Picking “The Snail” Spot ūüźĆ

As I sit here, in an itchy and uncomfortable amount of pain I wonder what a day would be like without any pain or discomfort.¬† Those days are a faint memory to me and I complain less and less because I don’t want to appear as weak-when truly I am emotionally and mentally the STRONGEST person I know.¬† I know, I know..sounds a bit boastful right?!¬† When you’ve endured seven surgeries to date and live in a constant state of skin burning and irritation-then you can judge.¬† I won’t go on about the pain, but here’s a comparison for you all.¬† Ever taken tall socks off after a long day, and when you take those socks off you can see the indentation mark from the socks…and it begins to almost itch from the restriction all day.¬† That’s what it’s like wearing a bag with an ostomy belt 24/7.¬† Except you can’t take the bag off, but for short periods of time.¬† Welcome¬†to my itching, burning, painful hell with what I have referred to as “the snail”–which mostly is because it is constantly moving.

The entire day and night before my very first surgery, I was beyond sick.¬† Everyone who knows about colonoscopies¬†understands you have to take, what I refer to¬†as¬†“colon blow”–the name speaks for itself.¬† At this point I weighed about 117 pounds and I was weak from my two months in ICU and the¬†Remicade reaction.¬†¬†From the time I got out of the hospital to the day before my surgery, anything I ate would go right through me-literally.¬† So, when it came time to take the colon blow…there wasn’t much left to blow.¬† However, my mother insisted that I try to drink some of it.¬† I also was given¬†an antibiotic to take with the colon blow-which created the perfect storm within my body.¬† I was a mess, I was puking and sicker than sick (as if that was even possible).¬† I have never been able to drink that stuff and by this point it was my third round of bowel prep in just five months.¬†I truly¬†hope they develop some kind of alternative that tastes way better for you future Crohns and Colitis patients, because this stuff is no joke.¬† It tastes absolutely¬†terrible going in and it’s equally as terrible coming out (via vomit or otherwise).¬†¬†Even writing this now, and thinking back¬†to that last day of taking the colon blow, my throat clenches and¬†my stomach does a flip or two.¬† If¬†you’ve never experienced it, consider yourselves extremely lucky!

I didn’t have a lot of choices, as my previous blogs stated…it was lose the colon or live with the excruciating pain.¬† Obviously a no brainer for me, but even the¬†most certain person has doubts.¬† I had doubts up until the night before, when the nerves started to set in that tomorrow I would lose my colon.¬† At this point my nerves set in and began to overwhelm my stomach.¬† I remember sitting on the toilet (as if I had anything left in me-which I did not) and my colon was spasming.¬† Colonic spasms are extremely painful¬†and are known to be brought on by internal stress.¬† Which, no doubt, I was having the night before the biggest surgery of my life.¬† So as I’m sitting on the toilet, not going, but in excruciating amounts of pain-my mom came in¬†the bathroom.¬† By this time I¬†was in tears and I remember her words to me like it was yesterday, “Jerica, after tomorrow you’ll never have¬†deal with¬†this much pain again.”¬† I took those words to heart, and replay them over and over in my head even today.¬† Weather it was the truth or not, it was¬†what I needed to hear in¬†that moment.¬† Also in that moment, Gibson¬†(my¬†little Morkie puppy) who is no doubt the light of my life…came strolling into the bathroom with his little blue blanket attached to his bum!¬† He could tell I was upset, and he too, knew I needed his little personality to make me laugh and temporarily forget about the pain.

The next morning I woke up, and tried my best to mentally prepare myself for what was to come.¬† There’s no words to describe the fear I felt.¬† There just is not.¬† I knew things¬†would change and I hoped for the better.¬† I knew I’d have challenges ahead of me and that life would be different going forward.¬† Very little people knew the details of the surgery I was going to undergo-and in the beginning I didn’t want anyone to know anything.¬† In a way, I looked at it like this, the people who needed to know did and everyone else could wait.

As I laid in the hospital bed, waiting for the stoma nurse to come in and draw¬†the spot where “the snail” would make it’s debut¬†I became very nervous.¬† I remember the¬†nurse asking me¬†where¬†I would like the stoma to be.¬† I had no idea that the spot I chose¬†would be there for nearly two years-but I¬†pointed and said how about here.¬† I mean did it really matter?¬† At the end of the day, a scar is a scar and it wouldn’t make a difference to me.¬† She could tell¬†I was nervous and said that sometimes people name their stoma’s-I immediately thought that was insanely weird but smiled and said, “Oh, really?”¬†¬†I think it’s odd that we name our¬†stoma’s…but I understand why people do.¬† I suppose that’s why I¬†gave mine the name “the snail”…it’s weird looking…it moves and is almost always slimy.¬† Thinking back to that awkward conversation with Denise (my stoma nurse), I’m sure¬†she was trying her best to make me feel¬†confident and comfortable with my decision.¬† Nonetheless, it¬†was a huge decision I was making and I don’t think anything or anyone could have made me feel at ease.

Even today, almost a year later as I’m writing this, the thoughts that come flooding back to me are those of fear and uncertainty.¬† I often cry when¬†I have to relive these memories-but I do this to help others.¬†¬†I think about what other’s want to read, what they need to hear, and what the world needs to know about me.¬† I have a unique case, and I have from the beginning.¬† I never intended to share my story with the world, and most certainly didn’t expect to write about my story for all of social media to read and experience.¬† I had no idea how long this road would be. ¬†And still today, I don’t know where the road leads.¬† It’s as if I’m walking without a map, without an end in sight.¬† Each step seems like a mile and I’m thirsty for answers.