J pouch forum update and register for next event

J Pouch forum update and register for next event

Red Lion Group chairman, David Davies, reports on our most recent online J-pouch forum

The latest RLG pouch forum took place on Monday 1 April at 7.30pm via the magic of zoom and with IT guru and RLG Membership Secretary Gary Bronziet pressing all the right buttons.  RLG Chairman David Davies was in the Chair and welcomed 20 or so pouchees and potential pouchees who were joining from locations as far afield as Texas and New York to the West, Moldova to the East and Bolton from oop north.  The great advantage of online meetings is that people can join from the comfort of their own homes without having to travel. 

David emphasised that the meetings were completely confidential with no recordings and no minutes and are a “safe space” to discuss pouch-related matters in confidence.  There is no prior agenda – the topics are proposed on the night.  

A lively meeting ensued with people contributing to vibrant discussions on a wide variety of pouch-related topics. 

Treatments for butt burn, how to reduce night-time frequency of bowel movements, what to do if your surgeon (who is not a pouch expert) recommends that your 30-year old pouch be disconnected. 

The virtues of having the second and third operations conducted in one go (proposed by one attendee who was concerned about recovery times alongside work commitments). 

We discussed potential correlations between having a pouch and getting pancreatitis (inflammation of the pancreas) [for information, there are no known correlations for the pouch per se, but if you have had UC then you are more likely to get pancreatitis apparently].

We also touched on the benefits of the FODMAB diet for encouraging good pouch function and the different types of pouch irrigation methods that are available to enable pouchees to fully empty. 

One attendee is contemplating a pouch after having their large intestine removed and was greatly impressed by the support and the friendliness of the meeting and the amount of relevant and real-life information shared by the participants, which will help them with their decision.  All in all, a very busy and informative evening!

The next RLG pouch forum will take place on Monday 6 May (also a bank holiday) starting at 7.30pm.  Please save the date in your diaries and register beforehand below to receive the dial in details. 

With thanks to all the attendees for your many and varied contributions.

David Davies
RLG Chairman

PS. See pouchsupport.org/events for details of other upcoming events, including the webcast featuring Professor John Nicholls on Tuesday 16th April.