UC Archives - J Pouch support charity

Has ulcerative colitis or related surgery impacted your ability…

Has Ulcerative Colitis or related surgery impacted your ability to work?

We have been asked to advertise a research project to be conducted by Mr Orestis Argyriou, a research fellow at St. Mark’s Hospital Academic Institute. His research is focusing on improving patient counselling around surgery for Ulcerative Colitis (UC), and more specifically into improving the delivery of information in relation to work-related experiences and Quality of Life (QoL), which he feels seems to be quite neglected.

The first step is to conduct qualitative interviews, to hear from patients about their lived experiences and the research team is interested to hear from people that have had different types of surgery (e.g. ileostomy only, J pouch or ileorectal anastomosis), as well as from people coming from different professions in terms of the physical requirements and components of their jobs.

Further information below. If you are interested in taking part please register your interest by contacting the research team by email at lnwh-tr.workuc@nhs.net

Mr Orestis Argyriou, MSc, MRCS is a Research Fellow in IBD & Colorectal Surgery,
St Mark’s National Bowel Hospital & Academic Institute

If you are interested in taking part please register your interest by contacting the research team by email at lnwh-tr.workuc@nhs.net

News

Would you like to help with research to improve…

Would you like to help with research to improve patient care?

If you suffer with Crohns disease or Ulcerative Colitis you may be eligible to take part in this survey being conducted by a St. Mark’s Hospital Research Fellow. See below for further details and follow the link or scan the QR code if you feel you are eligible and would like to complete the questionnaire.

Stories

The remarkable story of the world’s first pouch patient

Roar! editor Christopher Browne speaks to Haresh Ruparelia, son of the original ileo-anal pouchee

Remember the turbulent 1970s? Some of us do and RLG’s new treasurer Haresh Ruparelia certainly does even though he was a mere toddler at the time. He also recalls the events of that decade for a completely different reason. In 1972, Haresh, his parents and his two young siblings were forced to leave their home, jobs and schools in the African republic of Uganda during the dictatorship of Idi Amin. “After considering Fiji at one point, my father Pravinchandra (known as Pravin) moved the family to the UK. He managed to find work quite quickly and chose to settle in Ilford, East London,” said Haresh.

“a desperately difficult
period for my parents”

Haresh Ruparelia

Admitted to hospital

Then fate struck the family a second time when in 1974 Haresh’s 35-year-old father was diagnosed with ulcerative colitis (UC). “His symptoms soon became chronic and physically he had gone from being a fit, strong and healthy young man to someone who was frail, very underweight, unable to work and seemingly staring death in the face,” he said.

“As a child I was protected from the seriousness of it all, but knowing what I have since found out, it must have been a desperately difficult period for my parents,” Haresh explained. Pravin was first admitted to St Mark’s Hospital, then based in London’s City Road in 1974. However, as his symptoms worsened, he was re-admitted two years later in 1976. In July of the same year, he had the first part of a radical new operation. It was of course the first stage of an ileo-anal pouch – shaped out of the small intestine to replace the need for the large one – which had been created by the hospital’s consultant surgeon Alan (later Sir Alan) Parks. The operation, which was also performed by Mr Parks, replaced the more conventional option of an ileostomy. Pravin was the first of a group of five patients at St Mark’s and the London (later Royal London) hospitals to have the revolutionary surgery. Just over a year later, Pravin had his final closure and became the proud owner of a pouch.

“This pioneering surgery gave my father and the family a new lease of life. Following surgery my father’s physical condition recovered significantly and as a result he was able to start living a normal life again. “He was able to return to working full time, earn a decent living for the family and fully enjoy social activities too. This in turn allowed the entire family to live normal lives for the many years that followed,” said Haresh.

“My father’s experience of the pouch was generally good. He had to use a catheter to empty the pouch and therefore needed to keep equipment with him wherever he went. He preferred to use disabled facilities wherever they were available and took care regarding the size and timings of meals when out and about,” added Haresh. “I suppose that to him these were trivial inconveniences in light of the condition he had suffered prior to surgery – and preferable to having an ileostomy.”

“Pouch surgery was extremely successful for my father and for that the family will forever
be indebted to the late Sir Alan Parks and his team”

Sir Alan Parks

First pouch patient

After those first five pouch operations, Mr Parks and his senior registrar, John Nicholls (later Professor Nicholls and a patron of RLG), wrote an article titled ‘Proctocolectomy without ileostomy for ulcerative colitis’ ¹ for the British Medical Journal. In the report, Pravin is referred to as the first case to have a pouch fitted. Commented Haresh: “A point made in the BMJ article about the importance of temperament was perhaps applicable in my father’s case. He was a very philosophical person and not shy. This perhaps allowed him to put himself forward as one of the early candidates for surgery and subsequently helped him to cope with having to use a catheter. “The other significant factor that helped my father cope with his illness and the surgery was the presence and support of my mother. She coped with so much whilst Dad was ill and always remained by his side, providing practical and moral support through the darkest hours before the surgery in 1976 and thereafter when living with the pouch, the ileostomy and the related issues that arose from time to time.”

“This pioneering
surgery gave my
father and the family
a new lease of life”

Pravin Ruparelia

Mainly incident-free

And Pravin’s life with a pouch was mainly incident-free for almost 40 years until 2014 when he developed pouchitis and due to complication with the pouch needed an ileostomy until he died in January 2022 aged 82.

“Overall, pouch surgery was extremely successful for my father and for that the family are grateful and will forever be indebted to the late Sir Alan Parks and his team, Professor John Nicholls and everyone involved for all the hard work in pioneering the surgery, providing treatment and support to patients pre- and post-surgery and for sharing the knowledge with the wider medical profession and patients. “Dad could have gone to beautiful, sunny Fiji when he left Uganda… but he came to England, had the fortune of being referred to St Mark’s Hospital and the rest is history,” added Haresh.

You can download a copy of this historic paper below. While researching his fathers pouch history, Haresh came across correspondence which confirmed that his father was indeed the patient referred to in that paper as Case number 1.
↩︎

Parks Nicholls Paper 1978

Download Now!1883 Downloads

AND A VERY HAPPY FOOTNOTE: RLG is delighted to welcome Haresh Ruparelia as our new treasurer!

A version of this article first appeared in ROAR! issue #66 – Winter 2023. 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 all the way back to issue number 1, published in 1994. See pouchsupport.org/join for further information.

Stories

One member’s pouch journey

Red Lion Group member, John Weight, describes his journey from UC sufferer to pouch recipient (hospital waiting lists were not the only problem!) – and recounts some of his pouch adventures.

As John Weight points out: ‘Surgical procedures and patient outcomes have undoubtedly improved since I had my pouch operation. And new pouchees are now far less likely to experience the number of adhesions, subsequent bowel obstructions and emergency hospital admissions that I did. In short, the patient journey today tends to be much smoother than before.’

John outside his and Debbie’s over-water bungalow in the Maldives

It all started in 1979 when I was diagnosed with UC, or was it Crohn’s? It took doctors 10 years to decide before they erred on the side of ulcerative colitis in all probability. My bowel healthcare problem had been getting progressively worse. I was down to 9st. 4lbs and a daily dose of steroids was not having any apparently beneficial effect. Surgery was suggested several times but a colostomy bag or ileostomy for an active young man was not an acceptable option for me.

In 1988, I was referred by my local consultant to Central Middlesex Hospital for an in-depth internal examination. At the end of my stay the specialist consultant came to my bedside and told me that my large bowel lining was showing signs of dysplasia (a pre-cancerous stage) and that surgery was now very strongly recommended. I was stunned but I still expressed my reluctance to go down this path. However, he went on to tell me of a relatively new surgical procedure involving the formation of an internal ‘pouch’ instead of an ileostomy.

This seemed too good to be true. He asked me if I would agree to a referral to the consultant surgeon John Nicholls at St Mark’s Hospital, then based in London’s City Road. As the senior registrar to Sir Alan Parks, he was one of the pioneers of this technique, later becoming a professor and, of course, a patron of the Red Lion Group.

Several months passed before I travelled to City Road to meet Mr Nicholls. He was very direct in his approach and very thorough in detailing the surgical procedure involved supported by some freehand sketches – a wondrous piece of re-plumbing and not without risks that he was also careful to explain.

Statistics at the time recorded a 1-in-10 chance of failure – an acceptable risk I thought, not that I had much choice now, so an in-patient stay was booked for the stage one operation – a colostomy and the construction of a J-pouch. The stage two closure would follow two months later. I could just about cope with that! My employer agreed to give me four months’ paid leave so all I had to do now was wait.

My first in-patient booking was postponed so all plans and arrangements had to be stood down – which meant another long wait.

Bitten by a parasite

In the meantime, I thought I would spend a weekend in Oxford visiting friends and taking my mind off the impending ordeal and perhaps enjoying a curry and a few beers. Unfortunately, it was not the curry that put me back in hospital again but the cryptosporidium parasite that had been piped in that weekend from Farmoor Reservoir which supplies Oxford’s water.

The news bulletin at the time advised children and the elderly to take extra care as the “parasite can cause gastrointestinal illness with diarrhoea in humans”. So, for someone like me with UC it was a disaster!

I spent two weeks in High Wycombe General Hospital on 40mg of intravenous prednisolone before my condition was brought under control. Once back on my feet and feeling better I returned to Oxford – this time to include a light game of tennis. But it wasn’t long before the ambulance was on court – I had ruptured my left Achilles tendon! I put this rather unfortunate accident down to the fact that my muscles and tendons must have been weakened by the earlier high doses of corticosteroids.

So, off to Oxford’s John Radcliffe Hospital for a knee-high plaster cast with an embedded high heel to reduce the strain on the tendon. It would be some months before this would be removed and my rescheduled bowel operation was only a few weeks away!

The taxi arrived alongside the entrance steps to St Mark’s Hospital. The driver jumped out and opened the rear door for me as if this was a celebrity arrival – get me out of here! I struggled to extract myself from the rear of the taxi holding a pair of aluminium crutches loaned by John Radcliffe Hospital.

Once afoot there was no stopping me as I hopped up the entrance steps. There was no going back! The pre-admission nurse looked a little perplexed. I tried to pretend this was just another routine hospital visit – I’m a regular now, well into double figures since the start of my UC. She filled in the requisite pre-admission forms and checks and then disappeared.

Half an hour later she returned – “I’ve spoken to the surgical team, and they can rig up a hoist for your [plastered] leg”. It seemed like a marathon getting this far but I was ‘in’, and Mr Nicholls would very soon be scrubbing up.

A colon-free future

And so it came to pass that I slowly emerged into a new world without a colon, a tummy with a railway track of staples down the middle and tubes coming out of every orifice! “Are you awake Mr Weight – would you like a sip of water”? Within hours I was being escorted around the ward with one crutch and a saline drip instead of the other to avoid any risk of deep vein thrombosis.

My progress was good, and I was discharged after two weeks with ample supplies of colostomy bags and stoma templates. I bought a pair of high-waisted trousers to make life a little more comfortable. The promised two-month wait for the return leg became three before I was finally booked in for the closure. At last, I would be ‘normal’ again, all joined up and no plastered leg encumbrance this time.

The next 10 days in St Mark’s passed fairly quickly – getting used to my new bowel configuration and getting fit again by walking up and down the stairs to the courtyard garden as often as I could with the occasional loo stop. The nursing staff omitted to tell me about the pouch stool acidity caused by the residual gastric acid, so I was a little sore initially. The acidity would have been neutralised by my large bowel had it been present. So, this was the time that meticulous cleanliness and barrier creams entered my life.

Two months after being discharged and I was back for a post-op review. I had been getting leakages, typically when out shopping. My pouch output seemed quite fluid. The consultant thought I might have pouchitis and prescribed 500mg Metronidazole suppositories. I have been on them ever since – over 33 years. Without them I simply could not survive. For years now I have been using two to three suppositories a week on average – they seem to keep the inflammation in check even though repeated use of antibiotics is generally not recommended.

Some years later another consultant suggested a two-week blitz of Ciprofloxacin and Metronidazole tablets to completely remove the inflammation rather than maintain it at a low level. However, within five days of completing this regimen the pouchitis had returned.

For the first 10 years of living with my pouch I was not troubled with it at all. I put weight back on, I travelled all around the world, played football, windsurfed, skied, and swam – life was back on the fast track save for a few unpleasant derailments – the dreaded adhesions and attendant agonising bowel blockages. Most times these would sort themselves out within a few hours or overnight. However, on four occasions a hospital in-patient stay was necessary – twice in Luton, once in Walsall and once in Male in the Maldives.

The Walsall stay was the scariest – no bowel movement for seven days. The surgeon was seriously considering operating when suddenly there was some movement. I think it must have been the onset of panic. I can’t say how happy I was to get out of there unscathed! The Maldives experience does merit some mention as the costs were covered by a Red Lion Group recommended insurer at the time.

The episode occurred the day before we were due to leave Komandoo Island to return to the UK. After a night of severe colicky tummy pain my wife Debbie called the island resort reception for a doctor. The nearest was stationed on a larger island nearby, a 30-minute high-speed motorboat away. On arrival the doctor administered some painkillers and muscle-relaxing medication and arranged for a transfer to a hospital in Male, the capital of the Maldives.

I had to go back on the motorboat with the doctor to the neighbouring island where I would catch the scheduled seaplane flight to Male. Debbie frantically packed our suitcases while I looked on helplessly. Four of the resort staff turned up with a wooden door that had just been removed from its hinges – this was the best they could do for a stretcher! – I was loaded on board and lugged along the sandy track through the palm trees to the jetty, stopping along the way for each of the bearers to change corners and swap load-bearing arms.

Overhead, the sun burned down both blinding and cooking me on this makeshift hotplate. By the time we reached the jetty the colicky pains had returned. I was carefully laid down to rest while my wife settled the hotel bill, and the boat was prepared for departure. I don’t remember much about the sea or air journey to Male, just the acute pain and the concerned faces of helpers and onlookers. At the airport, a water taxi and then an ambulance ride got me to the allotted hospital.

I was put on a drip and given some more medication and allocated a room with two single examination beds but no bedding. My wife checked in at a nearby four-star hotel – the one the BA pilots used as it turned out. By 5pm that day my bowels started moving again and I began to feel a lot better – even so I had to spend the night at the hospital for observation. The other spare bed in my room was in continual use with the comings and goings of local patients and their families – I think it must have been an A&E side ward.

At one time a pregnant woman was there with an extended family of about eight people. It wasn’t possible to get any sleep until about 1am when everyone had eventually filtered away into the night. The next morning, I needed to get discharged quickly – as there was every possibility I could still catch my 10:00am BA flight home and return to the original holiday schedule. A young man from a local travel service company that our tour operator used to facilitate the transfer of its clients to and from the outlying islands turned up early to help me with my discharge. He had visited me in hospital the night before and was thus au fait with my predicament. He was an absolute star – helping with the discharge process, arranging the preparation of my hospital bill, and getting the medical report written up for my insurer – and all before 9:00am!

A truly amazing achievement! I grabbed all the paperwork and ran with my supporter to a waiting cab. Debbie was there with our luggage in the boot. We rushed to the airport and ran to the BA check-in desk. They were waiting to rush me through as my wife had chatted up the BA pilots the night before and explained my predicament.

I got to my seat and looked around at all the people meticulously stowing away their hand luggage as if nothing had happened. I had just travelled through some seemingly highly eventful time-warped journey and been deposited in seat 36B.

“Did you enjoy your holiday,” asked the lady seated on the aisle side of my seat. “Beautiful place, lovely people,” I recounted – “still, it will be good to get home”.

Footnote: It’s worth highlighting the much improved surgical procedures and patient outcomes since 1989. And that new Pouchees are unlikely to experience the number of adhesions, subsequent bowel obstructions and emergency hospital admissions as John did.

A version of this article first appeared in the Summer 2016 issue 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 all the way back to issue number 1, published in 1994. See pouchsupport.org/join for further information.

Stories

Mind over matter

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.”

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.

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.

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.

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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Stories

HLA-B27 – The genetic link connecting UC and other…

HLA-B27 – The genetic link connecting UC and other autoimmune conditions?

If you have suffered with Ulcerative Colitis, there is a possibility that you may be affected by other inflammatory (autoimmune) conditions such as uveitis or spondylitis. There is a link between these conditions which is the HLA-B27 gene.

by Gary Bronziet, Membership Secretary Red Lion Group (25.09.2020)

As a young man, in addition to my UC, I also suffered with uveitis (an inflammation of the eyes) and back pain. I hoped that when I got rid of my “ropey colon” (that was way back in 1984) these other conditions would magically disappear but alas, they did not.

Over the years I continued to have occasional flare-ups of uveitis. Aware of my history of UC, my ophthalmologist at Moorfields was the first consultant to mention the link between the two conditions and the HLA-B27 gene. He referred me to be tested for the gene, a simple blood test.

“About half of all people with anterior uveitis have the HLA-B27 gene. The gene has been found in people with certain autoimmune conditions, including ankylosing spondylitis and ulcerative colitis“. From NHS website article https://www.nhs.uk/conditions/uveitis/causes/

Surprisingly, my own HLA-B27 test came back negative – although the consultant at the time said that it wasn’t always a conclusive test.

Over time, my pouch has been extremely well-behaved and the uveitis flare-ups less frequent. My ongoing “chronic” condition has been my lower back pain and to a lesser extent, other joints including my elbows. As a keen golfer that is not an ideal situation. When asked for my handicap, my usual answer is ‘my back’!

I’ve had my back poked, prodded and scanned by a stream of spinal surgeons. The first diagnosis after an MRI was L5 disc degradation. More recently after a second MRI scan a spine surgeon advised that my “disc degradation” was “not unusual for someone of my age” and not the cause of my back pain. Being aware of my history of UC he suggested another type of scan. This was a nuclear (SPECT-CT) scan, which is used to identify inflammation. Sure enough, my spine was riven with inflammatory “hot spots”.

I have soldiered on over the years, taken up Pilates (which I strongly recommend) and occasional facet joint injections which give temporary relief.

Which brings me back to where I started in this article and the HLA-B27 gene. I recently resorted to diagnosis by Google and have convinced myself that my back and joint symptoms are probably spondylitis (AS). This would not be surprising considering my history of UC and uveitis.

I have considered having another test for the gene, but I’m not sure it would make any difference to the prognosis. However, it might be that my next step should be to find a good rheumatologist rather than an orthopaedic surgeon.

I wonder how many of you have a similar history and whether you have been tested for the HLA-B27 gene? If you have any experiences to share, feel free to write to me at gary@bronziet.com

Gary Bronziet

Red Lion Group

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