In today’s post, I wanted to spend a few minutes talking about one stage of the ulcerative colitis to J-pouch journey that often gets overlooked: living with a stoma.
If you are on the UC to J-pouch pathway, there is a good chance you may live with a stoma for a short to medium period of time. In my own journey, I had an ileostomy, then a loop ileostomy, before eventually having my takedown surgery. Altogether, I lived with a stoma for around a year and a half.
During that time, I discovered a few tips, tricks, products and small adjustments that made life with a stoma a little bit easier. These were not things I knew about straight away. A lot of them were things I picked up once I was already living with a stoma and learning what worked for me.
One of the best things I did was phone my stoma supplier and talk through some of the issues I was having. They were very helpful. Of course, they are companies, and the more products they supply, the more they sell. But they also had access to a range of useful items that genuinely helped with some of the small day-to-day problems I was experiencing.
Thickening Sachets
The first thing I want to talk about is thickening sachets.
These are small sachets that you place inside your stoma bag. When they come into contact with liquid, they break down and help turn very loose output into a thicker, more gel-like consistency.
If you have very liquid output, you may find that you struggle more with leaks, bag changes, or that general feeling of liquid moving around in the bag. For me, thickening sachets helped reduce that.
I found them especially useful after meals, alcohol, or drinks that I knew would make my stoma work more or make my output more liquid. I would pop one of these sachets into the bag, and it helped thicken everything up. That reduced the liquid movement, helped with leaks, and gave me a greater feeling of control.
But I would add one important note.
If your stoma output is already fairly thick or mushy, these sachets may not help. In fact, for me, they could make things worse if the output was already thick enough. You can end up with clumps and blockages inside the bag, which makes emptying it more difficult than it needs to be.
So, for me, thickening sachets were best used when my output was genuinely very liquid.
Flange Extensions
The next thing I discovered was flange extensions.
These are extra adhesive strips that go around the outside of the stoma bag baseplate. They basically extend the area where the bag sticks to your skin.
I found these really useful because they gave the bag more sticking power. It made the bag feel more secure, especially if I was moving around more or worried about leaks.
They also helped create an extra barrier. If output started getting under the edge of the flange and working its way towards the outside of the seal, the flange extension gave it another layer to get through before it could become a leak.
For me, that extra bit of security was worth having.
Odour Spray Bottles
Another useful item I found was small odour spray bottles.
These were tiny bottles, but they were highly concentrated. The one I used had a mint scent, a bit like mouth mints or chewing gum. It was very strong, but that was the point.
When I first had to manage my stoma in public bathrooms, these sprays were really helpful. They helped mask some of the smells that can come from emptying a stoma bag, especially the bile-type smell or the smell of looser output.
If you are socially conscious or worried about using public toilets with a stoma, this kind of spray can help. I got mine through my stoma supplier, and it came on prescription. It was a much more pleasant smell than simply emptying the bag without anything.
Adhesive Removal Sprays and Wipes
Another thing that made life easier was adhesive remover.
These came as wipes and sprays, and they helped when removing the stoma bag from the skin. Instead of just pulling the bag away, you could spray a little adhesive remover where the gap was forming, and it would help break down the stickiness.
This made bag changes cleaner, easier and much more comfortable.
It also helped reduce skin irritation. As a man, I used to have to shave around my stoma area, and without adhesive remover, removing the bag could pull on hairs and be quite uncomfortable. The spray helped the bag come away much more easily.
One thing I would say, though, is that after using adhesive remover, it is important to clean the skin properly before applying a new bag. You do not want to stick a fresh stoma bag on top of something designed to break down glue.
But for getting the old bag off, especially when it was really well stuck down, adhesive remover made bag changes a lot easier.
High-Waisted Clothes
Another thing that helped me was thinking carefully about clothing.
This may be especially useful for women, because there seems to be a wider range of high-waisted clothing available in women’s fashion than men’s. But the general idea applies to anyone living with a stoma.
When I was choosing where I wanted my stoma to be sited, I paid attention to where the waistband of my jeans and work trousers naturally sat on my body. That mattered because you do not want your waistband cutting directly across the stoma or the bag.
Afterwards, I realised that high-waisted trousers and jeans can be really useful. They allow the waistband to sit above the stoma rather than pressing into it.
That can make clothes more comfortable, help hide the stoma bag, and give you more confidence when you are out and about.
I am definitely not a fashion expert, but for me, clothing made a difference. If what you are wearing helps hide the bag and makes you feel less self-conscious, that can make a real difference to your confidence.
Explore Different Stoma Suppliers and Products
A lot of the things I discovered were not things I was told about automatically. They were things I found by asking questions and doing a bit of research.
When you first leave hospital, you will probably be set up with a stoma supplier. That is a really helpful way to get started. For me, it was brilliant because it helped me understand how to order supplies, how deliveries worked, how to use templates, and how to get the basic support I needed.
But after a while, I realised there were quite a few suppliers out there and a whole range of products available.
There are one-piece bags and two-piece bags. There are different flange systems, different shapes, different colours, bags with charcoal filters, support belts, accessories and other products designed for different situations.
If you are going to live with a stoma for a while, it may be worth looking around and seeing what else is available.
TIP: TRY PHONING AND ASKING IF THERE ARE FREE SAMPLES YOU CAN TRY
For example, you might want a larger bag if you know you have a long day ahead. Or you might want a smaller bag for a special occasion or a particular outfit. There are more options out there than you may realise at first.
I found this out by phoning suppliers and explaining what I was struggling with. At one point, I was on antibiotics and had been warned that they might make my output more liquid. I initially phoned because I thought I might need more bags due to more frequent changes.
As the conversation developed, the supplier explained that there were accessories that could help with liquid output. That was how I discovered thickening sachets. It really was that simple.
So my advice would be: do not assume you have to stick with the first product you are given forever. If something is not working well for you, there may be another product or accessory that helps.
Speak to Your Stoma Nurse or Medical Team if You Are Struggling
It is important to say that if you are having real problems with your stoma, you should speak to your healthcare team.
If you are having frequent leaks, skin problems, nodules growing around the stoma, blockages, or anything that feels wrong, speak to your stoma nurse, doctor or medical specialist.
The things I have shared here are just products and practical tips that helped me personally. They are not a replacement for proper medical advice.
Living with a stoma can be tough at times. The last thing you need is extra problems making the experience harder than it already has to be. If something is not right, get proper help.
Final Thoughts
These are just a few of the things I found useful during my time living with a stoma.
For me, thickening sachets, flange extensions, odour sprays, adhesive removers, clothing choices and exploring different suppliers all helped make day-to-day life a bit easier. There are a lot more products available to help people live a great life with a stoma. Pastes, Stoma rings, support belts, and even special types of underwear.
If you are on the UC to J-pouch journey and you are going to live with a stoma for a period of time, I hope some of these ideas help.
Pouch Heals covers the whole journey from living with IBD and ulcerative colitis, through stoma surgery, recovery and life with a J-pouch. This post has focused more on the stoma stage, but there is plenty more content available across the rest of the Pouch Heals website and YouTube channel.
To see the video version of this blog check out the YouTube channel Pouch Heals or play below.