Committee - Internal Pouch IA

Jay Jina

Committee Member

I was introduced to the IA by my stoma nurse during a rather complicated recovery following my ileostomy operation in early 2008. Prior to that, I had suffered from colitis for nearly 30 years, but which had been mostly kept under control through medication.

Living with a stoma and a bag was perhaps the most challenging learning experiences I have faced. I am therefore grateful to the team of nurses and doctors at the QE Hospital in Birmingham for their care, patience and perseverance to keep me on the path, giving me the confidence to manage the stoma, allow the unconnected pouch to settle, and to build up strength for the reversal fifteen months after the initial operation.

While the pouch has caused challenges, I am thankful that the dreaded alternative of leaving my colon unattended has been dealt with. Apart from a follow on operation to get some hernias fixed (they often come up as the stomach muscles get weakened after surgery), I have annual follow ups with the surgical team at the QE so as to keep an eye on the pouch because I often suffer from abdominal pain and a constriction which sometimes requires surgical attention under anaesthetic. The constriction means that I have to use a medicina catheter to empty my pouch which on the whole works pretty well.

Until about four years ago, aside from a being laid low for 8 weeks after my initial operation, and the occasional day here and there, I was for many years working in the corporate world. I continued in that role as a director in a multi-national which involved frequent international travel. Some of these travels were not without incident, but it was all part of learning to live, first with the stoma, and then with the pouch. Having a loving wife and the support of family around me have been great boosts on helping me in my colitis and post-colitis journey.

I am new to the IPSC though I hope to bring my personal experience as a “pouchee” and of my life as a manager in industry to support the activities of the organisation and contribute in a small way to make our members’ lives better.

Brigitte Siefken

Committee Member

Hi, I’m Brigitte, a ‘pouchee’ since 2016. My route to internal pouch surgery was an unusual one. Out of the blue in October 2011, a chance conversation with a gastroenterologist led me down a path no-one expected – not even the doctor! The previous year I’d had rare surgery for severe acid reflux, but that aside I was really fit and healthy, busy with my career and enjoying family life. I had neither UC nor Crohns nor FAP, so being suddenly told I needed colorectal surgery to prevent colon cancer appearing within 2 -20 years was utterly devastating. I had endless questions and few answers. Though presented as a ‘choice’, my only safe option was to agree to surgery to prevent the disease. For me it was pouch-life or risk everything.

Utterly floored, overwhelmed, and needing information, I reached out and found IA. Making that call to national office changed everything. The visitor chats changed my perspective, informing and reassuring me as I faced the long wait for surgery. April 2014 saw me having my first operation – my restorative proctocolectomy and internal pouch creation. The second surgery came in July 2016 when I went from life with a loop ileostomy to living with my J pouch. As for pouch life itself, it has some challenges for me, but I live each day in the knowledge I made the right choice.

Between the two operations I joined my local IA committee, wanting to offer others the kindness and support I had been shown. I am now Chair, Secretary and Visiting Coordinator for Nottinghamshire and Derbyshire IA Branch and love being able to support people locally. When in 2019 I was asked to join IA’s internal pouch committee I said yes, hoping that I can bring something different to the team thanks to my rare route to surgery. It really matters to me that no-one is left feeling as isolated and clueless as I was initially. No-one should walk this path alone – not when there are others who can support you and help you find the inner strength you maybe never knew you had. If I can ease the path of just a handful of others, I will have done my job.

Paula Holmes-Carr

Committee Member

I’ve been a member of IA for over 25 years. I had my first ileostomy at 21 when I was introduced to the IA journal by the stoma nurse. I made contact and my journey began.
The lady from IA was so lovely and made me feel better about dealing with my new stoma which I thought was a bag for life but I’d done my own investigations and found out that there was a relatively new surgery called a ‘J pouch’ and that IA had a pouch group too.

My pouch is now over 20 years old; my journey hasn’t been simple with over 30 operations and number 40 awaits for complications of fistulas. But for me, I ensure my ‘joinery’ is always positive and it’s got me through all the complications along the way!

I’m currently using biologics for my Crohn’s diseaase and the pouch is relatively well behaved for now. I know I’ll go back to a permanent ileostomy in my journey and this is no problem as the support from IA is immeasurable and the friendships you form by volunteering and helping others in a similar situation. I’ve enjoyed every opportunity that’s arisen from volunteering; from standing on the IA stand at local events and meeting new ostomists and their families to going to London on World Ostomy Day on a double decker bus with so many amazing, inspirational ostomists. I simply listen to others journey which helps you and them by being in a similar position.

I’ve been with IA’s local group committee for 10 years and recently made the transition to pouch committee – unsure what took me so long. I look forward to playing a positive role within the pouch committee and if you ever want to chat to someone about living positively with a j pouch and any complications don’t hesitate to look me up. I’m always open, honest and positive.

Julia Spanswick

Committee Member

When I was 25, I started having problems with diarrhoea and blood in my stools. I was diagnosed with ulcerative colitis (UC). For the next 4 years I struggled with the disease. I was on and off of steroids and other medicines, and had periods of time in hospital to rest the bowel. During each hospital stay, there were discussions about the removal of my bowel, but because I was so young, they wanted to avoid it. Eventually, I was spending more and more time in hospital, I was getting weaker and going to the toilet on average 30 times a day and losing lots of blood during each motion. When I was 29, my health had really deteriorated, I had a TPN line fitted and I was told that my colon had to be removed to save my life.

I was given an ileostomy but I still had my rectum. I felt so well and was able to get married nine months after surgery and was parascending off of the back of a speed boat in Mauritius, on our honeymoon. I was living life to the full. My rectum was proving to be troublesome, as it was still diseased with U/C, so I had to use suppositories to keep it calm. My surgeon, Mr Ward said he would like to perform J Pouch surgery on me. After lots of discussions and thoughts, I went ahead and had the second stage of the J Pouch surgery and three months after that, I had an operation to close my loop stoma.

To begin with, I kept on going to the toilet. My nightmares of UC came back to haunt me, and my bottom was so sore, as it wasn’t used to being wiped, so Sudocrem became my friend!

I came to the conclusion that I was going to control this J Pouch rather than ‘it’ controlling me. So every time I had the urge to go, I held on and worked on my pelvic/sphincter muscles, and it worked. I go to the toilet on average 2-3 times daily. I very rarely get up in the night to go to the toilet and I don’t have any leaks.

My ambition in life was to become a mother and we had been told about the possible risks with fertility following so much surgery. We decided to try and eight months after surgery, I fell pregnant with our first child and then had our second child two and a half years later. Both pregnancies were problem free (I had never felt so healthy) and were both born by C-section.

My J pouch has been terrific and I have great control. I have had to have my tail end stretched twice, as it became narrowed, so, under medical supervision, I now use a rectal dilator twice a week to stop any future narrowing. I am fit and really well. I go on lots of long dog walks, I do HIT training and pilates; I also work full time with children with special needs.

Of course I wish that this hadn’t happened to me, but it has and it has put life into perspective. I live my life to the full, with positivity and gratitude. I am so grateful to my fantastic surgeon, Mr Ward (my angel) and all the nurses who have cared for me. Without them, the support of my family & friends and sheer determination on my part, I wouldn’t be enjoying my healthy (medication free) busy life.

Michelle Bennett

Committee Member

My journey began in March 2008 when I was diagnosed with ulcerative colitis (UC) after a relatively short period of illness. I was prescribed long-term daily medication which settled things down quite nicely. I was able to live my life as normal; going to work, enjoying holidays and generally doing what I wanted. However, January 2013 things took a drastic turn for the worse.

After several courses of steroids prescribed by my GP I had a follow up appointment at which she said ‘there is nothing more I can do for you’. Not really understanding what this meant I think my expression was one of ‘puzzlement’; it was then my GP said ‘you need to go to hospital’. I thought this would be an out-patient appointment in due course, but that was not what she meant as she picked up the phone and call Frenchay hospital A & E. She advised me that I needed to go to A & E, they would then assess me and move me to the appropriate ward. I’m not even sure then that I fully understood quite how unwell I was.

I ended up in Frenchay for 28 days, during which I had IV Steroids four times a day and after two weeks it was discussed that I may need surgery to remove the infected section of my bowel. As a final attempt to avoid surgery I was given IV ciclosporin. Unfortunately after four days it was evident that this wasn’t going to work either and so I was booked for surgery the next day for a sub-total colectomy.

My consultant talked things through with me and even discussed me having a J Pouch. The surgery took place and I eventually left hospital.

In February 2014 I had J-Pouch surgery, unfortunately I had complications during the early stages of recovery and was re-admitted, as an emergency, via ambulance a few days after leaving the hospital I had my surgery in. Another 23 days, plus surgery to remove my infected loop Ileostomy (as that was realised what was making me so unwell) and replaced with a ‘double-barrelled’ Ileostomy. Three months later I had ‘take-down’ surgery.

Thankfully this time everything went to plan and I was home in five days.

Life resumed to a new ‘normal’, that is until January 2016 when I was on holiday in Lapland. Two days in to the holiday I became very unwell, after a three hour ambulance journey to Rovaniemi Central Hospital I underwent emergency surgery to remove a bowel obstruction caused by a hernia. 30cm of my remaining bowel had to be removed and 11 days later I was allowed to fly home, only to end up yet again in an ambulance heading for a local hospital with severe abdominal pains.

Investigations showed that I had an air leak at one of the points where the surgeon in Lapland had re-joined my bowel. It was decided not to do surgery, but to allow the bowel chance to heal itself; which after several days of total bedrest and nil by mouth it did. Day 8 I was allowed home and thankfully no further admissions to hospital overnight.

Since having my J Pouch I have only had 2 episodes of pouchitis; one in 2015 and again in 2016. Following antibiotics everything settled.

Generally, I can carry on a normal life, as long as I watch what I eat and avoid stress as much as possible. I joined Avon IA shortly after my first surgery in 2013 and found everyone extremely supportive. It was great to have fellow ostomates to share stories, hints and tips with. I joined the internal pouch sub committee in 2019 and again found it hugely beneficial.

Maggie Butler

Committee Member

I was unexpectedly diagnosed with ulcerative colitis in October 2012. I had no previous health issues but by July 2013 I was suffering so badly with fatigue and weight loss that I took early retirement, thinking that things would improve with rest. However, instead of my planned 60th birthday trip to Morocco, I found myself having emergency surgery to remove my colon.

I left hospital six weeks later with an end ileostomy, a fistula, and quickly developed two hernias. As I recovered, I realised how unwell I had been pre-surgery. Support from Birmingham IA members helped me enormously. Six months later I asked my consultant about Pouch surgery. He had some reservations, mainly because of my age and my post-operative diagnosis of indeterminate colitis but referred me to a colleague who carried out Pouch surgery.

My new consultant sent me for an anorectal manometry test and then offered me surgery.

By this time, I was enjoying my new-found good health and was reluctant to give it up for another long recovery. I spent the next three years attending Pouch Information Days and talking to as many pouchies as possible. The IA Pouch group put me in touch with women of a similar age who had experienced both good and bad outcomes to help me to reach a decision. Finally, in July 2017, I had the surgery to create the j-pouch and loop ileostomy and repair the hernias. The recovery was straightforward and on New Year’s Eve 2017 I had the ‘takedown’ surgery.

I soon had reasonable control of my pouch and it has continued to improve. It isn’t always perfectly behaved, but two years later, I’m still delighted to have it. I would definitely make the same choice again.

Carol Katté

Liaison with Stoma Care Nursing

Carol been a Stoma Care Specialist Nurse for almost thirty years. After specialising in surgical nursing, both in the UK and South Africa, Carol was then a district nursing sister, and community liaison sister. From this last post she was ‘led’ into the stoma care world setting up a stoma care nursing service where she worked because there wasn’t one! As you can imagine, there have been many changes and developments over those years: improvements in surgery, innovations in appliances and products, more stoma care specialist nurses, support from charities, the involvement of manufacturers and delivery companies.

Carol became aware of the tremendous organisation of IA early in my stoma journey, and often used its patients’ and professionals’ information leaflets, DVDs (videos originally) and the visiting scheme. Becoming involved with Surrey IA first (invited by Carolyn Stammers to replace her as she moved on) Carol later stepped in to her shoes as stoma nurse liaison when she retired, together with co-liaison nurse, Alison.

The nurse liaison role is to liaise with and support the organisations representing Stoma Nursing: the Association of Stoma Care Nurses (ASCNUK), the Royal College of Nurses (RCN) Gastrointestinal Forum, the World Council of Enterostomal Therapists (WCET), Patients, Industry and Professionals (PIPs) Forum, the Scottish Stoma Forum (SSF) as well as the member organisations (MOs, the local groups of IA) and our members.

Alison and Carol answer queries received at national office or on social media. Whilst they cannot give specific medical or nursing advice, they can give general explanations and direct people to the right place for assistance. They also help with the website and the production of information leaflets for patients and professionals and describe the role as a very interesting and rewarding position.

Ruth Cox

Committee Member

I was diagnosed with Ulcerative Colitis in October 2016, prescribed steroids and just presumed that would sort everything out. A month later, I was admitted into hospital as my UC had flared so badly. I was given an infliximab infusion which seemed to help and I was sent home. A week later, I was back in hospital and told that I needed emergency, life-saving surgery to remove my inflamed large colon as it was on the verge of rupturing. So, on 6^th Dec 2016 (about 6 weeks after receiving my UC diagnosis), I had surgery to remove my large bowel and create an ileostomy. My surgeon told me straight away about another operation he could do to create a j-pouch and said that I would only have my ileostomy for a short while and I knew from the start that I wanted to try this and didn’t like the idea of having a stoma for the rest of my life.

My plan was to recover from this surgery and get my j-pouch operation as quick as possible – but life threw me another curveball when I discovered I had stage 1 breast cancer in April 17. I had another life saving surgery to remove the lump, followed by a course of radiotherapy and was then back pestering my surgeon for the next stage to go ahead to create the j-pouch. This went ahead in April 18. A few weeks after this surgery, I started having lots of pain and inflammation in my ankles and feet and got to the point where I was unable to walk without having crutches to support me. The consultants diagnosed this as enteropathic arthritis (which can be linked to IBD) and prescribed me Methotrexate and Humira. Luckily, these worked very well for me and I am now up and about and appreciating my feet and ability to walk more than ever. My final takedown surgery was done in April 2019 and my j-pouch was up and running.

My journey to a j-pouch has certainly been eventful and I’m pleased that I made the decision to have it. It has given me back my freedom and I love to go out for walks with my family and for days out to the beach. I live my life to the full with hope and positivity for the future.

Internal Pouch Sub Committee

Internal Pouch Sub Committee

Jay Jina

Committee Member

Brigitte Siefken

Committee Member

Paula Holmes-Carr

Committee Member

Julia Spanswick

Committee Member

Michelle Bennett

Committee Member

Maggie Butler

Committee Member

Carol Katté

Liaison with Stoma Care Nursing

Ruth Cox

Committee Member