Getting a Colonoscopy Whereas Autistic! — THINKING PERSON’S GUIDE TO AUTISM
Why should autistic adults of a certain age get a colonoscopy? Well, the numbers are scary—1 person in 25 is at risk of developing colorectal cancer during their lifetime. Luckily, there is something that you can do about it. You can get a colonoscopy, which can detect precancerous colorectal growths before they become malignant. Colonoscopies have also contributed to an 88% decrease in risk of dying from colorectal cancer.
A colonoscopy is a procedure in which you are sedated to the point of being asleep, and a doctor inserts a camera into your lower business—your anus—and then up through your rectum and into your colon, or lower intestine, to see if anything is abnormal. If they find anything abnormal, like a polyp, they then remove it before it can turn into something worse like a cancer. It takes less than an hour to do, but you need to prep for it a few days in advance, and some of the prep can be difficult. It is, like a mammogram, a very important test to get as you age even though it can be very unpleasant. But you can do it.
Or can you?
When my doctor first brought up the possibility of a colonoscopy last fall, I was convinced that I could not do it. I am simply too disabled. I’m not only autistic; I have a bunch of autoimmune and physical disabilities, like many autistic people have, and I also worried about being exposed to COVID and other infections in hospitals. And didn’t colonoscopies involved eating really unpleasant things like broth? I don’t eat broth. And the fact that I react very badly to anesthesia…
There was no way that I could do a colonoscopy. Right?
Wrong! As it happened, I was able to do my first colonoscopy at the age of 41 successfully and without any trauma. And I am here to tell you that you might be able to do it too, even if you have concerns similar to mine.
I started preparing for my colonoscopy five months ahead of the actual procedure, which I decided to schedule at a time when Covid and flu rates would be down, and after I could get an updated vaccine. I also started working much harder on my past traumas while in therapy, on the theory that maybe my anesthetic reaction was due to PTSD.
Two weeks before the colonoscopy itself, I made a list, with the help of a support person, of all the questions I had about the procedure. I also talked to other people with my specific physical disabilities about tips for a successful process. Then I met with my doctor, and we talked for a long time, got all my questions answered, and I went down to the colonoscopy suite and looked around—although I could not see the actual operating rooms.
There are two big parts to colonoscopies, and most people I talked to told me that the first part, called the prep, was the worst part. The prep is when you need to empty out your digestive system so that your colon is all clean and the camera can look at it and find anything wrong very easily. If there is any food at all in there the camera cannot see it so well and they might miss something.
Image by David Sánchez-Medina Calderón from Pixabay
There are many preparations used by different places, so I spoke to my doctor specifically about what preparation would work best for me. I have known that for various reasons I have very slow digestive motility. This means that stuff moves through my guts at a slower rate than other people’s. So I actually started the prep a week in advance, by taking extra laxatives and drinking extra fluids. Then, a few days before the procedure, you are asked to go on what is called a low residue diet, which is also very low in fiber. This is so that your intestines do not have bits of food and fiber left in them. I worried about this because my preferred vegetables and fruits were not on the safe list here, but I was able to find enough things to eat for a few days.
Then came the big prep day.
The day before your colonoscopy is the hardest because you are not allowed to eat anything solid at all, or anything that is not clear. I worried that I would get a headache, and that hunger would make my chronic pain worse. Much to my surprise, I did not get that hungry, because I kept eating things like Jell-O and Italian ice and sucking on hard candies. There was no broth involved, and because I was able to take in so much sugar and liquids, I did not get hungry.
In the late afternoon before the procedure, they had me take four pills that started the process of cleaning me out, then a bit later they had me drink a large quantity of powder laxatives mixed with a clear juice of my choice. Throughout that day-before, I took my pain medications and other medications as usual. I also took an antinausea drug along with the laxatives, which calmed my stomach down when my digestive system started to really empty.
That was when I discovered something. Everyone who told me that the prep was bad … probably does not have IBS (irritable bowel syndrome) like I do. To me, the colonoscopy prep was no worse than a bad IBS day; it didn’t even involve that many more bathroom trips. And unlike when I have a terrible IBS-D day, my stomach didn’t hurt because of antinausea drug! Granted, I live with chronic pain and my pain tolerance is pretty high, but I was absolutely amazed that people complained about the gastrointestinal effects of the prep, when it was no different than a typical day for me. In some ways it was better, because I didn’t have to cancel anything or go to somewhere where there might not be a bathroom. However, your experience may be very different from mine, because we have different bodies.
By midnight of the night before the procedure, I was all done with the prep. [CN: bowel movements] I could tell by the color of the waste residue in the toilet bowl. It is supposed to be clear, and if it is not clear by the early morning hours you call your doctor and they may advise you to do something else or they may postpone your procedure until later in the day so that your body works more to get stuff out. I did utilize products to protect my bed and my underwear, as well as baby wipes and soft toilet paper.
I arrived at the hospital in the morning. I got gowned up and ready for the operating room, and then someone put something in my IV and told me it had something in it to relax me. That is all I remember until an hour or two later when I woke up and it was time to go home already. It turns out that with the colonoscopy you are given a sedative, which is different from anesthesia! So I didn’t react to it. I went home to eat and sleep the rest of the day away.
What I want you to know is that people who tell you that colonoscopies are hard may not know how tough you are. They maybe think that you cannot do it when in fact you can do it, because you already do hard things. Many autistic people have significant physical disabilities or diseases and we are used to life being hard, used to dealing with a world that doesn’t make sense for our brains and bodies. Colonoscopies are certainly not designed for our brains and bodies. But just as we learn to get along with and endure in the world, it is entirely possible that you can learn to endure a colonoscopy.
