Stories

Mind over matter

They say buying a property, getting married and having an operation are the three most important events in our lives. But how many of us actually prepare mentally for these experiences? Roar! editor Christopher Browne looks at how a group of pouchees dealt with their illnesses before, during and after surgery

Just how fit are you? Or is fitness rather low on your list of priorities?

When faced with this question, I have no doubt most of you, like me, instantly think of physical fitness ie activities such as a morning or evening run, a swim or a bike ride, some regular indoor exercises perhaps or a game of tennis or golf.

Few – if any of us – think of mental fitness. 

Yet our mental approach is as important to our well-being as our physical one. Some would say more so. For how can you perform an everyday task without putting your mind to it? The answer is: “You can’t”.

The same applies to illness. How can you cope with a debilitating condition like ulcerative colitis or FAP without trying to control or combat it? Once again the answer is: “You can’t”.

Apart from pain and emotional distress, there’s another less predictable element that can help or hinder us when we are unwell and that is our psychological make-up or to use a more commonly used phrase “mind over matter”. 

But then how many of us can truly say they consciously thought about their mental health and how to apply it when they became ill and faced surgery?

Once again, I think the answer is very few of us (with one honourable exception as you’ll see in the case studies below). There is no doubt that – like a football, rugby or hockey manager or any other team sport for that matter – forging a plan or a strategy can certainly help us to cope and finally recover from operations and serious illness.

I hope this Roar! report will help you find out just how mentally fit or unfit you are. It may even encourage you to write to Roar! and give us your own personal experiences of mental health before, during and after operations.

We’ll start with an initiative by a UK-based hospital which set up a series of mental health workshops for patients with Crohn’s disease and ulcerative colitis.

The courses, which were run by Beaumont Hospital in Dublin, put the patient at the centre of their own care and thus encourage them to think about their lifestyles, thoughts, moods and also the behaviours that make up who they are.

Referred to as self-management, this approach to mental health includes making choices to improve your health such as being more active, eating more healthily and using self-care rituals.

It also helps you cope with important tasks like making sure you take the correct medication for your condition, monitoring the symptoms of your own illness, coping with the emotional aspects of your condition and finally communicating with healthcare professionals.

RLG member Linda Tutty who joined one of the courses says: “There were 10 of us and each of us made weekly action plans, shared our experiences, and helped each other solve problems we faced in creating and carrying out our individual programmes.” 

As Linda points out: “I met wonderful people with a variety of different health conditions, and this made me feel I was not alone which helped me emotionally. It made me aware of my habits and gave me the tools to make positive changes.”

Linda Tutty

The key message of the courses says Linda was “to learn to speak more openly about my condition – it was wonderfully comfortable being with other people with similar conditions.

“The other thing I focused on was to set achievable targets or goals for the week ahead and once you have reached your target there is a great sense of accomplishment, no matter how small your targets may be,” says Linda.

She also learnt the value of relaxation techniques. “We were taught and practised breathing exercises and visualisation techniques. I absolutely recommend that all patients who have any chronic condition avail of a self-management programme if possible.” [See RLG committee member and former chartered physiotherapist Theresa Parr’s breathing and relaxation exercises also on this website here ]

You can also order a copy of the course’s handbook “Self-management of Long-term Health Conditions” by Kate Lorig from www.amazon.co.uk (£2.98).

One person who has certainly had more than her fair share of illness, surgery and operations in the past four years is Red Lion Group member Ruth Cox.

In 2016 Ruth had emergency surgery after a chronic spell of uc and says that when doctors told her about her surgery “I was completely shell-shocked. I can remember feeling numb and as if I was in a dream and this wasn’t real.”

Then after her initial stoma operation Ruth says she was “quite determined to get back to my old self as soon as possible and came out of hospital a week after surgery.”

But when she went back to hospital to have her J-pouch fitted a few months later, she discovered she had breast cancer. After the initial shock she was told that the cancer was at an early stage and after an operation to remove the tumour and four weeks’ radiotherapy once again she started to make plans to have her J-pouch op.

Ruth Cox

Until setback number two. Soon afterwards Ruth was diagnosed with enteropathic arthritis which is linked to uc. Painful and debilitating particularly in her feet and ankles, it meant Ruth had to use a wheelchair and crutches to get around and rely on her family for everyday tasks for six months. Eventually she saw a consultant who prescribed two drugs, Methotrexate and Humira, “and suddenly I was pain-free and walking around like normal again”.

It meant Ruth was soon fit enough to have her closure which went ahead in April 2019. “My personal journey to a J-pouch has had a huge impact on me and has changed my perspective on life a lot. It’s taken me much longer to heal mentally than physically and it can be a slow process,” Ruth says now. 

“I’ve tried mindfulness, spoken to counsellors and had lots of support from family and friends and in the end, time helped a lot. Luckily, I’m quite a resilient person and have always tried to stay positive and not let life events get me down. 

“The way I look at it is that bad things will happen in life and you make the choice in how you deal with it. You can spend the rest of your life feeling sorry for yourself or you can make the best of what you’ve got now and look for the good things in life. 

“I’m pretty sure that my experiences over the last few years have changed me as a person and I know that I appreciate the little things in life more now. I live for today and try to regularly tell people that I love them and appreciate them. Until you experience some adversity in life, you never know how strong you can be,” says Ruth.

Michelle Martin

RLG committee member Michelle Martin devised her own personal recovery plan before, during and after her pouch surgery at Broomfield Hospital, Chelmsford, Essex, nearly two years ago.

“Within just a few weeks, I had gone from having an upset stomach to having my colon removed and living with a stoma, which I found mentally and physically challenging. My family and friends didn’t think I would cope and, initially, I wasn’t too sure myself. I couldn’t stand to look at my stoma or change the bag. I just wanted to be left alone,” says the 42-year-old. 

“However, as the days and weeks went by, I started to feel better,” says Michelle. “I had spent most of my life feeling tired, having headaches, so feeling well was a novelty. I knew I was going to need more operations, and I also knew this would have a mental and physical impact on me.”

She decided exercise was the key to her recovery and would help her prepare for her next operation. “I knew being fit and healthy would help me recover but it was also essential for my mental well-being,” she says.

Eight weeks after being discharged from hospital she started going to the gym. “I took it easy to start with, focusing mainly on hydrotherapy. It did mean putting on a swimming costume, but as luck would have it, I had lost so much weight, my swimming costume could easily accommodate my bag!”

Michelle also took up yoga to help her relax. “Getting fit gave me something to focus on and helped me feel in control. I was fighting back and I was going to be fitter and healthier than I had been in a long time. I had a firm belief that I was the key to my rehabilitation, the surgeons saved my life, my consultant was putting me back together, but I had a responsibility to take this opportunity and do my part in improving the outcomes.

Michelle says keeping fit “was one of the ways I looked after my mental health and I feel for me personally was the most beneficial to my recovery.” 

The other factor, she says, was making sure she continued to do what she loved, especially going on holiday. “So after each operation I planned a trip away, something positive to look forward to.” 

However post-surgery she faced a statutory 10-week wait for travel cover from her insurer. “I made my mind up that after that 10 weeks I would be on a flight, be it a city break or chilling out on a beach. Obviously the beach holiday won through and that helped me relax, feel normal, and recover!” she says.

Michelle’s positivity is palpable. “I have been exceptionally lucky so far, I am really happy with my pouch, and my quality of life has improved. I think my positive outcomes are due to having the right people around me. Knowing I had a brilliant surgeon, stoma nurses that looked after me both physically and emotionally, a supportive partner and family, great friends and a good employer who allowed me time to recover.

“That combined with keeping fit and having a clear goal, enabled me to get through a very difficult period in my life,” she says.

Another important event Michelle says helped her recovery was a conversation with a counsellor she knew. “We were talking about how people react to traumas and what influences our reactions. Interestingly he said the actual trauma is just one aspect of how we are feeling when we go through a life-changing experience. We are also heavily influenced by our past life, our relationships, how we feel about ourselves both emotionally and physically and the circumstances which led us to this point in our lives,” she says. 

As Michelle points out: “What I took from this conversation was that we focus so much on the surgery and our illness that we forget to take a holistic view of our life. There is a need to look beyond our health issues and focus on what else shapes us and how we can manage these to improve both our physical and mental well-being.“

Art as therapy

One way to help your recovery from an illness or a difficult episode is to take up an interest. The textbook term is “occupational therapy”. Just ask RLG member Christine Lawton who turned to painting to help her after her pouch surgery. “Although I am not a psychologist, I know it has been proven that painting and drawing are extremely good mental therapy. I am not surprised because when you are drawing or painting, you are looking at a subject with different eyes and you become completely engrossed away from the everyday hassles of life.

“It is invigorating to express mood and let out our pent-up feelings. Colours can also have a beneficial effect on your moods and morale and brighten up your day. It doesn’t matter what the result is: it is the journey that counts,” she says.

“I’ve found painting and art a wonderful way to relax during a difficult period and it has been a real boon and has also helped me to pass the time quicker during the lockdown.”

Two of Christine Lawton’s recent animal portraits: a cockapoo and her local vicar’s cat 

A surgeon’s view

Finally, who better to have the last word on mental health than the lead colorectal surgeon at St Mark’s and the patron of the Red Lion Group Janindra Warusitavarne. 

“When surgery is needed for ulcerative colitis I have noticed that different people have different reactions. Much of the decision to proceed to surgery depends on the quality of life of the individual and how the disease affects that quality of life,’ Janindra told Roar!.

“For an individual where there is a risk of cancer and surgery is proposed but the disease is well-controlled, trading off good function for potentially worse bowel function can be a difficult decision. On some occasions, where the disease becomes acutely severe, the decision to have surgery or not may be taken away from the individual when emergency surgery is needed. In most situations the surgery is planned for when there are no further medical options,” says the consultant surgeon. 

“The most important point to consider when making the decision to have surgery in ulcerative colitis is that removal of the colon or rectum removes the disease as well but whether an individual chooses a J-pouch or a permanent ileostomy depends on the perceived quality of life gain. In this regard, the mental health of an individual is vitally important. 

“Often when surgery is considered, an individual can be tired, in pain and feeling generally ‘unwell’. Post-operatively when the individual feels better as the disease is not causing sickness, decision-making can be a lot clearer. It is at this time the decisions regarding stoma and J-pouch should be made. 

“At this stage one can decide if the stoma is something they can live with or if they wish to proceed to J-pouch surgery. Making a decision when one is relatively well means that a more objective assessment can be made. When the stress of the disease and its effects on mental health have been removed more relevant decisions can be made. 

One way to aid this vital decision is pre-operative counselling, says Janindra. “Post-operatively, the success or otherwise of the J-pouch varies according to the mindset of an individual. This is why pre-operative counselling is so important as it helps to understand the nature and consequences of surgery. When this aspect is well understood an individual having a J-pouch is better able to understand the inner working of the pouch and this can help with overall quality of life and well-being. 

“When a pouch does not function appropriately, there can be many reasons for this and having the appropriate team with the appropriate support is essential. When the hope of a quality of life improvement is resting on surgery then any change in this expectation has to be managed appropriately.

“It is under these circumstances that managing the mental health of an individual is just as important as dealing with the clinical issues. This requires understanding on the part of the clinical team and reassurance to the individual. 

“The J-pouch is for quality of life and mental well-being is vital for quality of life,” adds Janindra.

Janindra Warusitavarne

This article first appeared in ISSUE 60: Christmas 2020 edition of ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed Copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

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GaryB