Stoma series: tips from others living with a stoma

Stoma series: tips from others living with a stoma

In the first part of the Stoma series, there was lots of reassurance offered in the different discussions and information of how to find further support. In this blog, we’re highlighting some of the practical tips that our members have shared to manage their stoma.

It’s natural to have questions about stoma care and the Online Community has supportive spaces to get guidance from others who are also living with a stoma.

“It’s very early days for you and it’s great you’ve found this group. There’s so many experts in managing a stoma here and I have found great tips. My Stoma nurses were amazing and really got me sorted with the right products and advice.”  
Community member, Bowel (colon and rectal cancer forum), rectal cancer’ discussion thread

“So pleased I’ve found this group. I had my LAR August 4th and feel I can find advice on living with the stoma. I have found great tips here... I have to say the NHS team have been amazing, I feel so lucky to have been rushed through procedures, scans and finally the operation.
I didn’t really have time to think about managing the stoma showering, bathing ect.”
Community member, Ileostomy, colostomy and stoma support forum, ‘Newbie’ discussion thread.

There’s no judgement here, just friendly supportive people wanting to share their experiences in the hope it will help someone in a similar situation. If you have questions about the output, cleaning and wearing clothes, reading the posts below may be helpful. If you’d like to read more, click on the discussion thread link to join in the conversation or you can start your own discussion.

“My Stoma nurse recommended trying some late night dry crackers as she said that sometimes the ileostomy over reacts into a kind of starvation mode and out puts more. 
Well as my normal nutrition mode did exactly that, it hated me skipping meals, I thought why not try… I’m carrying on with my late night dry cracker snack.”
Community member, Ileostomy, colostomy and stoma support forum, ‘Stoma sleep and diets’ discussion thread

“The placement of the stoma is quite high, and he is finding it challenging to dress with a shirt tucked in, so far he doesn’t and opts for having shorts or jeans under the stoma and long shirts & tops. These help hide the bag really well. You can get belts to hold them in place but my husband didn’t get on with that.”
Community member, Bowel (colon and rectal) cancer forum, Stoma’ discussion thread

“In the early days when I had a lot of sore skin (which bled) round the stoma (excoriation they called it) armed with gauze squares, old towels and waterproof bed squares I surrounded the uncovered stoma site to let the air get to it. I had to stay awake to manage it, but it worked for me and the skin started to heal. I took this advice from my Stoma nurse. I did this a few times during the day and night for a few weeks. I'm not suggesting you do this but keep pressing your stoma nurses for advice.”
Community member, Ileostomy, colostomy and stoma support forum, Stomas, sleep, diets’ discussion thread.

“A tight plain coloured leotard might show the bag!!!! Then again if you had to wear one you could always pop a t shirt over and there are alternatives for in the gym.”
Community member, Bowel (colon and rectal) cancer forum, Stoma’ discussion thread

Gail who’s a clinical stoma care nurse, talks about stomas and preparing stoma patients physically and psychologically for having a stoma in this short video. She talks about how they are fitted, how to care for the stoma whether it is a colostomy or an ileostomy and cleaning and replacing the bag.



Maybe you can offer some support to your ostomates in our Community groups?

If you want to share your personal experiences and support other members, then you can click on the below. I'm sure the members asking the below questions would appreciate your support and hearing any coping strategies you may be able to share. 

Help please. It’s driving me nuts I cannot seem to attach my bag tightly to the edge of my Stoma which then pancakes or leaks around under the bag and burns my skin.”
Community member, Ileostomy, colostomy and stoma support forum, ‘Tips please on attaching bag so no leaks’ discussion thread.

Hi all, I will be having a RC with urostomy mid January. So a few queries about equipment needed”
Community member, Ileostomy, colostomy and stoma support, Stoma supplies and making use of some existing gear?’ discussion thread.

“People on here often talk about stomas being upset. How do you know if one is upset?”
Community member, Bowel (colon and rectal) cancer forum, Upset stoma’s’ discussion

Any suggestions on how to get some restful sleep?”
Community member, Ileostomy, colostomy and stoma support, ‘Uncomfortable at night’ thread.

"I have been living with urostomy and colostomy since November last year due to recurrence of cervical cancer. I've been wondering if there is anyone like me having 2 stomas (in my case they're both permanent)."
Community member, Ileostomy, colostomy and stoma support forum, 'Living with urostomy and colostomy' discussion thread

Looking for additional information and 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.

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.

You can use the comment box below to share your stoma care tips with others. Keep an eye out for our next blog post in our ‘stoma series’, where we look at the changes members make to their diet when living with a stoma.

Anonymous
  • I have no idea if this might help anyone but I thought I would share….. had an APR last July, and have a permanent Colostomy. What scared me the most was how it might impact the things I live for, mainly SCUBA diving. Well on 1st Jan I flew to Egypt for a diving trip, and it was fab. I admit that my 7mm suit was a tad tight - which may have been the reason for no stoma issue - but I used an ope bag in case I might need to release air on ascent, but that never was an issue, and the seal was perfect. Anyone else out there got any experience of diving with a stoma? Would be keen to set up a diving discussion group if it doesn’t already exist! 

  • Thanks for this Meg 

    I enjoyed reading it through and visiting the older posts. It’s really helpful. It must have taken you ages 

    You guys are amazing 

    kind regards

  • Hi ,

    Thanks for your comment and reaching out to help others. I hope you found Meg's blog helpful to read through. 

    Your trip to Egypt sounds like it was really special. You might find it helpful to also reach out in our Ileostomy, colostomy and stoma support forum as there may be some other divers who have a stoma there.

    Members in other groups have set up discussion threads for specific hobbies, such as gardening, where people can post updates and chat. You could set up a discussion thread for diving as I don't think we have one just now. To do this, you firstly just need to be a member of a group. You can then click "+new" or "+" next to the group title to write a new post and start a new discussion.

    We aim to support all our members as best we can, so if there's anything further we can do to help or if you have any questions, please let us know. You can contact the Community team directly by sending a private message to  or by emailing community@macmillan.org.uk.

    Best wishes,

    Eliza

    Macmillan Community team

  • Hi ,

    Thank you for letting Meg know that you enjoyed reading the blog. I'm Eliza from the Community team, I hope you don't mind me responding. I'll make sure that Meg sees your comment as well.

    We always do our best to make sure our content is as helpful as possible, and I'm glad you found it interesting to read through. 

    If you'd like to pass on any ideas for future Community News blogs or if there's anything we can do to help, please let us know. You can contact the Community team directly by sending a private message to  or by emailing community@macmillan.org.uk.

    Best wishes,

    Eliza

    Macmillan Community team

  • Hi Eliza

    Thanks for answering my comments .
    If I think of anything more that could be of use to others I will contact you. 
    I found that reading some of my words from five months ago made me realise how far I’ve come. 
    Thanks to the NHS and MacMillan.


    Best wishes to you all at MacMillan

    and a big THANK YOU 

    Artsie Ann