Our new mini blog series asks the question, ‘What do you wish you had known?’ In this latest blog, the Online Community team ask community members with different lived experiences what they wish they had known about Ileostomy, colostomy and stomas.
The blog includes questions you might want to ask, practical tips, and help with managing anxiety before appointments. It also includes reassuring messages about living with a stoma.
Visit the ‘What do you wish you had known before living with a stoma?’ forum to join the discussion.
For some people, there can be a mixture of emotions when they are told they will be given a stoma as part of their treatment.
You will find lots of friendly peer support in our Online Community. It can be comforting to know there’s a whole community of people who understand what you’re dealing with. We see every day how much support our members give each other by being there to listen and talk about each other’s experiences.
“I wish I'd known about this forum. At diagnosis, I was advised that I might need a stoma, but a few days before the op, I was told that it was unlikely. Because of this, I wasn't referred to a stoma nurse beforehand… As this was during covid it actually took until 4 months post op before I had the one and only face to face appointment with a stoma nurse (there was limited phone contact though). I ended up doing lots of problem solving (for leaks) by myself - requesting samples, talking to suppliers etc.”
- Community member, Ileostomy, colostomy and stoma support forum
This forum has been so useful in the intervening years, and, as I know quite a few folks who've been diagnosed with different cancers themselves, I always point them in the direction of the Macmillan forums.”
- Community member, Ileostomy, colostomy and stoma support forum
“Combined information from the Stoma Nurse and reading this forum provided these pieces of information. I am now confident enough after almost 2 years that I can venture out without an emergency change kit and only carry it when on long trips, such as travelling for holidays.”
- Community member, Ileostomy, colostomy and stoma support forum
Looking for more reassurance to live well with a stoma, read the ‘Reassurance from the Online Community’ blog.
A Community member, Kath, also shared their story, ‘Living with a stoma and confidence building’.
“I wish I had known more about how supplies are ordered. There was confusion between the two hospitals at the start, meaning I ended up very short of bags. My local hospital stoma dept who arranged the prescription, did send out some as an emergency. It was stressful, though, especially as I had leaks to begin with. I don’t have any complaints about living with a urostomy, it has improved my quality of life.”
-Community member, Ileostomy, colostomy and stoma support forum
“I wish I had been told early on that you can change your delivery company as I initially thought you had to use the one recommended by the hospital.”
-Community member, Ileostomy, colostomy and stoma support forum
“I quickly learnt to try whatever was available to find what best suits you. Register with an online specialist delivery service, and they will do everything for you from requesting prescriptions from your GP to delivery and they will help you find what's best for you. Always make sure you keep plenty of items in stock to cover any supply issues. You'll get used to it and it becomes part of your normal like. There’s loads of info available online to help you with any issues you have with it.”
- Community member, Ileostomy, colostomy and stoma support forum
It's reassuring to hear this member found their stoma had improved their quality of life. This can be the case for many people. Living with a stoma can come with practical challenges. It’s important to speak to your health care team if you experience any issues with supplies or unmanageable side effects.
If you are looking for information, Macmillan has some information pages on the website:
Don’t forget you can speak to the Macmillan Information Nurses in our Ask a Nurse section of the Community. It’s open Monday to Friday. You can also speak to the Nurses and Cancer Support Advisors on the Macmillan Support Line. They’re available 7 days a week, 8am to 8pm on freephone 0808 808 00 00, email or live webchat.
There is a friendly community of members in the Ileostomy, colostomy and stoma support forum if you are living with a stoma, or a LARS reversal.
“A day after going home… I started to struggle. Sleep was interrupted every hour by a sudden urge to get to the loo, and my poor bottom became red raw in no time. I was bloated, I felt a bit sick, and there was very little pain. I decided to wear incontinence pants in bed at night as I felt at severe risk of leaking. But things began to improve. I started to eat slightly bigger meals - a bowl of cornflakes, drenched in ice cold milk. A modest chicken slice, pasta and peas for dinner. My tummy began to lose that drum-tight, bloated feeling. I knew my large intestine, rendered unemployed for a year, was kicking back in.”
-Community member, ‘My experiences of stoma reversal’, Living well with stoma or LARS
Why not join the forum and introduce yourself? I am sure others will come along and show their support.
To catch up with the ‘what you wish you had known’ blog series, click the links below:
You can join the ‘What do you wish you had known before living with a stoma’ discussion. You may have questions you want to ask, need practical tips, or help managing anxiety before appointments. Whatever your experiences of living with a stoma, we would love to hear from you.
