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.

5 Responses

  1. Mark Beckwith April 28, 2015 / 4:50 am

    I wish there was something I could say to make you feel better. But I know there’s not. We think about you all the time at our house. Sorry Lisa.

  2. Carla April 28, 2015 / 7:49 am

    This is hell Lisa, and it makes me mad for you. It’s 5:43am and I’ve been up in pain all night for similar albeit different reasons (same disease though!) and everything you said about being tired of it is me. You wrote down exactly how I feel. I’m sick of it all and I don’t want to be sick anymore. I’m done with pain and tests and IV’s and not being able to do much of anything. I’m done. I just want to be done. But we will press on because well, we are warriors. 😉 I’m thinking of you. Know that you are loved and cared about and that you have a lot of friends who share your sentiments about being sick. It doesn’t fix it but sometimes it helps to simply know you’re not alone. I hope this is one of those times. <3

  3. Karen Neill April 28, 2015 / 10:14 am

    Oh, Lisa. What a decision. Truely between a rock and a hard place. Take your time, weigh the options. Get more opinions if you need to. It doesn’t sound like your physicians are very sure what to do…so get more perspectives. As long as you include them in the process, they shouldn’t be put out by it, and frankly, who cares if they do. It does not seem that they have really included you- they bumped into each other, and decided in what to do, eh? Ummmm, no. You need to be the decision maker. It is their job to give you all the information, give you all the options, and let YOU decide. Perhaps that is why it has thrown you so much- having others decide our fate is a very rough place- I know I would be claiming that decision back myself.

    It sounds like even with the colostomy your digestive is inflamed and irritated, if you are having difficulties with the skin on your rectum, that seems to indicate that. I might suggest that you start with any other options you have from a medication point of view- after all, any surgery will be problematic if you start with irritated, inflamed tissues, and go better if your tissues are happier.

    And remember, you don’t need to decide today. There is nothing wrong with leaving it status quo for a while, and deciding one way or the other if and when something changes.

    All the best,

  4. Linda Simmons April 28, 2015 / 11:14 am

    As a ostomy nurse I say if it’s not broke, don’t fix it especially being medically complex and rare [ good docs are so hard to find]
    I also get the frustration with all the medical interventions that you require to keep you some what functional, we live that way too.

    Linda Simmons

  5. Veronica Hart April 28, 2015 / 6:32 pm

    At times like these, I wish medicine were much more science and a bit less art. As much as the doctors know (and I’m sure they know alot), they just don’t know how things will work in a particular patient. And I have no idea who thought of the word ‘patient’ because honestly, *patient* is the very last thing that I am when it comes to my medical care. I, too, am sick and tired of being sick and tired. I hate it for all of us.

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