That one time I was, Cured.
This week I am celebrating the 5th anniversary of my colectomy. The surgery was done on April 7, 2012. But, April 3rd, was the first day I had ever heard the word, Cure, associated with Inflammatory Bowel Disease. There was this cure to IBD that people were getting. The removal of the colon. If I had my colon removed, I would be cured of Ulcerative Colitis. I would be cured of IBD. Never have to take another medication or colonoscopy, ever again. Because I would be cured. I was offered two roads. The road to Remicade, which would take about three months to enter my system and begin to work. Although, I didn’t have three months of life left, they assumed. Or I could allow them to just cure me by taking my colon. These were my options.
My brain was clouded in the haze of pain and high doses of Dilaudid. Death, surgery, cure…these words were like a word soup drowning me with fear and anxiety. We decided to wait for the next colonoscopy to make a decision to go for surgery or begin Remicade®. And then the colonoscopy results came down, and my colon was waiting for the right moment to explode, basically. Surgery was my only option. And that word again, Cure, came up. The GI fellow, came into my room and sat on my bed. She looked me in the eyes and I saw just how sick I was reflected back to me. And then she said, “I know you’re scared. But if we can cure you of Ulcerative Colitis, let us. Let’s get you back to your little boy.” Cure. There was that word again. It eased my apprehension about surgery and pushed me closer to the decision of a colectomy.
Now, I will say that the decision to have my colectomy was the best decision I made for me and my family. However, the misleading language used to get me there, was not okay. I am not cured. I actually live with chronic pouchitis. Meaning, I get pouchitis; something I was told would probably happen once down the line; all the time. At least once a month. That whole notion that I would never take any meds again was completely false. I am currently on Remicade® & 6MP. My extra intestinal manifestations have not disappeared. In fact, I have developed two new ones! I have a pouch scope every 6-9 months. I see my gastroenterologist & rheumatologist often. I am currently in pain management. I am not cured. No, 5 years later, I am not cured of Inflammatory Bowel Disease and all of it’s extra intestinal manifestations. But 5 years later, I have put on weight. I have all of my hair. In fact I have so much hair, my mom was able to cut a lot of it off. By choice! I am able to participate in school functions for my son. I am a baseball coach and public speaker. I am traveling and working part time. I am alive. I am alive and still fighting IBD. I am about 70% better than I was 5 years ago today. I still have pain. I still have chronic fatigue. Dinner doesn’t allows cooperate with my digestive system. But I’m here to tell my story and advocate for those who cannot tell theirs.
I say all this to say, if you are thinking of getting colectomy to treat your Ulcerative Colitis or Crohn’s Disease, I suggest you weigh your options. If this is the best options for you and is approved by your doctor, please don’t go in with false hopes. Understand that this form of treatment is amazing and very helpful. But you will still be living with IBD and it’s conditions in some way, shape or form. Do not get discouraged if you do have to go back on maintenance medications or new EIM’s pop up. It’s all apart of the journey. This isn’t an isolated event, your surgery has not failed you. You are simply another human, with IBD. You are not alone.
I am not cured. But I am grateful. I am loved. I am hopeful. I am healing. Happy Anniversary to me!