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.”

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].

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.