Skip to content
J Pouch support charity | Red Lion Group
  • Home
  • About
  • What’s New
  • Resources
  • FORUM
  • Events
  • Contact
  • FAQS
  • MEDIC
  • YouTube
  • Search
News

Diagnosis and treatment of pouchitis

Diagnosis and treatment of pouchitis

Overview

This article describes the process for the diagnosis and treatment of pouchitis as recommended by St. Mark’s hospital, London – the UK National bowel hospital. 

Symptoms

A small percentage of people with a j pouch will at some stage experience pouchitis. [The incidence of pouchitis is 20% at one year and up to 40% at 5 years. 10 to 15% of patients with pouchitis experience chronic pouchitis, which is classified as either ’treatment responsive’ or ’treatment refractory’. 1]

Symptoms of pouchitis are not dissimilar to those experienced by patients whose original diagnosis was ulcerative colitis (UC). For example, abdominal pain, cramping, increased frequency, urgency and bleeding.  

Diagnosis

Initial diagnosis is based on advanced history taking and assessment of symptoms. This is why it is important that patients speak to someone experienced in pouches, as otherwise they risk being misdiagnosed. Blood tests and pouchoscopy may be considered subject to the history taking and assessment findings.

Treatment

In most cases pouchitis responds well to antibiotics. [two weeks Ciprofloxacin and metronidazole are the most commonly used, often generating a rapid dramatic response. 1] This may be followed up with further four weeks of antibiotics if not resolved or rapid relapse.

In the event that symptoms are not responsive to the antibiotics, investigations into alternative possible diagnosis would be carried out. 

For the complete treatment algorithm, including the treatment of chronic pouchitis, refer to the St. Mark’s hospital Suggested Treatment Algorithm below.


With acknowledgement to Jonathan P Segal, Nik S Ding, Guy Worley, Omar D Faiz, Susan K Clark, Ailsa L Hart

You can download a copy of the treatment algorithm below :-

Protocol for the treatment of pouchitis
Protocol for the treatment of pouchitis
Tap to Download1281 Downloads

References:

1 From the paper “Systematic review: management of chronic refractory pouchitis with evidenced based treatment algorithm” published on Research gate.

You can read the actual paper on Research gate by clicking here or the image below.

Related articles

  • Clinical trial of a novel drug for the treatment of chronic, antibiotic resistant Pouchitis for patients with a pelvic pouch
    Date
    February 19, 2021
  • Medication for your internal pouch – keep taking the tablets!
    Date
    March 21, 2019
  • Ulcerative Colitis with pouch surgery
    Date
    September 4, 2021
News

How one pouchee maintains good pouch function

The banker with the magic touch – how one pouchee maintains good pouch function

It was some upsetting news from his consultant that prompted Ben Barbanel, a City banker and Red Lion Group member, to launch his own unique pouch treatment plan to maintain good pouch function. Did it work? Read on and you’ll find out….

Have you heard the one about the five-year pouchcare plan? You haven’t – well have a word with Red Lion Group member and pouchee Ben Barbanel and he will tell you all about it.

As Ben says: “I am delighted and proud to tell my friends, colleagues and fellow pouchees about the self-discovered regime I have put together over the past five years by taking little snippets of advice and help from a wide and varied array of different sources.”

Ben Barbanel

So what exactly are Ben’s sources? They are two Facebook sites: the J-pouch support group (UK specific) which is hosted by the Red Lion Group (RLG), and the US-based Facebook pouch support group; RLG’s monthly Zoom-led personal advice forums; and the “wonderful pouch nurses” and medical staff at St Mark’s Hospital, says the City banker.

In fact Ben’s story begins in 2002, when after a spell of ulcerative colitis (UC), he had a full colectomy followed by an ileorectal anastomosis1 in 2003 done by the legend John Nicholls.

He had “no issues at all until 2018” when pre-cancerous cells were discovered in the lining of his rectum. Those tests also marked the birth of Ben’s five-year plan.

Following medical advice, Ben’s rectum was accordingly removed. “I was so lucky to then have a one-step pouch made and connected by the talented lead consultant surgeon at St Mark’s, Janindra Warusavitarne.” [Janindra is an RLG patron].

Janindra Warusavitarne

Post-op Ben heard the first two pointers of his pouchcare plan. “St Mark’s consultant nurse, Zarah Perry-Woodford, told me that, as a pouchee, if I ate the same cheese sandwich every day for breakfast, lunch and dinner, my output would be different each time I went to the loo”. The second was when Ben’s pouchcare team said that – realistically – it would take him up to five years to see the “full working effects and stabilisation” of his pouch. Prophetic words indeed!

Here then are the highlights of Ben’s successful formula:

  • Six days a week he takes two sachets of Vivomixx probiotic – “I understand this is effectively the original De Simone formula that was most extensively trialled and tested for its efficacy in the treatment of IBD, IBS etc. (source : https://en.m.wikipedia.org/wiki/De_Simone_Formulation)” he says.
  • Ben takes one 400mg capsule of potent green tea extract daily – “I see this is routinely recommended in the US by a leading pouch gastroenterologist,” he says. 2 (see footnote)
  • He uses a warm water enema most times he visits the toilet – if convenient – to “completely empty my pouch. I always do this last thing at night before I go to bed and it enables me to sleep uninterrupted for probably five out of seven nights a week.”
  • Finally, Ben uses a Medena catheter after the enema to make sure the pouch is completely empty.

Says Ben: “I’m certain that this regime has given me a healthy pouch, with not one bout of pouchitis since the pouch’s formation. It also enables me to control my bowel motions very easily. My consultant is always very happy with how the pouch looks when I have an endoscopy, and is also very happy with my regime.”

As Ben somewhat sagely points out: “This is just one patient’s testimony and clearly doesn’t constitute medical advice and, while I am not a doctor or nurse or in any way medically qualified, this regime seems to work very well for me. And I would always recommend discussing any changes to your own regimes or plans with your medical team. Good luck fellow pouchees!”

And how will Ben celebrate his five-year pouchee-versary? Uniquely, of course. In September this year he and Janindra Warusavitarne will deliver a lecture titled“What do the public expect from surgeons” at the European Society of Coloproctology’s annual conference in the Lithuanian capital of Vilnius. 

(You can read their report in the Winter 2023 issue of Roar!) 


FOOTNOTES

1 ileorectal anastomosis (IRA) is a surgical procedure which involve removing part or all of the colon (the large intestine) and joining the ileum (the last part of the small intestine) to the rectum.  Refer https://www.sciencedirect.com/topics/medicine-and-dentistry/ileorectal-anastomosis


2 RLG member Stefan Presland commented, “I assume the article is referring to EGCG green tea extract. I’ve been taking this on and off for a number of years and discovered this BBC report in my early days of taking it that I’ve always kept in mind: https://www.bbc.co.uk/news/stories-45971416 . I’m possibly being too cautious as a result, but in case any people read the article and decided to to go out and buy some themselves, it’s probably worth noting to only take one 400mg tablet a day and always with food.


A version of this article first appeared in 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 all the way back to issue number 1, published in 1994.

See pouchsupport.org/join for further information.

Stories

My Medena Catheter Conversion

My Medena Catheter Conversion

By Christopher Browne
Originally published in ROAR! Issue 39: Christmas 2008.

I’ve just had to pay a large fine for wasting hospital time – or at least I should have done. That’s the view of a stomacare nurse when I told her I’d started using a Medena catheter for the first time.

“Just think, you’ve spent twelve years hanging around in hospital waiting-rooms, going to appointments with puzzled consultants and making worried phone calls about your troublesome pouch when all you had to do was use a catheter,” she told me.

And she was quite right of course. For in 1996 I was given one of these long thin plastic tubes by a nurse specialist at St Mark’s to try and clear my reluctant pouch.

I went home and after eyeing this gangly-looking object a few times, decided to take the plunge. I pushed it up my backside, and waited for some action, but nothing happened. “There must be something stirring in there,” I thought to myself and tried again a few days later. But once again not a drop. Niente. Nothing.

The next day I phoned the nurse specialist who’d given me the catheter and told her I couldn’t get it to work. She was philosophical and said I’d have to find another way to solve my  problems.

So I forgot about catheters until earlier this year when I saw Simon McClaughlin, a St Mark’s research fellow, about my pouch-emptying difficulties. He tested, scanned and probed with aplomb as he sought to find the causes. All the results showed a fairly normal-looking pouch. “But I’m having all these blockage problems whenever I go to the loo,” I said. The refrain I’d used with every other consultant I’d visited. He said the various post-pouch ops I’d had for ulcers and dilation had left scar tissue and lesions in parts of the anus.

I had two options. One was to use a Medena catheter. The second was more drastic. Abandon the pouch and have an ileostomy.

I booked an appointment with Beccy Slater, a pouch specialist nurse at St Mark’s. On the day of the visit, Beccy asked me to lie on my side and gently inserted a catheter up my backside. A few seconds later a giant tidal wave cascaded down Harrow-on-the-Hill (at least that’s what it felt like). For my pouch emptied like it had never emptied before as kilo after kilo seemed to pour into Beccy’s red bucket.

“You’re doing well,” she said reassuringly. Then she handed me the catheter and asked me to do the same. I took the plunge and “whoosh” another outpouring. “This is turning into something like fun,” I thought when I realised the catheter really worked after all. Beccy was positively glowing too and I went home a happy man.

That was six months ago. Since then my life has been transformed. I can relax, instead of mildly straining, on the train to work, I can write news stories without having to pause for a comfort – or in this case discomfort – break and I can visit friends and go to dinners, parties and social events feeling upbeat and cheerful. I even went on an eight-hour flight to Miami with no real problems recently.

Why did my catheter conversion take so long? There were two reasons. The first was ignorance. The nurse who first gave me the tube assumed I knew how to use it. However instead of pushing it seven or eight inches up my backside, I’d assumed it started about two inches from my so-called entry-point. So my weak thrusts were in vain.

The second reason was reluctance. No one exactly relishes endoscopes, surgical devices or thin plastic pipes being pushed up their backsides, however many times they might occur. But some are braver, or more determined, than others. I was one of the others.

However Mr Timid has been replaced by Mr Bold. I have used the catheter every day since June this year, visiting the loo two to four times – instead of nine to 10 times – in 24 hours. Each time I use four to six syringes of water (this depends on liquidity and some people may need less) to help ease the stools through. At first I used Lignocaine on the tip of the catheter. I now find wetting it works too.

Each visit takes 9-12 minutes which is only half-an-hour a day. Before I spent at least 90 minutes in the loo. I also find I don’t need to go to the lavatory the normal way anymore. I go just after breakfast and immediately before bedtime and try to fit in at least one visit in between – although I found using a catheter at work tricky at first. My company’s loos are grouped side-by-side with slim partitions between them. My solution was to use one that had been set slightly apart from the others on another floor in the building. Fortunately most offices have self-contained loos and you’ll find those slightly longer visiting times are offset by only needing to go once during the working day (some may need two visits).

Six months later I am living a simpler, easier and more controlled life. In the day I am a buoyant, far more sociable and, I like to think, effective human-being. Just as Simon said I would be. I also sleep better as I don’t have to get up in the night to go to the lavatory.

My advice is this: if you’ve ever had any qualms about using a catheter, persevere or make an appointment with your local pouch specialist and ask him or her to show you how it works. You may be reluctant at first but once you’ve succeeded, you’ll never look back.
As for me, I’ll always be grateful to Simon and Beccy for converting a once bashful patient into a Catheter Convert.

If you’ve any concerns or want to discuss using a catheter, please contact me on 07939 110842 or cbrowne@brownemedia.co.uk I’ll be happy to talk to you. Or for a more professional opinion speak to your hospital’s stomacare department.

You can read all about Medena catheters in Simon McLaughlin’s exclusive survey in a  recent issue of Roar!


A version of this article first appeared in 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 all the way back to issue number 1, published in 1994.

See pouchsupport.org/join for further information.

Events

Ileo-anal Surgery – A Guide for Patients


Ileo-anal Surgery for Ulcerative Colitis – A Guide for Patients

Republished 11 April 2022

Zarah Perry-Woodford

Stop Press – Zarah Perry-Woodford will be participating in the Moderated Q&A session on Pouch Care at the Red Lion Group Internal Pouch Information day at Central Middlesex Hospital on Saturday, 14th May 2022.

In 2016, St Mark’s Hospital Academic Institute proudly announced its first ever book publication “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients”, written by Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital.

Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches.

The book is an invaluable resource for people living with or considering an internal (Ileo-anal) pouch or J-Pouch. You can find out more about the book and how to purchase by clicking on the image below.

The Red Lion Pouch Support Group is delighted to announce that Zarah will be participating in the Moderated Q&A session on pouch care at its Internal Pouch Information Day to be hosted at Central Middlesex Hospital on Saturday, 14th May 2022.

You can find out more about the Information Day and reserve your place by clicking here.

Register your place soon as places are limited!

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

P-word problems? Why not try a little yoghurt

RLG Notes Secretary Theresa Parr finds regular doses of her own home-made yoghurt help keep pouchitis at bay

Just what is it about pouchitis? What causes this painful seemingly incurable condition that many of us have suffered from time to time?

Years of research projects, in-depth case studies and scholarly medical papers have produced very little so far for patients and medical professionals to go on.

One possible remedy many pouchees turn to has been probiotics – live bacteria and yeasts that are good for your digestive system. However, the people’s favourite, VSL#3, has recently been discredited due to lack of scientific data or testimonials.

Antibiotics are the usual standby as they can give short-term relief and certainly help to allay some of the worst symptoms of pouchitis. 

But what about longer-term solutions? RLG’s Theresa Parr has her own unique method of anti-pouchitis control. “I’ve been lucky and have only had two mild bouts of pouchitis which was many years ago. I didn’t fall into the prescribing category and, as VSL#3 is very expensive to purchase, I looked at alternatives,” she says.

Her solution? Yoghurt. “For many years I’ve been making home-made yoghurt and, touch wood, it seems to be doing the trick and moreover it’s extremely simple to make,” says Theresa.Theresa uses a yoghurt maker she bought from the supplier Lakeland (www.lakeland.co.uk) some years ago. The device has an outer unit housing a heating element and an inner, removable plastic container.  Here then is the Parr formula:

“You put a small portion of your starter culture (plain yoghurt containing a balanced blend of bacteria which consume lactose) in the container, add milk (full fat, semi or skimmed according to your taste or waistline!), give it a good stir and then just ignore it for 10 to 12 hours. 

“If you want thicker yoghurt, then I suggest you strain it *. I tend to use Yeo Valley as my starter yoghurt but that is just down to personal taste. 

“Thereafter, you just use some of your home-made yoghurt to make the next batch and I only resort to shop-bought starter yoghurt if I’ve been away for a few weeks.

“Lakeland now make a new all-singing-and-dancing yoghurt-maker with an adjustable thermostat and a strainer for about £25, while Amazon (www.amazon.co.uk) sell similar for about £18. This can also make Greek-style yoghurt and cream cheese. Fancy!

“I like the fact that yoghurt has no artificial sweeteners, additives or preservatives (and I find I’ve usually eaten it all before it goes off anyway!) and, of course, you can add any extras you like to suit your palette. 

“It is also great as a base for salad dressing or with chives on jacket potatoes, etc.

“I do not know the precise strains or levels of active bacteria in yoghurt, but my pouch is a lot happier if I eat some on a daily basis.

And Theresa’s secret recipe for success? “I just throw some on my breakfast porridge!”

* Put a clean tea towel over a fine mesh sieve on top of a large bowl (at least 1 litre capacity). Then allow to stand until thin liquid stops draining through the sieve (about 1 hour).

Breakfast treat – cereal topped with yoghurt

This article first appeared in ISSUE 59: Summer 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 back to 1994.

Join Now

Events

Information Day 2020 – book your place now!

Information Day 2020 – book your place now!

Hopefully, you have already saved the date for the Red Lion group Information Day and AGM, 2020, which will take place on Saturday 25th 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.

(The information day is open to ALL, not just patients of St. Mark’s Hospital)

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 see highlights and download presentations from last years (2019) Information day here.

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 using the link below.

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

Register Now

 

Become a member of the Red Lion Group and attend the Information day at the discounted rate and other benefits.

Join Now

 


Confirmed Speakers

Dr. Yoram Inspector

We are delighted to confirm that Dr Yoram Inspector will be speaking again following his hugely popular presentation at the Information Day in 2018. He will be speaking on “The psychology of bowel (pouch) surgery”.

Dr Yoram Inspector M.D is a consultant Psychiatrist and a Psychotherapist and the Head of the Psychological Medicine Unit of St Mark’s Hospital which provides psychological treatment and support for people who cope with various gastrointestinal diseases and disorders.

Dr Yoram Inspector

Zarah Perry-Woodford
Many of you will be acquainted with Zarah Perry Woodford who will be speaking on the subject “Post-operative and long-term care of pouch patients“. Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches. She is also the author of the acclaimed book “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients“.

Zarah Perry-Woodford

Zoey Wright
We are also pleased to announce that we will have a Zoey Wright as a speaker. Zoey is a fitness model and media celebrity who will be celebrating one year to the day of her J-Pouch connection. She will be discussing her J-Pouch journey and training with a J-Pouch.

You can view Zoey’s website by clicking here or on the picture below.

Zoey Wright

Lucia Braz (Research Fellow at St. Mark’s Academic Institute)
Lucia Braz is a Registered Dietitian, trained at the University of Porto where she received a BSc Honours Degree in Nutrition and Dietetics and became a member of the Federation of Nutrition Therapy Practitioners (FNTP) and British Dietetic Association (BDA) in the UK.
In 2017, she stepped out to undertake a PhD programme under supervision of Professor Ailsa Hart and Professor Gary Frost splitting her time between St Mark’s Hospital and Imperial College London. Her main research interest is the role of diet and Short-chain fatty acids in Inflammatory Bowel Disease (IBD) and Pouchitis.

Lucia Braz

FURTHER SPEAKERS TO BE CONFIRMED.

Register Now

If you would like make a donation to the Red Lion Group please see our JustGiving link below.

Events

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…

Read more “Medication for your internal pouch – keep taking the tablets!” →

Search Resources

Filter Resources

Roar

All Videos

--Information Day 2015

--Information Day 2017

--Information Day 2018

--Information Day 2019

--Zoom 2020

--Zoom 2021

--Zoom 2022

--Zoom 2023

--Zoom 2024

--Zoom 2025

RSS News from St. Mark’s Foundation

  • Macmillan Colorectal Cancer Nurse Consultant Caroline Gee sits down with LEJOG fundraisers John and Wendy Cunningham for an exclusive chat!
  • September Updates from SMHF
  • Re:Mark’s 2025, Special Anniversary Edition
  • Summer Updates from SMHF
  • Latest News from SMHF
  • Spring Updates from SMHF
  • April is Bowel Cancer Awareness Month
  • Thank you for caring with guts!
  • Caring with Guts since 1835
  • November Updates from SMHF

Recent Posts

  • RLG monthly J Pouch forums on zoom
  • J Pouch related live webcasts scheduled for 2025
  • Has ulcerative colitis or related surgery impacted your ability to work?
  • Back to peak fitness after J Pouch surgery
  • J-Pouch anal and vaginal fistula study update
Privacy | Sitemap
The Red Lion Group is a UK registered charity number 1068124

© Copyright [wpsos_year] The Red Lion Group. All Rights Reserved.

Theme by Colorlib Powered by WordPress
  • Facebook
  • twitter
  • YouTube
 

Loading Comments...
 

You must be logged in to post a comment.