Inspirational stories of living with a J Pouch

One member’s pouch journey

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.’

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.