Monday, September 6, 2021

Colonoscopy While Dealing with Invisible Illnesses

Author's note... This post is taken from my experience and my research. I'm not a doctor and so don't utilize any of my tips unless you talk to your doctor about them.

I just had my first colonoscopy this past week. This is something I had been dreading for at least 20 years, as I have a bad gag reflex and I had heard all of the horror stories about the prep solution being difficult to get down.

One of my biggest worries other than gagging was that I would do all of the prep and it wouldn't be done well enough. This caused me to second-guess the way I interpreted what my doctor said in his "before-the procedure" notes.

As with so many of the experiences that those of us with anxiety worry about, it wasn't as horrible as I thought, though I did run into some issues I hadn't even worried about. As the day came closer, my anxiety increased. I found myself online more and more, looking for tips and the experiences of others to help me fight the worry. 

One thing I always wondered while during my research was, "Do those whose experiences and tips I'm reading also face dealing with invisible illnesses?" As you probably know first-hand, the experience of someone with, for example, anxiety issues already, can totally lose it during a test that even the most positive person might have some anxiety about.

I thought it might be helpful to share what happened in my case to possibly help others facing the same dread over this necessary test.

- I wish I had known why it's so important:

In hindsight, it would have been helpful to know how colon cancer progresses. Remember that I'm not a doctor, but my understanding is in at least most of the cases, polyps develop and those can turn cancerous. So the screening is to look for and cut out those polyps before they have a chance to grow large enough to increase the risk of cancer. 

When I read that, it all made sense and wasn't as scary. Maybe it should have been - I mean, who wants to have something cut out of the inside of their intestines? - but it gave me hope. It actually is pretty cut and dry - if the doctor sees a polyp, he cuts it out. It's biopsied and you know one way or another if it's precancerous or cancerous. Usually, it's not.

I guess I thought it was like a mammogram, which, because I'm a large woman, always seems like a guessing game. Fibrous tissue can easily look like lumps and you have to totally trust that the radiologist reading the scan knows the difference. I've been called in more than once to have a follow-up ultrasound to make sure a questionable area wasn't cancer. 

(But at least mammograms don't include almost a week of prep beforehand.)

- Being fully "cleaned out" before the test:

Until I started my seemingly endless Googling about all this, I didn't realize some of the whys on the importance of the prep. After hearing them, it made it easier to comply.

I'll get into the specifics in a bit, but to sum up, if the doctor can't see the inside wall of the colon clearly, he can't see the polyps and other abnormalities to either fix them or come to an accurate diagnosis. The reason for no red or blue dyes on the clear liquid day is because it can look like blood on the scan.

- The prep week:

My understanding is that not every doctor suggests this method of getting cleaned out, but mine wanted me to do two days of a low-residue diet and one day of a liquid diet before drinking the prep solution.

They suggested that you read over the list of what you can and can't have for those 3-4 days as soon as they come in the mail so that you can grocery shop accordingly. However, because I was anxious about the procedure and I have an eating disorder, I procrastinated even reading the list (does anyone else do that?). I have a hard time during the best week making a grocery list for what I might want to eat in the days ahead - and these restrictions added a good bit of stress. 

So a couple of days before the prep started, I finally looked over my options and tried to plan out what I needed to get. As I live in a small area, have a very tiny fridge, use a dresser for a pantry, and am on a limited budget, I have to be selective in what I buy. 

I figured out a few things... I knew I could eat peanut butter and jelly one or two meals (creamy peanut butter is okay), but I eat jam and fruit spreads so I didn't have jelly. One thing I had to put on the list. I needed white bread because I usually use 12-grain. The second thing on the list. I knew I wanted jello (it's a treat I rarely eat because of blood sugar issues but while I also try to avoid artificial sweeteners) so I found some sugar-free jello and added it. 

Then I started running into questions about both the low-residue and liquid diets. A few of these were... Was beef broth considered a clear liquid? (Yes) Why could I have Diet Coke and not Diet Dr. Pepper, which is my "coffee" every morning? (Because of the cherry flavoring in Diet DP) Was watermelon considered a low-residue food? (Yes) Were strawberries? (NO.) I know well-cooked vegetables were okay but was well-cooked broccoli included? (I couldn't find an answer so I just didn't eat the broccoli). 

I ran into an issue as I got started on the diet - I hadn't thought through enough scenarios. Because I live in an apartment area in my parents' house, I can always get something from them if I don't have it already. I knew they almost always have ice cream (another treat I rarely eat) and I was looking forward to that. But when I went to get some, I realized that all they had were specialty flavors, not plain flavors like chocolate or vanilla. So that was out. 

I hadn't thought about the fact that most things in the low-residue diet didn't crunch and I like that sensation so when that craving hit, I realized that all I had were high fiber items like wheat thins, tortilla chips, and popcorn. I finally found some plain crackers and munched on them.

The list included "well-cooked tender meats." How tender do they have to be to make sure they were tender enough? (Like the broccoli, I couldn't find an answer so I just skipped meat). 

I had questions like these about the majority of items on the list so it was a difficult few days of questioning anything I put in my mouth (and often worrying about it before, during, and after eating it).

- The prep solution and the, um, results of drinking it.

This was the thing I dreaded most. The afternoon before I had to take it the first time (at 6pm), I found myself looking at the clock every 15 minutes or so. I tried to watch a movie to keep my mind off it, but I couldn't do it. Google to the rescue! My research began again in earnest.

What did it taste like? Did anyone have tips on how to get it down? How long did it take to work? How long would you be, um, occupied with its effects? 

I started with general questions and then realized I wanted to know about the specific prep solution I was prescribed - Suprep. So I started googling again.

These are some of the tips my doctor mentioned or I found in my research and whether or not they worked for me.

- Take anti-nausea medicine.

My doctor prescribed anti-nausea medicine for me. He didn't tell me how to use it so I looked it up. From all I read, nausea could hit when you start drinking the prep and I found that it took about 30 minutes to work, so I tried to take it 30 minutes before I started each prep. I didn't have any nausea so this is one I highly recommend. (I often get nauseated very, very easily.)

- Take Gas-X.

My doctor told me to take two 160mg or 180mg tablets of Gas-X/Simethicone right before starting the prep each time. I could only find tablets in 125mg so I took three each time. It's supposed to help with bloating and I didn't experience much so I guess it worked.

- Mix the prep and water you have to drink afterward with something to help the taste and get down that massive amount of liquid. 

I found out that the best description of the taste of Suprep solution is cherry/grape cough syrup, mixed with seawater, with a dash of dish soap. So I was determined to find something to help make it more bearable.

This was one time I ran into trouble. Adding Sprite is an option, but sometimes it can make me gag on its own so it scared me to try. I had bought some Gatorade and at first, planned to use the Gatorade as a mixer, but then I realized that the prep was already described as salty. So, should I add even more?

I keep drink mixes around - both electrolyte solutions and others - to help if I'm having a day where I just can't drink any more plain water. However, almost all of my favorite drinks include cherry flavoring so I didn't have anything that would work. I tried my parents' stash and found the same thing - everything was red, purple, or stuff I didn't like. 

Looking again much more carefully through my stuff, I found a tube of powder to make lemonade. I thought that it would work and be okay to go with the cherry/grape-ish flavor others mentioned it had. 

It didn't taste nearly as bad as I thought. I wouldn't ever choose to drink it and it got harder to get down the more I drank, but I didn't gag once.

- Drink it cold.

Many sites said that if you chill it before drinking it, it helped. Personally, I don't know if it made a difference in my case, but it didn't hurt to stick it in the fridge a few hours before.

- Use a straw.

Again, many sites recommended using a straw to bypass your taste buds. Maybe if you sipped a little at a time, it would work, but I wanted to get it down pretty quickly so I still tasted it. With the 2nd prep (which I had to do at 3am the next morning) I still used a straw but I seriously thought about skipping the straw and chugging it.

- Take a shot (glass).

I read this suggestion online but to me, there would be so many shots you'd have to drink that it would take forever to get it all down. I told my daughter about it later and she mentioned that you could do it like a drinking game, which I wish I had thought of. If you decide to try this idea, make sure the cues you use for your game happen pretty often as you have I think an hour to get the prep and 32 more ounces of fluid down. So I can't say whether this works but I'm planning to try it the next time I need this test.

- Exchange Gatorade or Powerade for the extra 32 ounces of water. 

My doctor's orders didn't specify whether it HAD to be plain water that you drink after you get the prep solution down and I found plenty of sites where others had used Gatorade or something similar as that liquid. I know that I wouldn't have been able to get enough plain water down so that was my justification - it was better to get down a lot of Gatorade, even if it wasn't the best option, instead of little to no water.

- Eat a flavored item (that's included in the clear liquid guidelines) in between sips.

Those online recommended Italian ice or sucking hard candy between sips. I used some of my jello for this. Drink some gulps, eat a bite of jello. This killed the aftertaste, which I can tell would have been difficult for me to deal with.

Note - I don't know if I recommend this next part, as I worried and worried about it after I did it, but I also ate jello, mixed the prep with lemonade, and drank Gatorade instead of water during the second prep. My doctor's instructions said not to eat or drink anything after finishing the prep and my anxiety told me that eating jello or drinking Gatorade instead of water was going to mess it up. My head told me that my body would treat the jello as liquid as soon as it warmed up and that the electrolytes of the Gatorade were helpful, as I have a tendency to get dehydrated easily - and that all of this would be flushed out soon anyway. 

It worked out fine as I was completely clear for the test so at least in this one instance, I know it's okay to do these suggestions for both prep times. But it's a risk you'd have to take on your own, knowing that there's a possibility it won't be okay for you.

- Use wipes instead of toilet paper and Vaseline, Desitin, or something similar after going.

I do the first part of this suggestion on a daily basis anyway and didn't want the hassle of doing the second part. It makes sense on paper, but honestly, that night you won't know how long you have between, um, episodes. It would be a nightmare to be in the middle of applying Vaseline when the explosive diarrhea shows up once again. However, if you wanted to try it once things seem to be calming down, it does make sense.

- Wear something loose and comfortable. Slip-on shoes can also be helpful.

I usually wear shorts or jeans since I'm a freelancer and most of my work is from home. It was recommended that anything with a tight waistband could be uncomfortable so wearing something looser is good. I have a cotton casual dress I rarely wear and I brought it out for this procedure. I also wore slip-on shoes. After the procedure, you are pretty woozy and one less thing to deal with when getting dressed is helpful.

Just a few more suggestions about the day of and the day after it's over.

- Be prepared to rest all day.

In my case, I was lucky and got a good amount of sleep during the night, even with the prep interrupting my sleep some. The meds they used for the anesthesia gave me an extremely restful nap during the procedure. I was a little groggy but it was nothing like other times I had anesthesia and I was fully awake by the time I got home. I did run out of steam in the early afternoon and needed to take a nap but overall I was okay.

But the vast majority of accounts I read mentioned being really sleepy so plan to take it easy the day of if at all possible.

- Watch what you eat for a few days afterward.

My discharge notes said to eat easy-to-digest foods on the day of the procedure. I did well that day, other than a good bit of bloating from the air they use during the procedure that resolved pretty quickly. So, I thought that the next day I could go back to my normal diet.

WRONG! I don't know if it was the colonoscopy or my IBS, but the next day I ate a bean burrito at lunch. MISTAKE! I was extremely bloated and gassy all evening, then had diarrhea much worse than the night of the prep all night. It only resolved after taking several Pepto-Bismol tablets and Gas-X tablets. 

The research I did to see if this is a normal occurrence after a colonoscopy had mixed results. I can't say whether it was the colonoscopy itself, the colonoscopy irritating my IBS, a typical flare-up of IBS, or something else, but I would advise caution in this area, especially if you already have digestive issues. You might want to stay on a more restricted diet a few days, just in case.

All in all, though I hope I don't have to repeat it again too soon, it wasn't as bad as I thought it would be. I tried to think of the good aspects of the different diets to make it more bearable... (Being told to eat white bread instead of grain? *Woo-hoo!* Having so few options that ice cream and jello are okay? *Yes! Let's do that!* Drinking Gatorade instead of water all day? *Sounds like a plan!*) 

I found out that something I had consoled myself with during the weeks prior turned out to be true... my ongoing digestive issues have been much worse than the prep night was. So even though it wasn't fun by any means, it wasn't something I don't deal with off and on throughout my regular life. And the benefits of catching colon cancer FAR outweigh the yuckiness of the test.

So, if you've been putting it off, instead make that appointment. 

(Just make sure you read your doctor's suggestions and research your questions well in advance of your test.👧)


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