Attend our regular monthly J-pouch forum on zoom
A quote from a first time attendee “…Thank you – I did enjoy the session.
I’d forgotten that in certain circles I am perfectly normal!“.
Updated 16 November 2023
The latest of the RLG zoom pouch forums took place on Monday 6th November. These popular and informal get togethers have been taking place since July 2020 and attract a regular crowd plus some returnees and a few new people. There is no agenda or script; the topics are decided on the night depending on whatever people want to discuss. The ambience is welcoming, relaxed and supportive and acknowledges the fact that pouchees are rare, we have been through a lot, and we share a common bond.
The November forum considered pouch-related issues as diverse as :-
- frequency of pouchoscopy
- treatments for pouchitis
- what to say to medical professionals who are not familiar with the pouch
- the benefits of the newer “biologics” medicines
- natural cures for pouchitis.
There was an amusing explanation of “pebble dashing” for our American friends who are regular attendees (they understood immediately) and a regular slot from a gentleman who had his final take down operation some three months ago and is keeping us updated on his challenges as his body adapts to its new plumbing.
Finally, and perhaps most gratifying, there were two people considering pouches and who asked whether we would choose a pouch if we had our time again – which led to some excellent reflections on quality of life with a pouch.
These meetings are friendly and supportive and make for a relaxed hour or so with other pouchees to discuss serious and not so serious pouch-related topics – all from the comfort of your own home.
The next meeting is on Monday 4 December at 7:30 pm and pre-registration is essential (see link below) to receive the dial in detail. Hope to see you then!
“This being the last RLG zoom of the year, and being the festive season too, the attendees are encouraged to wear their xmas hats and jumpers etc. and have a suitable beverage on hand for a festive toast!”
See pouchsupport.org/events/ for details of all events or click image below to register.
Updated 7 December 2022
The last RLG pouch forum of 2022 took place on Monday 5 December with approximately 20 pouchees dialling in for an enthralling zoom session. These informal chat events have become a regular in people’s diaries and it was good to see so many familiar faces and a few new faces too. The discussions were wide-ranging and focussed on real pouch problems and their resolution. The topics included:
- Vitamin B12 deficiency and a GP letter to get testing and treatment for pouchees
- Access to the St Marks pouch nurse specialists for pouch-related advice
- Symptoms and treatment for blockage
- When you should go to hospital with a blockage
- Prevention / reduction of gas
- Food supplements and whether they work or not?
- Probiotics for treatment of pouchitis?
- Use of catheters and/ or warm water flushing for complete pouch emptying
- How to reduce or stop having to get up in the night for a pooh
- Foods to avoid for Christmas dinner!
There were lots of solutions, including one pouchee who had turned around a problematic pouch with a strict regime of pouch care, including a warm water enema to (further) liquidise the pouch contents in the morning and at night, using a medina catheter to fully empty, 2 sachets of Vivomixx per day (other probiotics are available) and green tea supplements (for their apparent anti-inflammatory properties). Not only is his pouch now healthy, but his doctor complimented him on having the healthiest looking pouch he had ever seen!!
Time ran out for the last topic of the day, which was how to avoid night time leakage and seepage, so we will discuss this at the next RLG zoom forum, which will take place on Monday 9 January 2023. Attendance is free, but please remember to register beforehand at pouchsupport.org/events to receive the link to join.
Wishing you all a Happy Christmas and a healthy and prosperous New Year, looking forward to meeting again on the 9th January.
Our regular monthly pouch forums take place on the first Monday of every month at 7:30 pm (London time) on Zoom. Meet online with other pouchees for friendly pouch related chat!
If you have a pouch or are considering pouch surgery, and have not attended one of our regular pouch forums, then you are missing a fantastic opportunity to “meet” with other like minded individuals, to discuss and compare pouch related experiences and challenges.
We welcome regular and new attendees, ranging from people with “new” pouches, “old” pouches and “yet-to-be” pouches. (Two of our regular attendees have pouches over 40 years old, and were number 9 and 10 of the first pouches ever created!). We have attendees from all over the UK and some from further afield, including Europe and North America.
Subjects discussed are varied, including diet, medication, leakage, butt-burn, frequency, travel, catheters, recommended blood tests, dehydration…the list is endless. All those delicate subjects that you may not wish to discuss elsewhere,
The reality is that we are still a rare breed, and a common reaction from first time attendees is that they have never previously met or had the opportunity to talk to someone else with a pouch. A quote from one attendee “Thank you – I did enjoy the session. I’d forgotten that in certain circles I am perfectly normal!“.
So don’t be shy! Go to pouchsupport.org/events to register for the next scheduled pouch forum.