Pouch forum update and register for next event

Review of latest Pouch forum and register for upcoming Forums and webcasts

Published 10 June 2021

June RLG forum – the best yet! – by RLG Chair David Davies

The series of RLG zoom forums 2021 continued with yet another riveting and rewarding evening of pouch-related chat with a group of like-minded pouchees, a potential pouchee and an ileostomist (just to mix things up a bit).  No ordinary ileostomist though (if there is such a person), this was Barry, the Chairman of the Inside Out Group of ileostomists affiliated closely with St Mark’s Hospital and a valued member of the wider patient community.  

The topics discussed were many and varied, and kicked off with a series of food / diet / nutrition expectations and recommendations for a pouchee eight months after reconnection.  There were excellent comments offered from the attendees in a supportive and constructive manner and which informed as well as supported the group.  Yet another example of how sharing experiences can reassure and support pouchees as they adapt to their new plumbing. 

One member asked about anismus and how she might identify other sufferers and make contact with pouchees with a similar problem.  It was suggested to ask a question of the affiliated J-pouch support (UK support) facebook group, but use more common terms that people might understand.  The J-pouch group has now exceeded 1,000 members and is the largest UK pouch community anywhere on the internet as far as we know.  The ex-head of the St Marks Hospital Biofeedback team, Ellie Bradshaw, will be presenting about bowel emptying issues (amongst other things) at a RLG webcast on 7 July.  

The disappointing news was announced that the medina catheter might well be withdrawn by the manufacturer / distributor (Wellspect) some time in the summer with a further 6-month supply available at current levels of demand.  Gary read out an emailed response from Wellspect which confirmed the news but said the company were actively seeking alternative manufacturers who could maintain continuity of supply. Peter, an RLG regular and medina advocate, voiced concerns and suggested there could be some design modifications to the current medina based on his experiences.  Any budding manufacturers out there?  

There was a discussion on which hospital a potential pouchee should attend for the second and third operations and what to expect in terms of recovery times from operations 2 and 3. This prompted the recommendation to go to high frequency centres with experienced surgeons and support specialisms such as dieticians, pharmacists and pouch nurse specialists.   Sascha also asked about the ileo-anal anastomosis* operation (currently being championed by Swedish surgeons) and an alternative to the IPAA operation (this was one of the topics discussed by Janindra Warusavitarne in a recent RLG webcast – recording available to members on the RLG website). 

(*In short, this is a direct connection of the ileum (small intestine) to the back passage, without an intervening pouch)

Thomas, a pouchee due to FAP, asked an intriguing question about the consequences of large bowel loss on the immune system, particularly for acquired immunity (for which the large bowel is strongly implicated).  This could also have links to disrupted immune systems generally and perhaps explains the apparent correlation between UC and arthritis.  It was agreed that a presentation from an immunologist with specific knowledge of UC and the role of the bowel would be of great interest.  

Mahmood asked what was the best barrier cream for pouchees, a question which led to an avalanche of answers, including calmospetine (available from US outlets via the internet – widely recommended but expensive due to postage), Bepanthen, anusol, sudocreme, Coloplast Comfeel and finally an absorbent lined dressing called melonin, which soaks up any seepage / leakage and keeps the bum clean and dry.   It was agreed that prevention was better than cure and to wash the bum after every pooh and then apply barrier cream to the clean, dry area rather than waiting for your bum to become painful.  

Cathryn asked a superb question which sparked great discussion – the topic of psychological support for patients going through the pouch series of operations and any tips for greater resilience to cope when pouch problems are getting you down. There was widespread acknowledgement of the mental stress of going through this series of operations and the need for support to ensure mental health is looked after as well as physical health.  Interestingly, PhD student Zeina Bushnaq will be reporting on the findings of her recent survey about this very topic on 11 August – one of the series of RLG webcasts for the summer (see website for details and to register).  Many RLG members participated in the survey and Zeina was very grateful to all the volunteers, hence is happy to come back and share the outcomes with us.     

There was much discussion of how pouchees cope.  Barry commented that you just have to get on with it, as many of us have found when waking up in the night after a significant leak episode.  There were some very personal comments about counselling and others talked about the importance of a supportive family and friends with whom the pouchee can talk without fear of ridicule or dismissal.  Gary mentioned Mr Yoran Inspector, the Head of the St Marks Psychology unit and recommended previous lectures he had given to the RLG members over recent years and which are available to download from the RLG website.  There was a general feeling that talking to other pouchees and comparing pouch-related experiences in a supportive way was a tremendous opportunity, which is what these zoom forums are all about. 

David closed the meeting with a thank you to all the attendees for their questions and contributions to a lively and thoroughly enjoyable session.  

The next RLG zoom forum takes place Monday 5 July and will be preceded by a short AGM, starting at 7pm.  Chairman David urged all members to attend to ensure quorum.  

The next RLG event will be the latest in the series of RLG summer webcasts, this time with newcomer Professor Ailsa Hart talking about inflammatory bowel disease and bowel surgery.  It takes place on Monday 14 June starting at 7.30pm.  

To register for future events, click HERE to go to the EVENTS tab on our website

David closed the meeting with a thank you to all the attendees for their questions and contributions to a lively and thoroughly enjoyable session. 

Published 11 May 2021

The latest in the popular and enjoyable RLG pouch zoom forums took place on 10 May.  A wide variety of pouchees and potential pouchees dialled in for informal, supportive and entertaining discussions of all things pouch, chaired by Roar editor Christopher Browne and with RLG membership Secretary Gary Bronziet pressing all the right (computer) buttons.  

The group welcomed a new member, Carole, a very recent pouchee, experiencing challenges that will be familiar to many of us including nighttime frequency, diet-related upset and transit time: “It was refreshing, reassuring and absolutely lovely to feel that my pouch and I belonged in your supportive community.  I am so appreciative of the discussion and all the helpful advice, comments and encouragement”.  

Topics included dilatation for blockage symptoms being experienced by a pouchee of 35 years, routine blood tests advised for pouchees, adhesions, use of catheters and how to make them more comfortable (aka amazing things you can do with insulation tape).  The embarrassment of using toilets in other people’s houses, dedicated toilets at home, the use of pungent sprays to mask smells.  Gary entertained the delegates showing a poignant advert for “Poo Pourri”!  It was a pleasure to welcome back Peter Zammit, the RLG regional representative in Essex and one of the first RLG members some 27 years ago.   Finally, another newcomer, Ashley, asked what to expect after take-down (closure of stoma) and received excellent and heartfelt advice from several of the attendees. 

Sense of humour warning – Only watch video if you have a twisted sense of humour like me! (Ed.)

The next forum will take place on Monday 7 June and attendees will need to register beforehand to receive the dial in detail.  We hope to see you again on the night.    Click on Register Now below to register.

In related news, Howard Bluston extended an invitation to all to attend the IBD Information Day scheduled for Saturday October 16^th.  And the IA pouch-specific subgroup held a virtual information day on Saturday 1 May, which is now available to download on the IA website.  

Finally, Christopher announced the next in the series of RLG Summer webcasts taking place next week, Wednesday 19 May featuring Professor John Nicholls talking about “Evolution of Modern surgery“.  You can register for that also by clicking on Register Now below. 

All welcome.  

David Davies

RLG Chairman 

Published 3 March 2021

Review of latest Pouch forum and register for next event on Zoom on Monday 5 April 2021

Published 3 March 2021

The latest Red Lion Group pouch support chat forum took place on Monday 1 March and was well attended with some 56 people registered and some 42 attending.  The attendees came from all over the UK;  a couple from mainland Europe and one lady dialling in all the way from New York State.  We also had another first with a mother and daughter attending the same event.  Tech expert Gary Bronziet pressed all the right buttons and session chairs Theresa Parr and Christopher Browne facilitated the discussions, which were both lively and varied.  

Topics covered by the ladies included avoiding and sorting out dehydration, the covid vaccine and pouchees; covid infections amongst pouchees, pouchitis and the use of biologics to treat pouchitis, tail pain, loperamide, pain generally and sex!  Topics covered by the men included a long discussion and presentation of catheters (medina, Bard urinary catheter and Aquaflush); doing sports with a pouch (golf, kick boxing, weight training and triathlons – not all at the same time)!  The transition from pouch back to stoma; the prevalence of pouch failure and resection; access to the St Marks pouch nurse specialists when you are not a St Marks patient;  probiotics and prostate cancer.   

As you can see a very varied set of pouch-related topics of interest to many pouchees and with practical tips and suggestions to add value.  These forums are free to attend and are informal opportunities for people to talk in an open and supportive environment.  The sessions are not recorded as the information shared is often of a sensitive nature.  So if you want to hear the discussions then please register and dial in for future forums.  

Review of latest Pouch forum and register for next event on Monday 1 March 2021

Published 2 February 2021

The latest Red Lion Group pouch support chat forum took place on Monday 1 February and was well attended with some 52 people registered for the event.  As per usual the tech whizz Gary Bronziet pressed all the right buttons and session chairs Theresa Parr (for the ladies) and Christopher Browne (for the men) facilitated the discussions, which were extremely lively and varied.  

Topics covered by the ladies included obstructions, leakage, pouchitis, irrigation, fistulas, probiotics and emotional support for pouchees along their journey.  By contrast, the mens group discussed Rifamixin for pouchitis, flushing pouches with warm water enemas, faecal transplants and the likelihood of them calming pouchitis, catheter use, strictures, probiotics, Vitamin D deficiency in pouchees, flushing out mucus from the unconnected pouch (to prevent pouchitis), increased transit time through taking movicol, wiping toilets and who does it in your house?, sharing a toilet in the home environment and dispute resolution tips, peristalsis and the causes of “gurgling”,  access to disabled toilets, radar keys and the perils of auto opening on disabled toilets!  

As you can see a very varied set of pouch-related topics and it is always interesting when the groups come together to pick out the topics of most interest for further discussion.  And there are always practical tips and suggestions which add to the value of such group chats.  I learned, for example, that Costco sell a toilet seat with a simple quick release mechanism for easy and thorough cleaning (a MUST for pouchees)!  

These forums are free to attend and are informal opportunities for people to talk in an open and supportive environment.  The sessions are not recorded as the information shared is often of a sensitive nature and we want people to feel comfortable that there will be no recording.  It was satisfying indeed to hear during the evening from people who have had pouches for many years, but who had received no patient-based support up until they became aware of the Red Lion Group forums.   

The forums run on the first Monday of every month; the next will be on Monday 1 March.  Please make a note to register beforehand if you wish to attend so we can send on the dial in details.  See you then!  

David Davies
RLG Chairman

Make your first New Year Resolution to attend RLG Pouch Forum on 4 January 2021

Re-Published on 30 December 2020

The latest in the series of RLG pouch support internet chat forums was held on Monday evening, 7^th December.   Attracting some 20 attendees, the evening was the latest opportunity for pouchees to “get together” from the safety and comfort of our own homes and talk about common pouch problems and challenges and to share tips and stories.  The evening was choreographed by Gary Bronziet (Membership Secretary), with Michelle Martin (Committee member) and Christopher Browne (Editor in Chief of Roar! magazine) supporting the discussions.  Indeed, the discussions were so lively that we decided not to split into male and female groups, but to stay together as one group all evening.

The group discussed topics which had arisen on recent pouch forums and also personal questions and items tabled by the attendees on the night.  These included a fascinating expose of the dangers of apple peel in causing the gut to go into spasm.  Christopher explained the problem is the very high level of fibre in the peel, which overloads the small intestine in pouchees.  One solution is to avoid them altogether, another was to boil the skins to degrade the fibrous material and finally to chew chew chew!   This led on to a general discussion of other foods which can cause problems, including mushrooms, chocolate, tomatoes, orange pith and the gerkins in a MacDonalds burger (especially if you are using a medina catheter to empty your pouch). 

The group welcomed a newbie, with a J-pouch created as a result of FAP in February of this year.  An ultra-marathon runner before his operation, he was relatively fit and otherwise healthy at the time of his operations (unlike many of us who had UC).  So he has had a relatively smooth recovery, but is still struggling with night time bowel movements and having to get up two times each night.  Relatively common amongst pouchees, there were a number of solutions offered including stopping eating early in the day (he stops at 1600 hours each day!), use of Imodium and timing – 30 minutes before the last meal, correlating foods which cause more night time BMs and ensuring full emptying before retiring.  The benefits of the medina catheter were discussed as a means to fully empty one’s pouch before bed time in 3-5 minutes compared with sitting on the toilet for 20-256 minutes to be sure the pouch is empty. The medina offers the opportunity to flush the pouch contents through with warm water, which some pouchees find helpful.  Although another comment was that the tubing can be hard when cold, the holes can nip the anal area when being inserted and the holes can be blocked by foods which do not break down in our remaining gut (such as the MacDonalds gerkin – who knew!).  It seems the medina is a bit like marmite, you either love it or avoid it (or as one pouchee said “I’m not ready for it yet”, which resonated with me).  There is an alternative to the medina catheter called the aqua flush system which Committee member Theresa Parr was keen to champion.  More expensive than the medina but with some design improvements, it is available on prescription from your local GP.  Mind you, given the postcode lottery for prescription of VSL and biological anti-inflammatories, I think it’s safer to say that the aqua flush system might be available on prescription, but be prepared to make a firm case for it when you visit the GP.  

The frequency and need for medical check ups for pouchees was discussed.  It became apparent that many of the group did not have regular (annual) check ups and were not chased by their surgeons to attend follow ups.  By contrast, others attend every year, whether they have any problems or not.  One attendee commented that they had some dysplasia in their rectal cuff so felt that a regular check up was justified to check that the dysplasia has not developed into something more sinister.  Many pouchees rely upon the expertise and experience of pouch nurse specialists, where such staff are employed. These specialists are very much on the front line of pouch care and are able to discern very quickly if an issue needs further investigation or resolution by a consultant.  They can also offer simple tips or reassurance if indeed the problem is not so urgent.  Many centres in the UK do not have pouch nurse specialists; in which case the nurse specialist is usually a stoma nurse.  However, this is not ideal.  

Other topics included the safe limits for lifting weights generally and specifically in relation to exercising in the gym.  Theresa Parr, a retired NHS physiotherapist was able to provide informed comment that the weight is not so important as the way in which you lift the item.  Safe practices such as keeping the back straight and not stretching out when lifting were more important in terms of keeping healthy than the weight per se. 

Zeina Bushnaq provided a very positive update on her PhD survey of pouchees, ileostomists and potential pouchees to identify opportunities for greater emotional and psychological support.  Thanks to the help of the Red Lion Group, Zeina now has 84 completed surveys from pouchees, which is a fantastic total.  She thanked everyone who had taken the time to complete The survey.  

David Davies, RLG Chairman, announced that he was in discussions with a company wanting to run a clinical trial of a new biologic drug to treat recurrent pouchitis.  He will be speaking with them later this week and will hope to be advertising the trial on the RLG website and with emails to members and through social media outlets once the trial was up and running. 

Finally, David raised a glass to wish everyone a healthy and happy Christmas and a Happy New Year, in spite of the continuing covid restrictions.  

The next online pouch forum chat night will be Monday 4 January 2021 starting at 8pm.  Please click “Register Now” link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.  

David Davies
RLG Chairman

Re–Published on 01 December 2020

Register now for next Pouch Open Forum on 7 December 2020

The latest in the series of Red Lion Group Pouch Support chat forums via the wonders of zoom technology was held on Monday evening, 2 nd November.   Attracting some 30 attendees, the evening was another riveting and thoroughly enjoyable opportunity for pouchees and potential pouchees to talk about common problems and challenges and for the more experienced pouchees to share their tips and recommendations to help the less experienced pouchees.   The evening was choreographed by Gary Bronziet, our very own IT guru (and Membership Secretary), with Theresa Parr (Minutes Secretary) and Christopher Browne (Editor in Chief of the excellent Roar! publication) chairing the female and male breakout groups respectively.  

The small but perfectly formed male group enjoyed an excellent discussion, including a variety of topics such as cuffitis, the diagnosis of crohns versus ulcerative colitis, prostate gland examinations, symptoms of blockage and the influence of adhesions in causing blockages to be more likely to occur, the foods that cause blockages and cures.  We welcomed a new pouchee of only 6 weeks, who was keen to hear personal stories and frustrations to reassure themselves that they were doing OK (indeed he is doing very well). The ladies group included two RLG members who were the 8^th and 9^thpeople respectively in the UK to have their pouches created by Sir Alan Parks at St Marks some 43 years ago!! A very warm welcome was extended as you can imagine.  

The ladies session covered topics suggested by the attendees, including loperamide usage, diet, skin care, mental health issues, lifting and exercise and blockages.  Regarding lifting, one of the attendees, Linda, provided the following information after the event: 

Professor Bo Shen recommended in his book “Pouchitis and ileal pouch disorders” that pouchees “…should not lift more than 20-25lbs as well as avoiding any postures during exercise that may assert pressure or torsion at certain sites such as tip of the pouch, the anastomosis site and previous stoma site.”

On the topic of mental health, Linda also commented that her local hospital ran a six-week (one night each week) course on chronic stress management, which was found to be beneficial.  Another potential topic for the next forum.  

In summing up, Christopher Browne appealed for more personal stories of mental health in pouchees – an opportunity to share your own story (anonymously or not, as you wish) in an article Christopher is writing for the next edition of Roar!  If you have a story to tell and would like to submit, then please send to Christopher at cbrowne@brownmedia.co.uk. 

Finally, David Davies (RLG Chairman) extended thanks from a PhD student, Zeina Bushnaq, who is conducting a survey of mental health and psychological support for pouchees during their surgical journey.  Thanks to a mention during a previous forum and other posts on social media she has managed to recruit 74 pouchees for the survey, an excellent response for which she is very grateful.   Thank you to all who took part.  We will hope to publish the outcomes in due course on the RLG website. 

These RLG monthly chat forums are very well appreciated by all attendees and have been a noteable highlight amidst the general covid gloom.  In particular, for pouchees who are based in more remote regions and for whom there isn’t ready access to other pouchees. Hopefully these sessions are helping those people to feel less isolated. 

The next Red Lion Group zoom chat will take place on Monday 7 December starting at 8pm.  Please click Register Now link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.  

David Davies

RLG Chairman

Re–Published on 25 October 2020

Registration is now open for our next Open Zoom Forum on Monday 2 November at 8:00 pm. Open to all pouchees, prospective pouchees, family and friends – we split into ladies and gentlemens break-out groups so you can talk openly and share your experiences with other pouchees.

A quote from an attendee after recent meeting –

“Thank you – I did enjoy the session.  I’d forgotten that in certain circles I was perfectly normal!“

You can register for the next forum on Monday 2 November 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 2 November 2020).

Read about previous sessions and examples of topics discussed below.

Re–Published on 23 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).

Published 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 3^rd 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.