Go big or go home

In December of 2012, my surgeon told me I probably needed a colostomy. I wasn’t really ready to hear that. It didn’t seem like it should be so complicated. I just wanted to be able to go to the bathroom. But my lower GI tract was fundamentally broken. There would be no easy fix.

When I had my surgery in 2013, my rectum was not removed. I think they were worried I would have buyer’s remorse and want to go back to bowel prepping myself twice a week. I remember thinking that leaving the rectum in was a bad idea, but there wasn’t any obvious reason to remove it, and it wasn’t clear if it was a problem by itself or because I couldn’t go to the bathroom. So it stayed. And became a problem.

It was always very clear to me that if I got an ostomy, I would have it forever. I had seen several people about this, gotten several opinions. I did not think I could heal enough to ever not have the ostomy. A fair amount of ostomates get their ostomy reversed only to need a second one placed within a couple of years due to major issues. If I always assumed that if I got the ostomy, that that would be it. I would live with it forever.

I got some news on Tuesday that I wasn’t expecting. My mast cell specialist told me that he felt there was a second surgical option for me. This other option would be more complicated up front and less of a sure thing. But if it worked, I would no longer have an ostomy.

I was stunned. I am stunned. We had mulled this option over for my 2013 surgery and decided it wasn’t a good idea. But now, he thinks, it’s worth discussing. I fired off an email to my surgeon and sat down to stew about it. I’ve been stewing ever since.

I feel like this should be good news but I’m not sure that it is. It’s complicated. It would require removing a lot more tissue. It would be more invasive, with a harder recovery. I think it is less likely to work. I think it will work for a while and then I’ll need more surgery and a second ostomy in a few years. It’s not the safe decision, for sure. It could be a huge failure. In several ways.

I don’t really know how I should feel about this, or how I want to feel about this. I prefer not to think about the possibility of not having an ostomy. I had to write it off to survive. I couldn’t focus on an idea that would probably never be real. So I didn’t.

I’m super casual now about my ostomy. I make jokes about poop and colostomy bags and farting in meetings. I don’t care if people see the bag or the lump under my clothes. I incorporated this reality into my identity two years ago and I never looked back.

I don’t regret getting the ostomy, but this is making me realize that I might be happier if I didn’t have it. It’s a lot of work. It’s a lot of work anyway, but it is especially a lot when you have both an ostomy and a central line. I am sterilizing things constantly. And the ostomy works better than my rectum did before, but I wouldn’t say it works well. It works okay. Maybe less well than what they could whip up surgically. Maybe.

I don’t know how I got here, to this place in my life where it’s no big deal to talk about constipation or my rectum on the internet. It was less of a transition and more like diving into the ocean: sudden, jarring, but not bad.  And this is hard for me to say, but I think I am a better person for doing it and I feel like reversing the ostomy would change me. I think when you live with a bag adhered to your body that it makes you less self conscious and less concerned about things you can’t control. I really don’t care about how people perceive me because of it and it factors very little into my self image. And I think that’s a good thing.

And what if they reverse it and it works for a while and then they have to reverse the reversal and I’m in the same position as I am now? Can I live with that? Can I live with the disappointment of regaining normalcy in this one very crucial way only to lose it, again?

When I was young, I had this very clear idea of how my life would go.  It did not include getting sick or having an ostomy. It did not include these things being so mundane that I can discuss them anywhere, with anyone, without getting upset. But they are. This is my reality and I don’t know that I can take having to get okay with this reality a second time.  I don’t know that I can take even the fear of it.

And the very hardest part: that I don’t want to be responsible for my own suffering.  I don’t want to be the one who decides not to take the chance at reversing the ostomy when doctors are telling me it could work.

I’ve always been the kind of girl who goes big or goes home. But it’s getting harder to take risks. And I don’t know whether or not it’s time to just go home.


5 Responses

  1. Lucy February 6, 2015 / 6:18 am

    My husband had stage 3 colon cancer 15 years ago and he had no options. He has a mechanical mind and is always “modifying things to make them work.” one time we came upon a couple from Louisiana on a mountain summit 30 miles from any town. Their car would not start. My husband removed their car battery, put it in the trunk and started their car a different way??? He told them to get in and drive to the nearest town and not to worry because we would be behind them for the first 20 miles. I was shocked and so were they. As his doctor was explaining the surgery (rectum removed)
    to my husband he was almost smiling, I thought he would never accept the diagnosis, he never went to doctors in the past. I had worked in a nursing home in the 70’s and saw way too much. My husband had an excellent surgeon, he called his hospital stay a vacation. He has never looked back. Never felt sorry for himself. He takes care of his own body. He is a thin guy because he runs his own company and works physically hard everyday. He just had so much in common with the surgeon way of re-routing the body. Not a problem. I admire him so much.
    You know your body, what it can handle, how it heals. Just trust you own instincts Lisa.

  2. Elena Knits February 6, 2015 / 7:28 am

    I know that accepting life limitations can be so difficult that even thinking about a better life can be scary because we don’t want to be disappointed. Try not to over think it and see what your doctors say about this procedure. I wish you all the best, you’re a warrior. Never give up.

  3. Mark Beckwith February 6, 2015 / 11:23 am

    Wow. Plumbing. I hate plumbing. So I subscribed to your blog because my wife has an undiagnosed mast cell disorder of some kind and we’re working on it. I’m glad to read this today, or perhaps sad to read it, because she has the most unusual situation – she eats virtually nothing, for fear of setting off anaphylaxis, and she had two poops in a row that set off anaphylactic reactions (that would be #s 12 and 13 respectively, in less than 3 years since it started), so she’s pretty much sworn off eating and pooping. Understanding this is essentially not sustainable, add to that that she does not appear to be losing weight, I mean, WTF? So here we are talking about poop and constipation together on the internet. Isn’t it grand? I’d LOVE to engage you on the above>/b> as you might have some advice or information. However, the reason I felt like writing today was to say that in my day job (patient advocacy) one thing I have learned is that frequently, if you wait, more options evolve into availability. If your surgeon’s new idea is cutting edge now (sorry), it is likely these two things may happen: 1) It will be routine after a while and 2) something even better will become an option. If it was me, and I was essentially comfortable with my state of relative stasis, I’d relax and just get back in my groove for a little while longer. Thank you, Lisa, so much for your writing about these unmentionables.

    • Lisa Klimas February 6, 2015 / 11:06 pm

      This second surgery option is not a “new” idea. It’s just an unusual remedy to my personal situation. Like I said, I’m not sure exactly how I feel about it. I am going to have trouble going the bathroom no matter what I do. And if I accept that, then having the ostomy doesn’t really “buy” me anything in this way. I am more concerned about the risk of needing more surgery later, as mast cell patients don’t do great with anesthesia. I’m still weighing the options, reading lots of papers and trying to figure out how I feel about it all.

      It may shock you to know that I know a few people just like your wife. The physical stress of a bowel movement can activate mast cells just via the mechanics; if it is difficult, it can also cause blood pressure dysregulation via another mechanism. The weight is probably from retained fluid/ third spacing if she is a mast cell patient. Is she pursuing diagnosis? What specifically makes you think it is mast cell related? I’m happy to help where I can. Someone should benefit from all my GI adventures!

  4. Mark Beckwith February 6, 2015 / 11:25 am

    Woops, looks like I messed up my html tag to unbold by >ing when I should have <d.

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