Tuesday, August 18, 2015

A Colonoscopy for a Wheelchair User

In the United States, for your 50th birthday present they give you a dose of happy drugs, roll you on your side, and slide a probe up your butt. It’s not as fun as it sounds, though, because the day before that you aren’t allowed to eat any food, and you experience the soupiest diarrhea of your life.

But I didn’t accept my 50th birthday present. I wasn’t comfortable with the logistics, given that I’m a wheelchair user. As my 52nd birthday approached, however, I reconsidered and thought it might be important to get a colonoscopy. I’ve heard that colon cancer sucks, and that catching it early improves your survival rate dramatically. For me, the problem was the preparation required the day before the procedure. Patients have to drink a laxative concoction which induces sudden and uncontrollable bowel movements (or BMs, as my mother, a real lady, used to call them). Patients stay close to the toilet to avoid accidents. I have an overhead lift system to get me from wheelchair to toilet, and the transfer process takes 30 to 60 seconds. Hence the problem.

The obvious solution would be for me to sit on the toilet for the entire 3 to 5 hours of, let’s call it vigorous bowel activity. Because I no longer can shift my weight around to remain comfortable, I have an elaborate seating system on my wheelchair, with various air chambers and cushions, and the ability to recline my upper body and raise my feet. Even this system barely allows me to get through the day without a sore butt. I dreaded the thought of sitting on the toilet seat for five hours.

But I knew what I had to do. I scheduled a colonoscopy for last Friday morning. The procedure called for me to take a laxative pill at noon on Thursday and then start drinking the laxative cocktail at 4 PM. I sat on the toilet at 3 PM. It didn’t take long before my butt ached, so we became innovative. First, we added two small pillows between me and the seat. That helped for about half an hour. Then we tried two big pillows. That helped for another half hour. Then Kim ran to the corner drugstore and bought one of those inflatable donuts that women use after they have a baby. That got me through the rest of the five-hour ordeal, but it wasn’t fun.

I reported to Maine Medical Center at 7:00 AM on Friday for a 7:30 procedure, having had nothing to eat since 6:00 AM on Thursday morning, and nothing to drink since 9:00 PM Thursday night. Kim and a couple of the nurses transferred me from my wheelchair to the hospital bed. One nurse introduced herself, and I thought she said her name was Harley. “No, it’s Carly, but it would be so much cooler if it was Harley.” The other nurses and Kim and I agreed that for the rest of my stay she would be Harley, and she was.

Harley asked me a ton of medical and personal questions, including, “How tall are you?”

“About four feet, six inches,” I responded.

“I can see what kind of day this is going to be,” she said with a smile.

Next, Harley tried to start an IV, with no success. Two other nurses poked me a total of four other times, until I had five holes in me, but still no IV started. Each nurse apologized profusely. I explained that I am a difficult prick, so to speak, even when I’m properly hydrated. Then they brought in the heavy artillery. I can’t remember her name, but she said she usually worked “downstairs.” After a few minutes, she was able to thread the catheter in my vein and establish an IV.

Quite late now for my 7:30 colonoscopy, they wheeled me into the procedure room. Two nurses and the doctor rolled me over on my side to expose my, shall we say, point of entry. They hung a bag of the sedative solution on my IV stand but couldn’t get it to flow into my vein. I asked one of the nurses (not Harley) if the IV was working. “We will make it work,” she said with determination. So, instead of a constant drip throughout the procedure, they force-fed two syringes of the drug directly into my IV port, and it worked.

I slept through the probe insertion. I woke up midway through the removal, which is when they do the inspection and polyp harvesting. I felt no discomfort. As I watched on the screen, the doctor inched the probe out and removed several polyps. A little wire would emerge from the probe and lasso the polyp. The doctor would then draw the wire back into the probe and pinch the polyp off the wall of the colon. Interesting stuff. He told me that nothing appeared cancerous, but I’ll get a pathologist’s report in a few days. Because I didn’t have a clean colonoscopy, I’ll have to go back in 3 to 5 years instead of the standard 10 years.

Why am I sharing this story with you? If you are a disabled person, this serves as a reminder that even though you may have a serious condition, like MS, for example, you still need to consider your overall health and well-being, and you need to get the screenings recommended for people your age.

If you’re not a disabled person, and you are avoiding screenings like a colonoscopy, I hope this post makes you feel guilty. Given that I made it through this procedure, certainly you can.

In closing, if you live in the United States, or somewhere else where colonoscopies are recommended at the half century mark, I wish you a very shitty 50th birthday, and I mean that in the nicest possible way.

12 comments:

  1. My husband and I were just talking about this very thing! My husband had a colonoscopy this year and had to eat a "special" diet for a week (we live in Canada), and then had to drink the laxative preparation the day before. I was out of town at the time and he said it was probably a good idea that he had the bathroom to himself.

    I also have MS, and walk (at a snails pace) with a walker. I was figured that prep for a colonoscopy would mean that I'd be camped out on the toilet for a day. Thanks to you for sharing your experience, with a great dose of humour, I am now less worried about how to manage this crappy procedure.

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    1. I'm glad my story helped you mentally prepare for your colonoscopy, your crappy procedure :-)

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    2. Thanks so much for sharing your story. My husband is having this procedure next week. We've been trying to figure out the prep. I think you did it for us. We'll get the donut first. Bless you! You have a great sense of self and humor+ you're very caring.

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  2. Well, I'm not having any more of these tests for cancer because I'm paying for something called an Oncoblot test every 2 years. This detects many kinds of cancer and tells you what type it is so you have a pretty good chance of finding the location. It detects it at a much earlier level than any of the standard tests are able to. I'm substituting it for a mammogram, a colonoscopy and even dermatology visits. You can do a websearch but here's one article:

    http://www.news-medical.net/news/20140627/ONCOblot-test-identifies-ENOX2-cancer-marker-paves-way-for-minimally-invasive-tests.aspx

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    1. Daphne, thanks for that information. I had not heard of this technology. I'm going to keep an eye on it, but I'm not ready to go all in on this concept yet.

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    2. Thanks for sharing this. I am 57 and haven't had any type of cancer screening for several reasons. My wheelchair weighs 200 pounds and I have to way to transport it to and from doctors' offices. But more than than, every doctor I contacted told me I would need to bring with me people who can lift me on and off the exam table. I have no such people. I can't even get badly needed dental work done unless I can bring people to lift me.

      Not to mention the unmentionable problem of having to sit on the toilet for hours on end before the colonoscopy.

      Thanks to Daphne for the info about the ONCOblot testing! It's expensive and I survive on Disability, but it still might be worth looking into.

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    3. Laurie, you certainly have some difficult challenges. One suggestion, however, is that if your wheelchair reclines you should be able to have dental work done without transferring to their dental chair. I do that all the time.

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  3. I am 8yrs overdue for this. My Dr says he will admit me into hosp for prep et al.
    Laurie your doctors response makes me mad and by the ADA they are breaking FEDERAL LAW.

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  4. Inspired by your post, Mitch, I am going or my first colonoscopy tomorrow. I am also 52, and I have been avoiding it because of the day-before proceedings. Thanks to you, I have a plan. And you're right - just because I have MS doesn't mean I'm off the hook for anything else to go wrong.

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  5. So glad to have found this thank you, quick google colonoscopy for disabled and here I found myself. My mother has got to have one here in the UK, not routine at 50 like the US, only a home test kit at 60 then full coloncopsy if needed. I was trying to think of a way she’s cope with the laxative but looks like toilet camping is the only answer.

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