Do you know what a stoma is? LAUREN HOCKNEY didn’t either. But here Ipswich Hospital’s stoma care nurse specialists talk about their important role in helping those who have them and how they are working to quash common misconceptions
If there is a medical procedure which can potentially change and save your life, would you talk about it, embrace it and accept it? You would think so, but when that procedure is creating a stoma it is not always met positively.
Why? Because notoriously as a nation we don’t talk about things like our bowel movements and to discuss, putting it bluntly, pooing into a bag is mortifying for some. But it’s not a forever solution for everyone, a stoma helps the body to recover after major surgery or trauma and then everything, in most cases, goes back to normal and you return to doing your business on the toilet.
Some people do have to live with a stoma – an artificial opening in the tummy which diverts the flow of faeces or urine into a pouch which sits outside the body – permanently, but, and this is the vital point, it does not stop you doing anything or from living your life to the full.
That is the key message Ipswich Hospital’s stoma care nurse specialists, Sharon Stopher and Sally Power, work to get across to their patients and want to promote to those they haven’t met yet, but who may need a stoma in future.
They have 1,000 patients on their books – from neonatal babies to the elderly – that’s 1,000 people in east Suffolk who are living with a stoma, but you wouldn’t know it because they are out doing the same things as the rest of us, shopping, swimming, going on holidays, running marathons even – they can pretty much do it all.
Sharon, 49, said: “Practically, you can teach anyone what to do and how to change the bag, but our biggest role is in supporting our patients psychologically and counselling them.
“It’s a very taboo subject and it is a big thing, but people don’t know what a stoma is. They will all say at first ‘I’m not having a bag’.”
Sally, 51, added: “It’s their biggest fear,”
“There are big issues with body image and the stigma around it, but it doesn’t have to change anything, it’s just about giving them the support they need.”
In some cases the pair, who have worked together at the hospital since 1983, said when patients are diagnosed with cancer, it is not necessarily “the big C” that concerns them.
“They will say ‘it’s not the cancer that worries me, it’s the thought of having a bag’,” Sally said.
“Some people have even said they would rather die than have one, but most people haven’t heard of a stoma and so they don’t know what we do.
“Everyone’s heard of a colostomy, but not an ileostomy or urostomy, and they’ve usually heard about it in a negative way and it’s our challenge then to turn that negative around.
“There’s a reason it’s been done to give them back their quality of life so you have to look at it as a positive thing.”
Part of Sharon and Sally’s job is to tackle the taboo, enable people to see they are not the only ones with a stoma and demonstrate how it doesn’t have to dramatically change their routines, it’s just a case of adapting to something new.
They will pass on tips about travelling, diet, what to consider when playing sport or exercising and offer extensive support to pregnant women or those who want to have a baby.
Sally said: “We’re here to tell them ‘you have to go on that holiday or go to that wedding’. It doesn’t have to change anything, it’s just about giving them the support they need.”
Sharon continued: “You have to adapt to a few things, but our patients are not just left. We are still here years later to answer different questions, pass on holiday tips and support those who want to start a family as they are moving forward with their lives.
“We get to know them and their families. We build up such a lovely relationship.”
Speaking about the life-changing effects they witness, Sharon said: ”People blossom like butterflies.
“For years they’ve had these horrible symptoms, some are housebound because they are so embarrassed by it all and this helps them get their life back.”
Patients can have a stoma for any length of time, it could be three months, a year or a lifetime. It depends on the reason why they are having them. However, in some cases those who have their stomas reversed can be the harder ones to support. Because they know it is only for a short time, some “take themselves out of society almost,” Sally said.
A further operation is needed to reverse a stoma.
It is only carried out when you’re in good health and fully recovered from the effects of the stoma formation - this is at least 12 weeks or more after the initial surgery.
However, it could be delayed if further treatment, such as chemotherapy, is needed or you haven’t recovered from the original operation.
During the time of having a stoma, the care provided by Sharon and Sally includes not only the physical, but the psychological, spiritual, cultural, sexual and social needs of the patient.
Sharon said: “It’s such a personal and private thing.
“There are intimate issues so it takes a long time sometimes for people to talk and say what they want to say or ask.”
Sally said: “Both of us would say we love our job. We get a great deal of job satisfaction by building relationships with patients and we feel lucky we’re making a difference – not many people have that at work.
“In some areas of nursing you just see a small part of a patient’s pathway, we are privileged to follow them right through and that they trust us to talk about these things.”
For more information or to speak to a member of the team, call 01473 703301 or email stoma.care@ipswichhospital.nhs.uk
CASE STUDY - Terry Hunt had a stoma for 16 months after surgery for bowel cancer. He recalls the experience – and pays tribute to the fantastic stoma nurses
“Yes, it’s a nasty little thing – but it saved your life.’’ I will always remember the no-nonsense words of one medic, as I was recovering from a five-hour bowel operation.
He was talking about my new “friend,’’ a stoma, which was necessary because part of my bowel had been removed, and I was left with what is effectively a by-pass, to allow everything to heal.
Mine was an ileostomy, which means the diversion happens at a different point to a colostomy. The difference to the patient is marginal – in both cases, you have a little hole in your tummy through which your poo comes out, into a bag. I can’t put it any blunter than that!
It does, not surprisingly, take a bit of getting used to. Physically, you have to come to terms with changing the bag every other day, making sure it’s safely secured to your skin. Failing to do that can have some very embarrassing consequences, as I discovered a few times early on.
You have to be aware of how full your bag is, and make sure you empty it at regular intervals. I soon got used to that, and it quickly became as routine as going to the loo “normally.”
I guess it was psychologically that I found it more difficult. There is – wrongly – something of a stigma about having “a bag.” When I was younger, cruel jokes would fly around the classroom about people with “bags.”
At first, I have to admit I felt “different.” I was sure people were looking at me oddly, thinking “Oh, that poor chap – he’s got a bag.” Absolute nonsense, of course.
But as the weeks went by, my confidence grew. As I became physically stronger after my operation, I began to realise that life could go on as normal. My stoma didn’t stop me doing anything.
But the really big breakthough came when I started to regard my bag as being a normal part of my body. It’s difficult to explain what I mean, but somehow I came to think of the bag as being inside my body. I know that sounds bonkers, but it worked for me!
I had my stoma for 16 months, much longer than most people after bowel surgery. I healed very slowly, probably because I have Type One diabetes.
Through all that time – and especially early on – Sally and Sharon, the stoma nurses at Ipswich Hospital, were my absolute saviours. In those early post-op days, they got me used to the nuts and bolts of changing the bag – and keeping it attached!
Then, through the 16 months, they were always there to answer my many panicky phone calls when I thought something had gone terribly wrong. I’ll spare you the details. They were always a kind, reassuring voice at the other end of the phone line – and a little bit cheeky with it!
Until my experience, I had no idea there were such things as stoma nurses. It’s certainly not the most glamorous job in the NHS – dealing with people who have poo coming through little holes in their tummies. But thank goodness for people like Sally and Sharon, who do the job brilliantly, always with a smile on their faces.
They certainly helped me through some tough times – and made me laugh – and I know they do the same for many, many other folk as well. Thank you, ladies!
WHAT IS A STOMA?
It is an artificial opening on the abdomen to divert the flow of faeces or urine into an external pouch, which is placed outside of the body. It can be a temporary or permanent procedure.
There are three types of stoma – ileostomy, colostomy and urostomy. All of these involve the patient wearing a pouch attached to their skin on the abdomen.
Although people associate a stoma, particularly colostomy bags, with bowel cancer, stomas are created to treat a wide spectrum of diseases and incontinence, including:
Bladder and gynae cancer.
Inflammatory bowel disease such as ulcerative colitis and Crohns.
Diverticular disease where small bulges or pockets develop in the lining of the intestine, which can become inflamed or infected.
Trauma, such as injuries caused by a stabbing, shooting, crushing and road accidents.
Stoma nurses also support patients with incurable diseases, where only palliation is possible. For example, suffers of multiple sclerosis (MS) or severe incontinence
STOMA STATS
In 2015/16 at Ipswich Hospital:
176 stomas were formed.
There have been 50 reversals.
236 established stoma patients were admitted and seen in hospital.
Nationally it is reported there are about 102,000 people in the UK with a stoma, about 21,000 new stomas are formed every year and there are over 600 stoma nurses in the UK.
ALL IN A DAY’S WORK
A typical day sees Sharon and Sally seeing patients on the wards in the morning, and in the afternoon they are in clinic and carrying out home visits and admin, but if an emergency comes in everything can change.
First thing there will be a handover and discussion about in-patients and those arriving for surgery, then they will review those who have had a stoma formed recently, teach patients on the wards, as well as teach and mentor newly qualified staff.
Sally added: “It can be different every day, you continually reprioritise and rearrange things as you go along. You have to be quite flexible.”
In clinics they will often join consultants for pre-surgery information sessions and in some cases when a diagnosis is delivered they can be on hand to pass on vital information and support ahead of surgery.
People can also self-refer to see the stoma nursing team. If you have a problem or have concerns about an existing stoma, you don’t have to go through your doctor.
THE TEAM AT IPSWICH HOSPITAL
5 colorectal surgeons
2 stoma nurse specialists – Sharon Stopher and Sally Power
1 stoma care staff nurse – Laura Pyne
2 community stoma nurses
1 admin
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