Rather than dealing with stoma issues alone, one patient felt it would be better to support others. Health reporter PRIYA MISTRY talks to a woman who has started her own support group and wants people to know about it.
After feeling like it was a taboo subject, Caroline Hill found comfort and support in talking to others about her condition.
And it’s this sharing of information and advice that has prompted her to start a stoma support group for patients in the Portsmouth area.
A stoma is an opening created externally to allow a person to pass water, gas and urine matter when they are unable to do so naturally.
A stoma can be put in place either long or short-term and for a range of conditions.
Caroline, 40, of Ascot Close, in Titchfield Common, has a stoma after being diagnosed with Crohn’s disease in April 2013.
This is a long-term condition that causes inflammation of the lining of the digestive system.
But the hairdresser owner was initially diagnosed as ulcerative colitis – where the colon and rectum become inflamed.
She says: ‘After years of medication including steroids and immune suppressants to keep the symptoms under control symptoms got worse and I had further tests that confirmed severe Crohn’s disease in my colon.
‘My symptoms included severe abdominal pain, urgency to use the toilet, high temperatures, bloody stools, severe fatigue and nausea.
‘Seriously ill with Crohn’s disease I was then immediately put on to medicine infusions every four to six weeks.
‘The first three infusions improved my symptoms by far but by August 2013 my symptoms came back with a vengeance and three months later I was admitted to Queen Alexandra Hospital, and had emergency surgery.’
It resulted in Caroline staying in hospital for three weeks.
She adds: ‘It was a very worrying time for me and my family.
‘There were a few complications after surgery but two weeks after operation to have my ileostomy I came home.’
An ileostomy is where the small intestine is diverted through an opening in the abdomen – this is known as a stoma.
‘I was very tired, weepy and scared and anxious when I got home,’ she adds.
‘I had been shown in hospital how to change my bag by Joel Fraser, a stoma nurse at QA, but I still found it very difficult, especially as my abdomen was very distended and the skin around the stoma was getting very sore but I was determined to get through it.
‘The first few weeks were, I have to say, awful.
‘I kept getting leaks so my skin was getting red raw but with about half a dozen trips to QA to see the stoma team I found a bag that was fantastic.’
Determined not to let this get her down, Caroline started researching the available options.
She says: ‘I was not going to put up with leaks.
‘I went online and found lots of stoma companies that were willing to send samples so I researched just about every bag on the market.
‘I was always checking my bag to begin with, constantly checking I wasn’t leaking. Using other people’s toilets was always a worry too so I’d make sure I went home to empty the bag every few hours.
‘I change my bag in the morning every day as that’s the time my stoma is least active so bag changes are a lot easier and quicker.
‘I wanted to start swimming again too and was a little worried but I realised there was no need to worry.
‘You can’t see a stoma bag under my swimming costume.
‘The bags are perfectly fine in water – I just put a little sticky disc over the filter on the bag and went swimming.
‘Nobody but me knew I had an ileostomy and swimming really is just the same as before.
‘You just need to make sure the bag is empty so it’s flat when you go in. Changing the bag each day started off as a big ordeal. Now it takes me two minutes and I don’t even think about it.’
Despite finding support online, Caroline realised there was not much given in the way of face-to-face help.
‘When I first had my stoma I didn’t realise there were so many people who had a stoma and I felt very lonely,’ she says.
‘You don’t feel you can discuss the problems you are having with many people as it’s such a taboo subject.
‘When Joel called and asked me if I would see another patient with ulcerative colitis who is thinking of having the operation I said yes.
‘I was able to go round to see her and answer her questions as to what it is like to live with a stoma.
‘We ask each other questions and have supported each other and that’s when we realised we wanted to begin a support group so everyone can develop friendships with people who really do know what they are going through.
‘By having the support from people who have gone through the same or similar situation I believe really helps with their mental wellbeing.
‘By educating ourselves and with all the resources that are available to us, living with a stoma doesn’t have to be that hard. I for one am so thankful that I am alive and living a normal life.’
The first support group meeting takes place on Monday from 6.30pm, and will then be held on the last Monday of each month except bank holidays, at the Kingfisher Caravan Park, in Brownsdown Road, Stokes Bay, Gosport.
Call Caroline on 07756 819291, or email firstname.lastname@example.org
Questions and answers on stomas
A specialist nurse from Queen Alexandra Hospital has answered stoma questions.
Q. What is a stoma?
A. A stoma is a surgically formed opening on the abdomen to enable a person to pass effluent or urine, A stoma bag is then worn to aid continence.
Q. How many patients at QA have a stoma?
A. We see around 250 to 350 patients a year with a stoma.
Q. What conditions can cause a person to have a stoma and is it something you have for life?
A. There are a range of conditions that can cause a person to have a stoma. Depending on your diagnosis will determine whether it is temporary or whether it id permanent – it really depends on the disease.
Common conditions include bowel cancer, inflammatory bowel disease, diverticula disease, trauma or perforation of the bowel or obstructions.
Q. What do you think of the support group?
A. I am very supportive of support groups with an agenda and a clear aim. As long as the organisers have had the correct training then all support groups have a benefit.