Stories - Pouch support charity

Zoom into Summer series of Pouch webcasts 2021

Following last years highly succesful Zoom into Summer Series, we are delighted to announce that we will be repeating it this year. Red Lion Group will be hosting a series of Pouch related webcasts (using the ZOOM facility), with guest speakers talking on a variety of subjects that will be of interest to our community.

Attendance is FREE and is open to Red Lion Group members and non-members alike.

As you may know, we have previously hosted an annual in-person Information Day at St. Mark’s hospital, but due to COVID, for the time being we not able to hold an in-person event. However, our Zoom into Summer series will be a chance to catch up with some of the speakers you would have heard from at the Info day and meet online with other Pouchees!

Keep an eye out for updates, including additional speakers and dates and times.

The following speakers are currently confirmed (dates and times to follow).

Jason Bacon (CEO of St. Mark’s Hospital Foundation) . Date and time to be confirmed.

Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital. Date and time to be confirmed.

Zarah Perry-Woodford, Consultant nurse – pouch and stoma care, St Mark’s Hospital. Date and time to be confirmed.

As soon as dates and times are confirmed, we will provide a link to enable you to register for event(s).

For a review of last years Zoom into Summer series webcasts , click HERE.

Events

Pouch forum update and register for next event

Register for next event on Zoom on Monday 10 May 2021

Published 8 April 2021

The forums usually run on the first Monday of every month; the next will be on Monday 10 May due to spring bank holiday.

Please register beforehand if you wish to attend so we can send on the dial in details. See you then!

David Davies
RLG Chairman

IMPORTANT PLEASE READ. If you have previously registered to attend any of our Zoom Forums, when you click the “Register Now” button, you will receive a message like that shown below.

If you have received this message, you will need to click on the link “Click here to update your profile“. You will be sent an email containing a link to update your preferences. Check your inbox for the email and click on the supplied link. You will see the events that you have previously attended, and you will be able to tick the box to register for the next event. Don’t forget to click on the “Update Profile” button at the bottom of the page!

If you have any questions or if you have not received joining instructions 24 hours before the meeting, please contact membership@pouchsupport.org

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.

The forums usually run on the first Monday of every month; the next will be on Monday 10 May due to spring bank holiday.

Please register beforehand if you wish to attend so we can send on the dial in details. See you then!

David Davies
RLG Chairman

IMPORTANT PLEASE READ. If you have previously registered to attend any of our Zoom Forums, when you click the “Register Now” button, you will receive a message like that shown below.

If you have any questions or if you have not received joining instructions 24 hours before the meeting, please contact membership@pouchsupport.org

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.

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 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.

News

Pouch inflammation can be a real pain in the…

Struggling with pouchitis that’s resistant to antibiotics?

MAC Clinical Research is conducting a new study for a potential treatment for chronic pouch inflammation in patients who have their pouch due to Ulcerative Colitis.

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

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.

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

News

J Pouch Support Facebook Forum now on Red Lion…

J Pouch Support Facebook Forum now on Red Lion Group website

The J Pouch Support (UK Specific) Facebook Group, with over 942 members, is the most active forum for pouch related discussion in the UK, with posts and comments sometimes exceeding 100 per day.

We are delighted to inform you that this forum is now integrated into the Red Lion Group website. The content is monitored by a member of the RLG Committee to ensure appropriateness and relevance for our membership.

Click on the FORUMS option in the menu bar and you will be able to view and interact with the discussions and comments directly from the web site.

Note that the Group is a “Private” Facebook Group. If you are not already a member, you will still be able to see the discussions from the RLG website.

To participate in discussions, you will need to join the group by logging into your Facebook account and submitting a join request.

We would like to acknowledge Sam Hill, the founder of the Facebook forum for her hard work in growing it to become the pre-eminent facebook forum for pouch patients in the UK.

Gary Bronziet

RLG membership Secretary

News

Clinical trial of a novel drug for the treatment…

Clinical trial of a novel drug for the treatment of chronic, antibiotic resistant Pouchitis in patients with a pelvic pouch

Do you suffer from chronic, antibiotic resistant Pouchitis with at least two episodes in the past year? Does the problem continue, even after a two-week course of antibiotics? Are you aged between 18 and 75 and had your original pouch operation due to ulcerative colitis? Has it been at least a year since your stoma was closed? If you answered YES to all of these questions then you might be eligible to take part in a clinical trial being conducted in the UK over the coming months.

Recurrent, persistent Pouchitis is a continuing challenge for many pouchees, as we know from many interactions with RLG members and the wider pouch community in the UK. Antibiotics are the standard treatment but in some cases the condition persists after antibiotic treatment and there is currently no clinically proven treatment if antibiotics fail. Now a San Francisco based drug company is developing a novel treatment specifically to treat persistent, antibiotic resistant Pouchitis and they need your help. If you meet the above criteria and you want to know more about this trial then please click on https://researchforyou.co.uk/pouchitis-study-1/ or telephone 0800 633 5507 (freephone) or Text MAC and your NAME to 81025. If you are eligible and you wish to proceed then you might be enrolled into a clinical trial which could benefit you and could lead to the approval of a novel treatment from which many future Pouchitis sufferers could benefit.

The study is being done at 5 centers in England and will be conducted to the highest ethical standards to protect your wellbeing. A reimbursement of up to £1,135 is available to repay travel and inconvenience costs. We are excited by the prospect of a new treatment for this troublesome and persistent condition.

In the interests of transparency, MAC are making a modest donation to RLG for helping to publicise this trial. This money will be used by the Trustees to provide support to our members and to support fundamental research into clinical aspects of pouch and cancer care. From an ethical perspective, we cannot endorse the study drug and cannot predict the outcomes of the clinical trial. Participation in the trial will be your informed choice and expressing an interest does not commit you to anything.

Best wishes

David

David Davies

RLG Chairman

If you meet the above criteria and you want to know more about this trial then please click on button below.

Find out More

Stories

I get high with a little help from my…

A healthy love of walking turned into a more serious passion for rock-climbing for Michael Teanby thanks to the advice of a friend and a change of girlfriend

Perched on a long narrow ledge 40 metres above the sea and about 40m below the clifftop, the pressure was growing, the pressure that had replaced the normal ‘urge’ for a bowel motion 11 years ago. The setting sun was still warming the rock and my girlfriend was about to set off on the second pitch¹ of the Atlantis/True Moments/Freebird route²; the long weaving route is a bit of a sought-after classic on the Castle Helen sea cliffs of Holyhead.

As I was shifting uneasily on the belay stance³ regretting my earlier choice of downing that second cup of tar [I like to call coffee], my pouch emitted an audible grumble. Looking at my girlfriend I uttered ‘the time is nigh’, crag code for ‘I really need the toilet’.

Unfortunately, there was the problem of our current position; the only way off the ledge was another two hours of climbing. So, making a hollow under a thick section of moss, there I perched baring all on the narrow ledge, hoping to make do with the four sheets of tissue I found in my back pocket. Thankfully we had the cliff to ourselves and I have a very understanding partner.

There were however a couple of day fishers in boats who had been watching our steady progress up the cliff, and a kayaking party passing by; I just hope they weren’t using binoculars!

Burying my embarrassment and scratching a small apology onto a nearby loose rock before using it to weigh down the moss, we turned our attention back to the route’s second pitch the ‘True Moments’ traverse⁴. Eugenie set off steadily, calming her nerves for what was to come – before her lies a 15m traverse across slightly suspect rock. At the end of the traverse a bold vertical 8m section of climbing remains, the crux⁵ is 4-5m above the last good piece of protection. A fall certainly wouldn’t mean death, but you’d definitely be shaken as the ropes caught you after 10m of free fall.

Fortunately, all went well; we gained the top without further issue just as the sun was setting over the Irish Sea, the summer’s heat still radiating from the red quartzite rockface that had facilitated our passage up the cliff, and the coconut scent of the gorse flowers drifting by on the breeze. My life had never been better.

Occasions like this are surprisingly rare for me. Compared to the usual three hours, when climbing I can often go six to eight hours without needing the toilet, and despite not changing my diet in preparation, there is usually ample time to bag⁶ a route and remain in comfort. I don’t know why; maybe it’s just the adrenaline slowing my digestive system as blood is diverted to more critical areas, though that too is strange as I find climbing relaxing. There’s an addictive flow to it, that perfect level of clarity and stress that comes from having your entire being focused on a single task.

Mountains and cliffs haven’t always been part of my life. The Lincolnshire Wolds and salt marshes of my youth are quite devoid of rock. In 2011, two years after I’d lost my left kidney to an adhesion, a friend invited me to North Wales. Nothing special, just a walk up Snowdon, but I was hooked.

Over the next three years my bond with this friend grew stronger, walks got continuously steeper and more technical, and we’d spend a week each summer roaming across the mountains of Scotland. Technically it’s called scrambling, it blurs the line between walking and rock climbing. In 2014 I picked up my first rope. As our scrambles were getting steeper still, learning how to protect ourselves correctly seemed prudent. We were soon moving across terrain that three years before would have seemed like an insane proposition, but here we were playing in the mountains to our hearts’ content.

Climbing has added a great deal to my ‘mental toolkit’. My stress response improved, and my social skills, situational awareness, general fitness and outlook on life all shifted thanks to this wonderful pursuit and the welcoming community that surrounds it. Though not all without cost. As my love (obsession?) for rock and adventure grew, so did a rift in my relationship at the time. We’d been together for nearly 10 years but 2016 saw an end to that. She’d been with me through all my surgeries and stuck with me. There was once love but it had faded; arguments would start and end with threats like “you’ll not find anyone who’ll accept your condition”.

At times I was no kinder; looking back I realise that I was becoming ever more distant and continually more uninterested in the relationship. That’s what decided it, I wouldn’t stay in one relationship out of fear of rejection in another; it just wasn’t healthy. I’d always been completely open about my condition with friends and climbing partners and never once had someone not welcomed me or accepted my toilet habits.

Enter Eugenie, the wonderful woman who four years later would be sat at one end of a narrow ledge 40m above the sea, giggling at the ridiculousness of the situation whilst I wrestled with my harness trying to relieve myself a couple of metres away, all the while hoping another team of climbers didn’t appear. She’s sat there giggling a lot to be fair – the multiple times I’ve forgotten my toilet kit whilst heading to a crag, only to watch me gather various leaves to use as a paper substitute. For reference the best is sphagnum moss, naturally moist and quite durable, as good as a baby wipe and compostable.

Hopefully 2021 will allow me to return to the mountains I love so much, and maybe I’ll see a few of you among them? Just remember a toilet kit, not all areas offer substitutes as kind on the skin as sphagnum moss.

The climber’s glossary:

¹A pitch is a rope length (50-80m)

²The name of a tour in climbers’ language

³The belay stance is a climber’s position when anchored to a rock and paying the rope out to a lead climber

⁴To traverse means to move horizontally across the rock instead of vertically

⁵The crux is the hardest section of a route

⁶To ‘bag’ a route means to finish it

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