Destigmatising the Colostomy bag – It’s not just for old people

When you think of colostomy bags, your mind immediately goes to old people. It’s such a stigmatised thing that no one talks about it and people certainly don’t share the information willingly that they have one. It’s just something that is not spoken of.

If you regularly read my blog, you will know I’ve recently had serious surgery. If you don’t know then read these posts;

• Not your regular birth story
• There is always something to be thankful for 

Well one of the delightful outcomes of my nightmare experience was that I woke up from surgery with one of these delightful bags. I wasn’t prepared for this, I had had no prior warning and there was NO way of knowing that could happen as it was a decision my Doctor had to make during my surgery after finding my colon in a bad state (it had been lying in acid for days). For a while, I wasn’t sure if this was something I’d tell people about or not but after 6 weeks of living with it, it’s obvious to me that I should. This is my story.

Acceptance

I have a stoma, I’ve named him Francis. It took a while for me to accept that this is how I’ll be living for a few months. It will be reversed when my colon has had sufficient time to heal. That could take anywhere between 3 and 9 months. In the meantime, Francis and I are inseparable. We’ve spent a lot of time getting used to each other. He’s a lot less scary now that I’ve had a chance to get to know him.

While I was still in hospital, the nurses were changing the bag and I didn’t really have to confront my situation for the first three weeks. The bag changes have to happen every couple of days or the bags start drooping on your skin and can be a bit sad-looking. One nurse, asked me if I’ve looked at him yet. That was a huge moment for me. She made me get out a mirror and look at my stoma. I mean really look at him. If you’ve never seen a stoma, or don’t know what it is, it’s basically where your intestine is pulled through a hole in your tummy and acts as your bum. Yup, and your poop comes out that little hole and into the bag which you can empty out as often as you like.

Admitting to myself that this was something I would now be living with was difficult. I cried. I cried so much over discovering this new fixture to my body. Not only did I have healing from multiple surgeries and a new-born baby to deal with but now I’d also have the shame of living with a bag of poo attached to my tummy. It hasn’t been easy and it has taken me a while to get to where I am now.

He drives me nuts sometimes

The worst thing about Francis are his loud and obnoxious farts. Seriously!! You can not control your stoma. When they need to poop, they just do and when they fart, they make sure to do it as loudly as possible as in front of as many people as possible. It can be humiliating! I’ve found that the best thing to do is to just laugh it off and apologise on behalf of your stoma. People are much more forgiving the second time it happens if they know what’s going on and soon enough, you can have an entire conversation and everyone just ignores the loud farting noises coming from your belly.

The truth about my bag

It hasn’t been easy adjusting to this new way of living. Bowel activity isn’t really something that people talk about so it’s embarrassing when you suddenly have no control over yours and you can’t be discreet about it. Looking at my body in the mirror has also been difficult. I’ve now got a huge scar running down my middle, two gashes on the right of my body where drains were placed AND a bag permanently attached to me. It’s ugly and it feels like I’ll never be my same old self. Then I think about all the people who are diagnosed with Crohns disease for example and who have to live with these bags for the rest of their lives. I’m lucky that mine is only temporary.

[bctt tweet=”Never be ashamed of choosing life! #ISurvived “]

For now, I try to look at it as another trophy in my struggle reminding me that I lived. I nearly died in that hospital. September 2015 will never be forgotten – I had my precious son and nearly didn’t live to see him grow up but instead, I lived and this is a small price to pay to have my life. I can certainly handle living with a bag for a few months and not being ashamed of myself when the alternative was not living to tell the tale. When you think of it like that, my bag is a blessing.

Francis is quite a cute stoma anyway (or so I’ve been told by a nurse)… some of them are huge and ugly whereas he’s tiny and looks like a little pouting mouth. He’s not the worst thing that has ever happened to me, that’s for certain and after 6 weeks together, I’ve grown accustomed to having him around. You’ve got to be positive about these kinds of things and think about what the alternatives would be. It helps a lot with acceptance.

Always be kind

I hope more than anything that this post makes you realise that having one isn’t something to be ashamed about and if you’re around someone who has one, chances are the alternative for them was not being alive so try not to judge them and instead be supportive and kind.

It’s not an easy adjustment for anyone to suddenly be living with a stoma and a colostomy bag but I refuse to be ashamed of living!

Do you have one? How did you cope with the adjustment? Do you know someone who has had one? Did they tell people openly about it?

Please share this post so that others who are living with shame can realise that living isn’t something to be ashamed of!