Showing Your Ostomy Who's Boss

You may be reading this as a new ostomate. Or you may be reading it has someone with ostomy surgery planned. It may be that you are reading this as an experienced ostomate of many years or as someone just interested in the life of an ostomate.

I often read the advice ostomates give to each other. There is nothing more valuable than the advice of others who have or are experiencing what you have experienced. The experience of others is valuable in many areas of life, especially when faced with a bladder cancer journey. However, sometimes, it is important to ensure you place context in what you read.

Context matters

I have read many times that once you find an ostomy product that suits you, you won’t notice it, life continues, leaks are a thing of the past, etc. I don’t disagree with any of these things per se. However, the caveat I would add is, it won’t be like this for everyone. It also won’t be like this every day.

Why is it important to put context in these statements? Well, I will tell you why.

My ostomy struggles

In my case, my stoma is very retracted. This is not very common. It does however mean, leaks have been a constant in my life since my ostomy surgery. Not there every day but there in my mind. Some days it might be there as a practical requirement to address the leaks.

Other times, I have a good period of time and it is further back in my mind. But still there. I will be conscious, especially in public places. My emotions will be heightened, and I will be a little anxious in case I have a leak.

If I am venturing out, I always have my diaper change bag which I use for spare supplies and 2 spare changes of clothes (I have 2 ostomies).

On a bad day, for the first couple of years, when I used to read that “leaks are only a problem early on” or if asked in an online support group for advice, I got told often that I had the wrong product, didn’t know how to apply my product, etc.

Of course, this is all valid. These can be possible causes for leaks, but it is not the whole story for everyone.

I found myself justifying myself and explaining at length the engagement with my ostomy nurse, having tried all possible products available. I felt inadequate in some ways and like I really was an anomaly in the ostomate world.

Showing your ostomy who's boss

I then grew strength. I understood my circumstances were different and I had to allow for that. I had to plan a little more than others might.

I realised it was important to show my ostomy who was boss. To show my ostomy I was in control.

Planning for each and every event

This planning was way more than packing the supplies or the clothes. It was the emotional planning for any given situation. Preparing myself mentally for a leak, should it occur.

I spoke recently to a fellow ostomate and friend. They have had their ostomy for several years without any real leak issues.

They told me how upsetting the leak had been for them when in a public place. How much harder it was when not at home with space to lay out what was needed for the change.

That leak took a lot out of them. They weren’t mentally prepared for it in that moment and why would you be, or should you be? It is, fortunately for them, a rare occurrence.

I realised at that moment, I had very much accepted that leaks are part of my life as an ostomate and I am practically and mentally prepared for most scenarios.

By doing this, I do live a normal life. Working and traveling and doing all I enjoy doing. I do also accept some days will be tougher than others. But they don’t define how I live my life. Jack (my colostomy) and Victor (my urostomy) don’t rule my life. They know who’s boss!