The following article has been published by a patient of the practice.
There are roughly 105,000 (1 in 625) people in the UK who wear a stoma bag of some type as a result of health issues including Crohn’s disease, bowel cancer, diverticular disease, infection of the abdomen, a burst abscess, injury to the colon or rectum through pregnancy or accident, intestinal obstruction, Hirschsprung’s disease in babies and young children, vaginal cancer, cervical cancer and bowel incontinence.
There are probably a few more instances where one would need to wear a stoma bag but life goes on and, hey, your alive and can continue your life happily with the bag. It is possible to maintain a normal lifestyle with a stoma bag and wearers can continue to take part in sports or go to the gym. It is also possible to have a normal sex life and start a family.
For a long time having a stoma bag has been some kind of stigma, something to be hidden from other people, wearers feels ashamed and will not talk about their condition through shame. Other people think the bag can be seen through their clothes and many are still driven by a misunderstanding that they smell and that other people do not want to be around them. This misunderstanding prohibits them from socialising with others or going into social places for entertainment. This self-exclusion from normal activities pushes them into isolation where they can become reclusive and ultimately depressed.
Life with a stoma need not and should not change your lifestyle. You have survived your illness and now have every reason to continue to socialise and lead your life to the full. You do not smell! You look after your personal hygiene as well as you did prior to your operation and you still look good in your clothing as the bag can’t be seen.
By and large you can eat what you like when you wear a stoma bag but as with everything in life use moderation and you will learn what is good for you and what isn’t. Watch the drink! Too moist a consistency can and does mean loose poo but then it did before the bag.
I’m no saying it’s all plain sailing but as with everything in life – you learn!
You will soon learn what type of bag works best for you, what to use if the area becomes inflamed around the opening in your skin and around the tip of your bowel. You will lean how to clean the area and which healing powders to use when problems arise around bleeding skin, chapped skin, weeping skin or continually wet skin. You will know how to help slippage of poo in the bag to help prevent “pancaking” which can and does happen on occasion with a colostomy bag. You will also learn to expect a small discharge or “bumble” from your bottom. This is nothing to worry about as your remaining bowel will continue to make mucus. You will learn how to put in your prescription order to your provider. You will learn to solve your own problems without worrying that things are going wrong.
There is support that is widely available from various stoma services.
Doncaster Royal Infirmary have a help service every Wednesday and appointments can be made by contacting them directly on 01302 644365.
More information is readily available through Colostomy UK on 0800 384257 or [email protected] who have information brochures about almost everything you need to know about your stoma. You can join them free of charge and you will receive the Tiding Magazine every 3 months which has news from other “Ostomates” members and nurses. It also has information about new products that have been developed. Colostomy UK have a website, a Facebook page, a Twitter page and a 24-hour helpline service. They can also offer travel advice i.e. what you can and can’t take with you on a flight, what to do when abroad and how to get hold of equipment in an emergency (change of diet and water can sometimes lead to an underestimation of how many bags will be needed). They can also give advice on travel insures and how to ask your GP for a certificate.
The Bowel and Bladder Charity have good advice on diet and other matters.
There is a company called Dansac Ltd who supply educational book. They can provide a “disabled” toilet key as well as an ” Urgency to use the toilet” card, which most commercial retailers recognise as a need to use their own private toilet facilities urgently.
I hope that you have found this information helpful and that it has helped you through the “mystique” of the bag.
Barbara Bell
Patient at The Burns Practice & Member of the Patient Participation Group