I was diagnosed with ulcerative colitis (UC) in December 2012 at age 33 and had ileostomy surgery to have my colon removed in 2015. I planned on returning for two more surgeries to create a J-pouch, but was worried about going forward with the procedure and having it backfire on me. So, it’s been three years now and Rosie (my stoma) and I are getting along great!
After my initial surgery the rectum remained intact, acting as a placeholder of sorts for my future J-pouch. It became abundantly clear that it was still riddled with horrible ulcerative colitis, despite not being connected to anything (no bowel movements were going through it). I was bleeding and having mucus output from my rectum and had to wear a pantyliner every day because it would leak whenever I sneezed, coughed or laughed too hard. I contacted my GI doctor and he did a scope but it was not successful because the tissue was so deteriorated. At this point, my medical team decided that the rectum needed to go — Rosie would become my permanent sidekick! She and I were doing so well that it only seemed logical to keep her and toss out the idea of a J-pouch. It was time to schedule my final surgery.
The technical term to make Rosie permanent is called proctocolectomy, but some of us in the ostomy community have a bit of humor about it and call this “Barbie Butt” surgery, lol. It’s because the butt is simply there for looks now (not function) just like Barbie! I had my Barbie Butt surgery on July 2, 2018 at the University of Chicago Hospital. The procedure was fairly lengthy but successful without major complications. My surgeon was able to remove the rectum laparoscopically with a circular incision at the site, then it was sewn shut. Clearly, this operation isn’t ideal but I’m happy to be free of UC. This is MY body and MY life — I am calling the shots, not ulcerative colitis!
One big tip that I have for those of you recovering in the hospital (for whatever reason) is that you should ask if you can wear your own clothes, rather than wearing a hospital gown all the time. If they allow it, you should do it! It really makes a big difference in how you feel if you can relax comfortably in your own comfy yoga pants/sweatpants and shirts. Because when you feel comfortable emotionally and mentally, it reflects positively on your physical feelings too.
Last summer, my family and I drove to Disney World in Florida. DROVE! That’s a 17-hour trip from Wisconsin! If you would’ve told me I’d be driving anywhere while ulcerative colitis was at its worst, I would have laughed in your face. I might’ve gotten choked up too, because I was devastated that I couldn’t do fun things with my family because of this horrible disease. However, thanks to Rosie, a long road trip to Disney was not only a possibility — it was a reality!
This post appeared on The Toilet Paper Princess.