Why I Do Not Miss My Colon
Had I had a healthy colon I’m sure that I would miss it. A healthy colon trumps an ostomy or a j-pouch any day, but I did not have a healthy colon or rectum.
Misdiagnosis of UC and a j-pouch surgery
Allow me to introduce myself. My name is Sara and I am an IBD and chronic illness advocate. I started my own site, Inflamed & Untamed, around 5 years ago when I started posting videos about my experiences on my YouTube channel. I have Crohn’s disease and do not have any of my colon or rectum left. Instead, I have a j-pouch. Normally j-pouches are only for patients who have ulcerative colitis, at least as far as IBD is concerned.
They are generally not an option for patients who have Crohn’s disease because there is a higher risk of the j-pouch failing. The reason I ended up with a j-pouch is that I was originally misdiagnosed and back when I had my surgeries they thought I had UC. It wasn’t until a few years after my j-pouch surgeries that it was discovered that I had Crohn’s disease all along. If you are interested in hearing more about that, I have a video about it here.
What life was like with a colon and rectum
Anyway, life with my colon and rectum was miserable. I was so sick that the surgery to have my colon removed ended up being an emergency surgery. I did not go into the hospital ever expecting that I was going to come out of it sans an organ, but that is exactly what happened.
I’ve said this a few times before, but when I had my colon I was not living. To me, there is a difference between living and existing. I was not living when I had my large intestine, I was just existing. When I went to the ER before my colon was removed, I was admitted right away because my white blood cell count was extremely elevated and my blood levels were far too low and I was also running a fever.
Emergency surgery after a colonoscopy
I was given 2 blood transfusions, switched from oral steroids to IV steroids, and was put on TPN to try and help me gain weight and also for bowel rest. The next day I had a colonoscopy so they could see how severe things were but they had to stop the scope shortly after they started the procedure because I was so inflamed that if they had continued my bowel would have likely perforated. Before I knew it, I was having surgery to have my colon removed after I was given a couple more blood transfusions.
Life improvements after bowel surgery
Recovery from surgery was difficult, but that’s a story for another time. The point I’d like to make here is that eventually things turned around and my life improved dramatically. When I had my colon I was not able to enjoy life. I was using the bathroom 20+ times a day and was experiencing blood loss each time.
I had severe pain, the joints in my ankles were so swollen I could hardly walk, and I was having accidents. All of the blood loss and malnutrition led to me losing so much weight that I was around 90 pounds and my weight dropped to 82 pounds before recovering. I was also anemic and very fatigued.
Due to all of this, I was unable to have the life of a 20-something-year-old who was in college. I stopped going to all of my classes and dropped out of school, lost my job, and had to move back home. I was extremely depressed and my disease kept me isolated from the world. I was very lonely and my days were spent in bed and in pain only getting up when I had to use the bathroom.
So if I had a healthy colon I am sure I would miss it. But the colon I did have gave me a miserable quality of life. Having surgery gave me a lot of my quality of life back. After my surgeries, I was able to experience life in a whole new way. The urgency I had been experiencing was no longer there and it felt weird to be able to go out of the house without this constant worry about having an accident.
My life improved significantly with a j-pouch
I realized how much of my life I had spent living in a panic because of an inflamed colon. Aside from that my bowel movements went from 20+ times a day down to about 3-4 times per day. The severe pain that I had subsided, I gained weight, and I was able to go back to school and get another job. Since then I was diagnosed with Crohn's disease and then a rare motility disease so things got tough again but for different reasons. Even with my struggles, I know that surgery majorly improved my life. Actually, it saved my life.
I 100% do not regret the removal of my colon and rectum.
What type of IBD have you been diagnosed with?