In the beginning our doctor told us this story about a family going out to a Chinese restaurant. It was a feast, a banquet, and the kid with Crohn’s doesn’t eat very much. At the end of the meal there is tons of food left on the table. The boy puts all the food in front of his father and says, “Finish everything.” The father was like, “What? I’ve already eaten.” And the boy said, “That’s how I feel all the time.” I think that was good story for him to tell us because it’s so easy for us to get into a battle about eating. I’m constantly on him to eat more or eat better. But ultimately he’s going to have to learn to manage that.
Diet and Weight
In his case there are no dietary issues, so there have never been restrictions. He didn’t have the typical symptoms of a bowel disease: he didn’t have constant diarrhea, bleeding, cramping or stomach pain, just this slow growing abscess that finally presented itself. As a result, even following surgery and diagnosis, food has never been an issue. During the period of time before he was in remission, weight gain was an issue. We could detect a flare up only by watching his weight, because there really weren’t other symptoms. He might seem a little lethargic, but there was no way to know other than by his weight.
Going Back to a Regular Diet
The doctor said that my son could eventually start going back to his normal foods, once his stomach had healed. But you should still watch out for anything that’s acidy, because that can irritate the stomach. Also, be careful about seeds, because they can cause irritation and lead to diverticulitis- he doesn’t need that on top of everything else! So there are some things that, as a parent, you’ve got to watch and say to your child, “You’ve had enough of that.” For me it’s hard because since he is lactose intolerant, we have to watch what he eats anyway. But eventually, when everything is all healed, he can just kind of watch what he eats, and as long as he doesn’t overdo it, he can go back to eating the things that he really likes.
The only struggle was that the one solution to his weight loss recommended to us was a shake, which he didn’t like initially. It’s very hard to ask a kid to eat when they’re not hungry and they really don’t want to eat. This still happens to this day, when we think that maybe he hasn’t eaten well, and we want him to have a shake. It’s eleven o’clock at night, and he’s watching TV, and no one wants to put that kind of goop in their body. What I would say to anyone who uses these shakes is that they’re available online, chocolate is a great flavor, and if you put them in your blender and add a lot of Ben and Jerry’s chocolate ice cream, you increase the calories, and it really increases the flavor. You have to drink them pretty fast, though. We’ve used chocolate brownie ice cream, chocolate ice cream, milk and the packet for it.
One humorous way it has affected our family is that we keep our house stocked with high sugar junk food. It’s been a problem for everybody else: me, my husband, everyone. But we just feel as though if he wants to eat, he should have whatever he needs or whatever he wants. That has been kind of funny.
There was a period when she wasn’t able to gain weight and so we met with a nutritionist and we were trying to do special diets that boosted calories and fat. That was a little hard because the rest of us wanted to eat low fat, low calorie foods. So creating a meal that addressed all her needs and creating snacks that addressed all her needs was fairly time consuming for a while. The other challenge was to create things that she wanted to eat, because she didn’t want to eat often. She wasn’t hungry for a long time. And that was part of the challenge: not only to get things that she would eat but to get things that she wanted to eat and were good for her. And she hates Boost; they wanted her to drink three or four of those a day and she just couldn’t do it. So we tried all sorts of other things. I would say the smoothies were the best; she could tolerate them and she liked them. We would make ice cream smoothies and fruit smoothies with yogurt and that kind of thing.
The Big Picture
We learned a lot from his becoming lactose intolerant, which really can cause a lot of stomach problems. All of these things go hand in hand the lactose intolerance, the IBS, and the Crohn’s. If one of them acts up, everything else does too. And so you’ve really got to see the big picture of what you should and should not eat, and when the doctor was giving us suggestions on what he can and can’t eat, the diet that he showed us was the lactose free diet, which helps with all three conditions.