Recently L has been talking a lot about his belly hurting. He has been vomiting only occasionally, but he tells me frequently he needs to puke. There’s nothing super worrisome going on, but his belly has been swollen and he has spells on a lot of days where he very clearly doesn’t feel good in between playing happily.

Here is a glimpse into why, for us, a bellyache is awfully complicated.

When he tells me his belly hurts or he needs to puke, it could be:

• A stomach bug
• His belly hurt earlier and he is three and he likes to repeat things
• He ate something that would upset anyone’s stomach
• He ate something that wouldn’t upset most people’s stomach, but it’s upsetting his
• He wants to get my attention
• His many supplements and vitamins are upsetting his stomach because he didn’t eat enough
• He ate too much
• He ate a normal amount but for whatever reason it’s moving through a little too slowly
• He wants to watch a movie and I let him have extra screentime when he doesn’t feel good
• He ate something that got lodged in his gut somewhere and is causing irritation (he once puked a strawberry he had eaten a full two weeks earlier)
• He has an overgrowth of gut bacteria causing a buildup of gas, which can lead to swollen belly and vomiting (since bacteria feed on sugar and he lives on carbs, and overgrowth is common in guts with poor motility)
• He recently learned what a “puke bowl” is and thinks it’s fun
• He needs to poop
• His belly feels a little off and the easiest way to tell me about that is to say he’s going to puke
• He doesn’t actually feel bad but he doesn’t want me to touch his g-button right now
• It’s bedtime and he wants to get out of bed
• Overnight tube feeds are finally catching up to him and we need to give him a break from them
• Other very unlikely but much worse possibilities that I try not to think about because very unlikely and also terrifying

Because we hardly ever know exactly which one (or combination) of these things it is, the ideal response could include:

• Getting him to eat something
• Not pushing him to eat because it will upset his stomach more
• Skipping overnight tube feeds for a night
• Giving him attention
• Taking him to the potty
• Letting him pretend to puke in a “puke bowl”
• Waiting for him to actually puke to clear out whatever the problem is
• Getting him to eat a balanced, low-carb diet (excuse me while I take a moment to double over in laughter)
• Letting him have some screentime and teaching him he doesn’t have to fib about puking in order to watch a show
• Treating stomach bug or bacterial overgrowth with antibiotics
  • This is complicated for reasons I’ll explain in a minute
• Teach him not to cry wolf
• Tell him it’s time for bed and he’s not getting up to pretend to puke or poop when he doesn’t really need to.
• Let him get out of bed to poop or puke
• Panicking about the potential for very unlikely but terrifying scenarios and rushing to the ER (for the record, we’ve never yet felt the need to do this)

Now, I’m no mathemagician, but if my calculations are correct that multiplies out to roughly 1.2 kajillion possible combinations of cause and response. And the thing is, at any given moment we are very unlikely to know the actual cause, so we have to guess at the appropriate response.

So it gets messy. (Literally.)

Potential consequences of choosing the wrong response:

• Pushing him to eat when he shouldn’t might make him vomit, which would result in fewer net calories than just letting him not eat to start with. Over time, if this happens too often it will lead to weight loss and dehydration and he’ll have to go back on TPN
• Not encouraging him to eat when he needs some food in his belly might make him feel worse, and if he misses out on too many calories over time he’ll start to lose weight and he’ll have to go back on TPN
• We can’t decrease his vitamins, so if it turns out he’s miserable because the supplements upset his stomach, he’ll need IV vitamins and/or TPN
• Trying to enforce a balanced, low-carb diet will mean he will never eat anything ever except maybe bacon
• Letting him get out of bed to poop or puke when he is fibbing about it just to get out of bed will lead to neverending bedtimes every night
• Not letting him to get out of bed when he needs to poop or puke will lead to a big mess and probably permanent psychological scarring from having a terribly mean mother
• Trying to teach him not to cry wolf might make him feel like he shouldn’t tell me when he really does need to poop or puke. See above re: psychological scarring
• Skipping overnight tube feeds might make him eat more, and one-night trials of this have gone well (yay!) but if he’s not absorbing what he’s eating he’ll start to feel worse and worse, eat less and less and end up back on TPN
• Too much screentime will clearly turn him into a hyperactive slush-minded psycopath, because studies
• Antibiotics wreak havoc on his gut so they are an absolute last resort, and also the usual suspects to treat overgrowth have not been successful for him. If he has significantly increased diarrhea/vomiting due to antibiotics, he will dehydrate and lose weight and end up back on TPN
• Assuming that very unlikely, terrifying possibilities are not the cause could lead to the worst, or could lead to more surgeries and more lost bowel, which would mean ending up back on TPN, possibly indefinitely.

See any patterns there?

I think the pervasive state of acting within these unknowns is one of the hardest things to really understand for people looking in from the outside. If you’ve never dealt with complex chronic illness, it seems like there should be diagnosis → treatment → health, but for us it’s constant managing and balancing, and I want to really emphasize the constant part of that.

There’s a clear diagnosis, but that diagnosis comes with all sorts of secondary and tertiary issues that are not always so clear. Each issue, even if we can pinpoint the actual source of the problem, may have a different appropriate response for different people’s bodies, or on different days with the same person. Often the best option is choosing the lesser of two evils, which makes those choices extra hard – for example, we are constantly focused on weight gain and nutrition, so in a scenario where he doesn’t want to eat and I suspect pushing food will make him vomit, but it might actually make him feel better or stay the same, it’s hard for me to accept skipping those calories, because I’m supposed to be making him grow. For us, every facet of taking care of L is permeated with navigating those unknowns and balancing acts.

In any case, the vast majority of the time it’s nothing, or at least just the same old stuff. But because of all these unknowns, and because this has been going on long enough, we’re going in for some imaging next week to say hi to the old malrotated small bowel and see what it’s been up to in there. This might seem stressful, but it’s actually a pretty routine thing for someone with significant bowel issues, and I have spent enough time thinking about all the worst scenarios and wondering how to respond to the everyday scenarios that it should actually be a relief to have visual confirmation of what, if anything, is not quite right.

Say cheese, Frankentestine!

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