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Medication for your internal pouch – keep taking the…

Medication for your internal pouch – keep taking the tablets!

Codeine or loperamide? Ciprofloxacin or Metronizadole? All too many of us have faced a nagging decision about which drug to take for a pouch problem or a spell of pouchitis. But, happily, help is at hand. At a previous Red Lion Group Infomation Day, St Mark’s Hospital’s Pharmacist Yee Kee Cheung gave us a guide to the best drugs and when to take them. Here were her findings…

In her talk, Yee Kee Cheung said the main drugs the average pouch-owner uses are loperamide and codeine.

These two drugs help slow the pouch’s motions and so prevents frequent loo visits. They also help us to absorb water and the daily nutrients our bodies need.

Loperamide can be taken in “quite high doses” of up to 16mg four times a day, she said, and it is relatively safe with no long-term side-effects. The average codeine dose, on the other hand, is 30-60mg four times a day and can cause drowsiness.

To get the best effects, said Yee, pouch-owners should take both drugs 30 minutes to 1 hour before food.

Pouchitis

As bacteria is said to be the main cause of pouchitis, the recommended treatment is to take antibiotics twice a day for 1-2 weeks. In more severe cases it can be taken for a period of a month or even several months, she said.

The main antibiotics are metronidazole, ciprofloxacin and augmentin. One of metranizadole’s side-effects was a metallic taste in the mouth. Users should also avoid alcohol while taking it. Anyone who is prescribed ciprofloxacin should avoid direct sunlight and use sun creams during hot weather, she said. Users sometimes experience  inflammation in the tendons – mainly the Achilles.

The other antibiotic, augmentin, can cause nausea, vomiting and diarrheoa. It also contains penicillin, so those with penicillin allergies should mention this to their doctor before taking it, said Yee.

If antibiotics do not help to control a spell of pouchitis, pouch-owners could try probiotics, which, she said, is a food supplement rather than a drug. VSL3 is the most trialled or investigated. It contains eight strains of bacteria and can help those with severe pouchitis who are in remission with antibiotics. Probiotics can be bought without a prescription from pharmacies and health stores.

Breast-feeding and pregnancy

Yee advised pregnant women to avoid complementary or herbal medicines and, when taking medication or drugs, to consider using creams or enemas instead of tablets. When breast-feeding, women on a drugs regime should take them after they have breast-fed to minimise exposure to their baby.

“There are drugs we know that are definitely not safe in pregnancy and some drugs that are known to be safe. However, there are lots of drugs in the grey area where there is lots of conflicting data about whether or not it is safe,” said Yee.

“Always discuss this with your doctor if you are planning to start a family, or what your plans are after you have had your baby and whether you want to breast-feed,” said Yee. When a pouch-owner plans ahead, she and her partner can then gauge which drugs are safe and which are not, said Yee.

Prescription charges

Anyone who lives in Scotland, Wales and Ireland does not pay prescription charges. In England the current charge is £8.80. One good way to save money on charges is to use a pre-payment scheme, said Yee. Pre-payment cards can be obtained by filling in an FP95 form from your local pharmacy or GP’s surgery.

Pouches are not currently included in the Department of Health’s medical exemption certificates list. “This list is very limited. There are lots of chronic conditions patients may experience that require very regular medication and they are not eligible for free prescriptions, so this is a list in desperate need of revision by the Department of Health,” said Yee.


Everything you wanted to know about your internal pouch….

Everything you wanted to know about your internal pouch but were afraid to ask

Are you aware of the wealth of information available on the Red Lion Group website about Pouch history and living with a Pouch?

Over the years, we have posted personal stories from pouch owners and  video recordings from the experts and pioneers in pouch surgery from St. Mark’s Hospital and academic institute.

You can find this information on our Stories page. Or look at the Resources page and browse recordings of  Information Days presentations.

Some highlights from previous Information Days:-

  • Personal reflections on 40 Years of Pouch Surgery by Professor R. J (John) Nicholls
  • Modern developments in Pouch Surgery by Janindra Warusavitarne
  • Fertility, fecundity and pregnancy with a pouch by Sam Evans – Pouch Nurse Specialist
  • Pouch emptying and Biofeedback by Ellie Bradshaw – Lead Nurse, Biofeedback Dept.

So, whether you have a j-pouch, s-pouch, w-pouch or considering pouch surgery, why not attend this year’s Information day and hear expert advice first hand on pouch related topics and meet other pouch owners and pre-pouch patients. This year we will be commemorating the 25th anniversary of the Red Lion group.

The  25th anniversary Information day will take place on Saturday 27th April 2019 at
St. Mark’s Hospital, Watford Road, Harrow, Middlesex HA1 3UJ.
See Getting here

Here is the Information day agenda (updated 20.03.2019)

TIMEPRESENTATION
10:00-10:30Registration with tea/coffee and biscuits
10:30-10:50Welcome and AGM
10:50-11:00Personal reflections on the Red Lion group 25 years on

Dr. Martin Peters, Pouchee and first Chairman of the RLG

11:00-11:10My parallel journeys – pouch and RLG

Tim Rogers, Founder RLG member, first editor of ROAR!

And still on the committee after all these years!

11:10-11:50Modern developments in Pouch Surgery

Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital

11:50-12:20Pelvic floor perfection and the importance of proper emptying

Ellie Bradshaw, Lead Nurse, Biofeedback Dept, St. Mark’s Hospital

12:20-13:30Lunch – a selection of sandwiches and cakes
13:30-14:00Pharmacy Advice for Pouchees

Uchu Meade, St Mark’s Pharmacy Manager, Lead Clinical Pharmacist

14:00-14:30Diet and your pouch

Gabriela Poufou, Dietician, St. Mark’s Hospital

14:30-14:45Tea and coffee break
14:45-15:55Personal pouch journeys and workshops

1) Female pouch issues Theresa Parr

2) Male pouch issues Gary Bronziet

3) Pouch family and friends (TBC)

15:55-16:00Evaluation and close

You can download the agenda below.

Information Day Agenda 2019
Download Now!1711 Downloads

If you would like to attend please download the registration form below. Note that the cost is only £8.00 for members and member’s guests and £10.00 for non-members (cost includes lunch and refreshments). Please complete the form and remit payment as soon as possible to guarantee your place as spaces are limited. If you have pre-registered, please send form and remit payment by 1 April to guarantee your place.

Information Day Registration 2019
Download Now!2040 Downloads

If you are not already a member, why not join now and take advantage of the discounted rate and other member benefits. You can join here.

Join Now

We look forward to seeing you there. Come celebrate our 25th anniversary with us!

Celebrate the Red Lion Group Silver Jubilee at 2019…

2019 is the SILVER JUBILEE of the Red Lion Group; providing advice and guidance for pouch patients, their friends and family for a quarter of a century.
The Information Day on 27 April 2019 will celebrate the Silver Jubilee with an address by Dr Martin Peters, who was the first RLG Chairman way back in 1994.  Martin will be reflecting on RLG then and now and on his own reflections about living with a pouch for the last 25 years.
Book your place by clicking the button below.
Register Now

Information Day 2019 – book your place now!

Hopefully, you have already saved the date for the Red Lion group Information Day and AGM, 2019, which will take place on Saturday 27 April at St Mark’s Hospital, Harrow. The Red Lion Group Information Day is one of the most informative events for patients, prospective patients, friends family and health care professionals with an interest in Pouch Surgery.

You will have the opportunity to hear from some of the leading professionals in the field of Pouch Surgery practise and research and interact with fellow pouchees, prospective pouchees and health care professionals. You can view videos from previous information days here on the Red Lion Group website.

Spaces are limited and you are recommended to register your intention to attend as soon as possible. Attendance fee (which includes refreshments and lunch) is £10.00 for non-members and £8.00 for members.


You can book your place by subscribing to the Information Day mailing list by clicking the link below.

You will be sent regular updates on the agenda as they become available and payment instructions in due course.

Register Now

 


Confirmed Speakers

The Information Day on 27 April 2019 will celebrate the Silver Jubilee with an address by Dr Martin Peters, who was the first RLG Chairman way back in 1994.  Martin will be reflecting on RLG then and now and on his own reflections about living with a pouch for the last 25 years.

We are delighted to confirm that Elissa Bradshaw, Clinical Nurse Specialist in Biofeedback Therapy at St Marks Hospital, will be speaking about the importance of efficient pouch emptying, the mechanics of pouch emptying and how you can empty your pouch more effectively.

Biofeedback therapy is an effective treatment for bowel dysfunction. The service at the Sir Alan Parks Physiology and Neuromodulation Unit has been successful in providing biofeedback therapy for 30 years, where treatments have extended and evolved to help both the physical and psychological needs of pouch patients. It is particularly useful for pouch patients, who may experience a variety of difficult symptoms including increased bowel frequency, evacuatory dysfunction and incontinence.

You can read more about Bio Feedback research at St Marks Hospital here.

 

Kangaroo Club – Information Day

The Kangaroo Club –  a pouch support group based in Oxford – is holding its next annual Information Day on Saturday 6th October 2018.

Cost: Free of charge

Time: 10:00 a.m. – 4:00 p.m.

Venue: John Radcliffe Hospital, Oxford

The aim of the Kangaroo Club Information Days is to give a chance to meet other people who have had colorectal surgery or who are eligible for such surgery. As well as time being given for informal discussion with other attendees, there is a full programme of more formal sessions led by medical staff from the Oxford Radcliffe Hospitals NHS Trust .

The Information Day on 6th October 2018 will include a full programme of sessions covering:

  • Colorectal surgery as a specialty
  • Pouch surgery: developments and variations
  • What is normal?
  • About Occtopus and The Kingston Trust
  • Round table discussions – as suggested by pouch owners and for their supporters
  • Questions and answers with the Colorectal Nursing team

For more information and to register to attend please click here

We look forward to seeing you there.

Information day 2018

The 2018 Information Day took place on Saturday 12 May 2018 at the St. Mark’s Hospital in Harrow.

We were delighted to welcome over 80 attendees including pouchees, potential pouchees and medical specialists

2018 marks the 40th anniversary of the invention of the Pouch at St. Mark’s hospital and we were delighted to have Professor John Nicholls one of the pioneers and foremost experts on the subject as keynote speaker giving his personal reflections on 40 years of the pouch operation.

David Davies (RLG Chairman) with Prof. John Nicholls (a.k.a the Rear admiral)

 

David Davies (RLG Chairman) with Stephen Want

 

 

David Davies with Stephen Want, RLG member, who gave a talk about his experience as one of the earliest recipients of the pouch

 

 

 

 

David Davies with Lisa Allison

 

 

David Davies with Lisa Allison after her presentation on the subject “Pouch Surgery Complications“. Lisa is a Pouch nurse specialist at St. Mark’s hospital and former Chair of the Red Lion Group.

 

 

 

David Davies with Dr Jonathan Segal

 

 

David Davies with Dr Jonathan Segal  of St. Mark’s hospital, after his presentation  “Pouch Research Update – medical & surgical perspectives” .

 

 

 

 

David Davies with Mr Janindra Warusavitarne

 

David Davies with Mr Janindra Warusavitarne of St. Mark’s hospital, after his  presentation on the subject “Modern developments in Pouch Surgery“.

 

 

 

 

 

David Davies with Sam Evans

 

David Davies with Miss Sam Evans after her presentation of “Fertility, fecundity and pregnancy with a pouch“. Sam is a Clinical Nurse specialist in pouch care at St Mark’s hospital.

 

 

 

 

 

 

There were also a number of work shops and of course food & beverage.

You can find recordings of the presentations from this years event here on the RLG web site.

We look forward to seeing you all again next year!

 

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