Events Register now for next Pouch Open Forum on 7…
Published on 4 August 2020 – David Davies Chairman Red Lion Group
The second in the series of zoom get togethers for pouchees took place on Monday 3 August at 8pm. Organised by the Red Lion Group, the forum offers the opportunity for pouchees, their family and friends to get together via the wonders of zoom to discuss common challenges and learn from each other’s experience in dealing with pouch-related issues. One of the challenges for the organisers is to ensure that people have the chance to be heard and we therefore divided the audience into male and female sub-groups for the discussions, then re-grouped for a summary session at the end.
Once again, the event attracted a good number of pouchees and everyone contributed in a lively discussion of various pouch-related issues, including:
- How to avoid (or reduce) night time BMs (and therefore reduce fatigue from losing sleep):
- Use of a catheter to achieve complete emptying before bed
- Medications and their use to prevent/reduce nightime BMs. Windeeze was one suggestion to reduce gas in the pouch
- Alternative therapies – one person recommended a few drops of CBD oil tincture under the tongue before bed time.
- Diet and the best diets to use to achieve weight loss along with a healthy pouch
- The benefits of the MacDonalds diet for pouchees!
- The St Marks pouch nurses and how to contact them
- Probiotics and the high cost of VSL#3. Many people use probiotics and feel they help keep their pouches healthy. Uchu Mead – Head of Pharmacy at St Marks Hospital – commented at an Information Day in 2019 that the best time to use VSL#3 was just after a course of antibiotics for pouchitis, when the antibiotics have disrupted the pouch bacterial community. However, a number of the attendees use VSL#3 on a daily basis, which is expensive. VSL#3 is not on the prescribers list, but pouchitis is now a recognised condition which GPs can find on the NHS website.
- It was pointed out that at the Information Day it was mentioned that the probiotic called Vivomixx, claims to be the only product that uses the original VSL#3 formula, and the current product called VSL#3 cannot use the original formula. You can read about this interesting patent battle on Google if you are interested!
Huge thanks to Theresa Parr and Christopher Browne for moderating the sessions and to Gary Bronziet for arranging the facility and pressing all the right buttons. And thank you to all who took time out to join the event and contribute to the lively discussions.
You can register for the next forum on Monday 7 September at 8:00 pm by clicking the register now button below.
(If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 7 September 2020).
Register NowPublished on 5 July 2020.
First Red Lion Group Zoom Forum “a great success”!
The recent “Zoom into Summer” series of presentations was a great success and demonstrated the power of the Zoom platform to facilitate real time, “face to face” interactions. So much so, that those clever people at Red Lion Group decided to trial a new concept; a zoom “coffee morning” to mimic the breakout discussion sessions that have proved so popular at the Information Days in the past. The first of the “Zoom into RLG Forum” took place on Thursday 2 July and was attended by 20 RLG members. The group was divided equally into men and women, who discussed pouch-related issues in their respective groups for 40 minutes or so and then came together to compare the topics. The two facilitators were RLG stalwarts Susan Burrows and Christopher Browne and our thanks to them for their inspired leadership.
The event was a resounding success. Topics discussed by the men included seepage, the use of pads available on prescription, eating meals early in the day to prevent night time BMs, use of loperamide for the same, how to mask the smell of BMs, key hole surgery, support for remote pouchees (from Fife!), dysfunctional pouches, feeling of incomplete emptying, catheters and, amidst some hilarity, the challenge of weeing without poohing whilst standing up when on a night out.
Meanwhile, the ladies discussed topics as varied as sore bottoms, pouchitis, the use of catheters, the question of whether or not to choose a pouch operation compared with a permanent ileostomy and the ingenious suggestion of a motion-sensitive night light to illuminate the route to the toilet when a pouchee needs to go in the night in an unfamiliar place.
We pouchees are united by a common journey and shared experiences which are unique to our circumstance. There is reassurance and comfort in coming together to discuss these common challenges and issues and especially to find humour in adversity when the occasional “slip up” occurs. The Zoom platform allows people to “meet” on video calls and talk as a group as if we were in the same room, to effectively mimic the Information Day breakouts.
The event was a great success with attendees unanimously voting for another such event in one month time. The next forum will take place during the evening of Monday 3rd August, starting at 8pm. To register to attend the forum, click on the register now button below. If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 3rd August 2020.
Thanks again to the facilitators, Susan and Christopher, to Gary Bronziet for providing the technical input and to all the delegates who kindly joined this first event.
David Davies
Chairman – Red Lion Group
We look forward to receiving your registration and seeing you at the Forum. You will be sent the Zoom invitation in due course.
