Stoma Series - reassurance from the Community

Rocky cliff going in to a blue sea with the words Stoma series, reassurance from the Community written in black across the picture

Have you been told you may need a stoma after treatment or surgery? Are you already living with a stoma? This blog is a collection of supportive and shared experiences from members who have had, or currently live with a stoma. If you’re looking for some reassurance, you may just find it here.

Even if you’re not looking for reassurance about living with a stoma, you’ll still find lots of warm peer support. It can be comforting to know there’s a whole Community of people who can understand what you’re facing. We see everyday how much support our members give each other by being there to listen, and talk about each other’s experiences.

Being told that you need a colostomy, ileostomy urostomy or a laryngectomy stoma, can cause a range of feelings. You may have been given different options by your health care team which has led to more questions.

This is why it can be helpful to have a space like the Online Community to talk through your concerns. Our groups are open spaces to ask questions that mean a lot to you. Here are a few of the most recent posts from our members:

“Whilst I will no doubt have lots of learning to do to come to terms with the new arrangement for getting rid of liquid waste. My main concern in terms of how this will impact on my life?”
Community member, Ileostomy, colostomy and stoma support forum, Hello, I’ll be joining shortly!’ discussion

"Despite the obvious shock I am positive mentally as just need to do what needs to be done, as at 54 I am not prepared to give up. However one of the big decisions I face is the options for how to urinate in the future. There are fundamentally two choices - urostomy bag or neo bladder. Both have pro’s and con’s from the research I have done. I will have to be partly guided by my surgical team but do have a say ultimately and am interested in talking to people who have been through the operation, discussing which way they went and how they feel about their choice now. 

Thank you to anyone prepared to share their feelings on the subject. I really hope and intend once I am through this to somehow help others on the journey, when they need it."
Community member, Bladder cancer forum, 'Radical cystectomy- options' discussion

“I saw the surgeon yesterday he said I had to choose between a colostomy and an ileostomy. I don't have to decide until the day before the operation but today I had a call from a specialist stoma nurse who gave me a lot of information about the difference between a permanent and a temporary stoma. But what would really help me is some input from someone who has had either of these procedures and can tell me a bit about what it is really like living with a stoma bag. What difference does it make to your quality of life?”
Community member, Ileostomy, colostomy and stoma support forum, ‘permanent v temporary stoma’ discussion

"I'm new to this group and your post was the first I read. I'm so pleased your PEG has been removed. That is something I am working towards. My treatment finished end of April. I had a few setbacks in my recovery so eating took longer than I hoped. My swallowing is ok, my trouble is dry mouth and textured foods in my mouth. I've gone backwards and back on only soft foods like yogurts and only a few spoonful's. I'd be interested to know how you overcame these hurdles and quantities you were eating before your PEG could come out."
Community member, Head and neck cancer forum, 'next chapter' discussion

It’s natural to think about how a stoma will impact your life and daily routines. You may even be considering to not have a stoma and choose a different treatment path because you’re uncertain how life will be after your surgery.

We’re glad you’ve turned to the Online Community for support as our you can find many discussions about living with stomas in our Community groups. If you have a question, members are never far away with a listening ear and reassuring voice.

“I had recurrent cervical cancer which spread to my bladder, along with lots of other places, and had a total pelvic exenteration which left me with a colostomy and urostomy. I have a very good quality of life now, and manage my bags without any major issues at all. Hopefully this is a group where I may be able to offer something based on my own experiences.”
Community member, Bladder cancer forum, Just joined- hello everyone’ discussion

“I think it can be pretty difficult if you’re given a choice-I’m not very good at decision making so glad I didn’t have to do that. I consider my quality of life to be excellent, and I do also have a urostomy to manage, but you soon get into the swing of it. Hopefully you will be able to come to a decision that you’re happy with-we’re all so different!”
Community member, Ileostomy, colostomy and stoma support forum, ‘permanent v temporary stoma’ discussion

“All in all I am so much better off with my stoma. It only smells when I empty it. The pouch really does not stand out that much. I wear skinny jeans and a top and it doesn’t notice. In fact everyone that sees me says how well I look.”
Community member, Bowel (colon and rectal) cancer forum, ‘stoma’ discussion thread

"I had a defunctioning loop colostomy on 30th September in preparation for treatment. After the first couple of days Which were a steep learning curve, I have found having a colostomy quite easy to manage. You quickly adapt."
Community member, Anal cancer forum, 'Newly diagnosed -Colostomy or not pre treatment?' discussion

“Have you ever detected a stoma bag by sight or smell if you haven't been told it was there?  I never have - and in fact I couldn't detect one that I knew to be there.”
Community member, Bowel (colon and rectal) cancer forum, ‘stoma’ discussion thread

“Modern bags/pouches are well designed and do not smell. They can also be concealed well so unless you told someone they wouldn't know you had a stoma. I live my life very similar to how I was prior, you adapt and get used to it. I play sports and cycle, swim, holiday, and eat normal stuff without a problem.”
Community member, Bowel (colon and rectal) cancer forum, ‘stoma’ discussion thread

“I think the first few times you have to empty or change the bag it is overwhelming but you’ll be shown what to do by a nurse. Once you’ve done it a few times it all becomes so much easier. Speaking to people that have been through it will help, it helped us! The stoma doesn’t have to stop you living a full life, going swimming and doing sports, travelling, etc. It does take some getting used to but already we are in a routine with it. The stoma saved my husbands life and we have to try and view it in that way, that it’s a good thing”
Community member, Bowel (colon and rectal) cancer forum, ‘stoma’ discussion thread

“I have had an ileostomy in May and after the initial shock of being told I needed a stoma and waking up from surgery with it, I managed well. I had a few teething problems... lots of pancaking so flat bags aren't for me, the covex bags are great and I now use the oakmed ones and haven't had any problems in months.”
Community member, Bowel (colon and rectal) cancer forum, ‘life with a stoma discussion thread

Where can you find additional support?

If you need further clinical guidance, the Nurses on the Macmillan Support Line are there to help. To get in touch you can all 0808 808 00 00 for free between the hours of 8am to 8pm.

The Macmillan information pages have lots of trusted information and guidance. There are different headings to help you navigate the pages and find the information you are looking for. Some pages have diagrams and useful videos.

Click on the links below to read more:

Want to speak to other members with similar experiences? You’re welcome to post questions and chat to others in our Community groups. Click on the links to be taken to the group.

“I have gained so many tips for managing my stoma here it’s a great place for support and advice.”
Community member, Bowel (colon and rectal) cancer forum, ‘stoma’ discussion thread

“Everyone on here is really helpful and positive. You can ask anything. No question is too daft! Feel free to ask if you need any information.”
Community member, Bowel (colon and rectal) cancer forum, ‘stoma’ discussion thread

“I can only say that a stoma is nothing to be afraid of.”
Community member, Bowel (colon and rectal) cancer forum, ‘life with a stoma’ discussion thread’

Don’t forget our Community News section shares member’s stories and helpful information. There’s a list below of some guest and member stories

Further support signposts: 

Colostomy UK 

Ileostomy and Internal Pouch Support Group

Healthtalkonline has video and audio clips of people with stomas talking about their experiences.

Keep an eye out for our next blog post in this series where we will be focusing on what it’s like to live with a stoma and share some of our members stoma care tips. You can use the comment box below to share your main concern about stoma care or post in one of our Community groups. 

Anonymous
  • Hi everyone. Not been on the site for a while now, but feel I need some advice. My husband had surgery May of last year, a few complications after it, but now fairly well recovered. My problem I have is that he feels he doesn't want to go on holiday, anymore. I think this is mainly he doesn't feel comfortable in different places and how he will cope, if the bag leaks or splits. Even on a day trip I think he will struggle. Is there any tips we can both have on this please, as I feel i should be involved in any problems he may come up against.

  • Hi Gunners63,

    It’s Megan here from the Online Community team. Thank you for posting here in our Community news blog, I hope reading the blog above was helpful to you.

    I’m sorry to hear that your husband has some worries about going to different places with his stoma in case the bag splits. There may be others who see your comment here in this blog and will reply to you however I wondered if you’d like to start a discussion in the Ileostomy, colostomy and stoma support forum.

    In this forum, there’s others living with a stoma who often share tips and suggestions with each other. You’d be welcome to ask questions and chat to others here.

    If you need any help using the site or finding additional support, please don’t hesitate to get back in touch with the Online Community team.

    You can contact the Online Community team by sending a private message to the Moderator account, or by emailing community@macmillan.org.uk.

    Best wishes, 

    Megan
    Macmillan's Online Community team