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! Issue 39: Christmas 2008. 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.

See pouchsupport.org/join for further information.

J Pouch and Vitamin B12 deficiency

J Pouch and Vitamin B12 Deficiency

It is very common for patients with ileo-anal pouch (J Pouch) to suffer with B12 deficiency but this may not be picked up by routine blood tests

Vitamin B12 is absorbed in the end ileum, which in the case of J pouch patients has been removed. It is therefore very common for J pouch patients to suffer from Vitamin B12 deficiency. 

Unfortunately, routine blood tests to show B12 deficiency can be unreliable as described in the NHS paper on the subject:  Click on the link below.

NHS Diagnosis: Vitamin B12 or folate deficiency anaemia

In particular, this paper explains that

• A particular drawback of testing vitamin B12 levels is that the current widely used blood test only measures the total amount of vitamin B12 in the blood
• This means it measures forms of vitamin B12 that are “active” and can be used by the body, as well as the bound or “inactive” forms, which cannot be used by the body
• If a significant amount of the vitamin B12 in the patient’s blood is inactive, a blood test may show normal B12 levels, even though the patient  cannot use much of it and might have Vitamin  B12 deficiency
• This is why it’s important for symptoms to be taken into account when a diagnosis is made.

See also Vitamin B12 deficiency following restorative proctocolectomy

In summary, it is recommended that if a patient with a J Pouch presents with relevant symptoms, they might well benefit from B12 supplements (usually in the form of B12 injections), even if blood test results show the B12 level is within the normal range. 

Pouch B12 deficiency for GPs

B12 deficiency is common amongst patients with ileo-anal pouch. However, the routine blood test to check for B12 deficiency is unreliable. This document, produced by the Pouch Nurses at St. Mark’s Hospital London, explains why the blood test may be unreliable and can be shown to a GP if you feel you have the relevant symptoms.

Download Now!

Medic Alert Card

We have also updated the Medic Alert information on our website to provide a full explanation of this B12 deficiency phenomenon. The medic alert page contains a comprehensive description of what ileo-anal pouch surgery involves and the issues and challenges faced by people living with an ileo-anal pouch. The reality is that ileo-anal pouch surgery is performed relatively rarely, and its possible that you may be the only pouch patient registered with your GP practice. It is understandable that you may know more about the procedure than your GP, and therefore you may both benefit if you share this information with him/her!

If you are a Red Lion Group member, you should have a “Can’t wait / Medic alert card“, which has a QR code which links to the medic alert information.

The Medic Alert online information and a downloadable copy can be found at pouchsupport.org/medic or by scanning the QR code on the card.

The Medic Alert information has been created by the Red Lion Group, with support from the Pouch nurses and Consultants at St. Mark’s Hospital the UK National Bowel hospital and pioneers in the field of the ileo-anal-pouch.

For further information about the Red Lion Group “Can’t Wait / Medic Alert” card click here.