I mentioned in my About Me section that I have had many health issues pop up recently which I have been ignoring for quite some time. One of those things was being diagnosed with CREST syndrome. CREST is an acronym that stands for Calcinosis, Raynaud phenomenon, Esophageal dysmotility, Sclerodactyly, and Telangiectasia. Big words basically, but a person who has CREST syndrome may not have all of these issues. I have only recently been to a rheumatologist who is investigating this further. I saw another Rheumatologist in the last year but unfortunately in the medical system you have to advocate for yourself and I chose to seek out another practitioner who was more versed in my type of autoimmune disease.
Esophageal dysmotility, along with many digestive system issues, is a major issue that I have. I also have a large family history of colon cancer. Finding out about CREST and other issues that I was facing I chose to get genetic testing at this point. It was not a surprise that my genetic testing came back with a homozygous gene for colon cancer. Having a gene in your DNA does NOT mean you will get a specific disease but if you are having issues that relate to that gene you should at least be cognizant and monitor your issue throughout your life. With this in mind, I felt it was time to revisit my gastroenterologist.
I’m sure everyone can imagine seeing a gastroenterologist with complaints of digestive system issues almost guarantees the dreaded colonoscopy. The appointment with my physician ended just as I had anticipated: I was being scheduled not only for a colonoscopy, but for an upper GI scope as well. All was well however because their schedule was pretty full, I had to wait approximately six weeks for my procedure. Six weeks felt like a ways out so phew, I could walk away and put it out of my mind for a bit. The office called my prep prescription into the pharmacy, hubby picked it up and into the bathroom cabinet it went….for six weeks. Unfortunately, time does not stand still and the dreaded day came this week. I had to open the cabinet and take the 64 ounce jug out and begin the prep.
I felt pretty good about being able to put my all into this and soar through this prep with no problem. I mean this was a good thing right? Having this procedure will put my mind at ease that if I do have issues they can be found and handled early. Good thing or not, that 64 ounce jug seemed much bigger when I filled it with water. Suddenly it looked like 12 hours of sitting on a toilet begging the gods of anal hell to be kind. The reminders of the burning anus past came slamming back into my brain. Wait…wait… No, I’ve got this. I can do it! I mean it’s only one day and I will be given great drugs and be able to take a nice nap when I have my procedure. So all will be well, right?
I had already readied my bathroom with soft butt wipes, plenty of toilet paper, towels, a small heater and butt paste (I was prepared for the satanic burn of the butt.) Hubby was kind enough to even put an iPad holder up so I could do this whole thing hands free….And so it began. I started with the four laxative tablets as instructed on my prep sheet. Then, I had to just wait. I wondered if it was going to start with doubling bubble guts or if the laxative angels would be with me and protect me from any cramping? Two hours passed and WOW, I wasn’t doing so bad. I only needed to use the restroom once and my guts were not stricken by spiritual unrest at this point. Yes! I think I’ve got this.
I quickly restudied my instructions. “Drink eight ounces of liquid prep every 15 minutes for two hours.” Ahhh, easy.I poured my first glass and settled into the restroom with ease. Holy Hell….it tasted like a thick, salty serum of nasty. My body quickly screamed, “INDUCE VOMITING – GET THIS OUT OF YOUR MOUTH” and my gag reflex agreeably responded with “okay, let’s do this.” Nope, nope, nope. I wasn’t going to let it happen. I composed myself and fought back. There would be no vomiting and I quickly reassessed the situation. How on earth would I trick my taste buds into thinking the serum of nasty could be taken in without the gag reflex of regret taking over? I thought about it and then realized a straw would be my best option. Fifteen minutes went by in seconds and it was time to drink glass number two. I thought I was pretty smart using this straw so I poured my glass and dropped my straw right in. I was in about two gulp when my taste buds realized what I was attempting to do. They quickly responded with a huge “Ah, ha!” and again notified the gag reflex that he was back in the game. How on earth am I going to take in 64 ounces of liquid sludge and not send it back out the way it came in? I had no choice. I positioned the straw past the taste bud juncture of communication to the gag reflex, held my breath and gulped. I won. Glass number two in the books.
It was about this time that I was feeling pretty proud of myself and popped on the iPad for some Netflix enjoyment when suddenly someone turned on a faucet. Not the shiny Delta faucet I was sitting next to, but the faucet of fun from down below. No sirens, no warnings, just a full stream of holy water pouring quite forcefully into the waiting toilet below. Thank the good Lord I knew my inability to hold my bowels in a case like this and I was prepped for it’s onset, sitting perfectly centered on said toilet. Well, that wasn’t so bad I thought. I settled back in and continued on to glasses three, four and five. Each glass was followed by the fountain of bowel getting clearer in color. Finally, glass number eight was consumed and I could take a break.
I had factored in that my head was going to have issues with sitting up and moving positions because of my CSF leak, so I had been leaning back quite a bit during the first round of my prep. I thought lying back in my recliner for the next two hours before round two would begin was a good idea. I donned a lovely Depends undergarment, padded my recliner with a protective covering and leaned back in my chair for a rest. Just as my pressure headache was about to settle down, my bowels turned on me. The previously mentioned faucet decided there was a leak in the system and turned it back on. I’m not sure if my brain told my eyes before it told me to clinch, but suddenly I felt my eyes become the size of saucers. Not small saucers either. UFO sized saucers. I clinched, but alas it was too late. I was now sitting in a puddle of light green liquid. Clean up on aisle 10 please!
After my two hours of downtime (was it really downtime?) had passed, it was time for round two. I quickly consumed a bit of lime green jello because I was a wee hungry at this point. I was weary but prepared that round two would be equally matched with round one and I could see an end. No. Round two now involved the unspoken gastric juices of evil and the hell was unleashed upon my poor unsuspecting five inch circumference of soft baby skin surrounding the previously discussed exit door. Yes, the burn began. I thought I was ahead of the game because I have a lovely bidet installed on my throne of porcelain wonder. I smartly reached over and turned on the clean rinse of cool water… WTF??? The fire that was born unto my anus at this time was like no other I had experienced. Pain signals from all over my brain were screaming at the top of their lungs telling me to quickly turn that thing off. Being a very obedient person, I listened and quickly shut down the valve of the ice water pain conductor. Oh my gawd, what shall I do now? Think, think, think….{insert idea lightbulb} ahh, yes! Butt paste! Put on the butt paste. I quickly grabbed the box, tearing it open as fast as I could and squeezed the tube, getting out a quarter sized glob of goo. My brain thought “this will show you butthole, I have outsmarted the masses.” No brain, you did not. As I began to feverishly rub said butt paste all over said soft skin the pain receptors reveled in their ability to outsmart the brain. Holy fires of hell, the butt paste was only a barrier and not the soother the package promised it would be. At this point, I reminded myself that I gave birth without pain medication and I could handle this. I took several deep breaths and finished applying the barrier paste.
After about the fourth glass of the second round, I was reminded of the stark reality of having a CSF leak and all it brings when you don’t adjust yourself accordingly. I was beginning to be met with the daunting symptoms of brain fog, head pressure and dysautonomia (https://my.clevelandclinic.org/health/diseases/6004-dysautonomia) and was no longer sure that tolerating the rest of the prep was going to be an option. It wasn’t. I was forced to abandon ship. I had basically been passing nothing but slightly tinted clear liquid for hours and it was at this time that my husband said enough was enough. I donned yet another Depends undergarment, prepped my recliner with coverings again and resigned myself to the fact that the prep had ended. After a few rounds of last minute squirts I decided I needed to go to bed to lay flat and get some rest.
The morning was met by my husband waking me with the 15 minute warning that I had requested. It was also met with a rainy day and a migraine. Yes, I woke up in terrible pain. I couldn’t back out now. I wouldn’t back out now. A cancellation not done 48 hours prior to your appointment would result in a full charge from the endoscopy center and worse, another prep in the future. For those who suffer with chronic pain you will understand when I say you put your body in auto mode, suck up the pain and literally just be led through what needs to be done. It’s what you do. You don’t always have a choice. You find a focus point and you do what you have to do. You know you’re going to be in pain but you almost compartmentalize yourself into a robot and move through the motions. I couldn’t take any medication for pain because I was about to be sedated, so I forged forward with my loving husband guiding me, helping me maneuver stairs, the car ride and ultimately into the care of the nurses.
I won’t put you through the bore of the procedure but I have good news to report. While I did have a few issues that had to be resolved during the procedure, my physician feels very confident that I am cancer free. I have to follow up in four months at which time I will have a motility study done to monitor problems with my other issues related to the “E” in CREST syndrome. I am now on the five year plan for colonoscopy follow-ups but as long as this procedure keeps me on top of possible problems, I’m game.
