A year ago a part of me died. A part of me that I took for granted until it began distancing itself from and rebelling against me. That’s right, I’m talking about my colon.
Sometimes I wonder what would have happened had I taken better care of it? What if I’d eaten “right?” What if I didn’t eat candy? I mean, it’s not like all I ate was garbage. I cooked my meals from scratch and ate sandwiches & salads… but maybe if I’d been on a gluten-free diet my whole life none of this would ever happen.
I can’t play the what-if game because it won’t change the past. It wasn’t like I didn’t try anyway. I tried to keep on top of my medications. I tried every treatment I knew was possible. Nothing seemed to help. Gluten-free, Paleo, all-organic, more veggies, more vitamins, the most expensive supplements, kefir, all natural, no chicken, no bananas, no beans, biologics, Prednisone, ALCAT, allergy tests… you name it, I probably tried it. Nothing worked.
At the end I was on Simponi and Prednisone. Every time I would taper to 10mg of Prednisone my body started flaring viciously again. Finally, my doctor uttered the s-word: SURGERY. My heart sank… “So that’s it, then? No more hope of healing myself. It’s over!” I told my mother. We cried.
My sister was getting married three days before surgery… I was on 40mg of Prednisone. My body was bloated. I had that old familiar steroid stiff-aching all over my body. I didn’t look or feel like myself. My immune system was destroying my colon. I saw nothing but blood in the toilet. Going to the bathroom was painful. Not only was my colon falling apart bit-by-bit, but I had hemorrhoids the size of small grapes. I struggled to get through that wedding… and then I struggled through cleaning up afterwards. But I couldn’t let my sister’s special day get ruined.
In the three days leading up to surgery, I couldn’t think about anything else. I was angry, in pain, confused, disappointed. I cried on several occasions and had multiple breakdowns. The end was coming… a part of me was going to die… and it was weird. A part of me was going to be dead. Separated from me forever. Granted, it was a part of me that was torturing me day in and day out… but it was still a part of me all the same and I’d never be using it again.
I felt numb. Like I was in some alternate universe. Can this really be happening?
The day before surgery is a bit of a blur. I remember feeling shocked, hungry and scared. “When I wake up tomorrow, I will be walking to my colon’s death.” I didn’t want to think about the reality. I was mere hours away from surgery and I didn’t want to believe it. Because I hadn’t eaten anything, I was actually starting to feel better. “All I need is a break from eating…” I told myself, “And then I’ll be better. In fact, I feel ok.” I was convinced. I just needed a break from food… that’s all.
I woke up the next morning. I kept telling my husband not to talk to me. Not to look at me… I saw the pity in his eyes and heard the sorrow in his voice. I couldn’t take it. I had to be strong. I couldn’t cry. I just couldn’t… because that demonstrated weakness. I am not a weak person. This is not the easy way out… right?
“Am I making a mistake?” I asked.
“No.” He said.
“Are you sure? I think this is a mistake!” I looked toward the exit.
“It’s not a mistake.” He replied, though not fully convinced himself.
The nurse came in with the saline enema. “This will clean out whatever is left in there.” She said handing me the box. “Do you need help?”
I sighed, taking the small box from her, “No, I’ve done this plenty of times…” After I administered the enema and held it for five minutes, I ran to the bathroom. So much blood poured out of me. My insides burned worse than ever. “It’s only saline!!! Why does it hurt so badly?” I cried and cried. I wanted it to be over. My head was reeling… my brain was foggy. Was I in some twisted nightmare? Surely I was about to wake up and realize that this wasn’t real after all.
After about what seemed like an hour of being in the bathroom waiting for the blood to stop, I came out, looked at my husband and told him that I knew right there that I was making the right decision. “This isn’t a mistake. I know that now.”
I cried as they wheeled me away to the operating room. I remember they had a hard time finding a vein. They gave me an epidural, which is also painful, by the way… but I don’t remember much after that except waking up from the surgery. I was in pain, but it was different. I didn’t feel any internal burning. Only a searing pain where I’d been sliced open. It was excruciating, but honestly, thinking back, it wasn’t nearly as bad as the fierce burning sensation of a diseased gut. No, this was a pain I could bear and be proud of.
After a long, trying battle, I beat my colon. I won. People, even my husband, will tell you that I’m finally cured… but the truth is… a true cure would have given me back a healthy one. Not take away, FOREVER, a very key organ in digestion.
I can tell you, that despite the fact that I do not believe a colectomy to be a true cure, I feel better than I have in years. I would make the decision all over again… even if it meant I’d have a permanent ostomy for the rest of my life.
