The United Colon Vlog

I would like to share a personal story with you. Right before I had my proctocolectomy/jpouch surgery, I lived life scouting out every bathroom wherever I went. It became my way of life. My ritual was that I would arrive to a location-a mall, a restaurant, the grocery store- and the first thing I would do is tell my mom, “I will be right back, I have to find the bathroom.” I knew which exits to take on the highway on the way to the hospital for doctor visits that had the best and cleanest bathrooms because God forbid on top of having this illness, you have to deal with the horrific public bathroom phobia like I have! I can’t stand the bathrooms with no toilet seat covers and when I have to place toilet paper over the toilet seats. The last thing you want to do when you have extreme urgency is line toilet paper perfectly on a toilet seat so you can sit down on it without the worry of germs, but for me it was a must! I don’t like when bathroom stalls have broken locks on the doors or when I have to stand in line waiting for the person to get out of a stall. Often times, if someone was with me, I would ask them to turn the faucet on full blast or flush the toilet in the stall next to me 3-4 times so I had a few moments where I didn’t have to worry someone would hear my bowel noises. The greatest hope is wishing no one was in the bathroom when I got there so I could be free to be me on that toilet! It was the nature of the illness, I couldn’t go anywhere if I wasn’t confident that I had an escape or a backup plan.

One time on the way back from Milwaukee when I was having a major flare, I had to get to a restroom QUICK- but it wasn’t fast enough, and it was disastrous for me and my mom. I was completely incontinent… As we sat in the car cleaning everything, I knew then and there I could not live like this. Who at my age as a teenager has this happen to them?? I had no other clothes with me to change into, so my mom took off her jacket and fashioned a skirt out of it to cover me. I wasn’t prepared for such an accident, and I learned never to leave home without an extra change of clothes. I remember that day, through my tears we laughed and cried over all of this, but I ended up crying silent tears the rest of the way home hoping somehow I could get saved from this humiliation. This wasn’t the first time nor the last time that I had an incontinence accident. When someone is suffering from Crohn’s, Colitis, or IBD it can happen and can’t be helped. To this day, it’s still my ritual to find a bathroom in every public place. Old habits die hard.

“How long a minute is depends on what side of the bathroom door you’re on” -Unknown

~Nadia

A Bathroom sign for the Desperate.