The comedown

Last fall, I talked with my doctors about removing my rectum. I have had colitis for years.  It hurts and bleeds all the time.

In January, my surgeon scheduled surgery to remove it. This would eliminate all possibility of reversing my ostomy. I was fine with that.

In February, my GI specialist told me I could get a subtotal colectomy and reverse the ostomy.

A week later, my surgeon told me he thought it might be better to just remove the entire colon.

Last Thursday was the two year anniversary of placing my colostomy. My surgeon called me that night to tell me that he had run into my GI specialist and they had together decided to reverse the ostomy and not remove all of the colon because if they are wrong “they can’t put it back”. This removes some colon but for complicated reasons I’m too frustrated to explain right now, there is a rock solid chance that I will end up exactly where I was two years ago before I got my ostomy. A place I swore I would never be again. He offered that if it didn’t work, then we would remove the rest in another surgery.

My hospital time after placing my colostomy is pretty hazy. I remember waking up in the recovery room and pulling the blanket, straining my neck to see the stoma. A nurse ran over and pulled the blanket up; she didn’t want me to see it until my surgeon was there. I watched her walk away before I looked again. It protruded about an inch, was pink and puckered, easily visible through the clear ostomy bag. “Like a rosebud,” my surgeon said. Yes, exactly like that.

The first time I stooled with it was a wonder, this painless relief. It didn’t last, but it was wonderful while it lasted. It hurt, but not as bad as my rectum had hurt before. Not as bad as the agony of not being to go to the bathroom, of constant distension, of your insides wrenching to no effect. No, not that bad, not like that.

I chose to get a colostomy. It’s not a choice that all colostomates get; some people suffer a terrible injury and wake up to a bag around a surgical opening into their intestines. I chose to get a colostomy, and I live with that choice every day, and every day I would say to myself, having this is a good thing. I believed it most days, if only to avoid arguing with myself. It is an act of self preservation, this sort of aggressive acceptance of your body.

Right up until the second my doctor told me he felt I could reverse the ostomy, I had never even considered it. How could I have, when before was so bad? No, I never did. This was part of my choice; I understood when I got it that it would be forever.

Right up until the second my doctor told me he felt I could reverse the ostomy, I never wanted to reverse it. But as soon as he said it, I did. I wanted it more than anything I’ve wanted in a long time.

Now I am looking at the very real possibility of ending up in the position of eventually not being able to stool again without serious intervention. At the very least, not without another surgery in the future. And that’s really stupid, it’s really stupid to decide to do this, because I’m so literally tired of surgery and procedures and shots and IV meds and this fucking port and its stupid dressing and I’m so literally tired of being sick right now that all I want is to not do this anymore. I don’t want to do this anymore. Because I have four feet of trigger living inside of my body and now I’ll never be able to stop cleaning up puke from my toilet every day and reacting to the smell of alcohol when I hook up IV fluids every night and taking the mountains of pills I push around every morning in the pillbox with a resigned finger. I am allergic to my own body and how can I ever get better when I’m literally allergic to myself?

I just want to get better and I’m never going to. But I still want it, I want it more than anything and knowing that I’m never going to doesn’t make me want it any less.

Two years ago, I woke up and saw my stoma, and for many days after that, I told myself it was a good thing, if only to avoid arguing with myself.

Four months ago, I was fine with having an ostomy forever and now I’m getting rid of it and I wish they had never told me I could.

All these plans I have made seem farcical now because they depend on me not reacting to being in pain all the time and that is only possible if I’m not in pain all the time.

Dreams are great and all, but the comedown when they are smashed is fucking hell.