How IBD Parents Can Help
Since the average age of onset for inflammatory bowel disease (Crohn’s Disease and Ulcerative Colitis) is between 15-35, parents often make up a large volume of the caretakers. Having been diagnosed with ulcerative colitis at the age of 13, I do have some thoughts on how parents can make their child’s life easier.
Lets talk about activities…
Extra curricular activities play a part in many children and teenagers lives. Whether it be athletics, music, theater, boy/girl scouts, etc most children and teens are involved in at least one activity other than school. Extra curricular activities are important for so many reasons.
They foster good self esteem whereas a child might not be held in high regard in other aspects of their individual life. Having at least one thing that a person feels like they excel at – or are at least an important asset to – is a wonderful feeling. It makes someone feel like they are part of a community and/or higher calling.
However, when a child or teenager with inflammatory bowel disease (IBD) is having a flare up, needs surgery, is having a bad reaction to a medication, is too fatigued, has been up all night in pain, cannot stop running to the bathroom, the list goes on…. That person has to not only miss out on being present for that game, practice, recital, etc but they also can fall behind very easily. And not being able to keep up for reasons outside of your control is one of the worst feelings; especially as a child or young adult.
What My Parents Did To Help
My parents helped me in so many situations related to my activity: competitive swimming. There is one thing that comes to mind that I think would also be good for some parents to be aware of. After a long hospitalization where I was given 80mg of prednisone intravenously and then was told to continue taking orally, I felt ready to return to swim practice. I was nervous to go back because not only had I been away for so long and didn’t even know how to talk about what was going on, but I definitely looked like I was on prednisone. I was very heavy, had a definite moon face and pretty much looked like a different person. Add to that, I was a swimmer.. So..well, I was in a bathing suite which just showed off my body even more.
My mom called my coach and explained the situation before I returned. She asked him to have a brief talk with my teammates and let them know that I was returning and feeling better but that the medications I had been given and was currently taking was making my body change. He expressed (I was told) that no one was to make a comment about the way I looked – good or bad.
And no one did. If anything, my teammates were more compassionate and welcomed me with open arms. I was so nervous about returning but I do think that conversation my coach had with my teammates laid down a lot of the groundwork. It made it so there was no elephant in the room. There wasn’t chatter about what was going on with me or why I literally looked like a different human being because my coach was fairly upfront about it all.
My mom pushed for that to happen and thinking back, it was one of the best things that could have happened because swimming was still a safe place for me. With Crohn’s Disease and ulcerative colitis, caregivers often feel helpless leaving them open for depression and anxiety themselves. Doing something like this can help make you feel like you are standing up for your loved one in a way you actually can.
Stand up to Negative Comments
After being on and off of prednisone for two years, I was finally off of it and back to swimming again in the manner in which I should have been. I did, however, have loads of stretch marks all over my body; mainly my back.
During one swim meet, an official asked me what the marks were on me back and told me it looked like I had been whipped and beaten (I was 14 years old at the time.) He then asked a couple of other swimmers to come take a look which caused a bit of a scene. Thankfully, they were smart enough not to comment. I went into the next race in tears and didn’t perform very well. When I saw my coach and parents, I told them what happened and they were furious.
My parents immediately spoke to the head official, filed a complaint, and that man lost the award he was up for that year.
The point is…
I saw that my parents and other adults were willing to fight for me. I had experienced so much negativity in the medical world already that I began to lose faith in others and their ability to protect me. Knowing that my parents were upset about this just like I was because they understood how devastating it was to hear some of these comments made me feel better. It made me feel like I had someone to fight for me when I was too young and couldn’t understand the true reality of things just yet.
Being a caregiver to someone with Crohn’s Disease or ulcerative colitis can be beyond frustrating and upsetting. As someone who has experienced the other side (the patient’s side,) I can tell you that there are certain things that will always stick out in my mind and are the reason I am still here today. My parents were present, tried to understand the important things in my life and make those as easy for me as possible, stood up for me when I wasn’t treated fairly in both the medical and non-medical world, and they gave me unconditional support and love.
As a parent or caregiver to someone with any type of chronic illness, as long as you provide the last thing mentioned (unconditional love and support,) that person will always be grateful! I just wanted to share a couple examples of how my parents helped me navigate IBD life.