Health: Stoma support around Ireland

Mark Sheehy, a retired horticulturalist living in Tullamore, Co Offaly, is a great advocate for people with stomas. Having a stoma himself doesn’t stop him living life to the full, says the man who has a full diary most days, including involvement with the Tullamore Show horticulture committee. If there’s one thing that he has learned since having one fitted – following colo-rectal cancer surgery in 2014 – it’s that one’s quality of life doesn’t end.

“That’s the message that needs to get out there: that there is life after stoma. Life isn’t plain sailing for everyone, yes, but you don’t have to be left on your own to cope. There is support. As many as 20,000 to 30,000 Irish people may be living with stoma.

“Two thousand are fitted a year, we know that, so multiply that over 10 years and that’s 20,000. Many people have stomas for longer than that, some even up to 40 years, so the figure could be 30,000. Fifty percent may have reversals but all of these aren’t successful unfortunately.”

Three types

There are three types of stoma: ileostomy, colostomy and urostomy. “That means people have either had a diversion in either their lower or upper intestine (ileostomy and colostomy) or for their bladder. Some people have two – for bowel and bladder,” he explains.

Ileostomy is probably the biggest group, he says, but people of all ages, even children, can have a stoma or pouch after surgery. “Surgery can be as a result of cancers – bowel, colon and colorectal, diverticulitis, ulcerative colitis and Crohn’s disease – or following a trauma (injury) to the abdomen,” says Mark.

He describes a stoma as being like an enlarged nipple that exudes bodily waste. “It is red and looks like a little cherry.” Bodily waste is then collected in a pouch that is sealed to the skin over the stoma by way of an adhesive patch.

Embarrassment

In his voluntary work with IAIreland*, the Ileostomy and Internal Pouch support group, he has come across people who have isolated themselves because of embarrassment about having a stoma.

“Some people won’t go out because they have a stoma. They might be worrying that if they go to the toilet they’ll make a terrible smell, for example. I say a baby’s diaper can be more pungent than a stoma. But we do have things like drops that you can squirt into the toilet that give a pleasant lemony smell.

“These are the psychological things that people have in their mind that hold them back, and they won’t talk to family or friends about them. We have to break those myths. Just because your bodily functions have altered doesn’t mean you have to become a hermit,” Mark reassures.

IA Ireland was started back in 1954 by progressive GP Dr Leahy, who linked the Irish association up with the UK organisation for ileostomy and internal pouch. “There are plans to have 18 IA support groups round the country by the end of 2018,” Mark says. “The latest are in Gorey and Killarney. The plan is that no one is more than 50km from a meeting.”

Results in India show cancer

Mark’s cancer story began with polyps in the 1990s. “I didn’t even relate them to cancer,” he says. “I was in India for 10 years working on environmental projects and I’d been told before I went that everything was fine. I had check-ups there every year, but in 2014 I had a ferocious pain in my groin and traces of blood in my stool. I had an endoscopy the day I saw my GP there and a CT scan the same day, after then a PET scan, blood tests, biopsy and a diagnosis of colo-rectal cancer very rapidly – within four days.”

Following that rapid diagnosis, Mark decided to return home to Ireland to live and have his surgery, but getting a similar diagnosis in a Dublin hospital was not so straightforward.

“The hospital had to do their own tests, which was understandable, but twice their endoscopies showed no sign of cancer. On the third test it was confirmed. I’m always conscious that if I hadn’t had the results in India I might not be around today.”

Experience with stoma

Mark had both chemotherapy and radiotherapy prior to and after surgery in September 2014, after which the pouch to collect waste was fitted.

He was told prior to surgery that a stoma would be necessary. “At least I was prepared. Some people I know have woken up with stomas not knowing they were going to have one.

“That can be difficult to cope with, but when that person talks to people who have stomas and hears that they are out playing golf and getting on with life it does help. Things don’t just end after stoma. People with them have all sorts of jobs and hobbies.”

He reiterates that life doesn’t stop. “You’ve come to a crossroads, yes, and you’ve to make a little readjustment. It could take you a couple of weeks for it to settle in, but after six months you should be almost able to change your pouch in your sleep.”

Problems

Nothing is entirely simple, of course, and there are a few common problems that those with stoma can experience sometimes. The first one is excoriation of the skin around the stoma. “This can happen where there is leakage or discharge, which can be quite acidic and can scorch and burn your skin,” Mark explains.

Leakage can also cause problems. “We have to be like the boy scouts,” Mark says. “You have to carry a bag with a spare pouch in it and all your little bits and pieces for cleaning yourself and changing. If a burst happens, you can’t panic, you have to cope and remember this kind of thing doesn’t happen every day.”

The pouch could burst or leak, he says, because the person has been overactive or because it wasn’t put on properly. “When putting a new pouch on we have a little spray which dissolves the old adhesive. The surface area must be totally clean and dry before putting on the new one. Sometimes people are putting it on not fully dried. Then there isn’t proper adhesion,so that can contribute to leakage taking place.”

Support

The meetings aren’t just about talking about stomas – they include helpful talks about nutrition, exercise and intimacy issues, he says. “Sexuality is a big issue. It doesn’t have to finish just because you have a stoma. This is a big issue that we have to bring out into the open,” he stresses.

Social activities include quiz nights and day trips. “This gets people out of themselves, rather than sitting at home brooding,” according to Mark.

*Note: IA Ireland will soon be renamed The Stoma Association of Ireland following a decision by members.

Quality of life questionnaire

A questionnaire about quality of life issues will be carried out next spring, run by IA Ireland in conjunction with United Drugs Ltd. The survey will provide information about people with a stoma and their needs.

Issues for those with stoma

For more information see www.irelandiasupport.org or email ireland@iasupport.org or for FaceBook see iairelandileostomyandinternalpouchsupportgroup