Our 2000th Facebook Group member shares her inspirational pouch journey – which started at the age of just six!

Jenny Hogan lives in the suburbs of Sydney, Australia, in the shadows of the Harbor Bridge.  She is a qualified nurse specialist and works part time in intensive care, whilst also raising two young children.  In her younger years she travelled widely and during a stay in Edinburgh she had a clock stolen by a Scottish International scrum half – not so unusual for anyone who knows any Scottish scrum halves.  But Jenny has one feature that is common to us all in this group, she has a pelvic pouch!  Furthermore, Jenny recently became the 2000th member of the J-pouch support (UK specific) Facebook group, an online community which continues to grow and which provides an outstanding platform for pouchees to share pouch-related issues and comments and to receive tips, advice and support from fellow pouchees.  To celebrate this significant milestone, we thought it would be nice to share Jenny’s remarkable pouch story, which will resonate with many of you and might inspire in equal measure.  

Jenny’s journey

I first noticed signs of ulcerative colitis at the very young age of just six years old. Steroids didn’t resolve the disease and were beginning to stunt my growth by the time I was eight years old. That was when my parents were faced with the stark reality that I needed a total colectomy to save my life.

Pouch surgery was in the very early stages in Australia at the time and only carried out in a couple of centres, but my parents and I were lucky. One of my surgeons, Professor Graham Newstead, had received training at St Mark’s Hospital and, along with his colleague Eddie Shi, had already performed pouch surgeries on two other children. So I became the third child at the centre to receive a pelvic pouch when I was just ten years old – one of the youngest people ever to have pouch surgery apparently.

My pouch surgery was done in a two-stage procedure: total colectomy and J-pouch creation in the first operation, and closure of the temporary ileostomy in the second.  I was very unwell after the first operation due to extremely high output and related complications such as dehydration. I had to spend most of the time between the two surgeries in hospital on a drip just to stay hydrated. As a result, the second surgery was carried out only three months later, in October 1988.

I have unpleasant memories of that short period when I had a temporary stoma, and I’m extremely grateful that the pouch surgery has allowed me to live bag-free for 38 years and counting since those early days. I remember my mother being calm and pragmatic throughout; she had full trust in the surgeons and was prepared to consent to the pouch surgery on my behalf. I also had the chance to speak with another young pouchee, Rachel, who was 14 at the time and very supportive of the surgery. Even so, it must have been an extremely worrying time for my parents.  Nevertheless, I recovered well from the second surgery and was back at school within two weeks. In general, I remember a pretty much carefree time, with my only concerns being the noise I made in the toilets and the discomfort of natural toilets—basically holes in the ground—on school camps. I’m sure many fellow pouchees can relate.

My initial recovery hit a glitch about six months after my take-down when I became breathless and tired, and it turned out I was severely anaemic with very low iron levels. I was transfused with three units of blood and recovered quickly, but I’ve continued to need iron supplements right up to the present day. Other issues have included occasional pouchitis (which responds well to a few doses of ciprofloxacin) and butt burn (which I manage with a dab of low-dose steroid cream). Aside from these, I got on with my life—travelling the world whenever I could while studying nursing, with only the occasional small-bowel obstruction to worry about if I ate too many trigger foods such as leafy greens, raw mushrooms or apple without chewing them to mush. In 1996, I was hospitalised with a more troublesome blockage that resolved on its own but served as a key reminder for me to chew properly.

These issues aside, I feel fortunate to have had good outcomes and continue to be well to this day, some 38 years on from my take-down surgery. I remain cautious about eating a balanced diet, chewing thoroughly, avoiding trigger foods and not gulping down a pint of water immediately after meals. Perhaps the biggest impact my pouch has had on my life is that I’ve avoided travelling to parts of the world where food-poisoning risks are higher. I hope one day I’ll overcome these concerns to visit Asia and South America and enjoys the many and varied foods.

I experienced no negative sentiments from others while growing up—I just got on with things. I married my husband, Anthony, at 30, and we have two lovely children: Eleanor (12) and Fletcher (9). Both were delivered by C-section to prevent any issues for the pouch during childbirth. 

My job as an intensive care senior nurse is very demanding, involving 12-hour shifts spent mostly standing and walking around the ward. However, I’ve never had pouch-related restrictions and haven’t felt the need to share my pouch status with colleagues.

In terms of function, I feel my pouch works pretty well: 6–8 bowel motions per day depending on food and drink, and only very occasionally needing to get up once in the night. I don’t experience urgency. I have a pouchoscopy every couple of years and am currently under the care of Dr Catherine Ellard. As far as I know, there are limited pouch-support networks in Australia, and I really value the online resources on pouchsupport.org and the J-pouch Support (UK specific) facebook group. I’ve already benefitted from discussions about hydration and even followed the recipe to prepare the St Mark’s rehydration drink—for the first time in 38 years of pouch life!

Welcome to this super supportive group Jenny and thank you for letting us tell your remarkable story.  

David Davies 
RLG Chairman