Stories

Stoma or J-Pouch? A life changing decision

Stoma or J-Pouch? A life changing decision.

” So, I need to make the decision very soon to either make the stoma permanent and remove my rectum etc. or go for the j pouch. I’ve had two years to think about this and still can’t decide as some stories put me off like finding toilets all time. I just don’t know what to do for the best?” Joe Wright on J-Pouch Support Facebook group.

Many of us are faced with this life changing decision – permanent ileostomy (stoma) or J-Pouch. Of course, not everyone even has the privilege of having this choice. Depending on circumstances, the decision may have already been made for us or not available. Prior to the invention of the Ileal Pouch Anal Anastomosis (IPAA) commonly referred to as a J-Pouch there was no alternative to a permanent stoma. When the J-Pouch procedure was invented, it was an appropriate option, most commonly for sufferers of UC and more rarely FAP. Sadly, not an option for Crohns disease or Cancer in the rectum. If you are in a situation where you have an acute condition, requiring emergency intervention, and you are treated at a location which is not a specialist centre experienced in the J-pouch procedure, they may perform a proctocolectomy removing the rectal stump. The rectal stump and anus must be left in situ for the creation of a J-pouch. It is not recommended to perform the J-pouch creation on an acutely ill patient. The ideal situation would be a three-stage operation – Colectomy with ileostomy, J-Pouch creation with loop ileostomy and finally the closure of the loop ileostomy and J-Pouch functioning, sometimes known as the “take-down”.

Although it is the case that some people have the J-Pouch creation in a single stage this is rare. More likely this would be for a patient with FAP rather than suffering with UC. Most UC patients will find themselves with a temporary stoma for several months or longer.  These patients may then find themselves adjusting to life with the stoma and asking themselves the question – is J-Pouch creation the way to go or am I better off as I am?

There has been a recent thread on the J-Pouch Support (UK Specific) Facebook Group on this subject and I present below some of the questions and answers.

From Joe Wright. So, I need to make the decision very soon to either make the stoma permanent and remove my rectum etc. or go for the j pouch. I’ve had two years to think about this and still can’t decide as some stories put me off like finding toilets all time. I just don’t know what to do for the best?”

From Stephen S. I feel your pain, I also need to make the exact same decision soon. When I first got the ileostomy, I was 100% sure I wanted the J pouch. These days I’m 75/25 in favour of keeping the ileostomy (like you, I don’t have many issues with it, the bag lasts a few days, I go swimming, camping, walks, days out, holidays etc and it has little to no impact on my life – I also love spicy food, which I feel wouldn’t be an option with a JP), I was initially on-board with the idea of ‘if it goes wrong, just go back to a stoma’, but my surgeon said to me that it’s not a great path to go down, they’re big surgeries, you will lose some small bowel (which will make output looser, absorb even less B12 etc etc) and the stoma will never be as good as it is now, so it’s certainly an option, but he said if I’m thinking like that, then I should keep the illy. But as crunch time approaches, it’s really hard to make the call, knowing that there’s never another option. The hands we’re dealt in life, eh?

From David Davies (Red Lion Group Chair). I enjoyed reading your very well-balanced post. I’m guessing you haven’t had the surgery to create the pouch yet. This is a big op and certainly not a stroll in the park so my feeling is you must be motivated by the prospect of poohing out of your bum (instead of into a bag) to go through the op plus the subsequent (and much smaller) stoma closure op. Plus the possibility that your quality of life might be adversely affected if the pouch doesn’t work out well. Your acceptance of the stoma is impressive, and I wonder if you have a driving desire to have the pouch? Let’s face it, we have all had the crucial surgery that saved our lives, whether the initial surgery was necessitated by UC, CA or FAP (or anything else). The subsequent choice of stoma vs pouch is more of a lifestyle decision for most, albeit with implications for mental health and well-being. And you raise a very good point about it not being so straightforward to go back to a stoma if the pouch doesn’t work. But one thing I would counter is the spicy food thing. Many pouchees eat spicy foods without problem – me included. So, I would caution about having that as a reason not to go for a pouch. Another consideration is employment – some self-employed are put off by the more extensive surgical journey for a pouch vs a stoma and the potential loss of income. I had a driving, overwhelming desire to get a pouch, which meant I never even considered for one second the prospect of sticking with a stoma (which I also got on ok with). I think that helped with my acceptance of the consequences in terms of operations and recovery and the various challenges of living with a pouch. Best wishes on your journey, whatever your decision, and I hope the comments of this excellent group are helpful.

From Gary Bronziet (Red Lion Group Membership Secretary). My pouch journey followed a common path. Starting with mild symptoms, I was originally diagnosed with proctitis (which effects just the rectum). This was way back in 1979 when I was living and working in Toronto. I returned to the UK in1980 and over the next few years the symptoms got more serious developing into full blown chronic ulcerative colitis (UC). I was fortunate to be referred to John Nicholls and there began a life-long “relationship”. I recall that at our first meeting, he drew me a picture of the pouch procedure with the reassurance that most cases of UC are resolved without the need for surgery. Between 1980 and 1984, I had several in-patient stays in St. Mark’s (the original building in City Road, Islington). I was jointly under the care of John Nicholls, and Professor Leonard-Jones, on the medical side. There was certainly no pressure on me to have surgery, and the available medical options were tried (which at the time were salazopyrin and steroids). Of course, anyone that has suffered with UC will testify – the effects of the disease were debilitating and affecting all aspects of my life, including extreme weight loss and necessary blood transfusions. I was however a reluctant surgical patient and tried to soldier on. I remember on one of my admissions to St. Mark’s, another patient who had begun his pouch journey advising me to have the op. I recall his words that “I obviously hadn’t suffered enough yet”! He was right, and eventually I reached the decision that my quality of life was so poor that I really had no option but to agree to the surgery and in 1984 my own pouch journey began. The plan was for a 3-stage procedure, which commenced in the autumn of 1984, when I was admitted to the London Clinic where John Nicholls performed my total colectomy and ileostomy. Goodbye to ropey colon!

Following my surgery, I was soon back at work and enjoying life for the first time in years. I can’t say that I “liked having a stoma” but it certainly wasn’t as bad as I had imagined, and the effect on my quality of life was transformational following the years of chronic UC. The plan had been to have the second stage operation 6-months later which would have been the summer of 1985. However, at this stage I was beginning to have the doubts that were expressed at the start of this article. The pouch creation is major surgery, and it’s a tough decision to volunteer for what is essentially “elective surgery” at a time when you are feeling healthy. The stoma did not stop me doing anything. I travelled, played squash, swam etc. It was a long time ago, but I recall my biggest doubt with having a pouch was “urgency”.  The last thing anyone wants who has been in this position is to return to a situation where they are scared to be more than 10ft from a toilet. (I also had my first son, Daniel, born in May 1985).  When I checked into St. Mark’s in the summer of 1985, I expressed these “doubts” to John Nicholls. A joint decision was made that there was no urgency in making the decision. It was suggested that it would be safe to delay for up to three years – at which point a decision would have to be made to either proceed with the pouch surgery or further surgery to remove the rectal stump that had been left for the pouch creation.  So, life continued with the stoma for a further 3 years.

Deciding to proceed with the pouch surgery was an extremely tough decision. I had become comfortable with the stoma, was enjoying life, getting on with my career and of course enjoying family life with my young son. The thought of undergoing more major surgery was daunting, but what swung it for me was the fact that, if I did not have the pouch, I would still require major surgery to remove the rectal stump.  {That was the recommended course of action back them, but it may be that the situation has changed or doesn’t apply in all cases}.

For better or for worse I decided to go with the pouch, and this was scheduled for November 1987. I recall I was due to speak at a conference in Montreux in October 1987 and John Nicholls mentioning that “it was one of his favourite places” and I should attend the conference before my surgery. I recall gazing out on the beautiful lake and wondering if I had made the right decision. 

I am pleased to say that the surgery went smoothly, and I now have a collector’s item of a pouch – a “hand sewn” W Pouch courtesy of John Nicholls. I’m not sure if he autographed it.

I have never regretted the decision. I would say that I had at least 25 years of perfect pouch function. Able to eat anything, no frequency or urgency issues, never getting up at night. In fact, my pouch was such a “non-issue” that I have travelled the world without even feeling it necessary to disclose my pouch to my travel insurance. {I’m not sure I would recommend that depending on your circumstances}.

In more recent years, I have had some issues. Emptying problems and more recently adhesions/blockages relating to scar tissue from the original surgery. The emptying problems were addressed by using a medina catheter. For the blockages, I am currently awaiting surgery to hopefully rectify this. 

If you would like to add your story to this BLOG and/or possible publication in ROAR! please send to Christopher Browne (ROAR! editor) at cbrowne@brownemedia.co.uk