Common IBD procedures
She had the barium x rays and that was really hard for her because she couldn’t swallow enough of the barium for them. So that was a hard day. I think getting ready for the colonoscopy, you know, having to cleanse your system and having to take all those horrible solutions was really hard for her. We weren’t even sure she’d be able to have the colonoscopy because she kept throwing it back up again. But she did. And it’s pretty scary because it involves anesthesia for a kid. I think the concern about the anesthesia was hard for me.
Colonoscopy and endoscopy
All of his procedures were scary for me as a parent; he is my oldest, and I’d never experienced anything like that before. The colonoscopy was scary, but it wasn’t a choice for him; it was just something that we had to do. It was hard for me to sit outside and know that they were performing it, because it’s invasive. But they gave him medication, so he was unaware of what was going on. After the colonoscopy I was a little bit concerned because he slept for a long time; I guess it depends on the person, and on how the medication affects them, but it took him a long time to come out of it. He likes to sleep anyway, though, so that could have been a factor!
When he had an endoscopy it was the same thing– it was nerve wracking, because this was my child and I wasn’t in there with him. Although, to be honest, I’m glad I wasn’t there because I wouldn’t want to see them sticking tubes down my child’s throat or anything. But these tests made it easy for the doctors to know which medications he really needed to be on– which medications were going to help– and he hasn’t had to have either one since. So that’s a good thing.
It was all pretty daunting and scary. I’ve never been through anything like that. It was jarring to stand there and watch the procedures, but still not know what the drugs were going to do to her. It was also difficult to have to share a room. What she was going through was occupying my head enough, without also having to worry about sharing a bathroom. Just trying to understand and get information from the doctors about what was happening was difficult. I never felt like I was really up to speed. It was a huge relief when she got a single room because there were some moments of peace and solitary time to think and take a deep breath, and that seemed to help.
Finding the right medications
Finding the Right Medication
We’ve learned that some medications work better for some people than they do for others. It took us a long time to find something that was really going to work for him. The medication he is taking now is something that the doctors didn’t even want to give him initially because they were afraid of allergic reactions; it affects different people in different ways. But they started out giving it to him every six weeks, and you could see instantaneous results. He came home and felt so good– he was healthy and ready to get out there and go back to a normal life. But towards the end of the six weeks, all of a sudden we’d start seeing little symptoms coming back; he wouldn’t tell me, I just would notice it. I noticed with this treatment that he would start gaining weight and he’d be healthier and going to the bathroom on a regular basis, but as the six weeks wore on he would stop eating and start losing weight again– little symptoms that when put together are a big warning sign. But then he started getting the treatment every four weeks and it has been eight months now that he’s been perfectly fine– no symptoms whatsoever. You really just have to keep an eye on your child and be vigilant. The doctors are here to help and to make us feel better, but you really need to be on top of it and constantly looking for new things.
Manages his Own Medicine
He manages his own medicine. I don’t do the medication; he knows what to take. He goes to camp and he doesn’t give the pills to the nurse; he does it himself.
Mother of a 14 year old with Crohn’s disease.
His medications work for him, and he’s in a routine with them. It’s like getting up in the morning and taking your vitamins or brushing your teeth– you just do these things. He takes his medications, and they seem to help reduce his symptoms. We had to learn in February how to teach him how to swallow pills; they were big pills, and there were a lot of them. The only way we could get them down is the way the nurses showed us– trying it with a piece of bread. Some of the medications you end up with you can’t mash up, because they are painkillers and if you mash them up they could numb your throat. So you really do need to swallow pills, and one of the things we were doing was having him take them with bread. Another way we tried was just before he was ready to gulp down some water, have him pop the pill and then have the water and then gulp. So it was an experience, but by now he can take about four or five pills in one shot.