New Life Without a Colon

I’m so glad to be back with you and writing again. My absence has been due to an extended hospital stay for the severe ulcerative colitis I had and then surgery to remove my colon. It has been a whirlwind of a few weeks! I’ll share my experience with you.

The disease had reached a new level of severity. I couldn’t even eat ice chips without having to use the bathroom right away. I had to use a commode in the hospital because the urgency didn’t allow me to make it to the actual bathroom in time. For ten days before the surgery, I didn’t leave the four-foot area surrounding my hospital bed. I was in poor shape, so I ended up having a TPN nutrition PICC Line put in my body. I was being pumped full of the nutrients I had been missing for so long and working on getting healthy enough to have surgery to remove the entire colon.

Surgery day finally came and I was rather emotional because I was taken down to the surgery area sooner than anticipated. My parents weren’t there yet and I just felt so nervous about everything. The fabulous nurses made me feel comfortable and eventually I was able to see both my parents before the surgery.

The surgery took about three hours, and I woke up in a flash. Anesthesia is a powerful thing! I barely remember being wheeled into the operating room and then all of a sudden, I was in the recovery area.

I woke to staples in a vertical incision down my abdomen and I now had an ileostomy. The stoma is formed from the small intestine and that’s where my waste will come from now, into a pouch that I empty frequently. I spent one night in the ICU and then moved to a step-down floor the next day. (ICU nurses are truly amazing!)

I returned home five days after the surgery and it’s been wonderful! I don’t have any of the pain of the disease anymore! I don’t have the rib pain that was actually pain from my descending colon becoming very large and inflamed and pushing upward into my torso. I don’t even have the shortness of breath anymore.

Living with an ostomy is taking some getting used to. There are hurdles involved with getting supply shipments set up and insurance to deal with. I have a home health nurse to help with learning how to change the gear every few days. I have to empty the pouch frequently, but I am able to eat many foods again. I am looking forward to being in the kitchen more and cooking again.

I still get rather emotional if I think about this huge change in my body for too long. It’s just such a major surgery that leaves me with the ostomy permanently. It’s been so worth it already though. 

I have created some art related to my ulcerative colitis along the way, including some sketches I drew in my sketchbook while in the hospital. I also have quite a few poems I wrote throughout this disease. Maybe I will put that all together in another book someday.

I’m thankful for so many great friends and family who have supported me along the way. I could feel all the prayers while in the hospital. My surgeon was wonderful, as well as the many fabulous nurses I encountered.

I look forward to getting back to the land of the living and going places again and taking walks. It’s been surreal to have my evenings free of bathroom trips every ten minutes. And I love eating food again! I actually had my 40th birthday in the hospital a few days before surgery. I imagined I had cake in my nutrition line, but I was happy to have an actual piece of cake once I was home!

I plan to keep writing about this as I journey through living with an ostomy. Thank you for reading my story. And I hope others who suffer from digestive diseases can get the treatment they desperately need as well. Always be a strong advocate for yourself, even when it’s extremely difficult. Push for answers and make sure you are getting the care you need to feel better. There are better and brighter days ahead!