Ulcerative Colitis, Part 4: The Surgery
The last week of 2013 was the worst time leading up to the best. I just had to get there first. By this time, I had worked a little over 6 months at my job making appointments at the hospital call center and I was due for another long term inpatient stay. The problem was that I was missing days due to being sick and was about to be fired as a result. However, I needed the insurance from my job to cover my next stay and if I got fired before January 1st, I couldn’t carry it over to be seen. I was literally making appointments for the hospital I was going to and knew exactly how their insurance worked, especially for employees. So long as I was still employed on New Years’ Day, I would be covered until the end of the month regardless if I got fired or quit.
I was at the end of my rope though. By this time I was having a massive flare-up due to 2 major circumstances. First, I had type 2 diabetes from the prednisone I had been taking the last few years and second, I was on yet another medication that didn’t help me out in the slightest. This one was a new pill or something that just hit the market within months of them giving it to me. I got a month's supply of the trials so I didn’t have to pay extra and was told this was the best thing out. Bullshit. Just like almost every drug before, I might as well had been taking Tic Tacs because they would’ve had a more positive effect on my breath whereas this new med did nothing but ensure my newest flare-up. I couldn’t walk, eat, drink, work, or anything productive that last week but I needed to beat the clock.
I made sure to call out of work each day and we had January 1st off. I made it to the 2nd and admitted myself to the ER for what ended up being the last time with ulcerative colitis. I was given massive amounts of pain meds again and sent to a room. About a day or so later, I got an unexpected surprise: a team of doctors, including my own gastroenterologist, Dr. Zhao. After hearing about round after round of meds over the last 5 years (and me telling them I already took the Remicade which I REFUSED to take so I’m glad they bought it) they all gathered in my tiny room to tell me that they think the best thing would be to finally, FINALLY, remove my colon...and then tried to convince me not to do it.
Here’s the thing; having your full colon removed is pretty much the main way to have UC taken care of permanently but complications are possible. The biggest issue was that I had to have an ileostomy bag (known as a colostomy bag to most) for about 6 months to complete 3 surgeries. People have been known to mess that process up and end up with the bag for years or even permanently by having a terrible diet or even the surgery not going as planned. And as each doctor gave it the old college try to convince me that there might still be a way to treat my issues with meds, I kept repeating one phrase.
“Take this fucking thing out of me.”
By that time (and my own estimates) I had had about 18,000 bowel movements in the last 5 years, probably 10 week-long hospital stays, been on at least 15 different medications and felt this thing try to destroy every single part of my life. I wasn’t just using the bathroom and having some pain, I was losing parts of my life daily. I would be in the middle of a manager meeting at work as a supervisor and abruptly run out like a madman. One time I lost control of my bowels and shit myself in the middle of Walmart. I went to the bathroom and tried my best to clean up in the stalls but the cleaning person came in and didn’t leave so I tried to wait him out. I didn’t want to leave with a Walmart bag in the bathroom looking like I stole something and I was embarrassed that I was holding a bag of my own shitty clothes I was going to get rid of for him to take out. Once, my family and I went to a fair on base and there wasn’t a close enough bathroom so I had to leave them, walk a mile towards the nearest one in hopes that I wouldn’t soil myself and then try to find them in the chaos after I was gone for an hour with pains. There are times I would have to use it 3 times within moments of getting up and spend the day inside the bathroom. I couldn’t go places unless I knew exactly where the bathrooms were when I entered and I never knew when was the next time I was going to be away from my family again because of a massive flare-up. I had literally been incapacitated on the floor, face down, crying in the carpet more than once because it was too painful to move. I was living an actual nightmare and they wanted to talk me out of the risks? The RISKS?
“Take. This. Fucking. Thing. Out. Of. Me. Now. Where do I need to sign? I consent to anything you want to do to get this ball rolling.”
They listened and it was off to the races. I had to get healthy enough to even have the surgery so they brought this bag in to give me nutrients over several days. The surgery was set up for the beginning of the following week so everyone could get things in order and for the surgeon to prepare since this was technically short notice. My job and I had a stand-off because they didn’t want to fire me for being sick and wanted me to quit but I wasn’t going to quit because I was sick and needed unemployment. Hell, I liked my job and wished I could go back but, alas, they did the hard thing and reluctantly fired me. I ended up getting 6 months of short-term disability that I used until July which I then turned around and filed for my unemployment. I didn’t work from January until November of that year which was great because I had 4 different procedures during that time frame that would’ve made it next to impossible to work, especially for a new job. I had no room to complain but since I’m sure they didn’t like paying me for close to a year to sit at home and come in for surgeries, they weren’t going to bring me back. I thank them for everything though.
My surgery was on Monday and a complete success. I got my bag, which took some getting used to and there was a woman who went around and taught people how to cope with having the ostomy bag since hers was forever. She gave me tips on how to personalize my bag to make it look fun and also hide some of the smell (it is a bag of shit.) I used Batman, Marvel, and Mario Bros. duct tape. Did you know they had duct tape? Here’s me being cool with my Batman tape.
Over the next 8 months, I lived with that bag attached to me and couldn’t use the bathroom like a normal person. It was probably one of the hardest 8 months in terms of that but worth it as I was on time to get it removed and now I just have a scar where it once was. I was quite literally a new man with a designer asshole (that’s what I call what they did to me. I have what’s called a J-pouch where everything back there should be and if that’s not designer, I don’t know what is.)
And here’s my favorite part of my random surgery story. Back in November 2013, I set up an appointment for my vasectomy for January 17th, 2014, not knowing I was going to be in the hospital. My colon was removed on Monday and when Friday came along, they asked if I still wanted to go through with it. I told them ‘absolutely’ and they wheeled me from my room, down to the next floor, got me super loopy off of laughing gas, completed my vasectomy, then wheeled me back to my room! And I had pain meds for my stomach so I barely felt any discomfort from that procedure! 2014 started out well for me. It didn’t stay that way, but it started out fun.
And so it looks like we’ve come to the end but you already know there’s another day left and it’s going to be more of an epilogue regarding the aftermath and what comes next. Don’t worry, there’s still going to be more to come, just stick with me. Until then, look up some info on the disease and if you can, donate to a good cause because it’s not going away.
To be concluded...