My bag for life
Private Practice, June 2020

Towards the end of 2015, despite attempts to live a healthy lifestyle, I was increasingly lacking energy and, after tests, was diagnosed with cancer – unspecified at first, but later revealed as bowel cancer. I abruptly faced mortality because my experience with family and friends is that death followed rapidly post diagnosis with cancer.

My first reaction was to check my will and write letters to my family saying I had lived life to the full, had no regrets, and I loved them. When I saw my supervisor, she was unusually directive in pointing out the difficulty of working with an uncertain future. With her support, I worked towards endings with clients and supervisees; a challenge, as endings have never been easy for me, despite experiencing many. Students in a personal development group I was facilitating gave me a memorable, tender, loving goodbye; a glimpse of the therapists they were becoming.

My operation was scheduled as an emergency and I was advised that I might need a stoma: an opening in the abdomen that allows waste to be collected outside the body in a bag or ‘pouch’ (the preferred term). A simpler explanation for children of what a stoma is, is that ‘your bum is on your tum’. I was familiar with these through the experiences of a friend and two relatives, so I wasn’t fazed when I woke after surgery to find I had one. It didn’t help that in the bed opposite was a lady waiting for her stoma to be reversed, as she found it a messy procedure, so disliked having one. I was just relieved to have come through a long operation.

I had confidence in the consultant because he explained everything clearly. I was very weak after surgery and I had to stay in hospital for five weeks, but the consultant came to check on me, even on the days he wasn’t working. His concern, and that of his fellow consultant, along with my own doctor’s support, and the nursing care I received, are a credit to the NHS, which I already valued, having grown up in the years following its launch. The dedication of its workers is now apparent in the current COVID-19 crisis.

I was most frightened when alone, in the middle of the night, wondering if I was going to live. I had never been so dependent, lying with tubes emerging like snakes from my body, unable to get out of bed, and fearful of someone inadvertently moving the alarm button out of reach when the rest of the ward was bedbound too. Staring out of the window, watching the pigeons, was my only glimpse of the outdoors I craved. The first time I was able to access the small hospital garden, where my favourite flowers, daffodils, were growing, was significant in raising my spirits and giving me hope of recovery. The therapeutic effect of the outdoors is so important to me.¹ 

When I was stronger, the stoma care nurse specialist was alongside me, with instructions and advice on issues such as diet, sore skin and removing possible odour. She continued to visit for a few weeks after I was back at home, until I was confident. If necessary, I can still contact her for advice. Bowels are often not discussed, but their functioning is essential to life, and any embarrassment goes when you are aided by a stoma care nurse specialist. Humour is essential. I was advised to have chemotherapy, but I listened to my body in its weakened state and made an informed decision not to proceed, because, statistically, the success of this was limited. My decision was respected. 

What is a stoma?

The stoma dates as far back as 1710. An ileostomy, which is what I have, is a much newer medical breakthrough, and it is only in the last 70 years that stoma surgery has reached maturity.² Surgery may be necessary for colon cancer, ulcerative colitis, Crohn’s disease or diverticulitis, for instance, and age is irrelevant, as babies and children may be fitted with stomas. The term for a wearer is an ‘ostomate’, and in the UK it applies to one in 500 people. Famous ostomates in history include President Dwight Eisenhower, Napoleon Bonaparte and Fred Astaire.³ Napoleon had a goat bladder ostomy bag. A colostomy is an ostomy formed with a part of the large intestine, whereas an ileostomy is where the small bowel (small intestine or ileum) is diverted through an opening in the abdomen.⁴

There is also sometimes the need for a surgical procedure called a urostomy, which creates a stoma (artificial opening) for the urinary system. Developing countries do not always have access to the medical intervention, or supplies of pouches, so ostomates need to improvise, in the same way as many women have to with sanitary protection. I am concerned about the amount of plastic used in the manufacture of pouches and accessories, and have found some manufacturers are already resourcing alternative materials.

Throughout my experience, I have found two charities have been helpful. Macmillan Cancer Support has a wide range of printed information and help available, and Colostomy UK distributes a quarterly magazine, Tidings, and provides information sheets on request, on diet and exercise, for instance, plus a helpline for queries, such as managing travel abroad. 

I named my ileostomy, ‘Suzie’, and then found from reading Tidings magazine that it is common to give your attachment a name. I apologise to anyone with this name, or who has a family member or friend called Suzie, but the name came to me out of the blue. Suzie can be mischievous, gurgle at unexpected times, and, if I’m stressed, prone to misbehave.

Grief, loss and acceptance

After the surgery, I grieved the loss of my fitness and a body that had changed. Fortunately, I have a supportive partner and our relationship has strengthened as a result of my experience. For younger people, it must be difficult to regain confidence in your sexuality. On the other hand, there are confident young people who are not anxious about revealing they are an ostomate by wearing a bikini.

Finding suitable clothing that does not restrict the pouch but hides it was an initial challenge, and I had to accept that elasticated waists are now the norm. I was concerned to regain my fitness and anxious initially about whether I could resume swimming; but adapted swimming costumes are available. For gym exercises, it is advisable to wear a special belt, available on prescription, as there is a risk of developing a hernia after abdominal surgery. Yoga has become my favourite exercise, as it both strengthens my core and gives relaxation.

There are now many foods I cannot digest, including pulses, nuts and seeds – a challenge as I’m vegetarian. It was a process of trial and error in adapting my diet. Eating out can be problematic, but restaurants are now more aware of allergies and intolerances, provide information on request, and are usually willing to adapt recipes. For many ostomates, there will be religious and cultural challenges, for instance, fasting during Ramadan could lead to dehydration, and wearing a stoma can be a challenge for Hindu and Muslim cleansing routines.⁵

I set myself the personal challenge to climb nearby Pendle Hill a year after surgery, and was sponsored by generous friends and family members to raise money for Macmillan Cancer Support and Cancer Research. I felt so alive on reaching the summit, but my achievement was put into perspective seeing a three-year-old attempting the climb too!

Implications for counselling

I’ve always taken the view that an informed counsellor can be congruent in passing on relevant information, and I hope the above account might help some clients to become more confident ostomates. Many years ago, I worked with a client with a stoma who was initially embarrassed when it gurgled, and it was this concern that made me reluctant to return to work. With the help of supervision, especially looking at the trauma of being hospitalised, I prepared to resume work after a year. My retirement had been forced on me before I was ready, and this time around, I wanted to finish work when I decided it was time. EMDR therapy helped me to explore some of my traumatic experiences in hospital.

In private practice, I can work at the time of day when Suzie behaves best. Clients with a stoma may have preferred times to attend therapy, and an accessible toilet is necessary, in case of accidents. Morrisons supermarket is to be praised for being the first to have accessible toilets with a notice saying, ‘Not every disability is visible’. There are times when I have received stares of disapproval using these. Leaks can be a constant concern, especially in the early days of adjustment.

In supervision, I explored whether to tell clients or supervisees about my stoma, and decided not to, as I didn’t want to take attention away from their issues. I would feel more comfortable revealing it to supervisees than clients, but so far, when Suzie has gurgled away, I just explain that I have eaten something that didn’t agree with me. Her gurgles have often not been noticed when we are immersed in sessions. I apologise to anyone reading this who I’m currently working with, or have worked with, that I hide Suzie away from them; it took me a long time to accept she is part of me, and I still struggle to say I have a disability, because it is not apparent.

Four years on

Six-monthly consultations, scans and blood tests are a constant reminder of the cancer. Waiting a few weeks for the results of a scan is the most anxious time. The cancer is most likely to spread in the first three years. I am now four years on, so can start to relax more, but it is always hovering at the back of my consciousness. I have thankfully regained my quality of life.

My personal and professional development has been challenged in a surprising way. I wonder if I would have been so strong had I not trained as a counsellor, with the resourcefulness I gained. I have learned to become more assertive with health professionals, developed calmness, and practised being rather than constantly doing. I value my health and relationships more than possessions. Counsellor friends and my supervisors have been especially helpful throughout, as they have accepted my sometimes-confused feelings. I have grown closer to my husband and family through this experience, and this closeness is currently an asset. The only time I cried in hospital was after a phone conversation with an ex-colleague who told me his guide dog had been put to sleep, a dog I used to walk for him during lunch breaks. I know from clients that pet bereavement can help release buried feelings.

In the spring of 2020, we are living with uncertainty, but this time it is a shared experience of living through a pandemic. Working together with compassion and care, and resilience, is the key to coming through this. Creative solutions are already apparent. Modern technology aids the work of therapists in keeping in contact with clients, but some clients find this too difficult to access, and the fact they are mourning the loss of face-to-face therapy is of concern. Loneliness and anxiety apply to therapists as well as clients. For this reason, I’m keeping in contact without any charge with supervisees who have chosen to self-isolate for health or family reasons. It is my small way of helping, but I am fortunate in having a pension as a back-up. Communication with other therapists is so important, as are journals like this one, and interest groups that provide opportunities for sharing concerns and discussing solutions. Together we are stronger.