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J Pouch Support facebook group hits 1700 members

J Pouch Support facebook group hits 1700 members

The J-pouch support (UK specific) facebook group is a super platform for the sharing of questions, comments, information, tips and advice on pouches.  It has been in existence for 10 years or so and has never been so popular.  We posted a story of the 1,500th member, Amanda Nash, not so long ago.  Well, the membership has just recently passed 1,700, reflecting the value of this j pouch support facebook group to pouchees and their loved ones.  

The 1,700th member is James Miller and here is his story:

James Miller – J Pouch Support Facebook group 1,700th member

I’m a specialist in data and analytics and currently leading a fast-growing management consultancy. It is a busy and full-on job, growing and running the business.
I stress this, as I was so sick before I had my ileo-anal pouch, I wasn’t sure I’d ever work again. Thankfully, my pouch has enabled me to live as normal a life as possible, and I’ve been determined to live it on my own terms.
I live in Buckinghamshire with a very understanding wife, two teenagers (less understanding) and a dog (who keeps me fit). Hobbies wise, I love exercise, a bit of cycling, gym stuff, and time in the garden.
I was originally diagnosed with Ulcerative Colitis in 2010, and none of the standard medications worked, apart from steroids. After 4 years on and off steroids, and essentially in a constant state of flaring, I was very ill, tired, and at my wits end.
In 2014 I elected to have pouch surgery after deciding against biologic medication. I was taken through the various risks and considerations by Janindra Warusavitarne at St. Marks Hospital and saw that I was in expert hands. St. Mark’s has been a feature of my life for 15 years, and the team there continues to provide amazing support. I’m happy to travel the 40 odd miles to my appointments, despite the London traffic!
I chose a pouch over a stoma as I have always been sporty and felt that with my hands full with two small children (at the time), I didn’t fancy having an external bag.
My surgery was completed over the course of three ‘sessions’ and full pouch connection was made in December 2014.
I’ve lived with the pouch for 10 years now, and for most of that time things have been great. They are certainly better than before the surgery and I’m much fitter overall now than I was in my mid-thirties.
I have had a couple of cases of pouchitis, which were well managed by antibiotics. My pouch function has changed, and it is slightly less effective, but still very manageable. I’ve also discovered that psyllium husk works wonders for my pouch function.
When I had my pouch I was told that like a baby it can be irritable and prefers routine, which was excellent advice.
Over the years I’ve helped a few people considering surgery answer their questions about the j pouch and tried to show them that it can actually be a very liberating surgery.
I’ve joined the group as I thought it was a good idea to finally join the wider pouch community after a decade of living with one.

Thank you so much for taking the time to pen your story James and very best wishes for continuing good pouch health. 

David Davies
RLG Chairman and Facebook group administrator


The J Pouch Support (UK specific) facebook group is a private group that welcomes members from all over the world. If you are not already a member you can submit a join request by clicking here.


News

Celebrating membership milestone for J Pouch support facebook group

Celebrating membership milestone for J Pouch support Facebook group

Amanda Nash does not give much away on her Facebook profile.  She is a Senior Project Manager for a global software development company and lives in South Lincolnshire.  But she has something very special which marks her out as “rare” and which identifies her as one of us.  Amanda has an ileo-anal pouch which she has had for 29 years and for most of that time she has cracked on with life without any non-medical support.  She is a member of the Red Lion Group and it was there she noticed references to the J Pouch Support (UK Specific) facebook group and decided to join up. As chance would have it, Amanda is the 1,500th member of this small but perfectly formed group and offers us the chance to celebrate this membership milestone for this super-supportive group of pouchees.

Amanda writes that she has indeed been on a journey but considers herself very lucky and that she and her pouch have had many happy years together and continue to do so.  She comments that blips are to be expected of course and when they do happen it is great to be a part of a supportive community of fellow pouchees who can help out with support and advice.  Amanda is full of praise for the facebook group – “the support from the group is already wonderful and matches my current thoughts – I try to self-care when I can and only seek help when absolutely needed from the NHS – who have been amazing.  I am a very grateful patient for them giving me my life back”.  She adds that the group helps to keep her positive and strong, a fitting and lovely tribute to this special community.  Amanda lives in South Lincolnshire, an area of the country where pouch surgery is no longer undertaken, with presumably a lack of surgical hands-on knowledge about long term, post operative pouch care.   This makes the facebook group all the more valuable in providing hints and tips and providing reassurance that Amanda and pouchees everywhere that they are not alone.


Amanda Nash – 1,500th member!

About the J Pouch Support (UK Specific) Facebook Group

The J-pouch support (UK specific) group was founded some 10 years ago by two pouchees – Sam Wainwright and Sahara Fleetwood-Beresford.  Sam is still a moderator and was joined some 7 years ago by Gary Bronziet and David Davies, who are respectively the Membership Secretary and Chairman of The Red Lion Group, a pouch support charity which is very closely affiliated to St Marks Hospital in London, where the operation was first conceived by Sir Alan Parks and Professor John Nicholls.     With over 1,500 members, the group continues to grow at a pace and is now the largest pouch support Facebook group outside of the United States. 

The name J Pouch Support (UK Specific) is just a little misleading as we have members with all pouch configurations (W-, S- and J-) and although the name implies membership is limited to UK-based pouchees, in practise the group has a truly global membership, not unlike the Red Lion Group. Not surprisingly, the most common location for members is the United Kingdom but we have members from all over the world including USA(54), Ireland (26), Italy (9), Australia (6), Canada (6), India (6), South Africa (5), Gibraltar (4) and Switzerland (4)


J Pouch Support (UK Specific) facebook group membership hits 1,500 in April 2024

Demographics and activity

There are twice as many women than men in the membership and the demographics show that two thirds of members are aged between 35 and 54.  In the last 60 days, at time of writing, there had been more than 2 posts per day with 1,565 posts from 1,171 active members.  This gives a phenomenal activity level of over 70%, reflecting the very high engagement amongst this close-knit group.  The most popular days for posts are Tuesdays and Thursdays and the most popular times are 8am on Monday, Tuesday, Friday and Sunday and 7.30pm on Wednesday, Thursday and Saturday.   Any correlation to the Coronation Street schedules is (probably) mere chance, but you never know! 

The J Pouch

Pouch surgery involves the surgical re-plumbing of our bowels following life-saving surgery and which avoids the need for a permanent stoma and allows us to pooh via the bottom in the normal way.  The outcomes of surgery are variable and hence the appeal of advice, guidance and support for pouchees and potential pouchees, particularly for members who live in the more remote areas where they might never have met another pouchee and where the medical professionals might not know much about pouches, let alone have the detailed experience and knowledge required to resolve common pouch issues.  The group is hugely supportive and kind and very well informed from their own personal experiences.  Every new member receives a personal welcome message which is tailored to their personal pouch circumstance.    

In recent years Gary Bronziet has added an option to view the Facebook Group activity directly from the Red Lion Group website. See pouchsupport.org/forum. However, to post to the group, or respond to posts, it is necessary to submit a join request to the group. (It is not necessary to be a member of the Red Lion Group to join the Facebook Group (and vice versa!).

We look forward to many more years of growth and to many more years of pouchee support and advice via this very special group.

Welcome to Amanda and here’s to the next 1,500 members! 

Best wishes

David Davies
Gary Bronziet
Sam Wainwright

Facebook


Click on button to go to Facebook group and submit a join request.


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