Living With A Stoma – My Honest Pros and Cons

Introduction

If you’re reading this, chances are you’re facing a tough decision: whether to live with a stoma or to move forward with a J-pouch. I know how heavy that choice can feel, because I’ve been there myself. I lived with ulcerative colitis for 13 years, then with a stoma for just over a year, and I’ve now lived with a J-pouch for more than 15 years.

In this post, I’ll share the real pros and cons of my experience living with a stoma. In a follow-up blog, I’ll do the same for life with a J-pouch.

This isn’t medical advice – I’m not a doctor. It’s simply my journey: the lessons I learned, the challenges I faced, and the things I wish I’d known when I was making my decision.

Living with a Stoma – Pros:

First

The biggest pro for me is that it did what the medicines could no longer do. It could cure me of my ulcerative colitis. 

I was Steroid dependent, immunosuppressed, chronically unwell all of the time. All of the treatments I’d had, had all stopped working.

The surgery removed the ulcerative colitis from my body. For all intents and purposes for me, it was a cure. 

The urgency, the bleeding, the stomach cramps, were all gone. It all stopped. It was life-changing.

Second

The second pro for the stoma is being free in a way I hadn’t been for years. I could do sports again, eat again and I had choices in pretty much every area of my life that the UC had robbed me of. The stoma gave me back control of my life instead of the UC controlling my life.

Third

The third pro for the stoma was more mental. It made me want to try. In my mind, I told myself, if I’m going to go through this, then there has to be something positive at the end, once I had a stoma. I have to be able to stand up and feel like it’s had a positive change for me. 

I had to try more. Try being more social, try going out more, try meeting more people and going to new places. It helped ignite a fire for a new chapter in my life. I couldn’t go through something like this, and carry on as I was. I was cut off from life and tied to the house unwell. That had to change.

This was a mental change rather than a physical change. But because of the gravity of the physical change, there had to be something big on the other side.

Fourth

And number four of the pros for the stoma is that it gave me confidence in my long-term health. Instead of worrying about the risks of living with UC, I was finally free to live a life that wasn’t defined by UC or wasn’t held back by UC. 

Unless you’ve lived with a long-term chronic health condition, it’s hard to understand just how much of that freedom, how much of that confidence you can lose when you’re constantly worrying about your illness. 

Having a stoma, whilst as challenging as it is, gave me a powerful sense that I could be in control of my own destiny and that my future was now mine to write rather than the UC controlling everything.

There’s a lot of pros for having a stoma. I think the biggest benefit by a long way was no longer living with UC. The stoma gave me the thing the medicines couldn’t. Although I now live with a J pouch, I’ll always be incredibly grateful for my time with a stoma. But living with a stoma brings challenges, especially if you’re not expecting some of them. 

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Want to dive deeper into what living with ulcerative colitis and J-Pouch really feels like?
My book Ulcerative Colitis: Generations Apart shares the journey across two generations — raw, honest, and full of hope.
Find out more HERE

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Living with a Stoma – Challenges:

First

The first challenge was my body image and I had to get comfortable with. Having a stoma is a significant change to your body, and it’s a one-way ticket. Once your colon is removed, you can’t go back. It took work, but I did become comfortable with it. But make no mistake, it is a change that’s visible on the outside of your body. 

It meant I had to think about clothes. How would my jeans fit me? How would waistbands on my trousers fit around my tummy with a stoma and a stoma bag on my tummy?

I was very aware about how it would impact relationships and intimate relationships. There were things I tried like covers and waistbands, to help with confidence.

Second

The second challenge might be one that surprises you. It’s noise. The stoma operates with no control from the person that it belongs to. There’s no muscles that you can squeeze. The stoma just works when it wants to work. This is true for waste, and it’s also true for wind and gas. 

I found working in a quiet office I would struggle with the noise that the stoma would make. People are used to hearing tummy grumbles for hunger. However, I couldn’t quite ever get as comfortable when people could hear my stoma working. I found this really embarrassing and it was an area I’d never considered.

Third

The third challenge I’ve got is managing the bag. Living with a stoma means managing the bag on a regular basis. It means changing the bag every 2 to three days. After a couple of days the glue holding the bag to you would start to break down and become less effective. When that happens, the bag will need changing. 

After a shower the bad is wet. It needed to dry before I put my clothes on, so it didn’t then make my clothes wet. I also had to shave around the stoma on my tummy so that when the bag stuck, it had a clean surface to stick to.

 I got use to all of these things and just had to schedule them into my weekly routine. 

Fourth

The fourth challenge I’ve got for living with a stoma is to do with leaks. Sometimes the glue can break down from the middle of the bag and the output from the stoma would get under the glue from the middle. This would then work its way to the outer edge and if left unchecked would cause a leak. 

This create a practical problem of needing to get the bag changed as soon as possible. It also meant the output from the stoma has been resting on your skin on the surface of your tummy. This output can be acidic and can aggravate your skin. 

The other thing I would put in the leak category is waking up with a blimp in the morning where you’ve left your stoma several hours overnight. I had to be very careful when getting up in the morning to make sure I didn’t knock the bag in case it popped. 

I never quite knew when a leak might occur. So every time I went out, I always took spare bags, and spare wipes, so I could fit a new bag on.  I also took spare underwear and a change of clothes just in case my clothes got soiled. This is something you learn to live with. I got used to living that way.

Closing Thoughts

Living with a stoma was a turning point in my life. It gave me freedom from ulcerative colitis, energy to rebuild my health, and the chance to take back control of my future. At the same time, it brought challenges I never expected — from leaks and bag changes to body image and day-to-day adjustments.

For me, the stoma was both a cure and a bridge. It was the step that allowed me to move forward, and ultimately to the J-pouch. In my next blog, I’ll share what it’s really been like living with a pouch for more than 15 years — the pros, the cons, and the honest truths I’ve learned along the way.

To see where the stoma fits in on my whole surgical journey take a look at the J Ladder which visually maps out the pathway of UC to J P-pouch.

To watch the video below where I discuss all the pros and cons in one go. You can see more videos on this topic on my YouTube Channel HERE.

For a medical overview of an Ileostomy look at the NHS website HERE

To read the follow up blog on Pros and Cons of living with a J Pouch read the blog HERE