Recent research suggests as much as 50% of children with autism have gastrointestinal issues as a co-morbid condition associated with autism spectrum disorder. For Sam, constipation has been a chronic condition. In a typical child, you would treat with more water, fruits and veggies, and more fiber and the situation would be resolved. As with everything associated with autism, it’s not that easy. Leaky gut, weak muscles, withholding of stool, food intolerances, yeast, bacteria, sensory issues, indifference to pain, medications, nutritional deficiencies, and a host of other issues can create a vicious cycle of constipation and diarrhea. If the parent confuses the constipation for diarrhea, the problem can get much worse. We have tried everything from dietary changes and supplementation to long-term Miralax use, enemas, suppositories, and scheduled elimination times. I know many families dealing with this issue on-going as we are, and I suppose we have been lucky in that Sam’s issues haven’t required hospitalization, until now.
Sam is on a gluten-free, casein-free, soy-free, organic diet. He takes natural dietary fiber twice a day. He drinks prune juice daily. He takes probiotics and digestive enzymes. He has scheduled elimination times (because he does not initiate toileting on his own). And yet, he was not eliminating. Because he is 16 and requests privacy when in the bathroom, we were not watching as closely as we should have been. He would flush and say he went (Big Poop!) so we believed him. That was our first mistake.
On Wednesday, his teacher messaged me and asked if Sam was on a new laxative. He was having accidents. Diarrhea for Sam is often a symptom of constipation because it’s merely leakage around impacted stool, so when he got home from school, I gave him extra fiber. A couple of hours after that, I gave him magnesium citrate. When neither worked and he was obviously uncomfortable on the toilet, I grew concerned. Another hour later, his stomach became swollen and hard. I feared a blockage with the fiber creating gas behind it, bloating his belly. We took him to the nearest hospital.
I assumed the doctor would check his belly, prescribe an enema and laxatives and send us home. That was not the case.
They took an x-ray and were shocked how enlarged and impacted his large intestine was. He also had a large blockage at the rectum preventing stool from passing. They discussed several options including surgery.
After consulting with Children’s Hospital, it was decided that Sam would be transferred by ambulance to Children’s and the GI team would be consulted. The director of the department is the doctor we saw several years prior, so I felt comfortable with him overseeing Sam’s treatment plan.
I was feeling very guilty for not having realized the severity of his constipation and how much pain and discomfort he was obviously in. As proactive as I thought I was, I hadn’t been vigilant enough.
Sam actually loved the ambulance ride, looking around at all the supplies and watching his Dad follow us in our car. When the ambulance driver learned that Sam loves trains, he showed Sam a photo on his cell phone of a train that he took and then took the long way to Children’s to go over the railroad tracks. The small kindness of strangers makes a huge difference.
Once we were at Children’s, they gave him Ativan, did a CT scan and attempted an enema. It wouldn’t go in. They, then, inserted a Nasogastric tube (NG) through his nose and into his stomach by which they would pump GoLYTELY fluid, a mixture of Polyethylene Glycol (Miralax) and Electrolytes. GoLYTELY is often used as a colon cleanse prior to a colonoscopy.
He was still miserable. It would take several hours for the medication to begin softening the stool so it could pass. He required constant line-of-sight supervision as he would pull his NG tube out every chance he got. He was successful on Thursday and we had to hold him down as they re-inserted it. Each time the NG tube was placed, he had to have an x-ray to be sure it was in the right place, and his physician would have to verify it before the medication could resume. On Friday, he again attempted to pull it out, resulting in it being placed back in, x-ray taken, and verified so that medication could resume. Each time, it would cause another delay in treatment.
Sam did not sleep that first night in the hospital. When he did doze, I was so afraid he would wake and pull out the tube, I didn’t sleep. Because it wouldn’t stick to his skin and he kept messing with it, they put a lot of tape on the NG tube, which might have bothered him even more, and more likely he’d try to remove it at the first chance he got.
When the medication did begin working, Sam was too weak to make it to the toilet in time, thus creating monumental messes you can’t imagine and we didn’t know where to start cleaning. This is when I realized how sorely underpaid nurses are, God bless them. They never batted an eye at helping Sam get cleaned up and preserving his dignity as much as possible.
After 4 hours of sleep the second night in the hospital and some good movement, Sam seemed a little perkier. He was still trying to pull out the tube, but at least he was smiling a little. He began to understand how to roll from one side to the other, and lift himself up, to assist the nurses in changing him.
He was allowed clear liquids, nothing red, which limited him to chicken broth, green or orange jello, and apple juice. He didn’t like the broth and they were out of green jello so that left him with orange jello and apple juice. Every couple of hours, he would have some jello and juice. Because they were pumping the liquid into his belly, he wasn’t as hungry as you might suspect.
Grandma and Rachel came to visit. Chili, Sam’s service dog, was a regular visitor as well, though she didn’t stay the entire time. The hospital was very welcoming to her and she garnered a lot of attention coming and going.
By Saturday, Sam had had enough hospital. He began refusing to get up to use the restroom and was very cranky about getting his vital signs taken. He didn’t want to be changed. He was DONE. Unfortunately, the medical establishment doesn’t just discharge someone because they’re tired of being at the hospital. Sam’s stool had to be mostly clear liquid, like what they were pumping in, and the clean colon verified by x-ray, before considering discharge. We began visiting the toilet as close to hourly as possible in the hopes that the next one would be the clear one. By mid-afternoon, we were close and I called the nurse in to verify. She called the doctor to order the x-ray.
By late afternoon, Sam was completely uncooperative. He was exhausted. In between the x-ray and the discharge orders, Sam fell asleep. We woke him up to remove the IV and NG tube and Sam freaked out. He began kicking at us, hitting, and smacking himself in the head. It was scary and disturbing as we hadn’t seen behavior like that in years. Sam stands 5’11″ and 150 lbs. Quite a bit larger and stronger, and more difficult to handle. But I didn’t want them to restrain him and cause further stress on him so Bob and I got his body physically safe, dismissing his nurse until we had him calm.
After a few minutes, he was cooperative for the NG tube removal and prepared to go home. We think it was because we woke him up that he reacted the way he did. After all, that was what he had been asking for since we got to the hospital.
He’s now prescribed 4-5 squares of chocolate X-Lax every evening and schedule toilet time each morning after breakfast. If unsuccessful, another scheduled toilet time in the afternoon. He’ll be on this regimen for 3 months until the colon returns to normal size and function. Or as close to normal as it can be. I will forever be monitoring output from him, now, so we never have to go through this again.
There are a few good website and videos out there to help families deal with constipation and gut issues:
The bottom line is this. The autistic gut and the typical gut are not the same. At least half the kids with autism have some gut issues related to their diagnosis and need more aggressive treatment and more consistent intervention. This is more than simply drinking enough water. It’s a complex situation that requires a complex, and often unconventional treatment. Impaction and obstruction can happen to anyone because symptoms often go unreported by the child and are invisible to the parent. The gut is the body’s second brain and should be taken just as seriously.