Attend our regular monthly J-pouch forum on zoom

See report on most recent meeting below from RLG Chairman David Davies (Updated 7 December 2022)

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 or click below to register for the next scheduled pouch forum.

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.

David Davies
RLG Chairman