An Ordinary Mom's Musings

Catchy title right? A little TMI? We’re just getting started.

Many children with Autism have issues with two different parts of “Poop Issues”. The first is chronic constipation. No one is exactly sure why this frequently accompanies Autism. Sometimes it’s due to their severely self-restricted diet. Some doctor’s feel there is a link between the brain and the gut. In our case, D also has low muscle tone or Hypotonia. After everything we have tried, I am fairly confident that this directly ties into the problem if not being his sole cause. Your GI tract is made up of muscles and if they aren’t contracting strongly enough it leads to a build up.

D was first diagnosed with severe constipation at 16 months. It is likely that since starting solid foods he had been constipated but we just didn’t know. At this point however he was screaming all the time and his poor little bottom was bright red and bleeding. None of the diaper rash treatments were working. We had to have a special mixture and keep his diaper off him completely for several days. 16 month old without a diaper… That was fun. Especially at night when he’s wetting on everything and I have to keep him dry. (My husband was in Iraq for this fun stuff.)

We tested for food allergens to see if he was allergic to anything. He came back with a few. I remember milk being one of them, so we took him off milk despite it being his absolute favorite thing in the world. No difference.

We started him on Miralax. For about 5 years or so that worked pretty well. And then it stopped working. What followed was trying literally every medication there is out there for constipation, some not even cleared for children in our attempt to find something that would work.

At this stage, we tried allergy testing again and it came back with 12 different foods! We tried taking him off all of them for 4 months. The only one we really saw any difference with was wheat, but it didn’t alleviate it enough to stop taking medicine. His constipation was only slightly better. We tried natural remedies, we tried pretty much everything. We did find one medication that would work but it gave him the most horrendous gas 24 hours a day and he had to take 6 tablespoons of this syrupy liquid which he hated. He got to the point where he flat out refused to take it. All this was going on at the age of 5 and 6.

I will never forget the day the doctor called me and told me that it was time to take the next step.

She wanted to operate on my little boy and insert what is used as a feeding tube for other patients, but in our case, it would be used to flush out his colon every night. I was terrified of this. How do I let the doctors do this? But how do I let him go on screaming in pain? At this point, he had developed a Mega Colon because so much was backed up in his colon that he was never fully emptying it and even when we did it would just fill right back up. This can lead to cancer and a whole host of other issues.

In August 2013, he went under the knife and had his surgery which is called a cecostomy. To date, it is the second hardest decision I think we have ever had to make for his care.
We block out 30 mins to an hour every night and hook him up to his tubing while sitting on the toilet, where we use a flush of saline, Castile soap, and glycerine to flush out his bowels. While I’d love to have that time free at night for our family and for him, but this was the best decision ever. Occasionally we have to adjust the recipe for the flush but constipation is technically a thing of the past.

Due to his Autism and rigid eating habits, they think we will need to keep the cecostomy until he is in his 20’s. They think by then his understanding of the need to take the medicine and regulating his diet will be easier. Until that time we’ll just keep blocking that time out at night.

The second part of “Poop” and Autism? Fecal smearing. What is fecal smearing you might ask? it’s exactly what it sounds like. They smear their own poop. Sometimes they draw with it, other times play with it. It was all over him, walls, toys, the bed, the carpet… Luckily the stage of going through that was blessedly short for us though none the less horrific. This is also common in people with Autism. Grown adults have been known to do it. It made me feel SO much better when I learned that it is common also with extremely gifted and intelligent people. Mozart, for one, is known to have done it.
This is FAR more than you ever wanted to know about “Poop and Autism”. But now you know. 😉 By sharing this I hope other families realize they aren’t alone in this struggle.