Help design support and advice for patients with stomas

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Consultation has concluded

Bowel cancer is the 4th most common cancer in the UK with the main treatment being surgery and chemotherapy. Of those who have surgery around 40% are left with a permanent stoma and more will experience a stoma formation and reversal. Previous surveys have shown that people are not receiving the nutritional support that they need to overcome nutritional difficulties following bowel cancer treatment.

Currently there is a lack of standardised support and advice to patients following a stoma formation for bowel cancer treatment. The aim of this project is to understand patients experiences following stoma formation and what information and support they would have found helpful following the stoma formation. The information gained will go forward into developing a larger research grant to explore how best to support people who have a stoma formation following colorectal cancer surgery to re introduce diet and control symptoms.

We would like to hear from anyone aged over 18 years old who has had a colostomy or ileostomy formation as part of their treatment for bowel cancer, or their carers. We would like to hear from both those who have had a permanent or a temporary stoma formation.


How can you get involved?

There are various ways to get involved with the project and help us understand your experience of reintroducing nutrition and hydration following a colostomy or ileostomy formation as part of your bowel cancer treatment. The information you provide will be used in the design of the research project.

Share your story below – Tell us about your experience of colostomy or ileostomy formation and the information and support received from healthcare professionals.

Share your ideas below – Share your insights into what you think would be helpful and what information you would have liked to received for caring for your stoma.

Be part of a patient advisory group to support the research – Be part of a small advisory group and have input into the design of this project. This will be a virtual group that will meet Monday 4th December 11-12am or Tuesday 12th December 5-6pm, please email [email protected] if you would like to join. You will be reimbursed for your time in contributing to this virtual group.

Bowel cancer is the 4th most common cancer in the UK with the main treatment being surgery and chemotherapy. Of those who have surgery around 40% are left with a permanent stoma and more will experience a stoma formation and reversal. Previous surveys have shown that people are not receiving the nutritional support that they need to overcome nutritional difficulties following bowel cancer treatment.

Currently there is a lack of standardised support and advice to patients following a stoma formation for bowel cancer treatment. The aim of this project is to understand patients experiences following stoma formation and what information and support they would have found helpful following the stoma formation. The information gained will go forward into developing a larger research grant to explore how best to support people who have a stoma formation following colorectal cancer surgery to re introduce diet and control symptoms.

We would like to hear from anyone aged over 18 years old who has had a colostomy or ileostomy formation as part of their treatment for bowel cancer, or their carers. We would like to hear from both those who have had a permanent or a temporary stoma formation.


How can you get involved?

There are various ways to get involved with the project and help us understand your experience of reintroducing nutrition and hydration following a colostomy or ileostomy formation as part of your bowel cancer treatment. The information you provide will be used in the design of the research project.

Share your story below – Tell us about your experience of colostomy or ileostomy formation and the information and support received from healthcare professionals.

Share your ideas below – Share your insights into what you think would be helpful and what information you would have liked to received for caring for your stoma.

Be part of a patient advisory group to support the research – Be part of a small advisory group and have input into the design of this project. This will be a virtual group that will meet Monday 4th December 11-12am or Tuesday 12th December 5-6pm, please email [email protected] if you would like to join. You will be reimbursed for your time in contributing to this virtual group.

Tell us about your experience of colostomy or ileostomy formation and the information and support received from healthcare professionals.

Thank you for sharing your story with us.
CLOSED: This discussion has concluded.
  • Share Experience of a temporary loop colostomy on Facebook Share Experience of a temporary loop colostomy on Twitter Share Experience of a temporary loop colostomy on Linkedin Email Experience of a temporary loop colostomy link

    Experience of a temporary loop colostomy

    by windymiller79, over 2 years ago

    Temporary loop colostomy at relatively short notice at the Chelsea & Westminster under an excellent team of surgeons, still had time for a pre-op meeting with the stoma clinic nursing team and I found all three of them to be fantastic. Gave me full awareness of what was going to happen. They were ready for me as soon as I awoke from the operation, visited me regularly in recovery on the ward and gave me all the coaching I needed to carry on at home. Gave me a good amount of supplies to get started, I was soon back in... Continue reading

    Temporary loop colostomy at relatively short notice at the Chelsea & Westminster under an excellent team of surgeons, still had time for a pre-op meeting with the stoma clinic nursing team and I found all three of them to be fantastic. Gave me full awareness of what was going to happen. They were ready for me as soon as I awoke from the operation, visited me regularly in recovery on the ward and gave me all the coaching I needed to carry on at home. Gave me a good amount of supplies to get started, I was soon back in the clinic as an outpatient and the account and first order was made with Coloplast, and after that I was well able to get an online order made and my GP would approve it. The stoma clinic nursing team were the main monitors of my healing and recovery after surgery with frequent appointments initially, spaced out further after recovery to monitor stoma function generally. Where there was a problem was when I started to prolapse and, in the outpatient clinic, the nurses ordered the appropriate stoma belt for me online like the stoma supplies but my GP repeatedly failed to approve the prescription for this - a support belt - allowing my prolapse to worsen. But the stoma otherwise was well managed, I took to it quickly as “a new normal”, I was even able to work offshore for weeks with sufficient supplies, and eventually it was reversed 15 months after it was installed. The only discomfort was prolapse. I very rarely leaked.

  • Share In response to the question, yes this is open to carers too! on Facebook Share In response to the question, yes this is open to carers too! on Twitter Share In response to the question, yes this is open to carers too! on Linkedin Email In response to the question, yes this is open to carers too! link

    In response to the question, yes this is open to carers too!

    over 2 years ago

    Sorry this was not clear.

    Nancy Adjei, Patient and Public Involvement Coordinator

    Sorry this was not clear.

    Nancy Adjei, Patient and Public Involvement Coordinator

  • Share Is this opportunity open to carers of those affected by this surgery as my father had an ileostomy followed by reversal surgery last year on Facebook Share Is this opportunity open to carers of those affected by this surgery as my father had an ileostomy followed by reversal surgery last year on Twitter Share Is this opportunity open to carers of those affected by this surgery as my father had an ileostomy followed by reversal surgery last year on Linkedin Email Is this opportunity open to carers of those affected by this surgery as my father had an ileostomy followed by reversal surgery last year link

    Is this opportunity open to carers of those affected by this surgery as my father had an ileostomy followed by reversal surgery last year

    by Lacoste1985, over 2 years ago
    Is this opportunity open to carers of family members that have previously been affected by things like ileostomies and reversal surgery?
    Is this opportunity open to carers of family members that have previously been affected by things like ileostomies and reversal surgery?