I wanted my colostomy reversed ASAP but weeks after surgery I decided to keep it

One year on with a stoma. A scary and at the same time reassuring thought.
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This post appeared on Coloriginal.blog.

371 days since I last sat on the loo in a meaningful way.

366 nights since the quite literally shittiest and most painful night of my life.

364 days since I first nervously looked down at my new bright pink ‘arsehole’ tacked on the front of my abdomen.

365 days of streak-free underwear!

I could go on but…

I went to see my surgical consultant in January 2018 for a routine post-op visit. For the first five minutes, we discussed how I was feeling. I talked about the leaks, bag changes, and my returning confidence. He looked at my stoma and said all was good. I asked about restarting jogging/running and he said yes, but start slowly.

Then he said, "So what about the reversal?"

At several points in our conversation, he reminded me that any decision I made was not final. He set the scene by outlining that my surgery had been lifesaving and that the reversal was another major surgery that would require several weeks of recovery.

I then asked some questions about outcomes. He said success could not be guaranteed and that problems with any part of my colon would mean that the reversal was not possible. There was also no guarantee that (post-reversal) the twisting of my bowel would not reoccur. That happened to me once before. And while they knew it was a mechanical issue, they didn't know the underlying cause of the twisting. If it was to reoccur then the operation to resolve it could be removing the rest of my colon, leaving me with an ileostomy which requires far more management and lifestyle changes.

My current situation did not require huge lifestyle changes. I could work, run, drive, drink, and generally eat what I wanted.

My bowel function has at times been problematic in a way that has seen me having emergency craps behind bushes or down an alleyway. This has been resolved with the bag.

I am a 56-year-old bloke with elevated blood pressure and cholesterol who doesn’t enjoy hospitals. I view hospitals in the same way as parachutes – only to be used in emergencies – when your life or health is at risk.

At a certain cognitive level, the reversal is cosmetic surgery. It won’t save my life and it could possibly make things worse.

So, we discussed all of these things and then he said, "What do you want to do?"

I said, "I don’t want a reversal."

A year ago I wanted a reversal as soon as possible and then nine weeks later decided, all things considered, I’d keep it. A significant decision. If you had told me last year that I'd be saying this I would've laughed in your face and said never. 

So what’s changed? 

Well, the scar has all but disappeared. It looked very Frankenstein like on the picture that appeared on Manbag#1 but as I said at the time I was never really bothered by it.

I was fortunate in the placement of my stoma. Not that I had any say in the matter. It is quite high up my abdomen, so I didn’t have any issues with clothes, trousers sit naturally just under it. I do have a couple of issues; when I bend down to tie up my shoes it will compress the bag and stoma-fart. I have a similar issue when cycling; my position on the bike compresses the seal causing me to leak, so I just put extra tape around the flange to keep things secure. But other than that it’s OK. OK is a good place to be.

I think the hardest part was dealing with the idea of losing control because with no sphincter at the end, it just pumps stuff out and that takes some getting used to. Sometimes you are aware that it's active, other times you realise afterward your bag filled up. I guess the control thing goes right back to when we were kids. The three main things that we learn as children are walking, talking and controlling our bowels — all of a sudden I lost that control. Factor in the shame factor of losing control when you begin to make that transition as a child and you can begin to understand why for me I found it one of the hardest things to get my head round.

Keeping the colostomy is a positive decision that I'm making about my body, my mental wellbeing, and my quality of life. I can reconsider in the next 24 months if events or my stoma changes. My choice, my decision.

I said right from the start that my stoma would not dictate my life. Now I can concentrate on what's important to me: Gill, my photography, writing, getting back in to running (slowly), and my new job.