Vital talk for people who are suffering with IBD
Victoria Spillane, of Cork, Chief Operations Officer, Crohn’s and Colitis Ireland
There are about 50,000 people living with inflammatory bowel disease (IBD) in Ireland - Crohn’s and ulcerative colitis are the most common.
To mark World Stoma Day this Saturday, October 4, the charity Crohn’s and Colitis Ireland will host an online event, Breaking Barriers: Real Talk On Living With A Stoma.
The talk will run from 12pm to 1pm, featuring contributions from health psychologist, Aideen Stack, who will offer tips and advice on maintaining emotional wellbeing, and Eileen Lim Joon, a clinical nurse specialist with Coloplast who will focus on the practicalities of living with a stoma. A guide has also bene produced offering advice to people.
Terri Brannigan, who was diagnosed with Crohn’s disease at the age of 15, will talk about her experience of living with a stoma.
Registration is now open at www.crohnscolitis.ie/members/events
The term IBD refers to a number of chronic conditions, with Crohn’s disease and ulcerative colitis the most common. With both, the immune system doesn’t work properly and the body starts attacking itself, causing ulcers, swelling and inflammation of the gut. In Crohn’s, inflammation can occur anywhere along the digestive tract, while, in ulcerative colitis, it affects the large bowel or colon.
A significant number of people with IBD will require a stoma, at least temporarily after surgery - a physical opening from the body to allow waste to exit, which is created following a surgical procedure known as an ostomy.
Most common symptoms of IBD are urgent and frequent bowel motions, sometimes with blood, diarrhoea, nausea, vomiting, reduced appetite, weight loss, stomach cramps, eye inflammation, and painful joints and skin rashes.
While IBD is a life-long unpredictable condition, and there is currently no cure, early diagnosis and treatment can help to stabilise the disease and provide for a normal quality of life.
For Aideen Stack, living with a stoma is not just a physical journey, it’s an emotional one.
“When it comes to a stoma, there are the visible changes to a person’s body, but we cannot underestimate the psychological and mental impact too.
“From worries about how to manage a stoma bag, to changes in body image, to intimacy concerns, we wonder what the future will look like. Acknowledging and taking care of one’s mental health when living with a stoma is so important for wellbeing.
“This seminar promises a safe space for open and honest conversations about what it means to have a stoma, and there’ll be lots of tips and advice to support people’s mental health through this life change.”
Cork native Victoria Spillane, Chief Operations Officer with Crohn’s and Colitis Ireland, says World Stoma Day is an opportunity to show that people with a stoma can live life to the maximum:
“Life is fragile. So, it’s really important for all of us to be able to live it to the full,” she said.
“Yes, having a stoma means a new normal, but it can be an even better normal than before. Whether it’s at the pool in a two-piece swimsuit, or sporting a crop top at the gym, or wearing a sleek dress at a wedding, we should refuse to let how others may see us define our journey. World Stoma Day is a chance for us to amplify real voices and real stories and show the world who we are. Our webinar, Breaking Barriers, is about challenging stigma, and showing that life with a stoma can be full, fearless, and unapologetically authentic.”
Top 7 Things to Know About Stomas…
The word ‘stoma’ comes from the Greek word, ‘opening’, and is where surgery takes place to create an opening from the gastrointestinal or urinary tracts to allow waste to exit the body into an ostomy bag. It’s often recommended to reduce symptoms when inflammation or damage to the bowel is severe, and can be life-saving, significantly improve quality of life, and restore independence.
A stoma looks like a little piece of the bowel that protrudes from the abdomen that is pink/red in colour, and is warm and moist, similar to the lining inside the mouth. It can be temporary or permanent.
It can be located at the end of the small intestine or the ileum, known as an ileostomy, or from the large intestine or colon, known as a colostomy, or from the urinary tract, known as a urostomy.
A person will be advised on how to look after their stoma and ensure proper skin care by specialist nurses in the hospital they are attending. They will be provided with equipment, such as adhesive paste, adhesive remover spray, a seal, and an ostomy bag. An ileostomy bag will need to be emptied four to seven times a day, while a colostomy bag will need to be emptied one to three times a day. These are designed to be secure, discreet and odour-proof.
With an ileostomy, as the large intestine is no longer being used, digestion time is quicker and so, to prevent blockages, a person may need to lean towards meals that slow the gut down and avoid high-fibre foods such as nuts, seeds, fruit and vegetable skins, and raw vegetables. For a person with a colostomy, it would be important to avoid constipation and exclude foods that may cause bloating such as eggs, beans, certain vegetables or fruit.
For people with a stoma, it’s a good idea to choose and prepare good food, set out a regular time to eat and not to rush food, but to chew it well. Hydration is important but it’s advisable not to eat and drink large volumes at the same time, and to avoid over-consumption of caffeine and alcohol.
Life can resume as before with a stoma, with some adjustments. A person should be able to get back to school, college or work, and participate in sport, including swimming, running and yoga, as normal. It’s a good idea to start slowly and use support garments if needed. People can continue to go on holidays, taking care not to get dehydrated, sunburned, or constipated. Eating unusual foods can cause stomach upset or diarrhoea, so packing some familiar food to start with is advisable.
- For questions on living with a stoma, or to access Crohn’s and Colitis Ireland’s Stoma Support Group, call the Support Line on 01 531 2983 (Mon/Wed/Fri, 9.30am to 12.30pm) or email info@crohnscolitis.ie
- For more information on the webinar, guide, and series of educational videos, visit www.crohnscolitis.ie
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