.png?width=900&height=146&format=webp&quality=50){kind=logo}
Stoma care and inflammatory bowel disease
If you are very unwell, your doctor may suggest you have surgery to create a stoma as the best approach to managing your health. Not everyone with Crohn’s disease or ulcerative colitis will need stoma surgery.
Find information below on what a stoma is and why you may be offered one, as well as some guidance on living with a stoma and some support for some concerns you may have.
What is a stoma?
- A stoma, sometimes called an ostomy, is an opening in the skin of the abdomen (belly/tummy), where a very small part of your gut is brought outside the body1-3
- A normal, healthy stoma is about the size of a 50p coin, sticks out a little from your skin, is painless to touch, and is pink-red and moist
- It allows waste from your digestive system (poo) to be collected before it reaches the inflamed part of your gut
- The waste is collected in a small pouch or bag attached to the stoma and worn next to the skin1-3
You may be offered a temporary, reversible stoma, or you may need a permanent one. Some people start with a temporary stoma and then choose to keep it.3
When might I be offered a stoma?
A stoma is an option in cases such as:1-3
- You have severe IBD that is not responding to medicines
- You continue to have symptoms, even while on treatment
- You cannot come off steroids
- You have serious or high-risk complications
A stoma can:1-3
- Relieve inflammation to the gut
- Allow surgery to be carried out further down the bowel, and allow healing time
- Allow large parts of the bowel to be removed
Hear what people with a stoma have to say about it and get some tips on how to
talk to others about it from Crohn’s & Colitis UK.
Looking after your stoma
The formation of a stoma is a life-changing event, and it can take time to adjust. Recovery after your surgery will mean physically healing while also coming to terms with having a stoma and learning how to manage it.
In hospital, you will meet your stoma nurse who will support you immediately after the operation and in the long-term. They will make sure you know how to look after your stoma by yourself, and how to spot and manage any problems.3
Find out what else your stoma nurse will talk to you about. You can also read more about stoma care nurses and other members of your healthcare team here.
Crohn’s & Colitis UK have information on stoma options, types, supplies and troubleshooting, and a variety of resources on surgery – have a look at their resources here.
Living with a stoma
A stoma should not stop you from living your life, although it can take time to adjust to the changes in your body and how you feel about them. Every person deals with their stoma differently and how much it affects you is entirely unique. Your stoma nurse and your wider IBD team are there to help you with this.
Stoma rehabilitation begins from the day you have your surgery and continues when you are discharged and at home. You will be given information by your stoma nurse at each stage.
Leakage
Leakage is a very common problem, experienced by 70% of people with a stoma.4
As leakage can affect your physical, mental, and social wellbeing,5 it is important to find the right tools and advice, to resolve any problems: Your stoma bag and stoma should fit snuggly together to prevent leaks.
Leakages can occur for lots of reasons, including:6
- A mismatch between the hole size in the adhesive of the stoma bag and the size of the stoma
- Poor contact between the adhesive and your skin caused by folds which prevents a proper seal from forming
- Moist skin which causes the adhesive on your stoma bag to break down
- Detachment or loosening of the adhesive on your stoma bag. This can be caused by exercising which can reduce the wear time of your stoma bag
- A change in your abdominal shape, due to changes in your weight or bloating
- A change in your stoma’s size and shape, which may happen over time
Leakages can be resolved through improving how you use your stoma bags and by understanding what is causing the leaks. Contact your stoma nurse if you are in doubt about leaks and how to address them.
Sore or itchy skin
It is important to make sure the skin around your stoma stays healthy. If your skin is sore, contact your stoma nurse to review and work out the cause. They can recommend products that will help protect your skin.
Other problems you may encounter include diarrhoea and constipation, blockages, hernia and smells, all of which can be improved and managed. You can find out more about these and some tips to help manage or prevent them here.
There are many ways to minimise or completely eliminate these problems – your stoma nurse will be able to advise you.
Crohn’s & Colitis UK have lots of information on life with a stoma for you to watch, listen to or read.
Explore their stoma resources here, for further support covering your emotions, body image, work and travel, as well as sex and relationships, reproductive health and more.
References
References
- NHS. Ileostomy. www.nhs.uk/conditions/ileostomy. Accessed October 2023.
- NHS. Colostomy. www.nhs.uk/conditions/colostomy. Accessed October 2023.
- CCUK. Living with a stoma. https://crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/surgery-and-complications/living-with-a-stoma. Accessed October 2023.
- Osborne W, et al. Prevalence of leakage and its negative impact on quality of life in people living with a stoma in the UK. British Journal of Nursing. 2022 Sep 8;31(16):S24-38.
- Claessens I, at al. The Ostomy Life Study: the everyday challenges faced by people living with a stoma in a snapshot. Gastrointestinal Nursing. 2015 Jun 2;13(5):18-25.
- Colostomy UK. Stoma problems. https://www.colostomyuk.org/information/stoma-problems. Accessed October 2023.