I have never been diagnosed with IBD. Never seen a bloody bowel movement. Never lost significant amount of weight in a short period of time. Never curled into a ball because of the excruciating pain inside my guts. Never had severe fatigue that I couldn’t function. (Well, maybe some fatigue. I am a mother after all.) But as a parent of a child with Crohn’s, I feel like I do understand what it is like better than most people. All the parents of young children with inflammatory bowel disease out there probably do.
It’s heartbreaking enough having to watch your child suffer so much. But that really isn’t what I am talking about. My child, our child, is completely dependent on us for all his needs. Even though we are not the ones with the disease we are the ones who really manage it. And by micromanaging his disease, we are the ones learning all the ins and outs of everything he goes through. I believe I can honestly say that we, as his parents, feel his pain.
When he was first diagnosed, we dove into researching what the heck
Crohn’s disease even was and what that meant for our son. We needed to prepare ourselves so that we could make the best decisions possible for him. Just like everyone who starts reading about all the fantastic side effects of all of the different treatments, we were absolutely freaked out. It was a bit of a shock. But we, like everyone else, started to weigh the risks with the benefits. We made decisions that protected him from unnecessary procedures and treatments and agreed to ones that we felt would help him.
Each time he stayed in the hospital, we lived there too. (The showers there are a bit small and I was always worried the door wouldn’t actually lock.) But we suffered with him through every IV, every bag of TPN, and every scoping, CT scan, or MRI. We have been through more colonoscopy preps than I can even remember. We were both always there, always encouraging him to drink just a few more sips and then cleaning up the mess when he
threw it up. We were also living through the constant barrage of people coming in the hospital room to check vitals, give medicine, and change bags. And it seemed as though every single medical staff in the building, for example, each intern, medical student and residents from very diverse and seemingly random departments, were coming in at all hours of the day asking the same, exact questions. Finally when the doctor comes, which is usually pretty rare, they still asked the same questions. These are the real decision makers too. You would think that we would have learned by the second or third hospital visit that we don’t need to be so keen on telling the complete story to everyone.
As to the day to day management of our son’s disease – that was our job too, because our kid really didn’t want to deal with it. And really, that is okay. He is just a kid. It is our job to take care of his needs. So his bowel movements were closely monitored, his food intake was watched, and sleep patterns observed. We began to notice the pattern that he went through as he was beginning to flare better than he ever could. We cracked the code!
Since his diagnosis in 2008, we have lived, eaten and slept IBD because we want to take care of our child the best we can. The reality is that we would rather he didn’t have this disease at all. But that is not what life has dealt us. And because our child was so young when he got it, we also have the unique experiences that make us capable of truly relating to actual patients with IBD.
So speaking as myself again. I may not have IBD, but . . . I get it.