Ba-Bye Colon
It was a Sunday morning, March 1st, my 23rd birthday, I underwent surgery to remove over 99% of my large intestine. My surgeon (I’ll call him Dr. K) saved my life that day and I will be forever grateful to him and his team for everything they did. The surgery did not go according to plan. The plan was to remove my large intestine and create a j-pouch out of my small intestine -this would act as a surrogate colon. However, my insides were much worse than anticipated and their main goal was keeping me alive. The pouch would have to wait.
Hope
I woke up in recovery 4 hours later in a lot of pain but this time it was different. I felt like the infection that had been attacking me for over a year was dead. However, not all was well. They had removed my colon and replaced it with a colostomy bag. Yup, those things comedians/tv shows make fun of for old people having -I was barely 23 and I had one of my very own. This was difficult to process. What would people think? What can I wear with this attached to me? Can I still workout? How does this thing work? Can I still have children? Will this be permanent? Everything seemed to come crashing down. The next few weeks were difficult. I had to learn how to empty my bag, how to change it, clean it. It made sounds. I couldn’t control it. But I was alive.
Learning to Cope
As much as it sucked, I felt better. I slept through the night for the first time in over a year. I got used to having “Stella” the stoma. I became comfortable changing my bag and my hair stopped falling out. I had lost roughly 75% of my hair; between that and the weight loss this gave me a very “Gollum” look. To add to this sexy look, my hair started to grow back in short tufts, so I also looked like a kindergartener who got a hold of mom’s scissors. Yup, get in line boys.
August 7th, 2015. I said HELL YES!!
As the months went by, I got used to Stella. I wasn’t as embarrassed anymore. It meant I was strong. I had survived a year+ of hell and I came out alive, and I didn’t have to fake it anymore -I was happy. I had so much to be thankful for in life. I had a wonderful family who was by my side through everything, plus I (miraculously) got through my first year of education and did well. To top off my blessings -that summer, despite everything that had happened, Evan asked me to marry him. I could see the light at the end of the tunnel although I knew there were a few more bumps along the way.
Next Step
Second surgery post op. Featured is a jp tube, incision from the first surgery colostomy site, and my new loop ostomy and bag.
After a scare in August that I might have Crohn’s disease as well (a lab tech messed up some testing) I was scheduled for my 2nd surgery in September. During this surgery they created my j-pouch out of my small intestine. This was a tough recovery and I woke up with a loop ostomy (so I had 2 holes in my stomach instead of 1) which was an unwelcome surprise. I also had a jp tube coming out of my side which helps to drain excess blood and fluid and hurts like a mother when it is pulled out. This was major surgery and I didn’t leave my hospital bed for almost 3 days. With a catheter and colostomy bag, I literally didn’t need to leave the bed. I was discharged after a week and finally got to go home. I was sore for a couple of weeks, but I was one step closer to getting back to (my new) normal.
I was in a good place. This surgery that once seemed like the worst thing in the world ended up being a blessing. The next few months consisted of online classes and getting my strength back. I was anxiously waiting for the call for my 3rd and final surgery. In this surgery they would remove my colostomy bag and close the holes in my stomach and “hook me back up” essentially. The diseased part of my colon was gone but they left just enough to be able to reverse my colostomy.
The Finish Line
A few hours after my 3rd and final surgery. A little drugged, a lot happy :)
I got the call on Monday November 30th. “We’ve had a cancellation, are you available this Thursday, December 3rd for your colostomy reversal?”. HELL, YES, I AM!! I was over the moon excited! I had been running this Colitis marathon for so long and the finish line just popped up in front of me! The next few days flew by and when Thursday arrived I was practically skipping into the hospital! Surgery seemed like such a normal thing to me at this point and I didn’t feel nervous at all walking into the operating room. There were a dozen people all prepping and getting ready for the surgery. Everyone was so wonderful, and I felt at complete peace as they talked me through the process of what was about to happen. My mindset at this point was “knock me out and let’s do this!”. Before I knew it, a nurse was waking me up in the recovery room. Everything went well. I was done. I felt my stomach; no bag, no stoma, just a few staples. I cried. (I’m crying now). Everything that had happened in the past 2 years was behind me, I had survived the storm.
The Calm After the Storm
I had my life back. I went to sleep that night in the hospital, and it felt like a massive weight had been lifted from my heart. I reflected over the past 2 years and everything that led up to this moment. I gained a new perspective and appreciation for life. These were extremely difficult years and I am finally in a place that I feel comfortable sharing my story. If you are going through something similar, know that you are not alone. Just remember that the pain, frustration and everything that comes along with this disease may currently consume your life, but if I can offer any comfort at all, it is that this is only temporary.
Thanks for listening,
Erika