for Girls with Guts!