How to Explain Your J-Pouch to Your Kidsby Brooke Abbott Patient Advocate
When I was diagnosed with ulcerative colitis, I was told that surgery was a possibility, but that it could only happen after you were done having children. Fast forward to four years later, when I found myself listening to the surgeon say, “We will be removing your colon and replacing it with an ileostomy first, and then a J-pouch. It’s a three-step process…”
I was in shock. I wasn’t finished having children. My only son (whose nickname is Hippo) was 2 1/2, at the time. Well, clearly the information I was given was wrong. And here I was in a hospital bed feeling like the walls were closing in on me. They were giving me a choice, but not really giving me a choice. And I was trying to reconcile with the misinformation I had been living with for so long. And then there was the stoma and surgery … and what was a J-pouch, anyway?
Is my child capable of understanding all this?
I was incredibly overwhelmed and confused, as I looked at the pictures of this thing that was going to save my life. I learned that a J-pouch is used to allow the contents of your bowel to leave your body when you have to have your colon and rectum surgically removed, according to the Crohn’s and Colitis Foundation.
Suddenly, I thought of my little Hippo at home. A smart boy, sweet and kind. But Mommy coming home after several weeks away with an appliance on her tummy only to have to eventually go back two more times to get new stuff in her body was going to be hard to explain to him.
This surgery was also coming on the heels of our family splitting into two homes. And then there was the tendency Hippo had toward literal interpretations — for instance, when we took holy communion at church, he believed I was actually eating a piece of Jesus’ body and drinking his blood because I was a vampire who really loved Jesus. Yeah … explaining the J-pouch was going to be quite the task.
After agreeing to the three-step surgery, I sat with my nurse. He had two young kids and had just adopted his third, a toddler around Hippo’s age. I asked him what I should do.
He looked me in the eye and said, “Tell him the truth. Don’t act like he won’t understand. Normalize it by continuing to talk about it. I’ve seen your little one on Facetime, and he’s no fool. Kids get it more than adults do sometimes.”
That’s when it hit me — I was overthinking this. I thought about how my surgeon explained it to me, combined it with a little Mr. Rogers, and sprinkled in some mommy sass to come up with a plan.
Prepping the non-patient
Before I left the hospital, my mom, my brother, my grandmother, and my son’s father all had conversations with little Hippo about Mommy not feeling well. He already was used to Mommy being in the hospital, So, starting off the conversation with “Mommy got something that is gonna make her feel better” was the perfect segue for me to jump in with big reveal.
He looked me in the eye and said, “Tell [your son] the truth. Don’t act like he won’t understand. Normalize [your illness] by continuing to talk about it. I’ve seen your little one on Facetime, and he’s no fool. Kids get it more than adults do sometimes.”
Depending on the age of your child, having these conversations also opens up a path for questions they may have and allows for their comfort level to rise with the idea of Mom or Dad’s new treatment. It can also make the idea of surgery seem not so scary.
Explaining your new plumbing for surgery
I was always a visual person growing up. And as I revisited shows like “Sesame Street,” “Mr. Rogers’ Neighborhood,” and “Blue’s Clues” with my little one, I found that visuals work well for teaching children. I used some body apps on the iPad to show my toddler the inside of our bodies. Then, to compare and contrast, I showed him all the parts in his body. And all the healthy parts of his body. Then I showed him all the parts that were in my body. The healthy ones and the ones they had to remove because they were not healthy anymore. At the time, my little one was too little for a picture of an actual J-pouch, but as he got older, I was able to show him some more graphic photos and answer his questions. It’s important you meet your children where they are in their understanding and comfort.
My explanation took place post-surgery because my surgery was an emergency and there was little time to talk to Hippo. But if you are able to speak with your children before your surgery, I highly suggest you do, talking about what the surgery will entail. Now, the details of your explanation should be dependent upon the age of your child(ren) and their learning capabilities. Find some great visual tools to use if you can; for example, there are companies that make stuffed toys in the shapes of organs or small models of the body that allow you to remove and replace organs.
Continuing the conversation
My conversation with my toddler post-surgery wasn’t a “one and done.” As he has continued to grow and his knowledge of inflammatory bowel disease (IBD) has grown, I encourage his questions and comments about post-surgery life. He understands the daily functions of my J-pouch, but I have thrown in proper terminology here and there to help ease him into a more a scientific explanation of IBD and life with IBD.
It’s important that his knowledge of IBD is as extensive as mine or any patient. My life with ulcerative colitis is his life with ulcerative colitis. This disease and all autoimmune diseases affect the entire family. As his mother, it’s my job to respect how my disease affects his life and our relationship.
I’ve also brought my little Hippo to doctor’s appointments over the years. He has built a rapport with my doctors. When he is with me, I always allow time for him to ask questions or voice his concerns. I’m also fortunate to have doctors who engage with my child and other family members. Of course, that was a prerequisite when choosing my team. It was important that they shared the same views on IBD and the lifestyle changes it brings.
Our children are often the light we need in our moments of darkness. Help them pave the path with truth and comfort. It isn't always easy to speak about our changes in health with our children, but honesty is always the best policy.