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Events

Kangaroo club information day on 16 October 2021

A reminder of a terrific event coming up in the post-covid pouch world – the Kangaroo Club is holding a real live face-to-face Information Day in Oxford on Saturday 16 October (with internet link for those who wish to watch online).

The event is open to non-members and is FREE (but they will be asking for a contribution to cover lunch).

Pre-registration is necessary by sending email to info@kangarooclub.org.uk

The draft agenda and full details can be downloaded by clicking below.

download agenda

News

Ulcerative Colitis with pouch surgery

Ulcerative Colitis with pouch surgery

Did you have pouch surgery for your ulcerative colitis and are now struggling with flare ups? Have you tried antibiotics, but they don’t seem to work for you?

If you have pouchitis and experience symptoms like abdominal pain, you may be eligible to take part in a new clinical trial at MAC. If eligible you will receive up to £1,135 for your time and commitment.

Register your interest today!

Visit: https://bit.ly/3BAyeQZ

Text: PAIN to 81025

Call: UK Freephone 0800 121 6401

News

Are you getting enough hydration? (How to make St.…

Are you getting enough hydration? (How to make St. Mark’s solution)

With the current amber heat warning in the UK, its important to ensure that we are getting adequate and appropriate hydration. For many years, St. Mark’s has recommended a particular formulation for pouchees and ostomates.

(Updated 2 September 2021)

St. Mark’s solution is a potassium-free glucose electrolyte mix commonly referred to as an oral rehydration solution (ORS). It is used for the management of short bowel syndrome caused by surgical removal or congenital disease of the small intestine. St. Mark’s solution may be recommended by your doctor or dietitian if you have a high pouch output.

Due to this complex condition you may not be able to absorb enough water, vitamins, minerals, protein, fat, calories and other nutrients from food whilst on a normal diet. If you are not absorbing enough fluid you may experience a high output from your stoma.

If your output is high and you are losing more than 1500mL per day from your pouch, you are at a greater risk of becoming dehydrated. To prevent dehydration you may be advised to drink 1 to 3 litres of ORS solution, sipped throughout the day. 

How to make St. Mark’s solution 

All ingredients for St. Mark’s solution can be bought from supermarkets or pharmacies for less than a single prescription charge.  The ingredients need to be dissolved in 1 litre of cold tap water  The prescribed amount should be sipped throughout the day The solution must be thrown away within 24 hours and a fresh solution should be prepared the following day . The solution may taste salty but can be improved by: 

  • being stored in the fridge before you drink it, so it is chilled  being frozen and taken as slush ,
  • being sipped through a straw ,
  • adding a small amount of squash, fruit juice or cordial.

These adjustments are best added while making up the solution rather than adding to each glass, to ensure the salt content remains high

Ingredients for 1 litre batch:

  • Glucose powder (20g – 6 teaspoons)
  • Table salt (sodium chloride) 3.5g – 1 level 5ml. tea spoon
  • Sodium bicarbonate or sodium citrate 2.5g – heaped 2.5ml teaspoon 
St. Mark’s ORS ingredients

Managing your pouch output

Drinking too much ordinary fluid will increase your pouch output and make you dehydrated. When it is hot, we sweat and lose salt and fluid from the body. In this situation people with a high pouch output are more likely to get dehydrated and you may find you need to drink more electrolyte mix to replace these losses.

Speak to your doctor or dietitian for advice on increasing the amount of daily St. Mark’s solution you are drinking.

You can reduce your pouch output by:

  • Limiting the amount of ordinary fluids that you drink (for example fruit juice, squash, fizzy drinks, water, tea, coffee) to about 1 litre (about 6 cups per day)
  • Drinking a rehydration solution like St. Mark’s solution electrolyte mix to help your body absorb fluid and salt
  • Increasing your salt intake
  • Reducing your fibre intake

If you need more information, please talk to your doctor, specialist nurse or pharmacist.

Events

St. Mark’s hospital clinical services at Northwick Park, Central…

The latest in the Red Lion Group Zoom into Summer webcasts continued last night (June 28th 2021) with an excellent presentation by Jason Bacon, CEO of the St Mark’s Foundation.  The St Mark’s Foundation is a non-NHS charity linked to St Mark’s Hospital and who raise money to support fundamental research and clinical work being conducted at this centre of excellence for bowel surgery.  The Foundation raises approximately £2m every year for this tremendous cause and Jason has regular meetings with the clinic staff to understand their needs and how the funding should best be directed.  The Foundation also delivers a huge amount of training resource to the St Mark’s Academy.  

Jason spoke about the disruptions caused by COVID, with surgery being stopped at St Mark’s as Northwick Park was transformed into a front-line covid hospital, including the St. Mark’s Frederick Salmon ward. The pouch nurses and other specialist staff were relocated to Central Middlesex Hospital and with the reality that only very urgent outpatient cases could be seen. 

The staff remain at Central Middlesex Hospital and this might be a permanent move but no one is sure about this at the moment.  The restrictions are more relaxed so the pouch nurses have been able to expand access to their levels of support for pouchees, and potential pouchees. 

Jason was full of praise for the multi-disciplinary specialist skills which are integrated and available to provide thorough care to pouchees before, during and after their surgical journey and this is recognised by the fact that 60% of St Mark’s patients are tertiary referrals (in other words they are patients who are referred from other hospitals).    

Central Middlesex Hospital is a modern facility with excellent parking for those travelling by car and an excellent local bus service with a sub-depot located right outside the hospital.  

Every cloud has a silver lining and Jason spoke warmly about the skills developed as a result of adapting to the new challenges of covid, in particular the conduct of outpatient consultations over the internet via zoom calls.  Zarah Perry-Woodford will be speaking on this topic in more detail during her RLG Zoom lecture in September (date to be announced). 

Jason was also able to offer informal comment and advice on the availability of medina catheters after the current supplier withdraws the product.  RLG will be following up on this on behalf of our members.  

The next in the series of Summer lectures takes place on 7 July with Ellie Bradshaw talking about the importance of full emptying on pouch health and function.  Until recently, Ellie was a specialist nurse in the Biofeedback Unit at St Mark’s, so she has a huge amount of knowledge and expertise and is an engaging and entertaining speaker. 

You can see a full recording of the Jason Bacon webcast and register for upcoming events at https://pouchsupport.org/events


David Davies
(RLG Chairman)

Events

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 16th.  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, 7th 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 8th and 9thpeople 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.

Representative screen image of Zoom meeting

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.


Events

Professor John Nicholls “zoom into summer” webcast

Next Wednesday 19th May 2021, you have the opportunity to hear from one of the foremost experts on the ileoanal pouch worldwide. Professor John Nicholls will be the speaker on the next RLG Zoom into summer webcast!

John Nicholls is Emeritus Consultant Surgeon to St Mark’s Hospital, London and Visiting Professor at Imperial College, London. He has made contributions to colorectal surgery in ulcerative colitis, rectal cancer and anal disease with over three hundred publications and four books

Many of you will know Professor Nicholls from personal experience. For those of you who have had your pouches for some time, there is a good chance that you were fortunate to have had your pouch surgery performed by him.

For those less aware – the ileoanal pouch as we now know it was first described in a seminal publication in 1978 in the British Medical Journal in an article by Sir Alan Parks and a young John Nicholls titled “Proctocolectomy without ileostomy for ulcerative colitis“.

The paper described a new procedure which they had pioneered and which we now refer to as an “internal pouch”, “J-Pouch“, “S-Pouch” or “ileal pouch–anal anastomosis (IPAA)” and which has since changed many of our lives and binds us together as a group.

At the time, they had performed only a handful of operations and the paper described the procedure and the outcomes to date. Now, over 40 years after that publication and many 1000’s of successful operations later, you have the opportunity to hear from the man himself.

Next week, on Wednesday, May 19th at 7:30 pm, we are privileged to have Professor John Nicholls as our guest speaker. Don’t miss this opportunity to hear from him and participate in the Q&A session which will follow.

We are also privileged to have Professor Nicholls as a patron of the Red Lion Group.

You can download that historic paper below.

Parks Nicholls Paper 1978
Download Now!

To register for Red Lion Group Zoom into Summer Forums and see recordings of past events, click here

Stories

Mind over matter

Mind over matter

They say buying a property, getting married and having an operation are the three most important events in our lives. But how many of us actually prepare mentally for these experiences? Roar! editor Christopher Browne looks at how a group of pouchees dealt with their illnesses before, during and after surgery

Just how fit are you? Or is fitness rather low on your list of priorities?

When faced with this question, I have no doubt most of you, like me, instantly think of physical fitness ie activities such as a morning or evening run, a swim or a bike ride, some regular indoor exercises perhaps or a game of tennis or golf.

Few – if any of us – think of mental fitness. 

Yet our mental approach is as important to our well-being as our physical one. Some would say more so. For how can you perform an everyday task without putting your mind to it? The answer is: “You can’t”.

The same applies to illness. How can you cope with a debilitating condition like ulcerative colitis or FAP without trying to control or combat it? Once again the answer is: “You can’t”.

Apart from pain and emotional distress, there’s another less predictable element that can help or hinder us when we are unwell and that is our psychological make-up or to use a more commonly used phrase “mind over matter”. 

But then how many of us can truly say they consciously thought about their mental health and how to apply it when they became ill and faced surgery?

Once again, I think the answer is very few of us (with one honourable exception as you’ll see in the case studies below). There is no doubt that – like a football, rugby or hockey manager or any other team sport for that matter – forging a plan or a strategy can certainly help us to cope and finally recover from operations and serious illness.

I hope this Roar! report will help you find out just how mentally fit or unfit you are. It may even encourage you to write to Roar! and give us your own personal experiences of mental health before, during and after operations.

We’ll start with an initiative by a UK-based hospital which set up a series of mental health workshops for patients with Crohn’s disease and ulcerative colitis.

The courses, which were run by Beaumont Hospital in Dublin, put the patient at the centre of their own care and thus encourage them to think about their lifestyles, thoughts, moods and also the behaviours that make up who they are.

Referred to as self-management, this approach to mental health includes making choices to improve your health such as being more active, eating more healthily and using self-care rituals.

It also helps you cope with important tasks like making sure you take the correct medication for your condition, monitoring the symptoms of your own illness, coping with the emotional aspects of your condition and finally communicating with healthcare professionals.

RLG member Linda Tutty who joined one of the courses says: “There were 10 of us and each of us made weekly action plans, shared our experiences, and helped each other solve problems we faced in creating and carrying out our individual programmes.” 

As Linda points out: “I met wonderful people with a variety of different health conditions, and this made me feel I was not alone which helped me emotionally. It made me aware of my habits and gave me the tools to make positive changes.”

Linda Tutty

The key message of the courses says Linda was “to learn to speak more openly about my condition – it was wonderfully comfortable being with other people with similar conditions.

“The other thing I focused on was to set achievable targets or goals for the week ahead and once you have reached your target there is a great sense of accomplishment, no matter how small your targets may be,” says Linda.

She also learnt the value of relaxation techniques. “We were taught and practised breathing exercises and visualisation techniques. I absolutely recommend that all patients who have any chronic condition avail of a self-management programme if possible.” [See RLG committee member and former chartered physiotherapist Theresa Parr’s breathing and relaxation exercises also on this website here ]

You can also order a copy of the course’s handbook “Self-management of Long-term Health Conditions” by Kate Lorig from www.amazon.co.uk (£2.98).

One person who has certainly had more than her fair share of illness, surgery and operations in the past four years is Red Lion Group member Ruth Cox.

In 2016 Ruth had emergency surgery after a chronic spell of uc and says that when doctors told her about her surgery “I was completely shell-shocked. I can remember feeling numb and as if I was in a dream and this wasn’t real.”

Then after her initial stoma operation Ruth says she was “quite determined to get back to my old self as soon as possible and came out of hospital a week after surgery.”

But when she went back to hospital to have her J-pouch fitted a few months later, she discovered she had breast cancer. After the initial shock she was told that the cancer was at an early stage and after an operation to remove the tumour and four weeks’ radiotherapy once again she started to make plans to have her J-pouch op.

Ruth Cox

Until setback number two. Soon afterwards Ruth was diagnosed with enteropathic arthritis which is linked to uc. Painful and debilitating particularly in her feet and ankles, it meant Ruth had to use a wheelchair and crutches to get around and rely on her family for everyday tasks for six months. Eventually she saw a consultant who prescribed two drugs, Methotrexate and Humira, “and suddenly I was pain-free and walking around like normal again”.

It meant Ruth was soon fit enough to have her closure which went ahead in April 2019. “My personal journey to a J-pouch has had a huge impact on me and has changed my perspective on life a lot. It’s taken me much longer to heal mentally than physically and it can be a slow process,” Ruth says now. 

“I’ve tried mindfulness, spoken to counsellors and had lots of support from family and friends and in the end, time helped a lot. Luckily, I’m quite a resilient person and have always tried to stay positive and not let life events get me down. 

“The way I look at it is that bad things will happen in life and you make the choice in how you deal with it. You can spend the rest of your life feeling sorry for yourself or you can make the best of what you’ve got now and look for the good things in life. 

“I’m pretty sure that my experiences over the last few years have changed me as a person and I know that I appreciate the little things in life more now. I live for today and try to regularly tell people that I love them and appreciate them. Until you experience some adversity in life, you never know how strong you can be,” says Ruth.

Michelle Martin

RLG committee member Michelle Martin devised her own personal recovery plan before, during and after her pouch surgery at Broomfield Hospital, Chelmsford, Essex, nearly two years ago.

“Within just a few weeks, I had gone from having an upset stomach to having my colon removed and living with a stoma, which I found mentally and physically challenging. My family and friends didn’t think I would cope and, initially, I wasn’t too sure myself. I couldn’t stand to look at my stoma or change the bag. I just wanted to be left alone,” says the 42-year-old. 

“However, as the days and weeks went by, I started to feel better,” says Michelle. “I had spent most of my life feeling tired, having headaches, so feeling well was a novelty. I knew I was going to need more operations, and I also knew this would have a mental and physical impact on me.”

She decided exercise was the key to her recovery and would help her prepare for her next operation. “I knew being fit and healthy would help me recover but it was also essential for my mental well-being,” she says.

Eight weeks after being discharged from hospital she started going to the gym. “I took it easy to start with, focusing mainly on hydrotherapy. It did mean putting on a swimming costume, but as luck would have it, I had lost so much weight, my swimming costume could easily accommodate my bag!”

Michelle also took up yoga to help her relax. “Getting fit gave me something to focus on and helped me feel in control. I was fighting back and I was going to be fitter and healthier than I had been in a long time. I had a firm belief that I was the key to my rehabilitation, the surgeons saved my life, my consultant was putting me back together, but I had a responsibility to take this opportunity and do my part in improving the outcomes.

Michelle says keeping fit “was one of the ways I looked after my mental health and I feel for me personally was the most beneficial to my recovery.” 

The other factor, she says, was making sure she continued to do what she loved, especially going on holiday. “So after each operation I planned a trip away, something positive to look forward to.” 

However post-surgery she faced a statutory 10-week wait for travel cover from her insurer. “I made my mind up that after that 10 weeks I would be on a flight, be it a city break or chilling out on a beach. Obviously the beach holiday won through and that helped me relax, feel normal, and recover!” she says.

Michelle’s positivity is palpable. “I have been exceptionally lucky so far, I am really happy with my pouch, and my quality of life has improved. I think my positive outcomes are due to having the right people around me. Knowing I had a brilliant surgeon, stoma nurses that looked after me both physically and emotionally, a supportive partner and family, great friends and a good employer who allowed me time to recover.

“That combined with keeping fit and having a clear goal, enabled me to get through a very difficult period in my life,” she says.

Another important event Michelle says helped her recovery was a conversation with a counsellor she knew. “We were talking about how people react to traumas and what influences our reactions. Interestingly he said the actual trauma is just one aspect of how we are feeling when we go through a life-changing experience. We are also heavily influenced by our past life, our relationships, how we feel about ourselves both emotionally and physically and the circumstances which led us to this point in our lives,” she says. 

As Michelle points out: “What I took from this conversation was that we focus so much on the surgery and our illness that we forget to take a holistic view of our life. There is a need to look beyond our health issues and focus on what else shapes us and how we can manage these to improve both our physical and mental well-being.“

Art as therapy

One way to help your recovery from an illness or a difficult episode is to take up an interest. The textbook term is “occupational therapy”. Just ask RLG member Christine Lawton who turned to painting to help her after her pouch surgery. “Although I am not a psychologist, I know it has been proven that painting and drawing are extremely good mental therapy. I am not surprised because when you are drawing or painting, you are looking at a subject with different eyes and you become completely engrossed away from the everyday hassles of life.

“It is invigorating to express mood and let out our pent-up feelings. Colours can also have a beneficial effect on your moods and morale and brighten up your day. It doesn’t matter what the result is: it is the journey that counts,” she says.

“I’ve found painting and art a wonderful way to relax during a difficult period and it has been a real boon and has also helped me to pass the time quicker during the lockdown.”

Two of Christine Lawton’s recent animal portraits: a cockapoo and her local vicar’s cat 

A surgeon’s view

Finally, who better to have the last word on mental health than the lead colorectal surgeon at St Mark’s and the patron of the Red Lion Group Janindra Warusitavarne. 

“When surgery is needed for ulcerative colitis I have noticed that different people have different reactions. Much of the decision to proceed to surgery depends on the quality of life of the individual and how the disease affects that quality of life,’ Janindra told Roar!.

“For an individual where there is a risk of cancer and surgery is proposed but the disease is well-controlled, trading off good function for potentially worse bowel function can be a difficult decision. On some occasions, where the disease becomes acutely severe, the decision to have surgery or not may be taken away from the individual when emergency surgery is needed. In most situations the surgery is planned for when there are no further medical options,” says the consultant surgeon. 

“The most important point to consider when making the decision to have surgery in ulcerative colitis is that removal of the colon or rectum removes the disease as well but whether an individual chooses a J-pouch or a permanent ileostomy depends on the perceived quality of life gain. In this regard, the mental health of an individual is vitally important. 

“Often when surgery is considered, an individual can be tired, in pain and feeling generally ‘unwell’. Post-operatively when the individual feels better as the disease is not causing sickness, decision-making can be a lot clearer. It is at this time the decisions regarding stoma and J-pouch should be made. 

“At this stage one can decide if the stoma is something they can live with or if they wish to proceed to J-pouch surgery. Making a decision when one is relatively well means that a more objective assessment can be made. When the stress of the disease and its effects on mental health have been removed more relevant decisions can be made. 

One way to aid this vital decision is pre-operative counselling, says Janindra. “Post-operatively, the success or otherwise of the J-pouch varies according to the mindset of an individual. This is why pre-operative counselling is so important as it helps to understand the nature and consequences of surgery. When this aspect is well understood an individual having a J-pouch is better able to understand the inner working of the pouch and this can help with overall quality of life and well-being. 

“When a pouch does not function appropriately, there can be many reasons for this and having the appropriate team with the appropriate support is essential. When the hope of a quality of life improvement is resting on surgery then any change in this expectation has to be managed appropriately.

“It is under these circumstances that managing the mental health of an individual is just as important as dealing with the clinical issues. This requires understanding on the part of the clinical team and reassurance to the individual. 

“The J-pouch is for quality of life and mental well-being is vital for quality of life,” adds Janindra.

Janindra Warusitavarne

This article first appeared in ISSUE 60: Christmas 2020 edition of ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed Copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

Join Now

News

UC cases are rising, reveal St Mark’s Hospital experts

UC cases are rising, reveal St Mark’s Hospital experts

Ulcerative colitis is rising, says a study by three St Mark’s Hospital specialists in the March issue of the Royal College of Physicians journal.

That is the finding of a paper titled “Ulcerative colitis: an update” by St. Mark’s consultant gastroenterologist Professor Ailsa Hart and gastroenterology fellow Jean-Frederic Le Blanc and former St Mark’s research fellow Jonathan P Segal.

Yet – fascinatingly – as the number of uc cases grows, so do the treatments and techniques used by hospitals and gastroenterologists to help cure and combat the problem.

To find out more about this cutting-edge research click here.

News

You may qualify for financial support

You may qualify for financial support from the Kingston Trust

If you have a stoma or an ileo-anal pouch, are over sixteen years of age and are experiencing financial hardship – you may qualify for a grant from the Kinsgton Trust.

Available to residents of England, Wales, Scotland, Northern Ireland or Republic of Ireland.

For further details visit the Kingston trust website here. Or contact the Kingston trust secretary by email secretary@kingstontrust.org.uk or phone 01256 353320.

Download an information poster below.

Click Here to download.

Stories

When I visited the home of the red lion

When I visited the home of the red lion

Holidays – remember them? RLG member Susan Burrows certainly does and writes vividly and entertainingly about her trips in Roar! magazine. Here’s her account of a memorable visit to Kenya

Shortly before the first lockdown I had a once-in-a-lifetime trip to the beautiful African country of Kenya.

We (I and my group of 16 intrepid travellers) spent the first two days of our visit in Nairobi, the country’s sprawling, bustling capital where we discovered that much of the city’s land is owned by the famous Maasai, a semi-nomadic tribe based in Kenya and Tanzania. 

Once known as fearsome hunters and fighters, the Maasai’s main activities today are herding and raising cattle, goats and sheep. It meant that at busy road junctions we often found ourselves jostling with herds of cattle which were being driven by young boys from the tribe. 

Another feature of Nairobi is that there are no traffic lights and getting across junctions and around roundabouts was, to say the least, haphazard. I think that at times we all had our eyes shut –  much to the amusement of our driver.

We also visited the Daphne Sheldrick Animal Orphanage – named after the pioneering conservationist and author who rescued, reared and reintegrated orphaned elephants into the wild for more than 30 years. Here the young elephants feed in mini-herds, coming back three times a day for milk feeding and, in the hot weather, mud baths. 

Out of Africa

Another highlight was a visit to the Karen Blixen Museum – founded by the Danish author of the same name – where both the house and garden were made famous by the film “Out of Africa” which was based on the book she wrote.

On the third day we flew in a small private plane to the Maasai Mara [the word ‘Mara’ comes from the local dialect ‘Maa’ and means spotted], a huge game reserve in the Kenyan town of Narok. We stayed in a lodge on the edge of the Mara River – a   favourite spot for hippopotami – and until then I didn’t realise how noisy they can be particularly at daybreak.

Roar of approval: A hungry red lion

The reserve is 1,500 square kilometres of broad, biscuit-coloured savannah (tropical grassland) and plays host to the most spectacular array of birds and animals. At times the vast landscape is dotted with shadows from small clouds which scud across the vast sky. It is adjacent to the Serengeti, another famous national park, and for five days we enjoyed the sights and sounds of the Maasai Mara on early morning, late afternoon and full-day game-viewing excursions.

And we saw so much – elephants, hippopotami, several prides of lions, a cheetah fast asleep under a tree, a leopard and her cub who were notoriously shy but made their way around our vehicle to get to the other side of the track (see photo). There were zebras, giraffes, warthogs, cape buffaloes and, after many hours of searching, one of the 18 rhinoceri that still wander the Maasai Mara. 

The list is seemingly endless, but I must mention that we also saw the tail end of the wildebeest migration – a fantastic spectacle as the animals ran down towards the river to rest before moving on to the Serengeti. 

It takes two to tango: A pair of secretary birds

Accompanied by an experienced Maasai guide we visited a typical local village. It was built along traditional lines complete with a cattle enclosure, outer palisade and mud and cow dung huts which are all built by the women. 

We also discovered that cattle are a very important commodity, particularly if buying another wife! 

Our five days on the Mara ended with a visit to a school. The school was supported by the lodge where we stayed and provides the portable water filtration systems to cleanse the local drinking water of the bacteria which causes many diseases. The children were on holiday but a number returned to tell us about their school life. They walk many miles a day to and from school but their enthusiasm for school life was uplifting.

Health and safety

During the visit we took malaria tablets. It was not the first time that I had taken them, and I had no adverse reactions to them. We drank bottled water as well as using it to clean our teeth. The water is clean but different chemicals are used to cleanse it and this can cause upset stomachs. I think that this applies in numerous countries. The toilets in the lodge were excellent and there was constant running water. 

When we were on the game drives there were no toilets, but the half-day drives were only about three hours long and the full-day drive probably around five hours. During the latter we stopped for a breakfast picnic and two of the vehicles were parked a short distance away and used to shield people who needed to use the facilities!


This article first appeared in ISSUE 60: Christmas 2020 edition of ROAR! if you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive a printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to 1994.

Join Now

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