Issue 16 Mitrofanoff Support Journal Spring / Summer 2021

Issue 16 | Spring/Summer 2021

Journal Together we will never be alone

Generation Z

we need your help

www.mitrofanoffsupport.org.uk Registered Charity Number for England and Wales 1145382

@mitrofanoffsupport

Contents

Spring / Su mmer 2021

Editor’s Welcome

3

Chair’s Update

4

New Trustees

4-5

Strategy Advisor

Member’s Story

6-7

Jo Lightning

Flexicare Sponsor Advert

8-9

Survey for 15-24 Year-olds

10

Board Members Renée Holmes Chairperson

John Thatcher

Legal Advisor

Sharon Fillingham Adult Nurse Advisor

Marathon 11

Lynda Kenison

Vesica Urology Sponsor Advert 12-13

Member’s Story 14-15

Marketing Advisor

Hunter Urology Sponsor Advert 16-17

Ben Bates

Ken Edwards

18

Aled Griffiths

18

Vesica Urology Ltd Celebrates its 10 Year Anniversary

19

Policy Advisor

David Rose

Bladder Esxtrophy Advisor

Advisors Louiza Dale and Angela Downer Paediatric Nurses

Kenneth Edwards Partnership Liaison

Staff Tania Levett Office Manager

Peak Medical Sponsor Advert 20-21

Catheters: The Basics

22

Quiz & Answers

23

How You Can Support Us

24

Details of our board members, advisors and staff can be viewed on the website.

Thank you to all our 2021 Sponsors GOLD SPONSORS

Advertising Enquiries

GOLD SPONSORS

Editorial Submissions

GOLD SPONSORS

Email: marketing@mitrofanoffsupport.org.uk

Contributions to the journal are welcome. If you have a story, article or letter please email marketing@mitrofanoffsupport.org.uk or call 07903 382013

BRONZE SPONSORS

Website

www.mitrofanoffsupport.org.uk /mitrofanoffsupport

@MitrofanoffSpt

@mitrofanoff_support/

@mitrofanoff-support-2012/

2 | Issue 16 | Spring/Summer 2021

www.mitrofanoffsupport.org.uk

Editors Welcome Hi, I’m Tania, the new Office Manager of Mitrofanoff Support. As I look back on the last year, I am astonished at how much has changed.

Before Covid, I was a freelance Nail Technician, it was more of a hobby job, something to do between school dropoffs, coffee mornings and box sets.

Covid Lockdown 1 for my family, of course meant homeschooling and my husband working from home. I like many so many other parents found this adjustment to be fraught with challenges. I have to confess I may not cut out to be a home school teacher but I have become an expert on street skating and latterly skating in the bowl and as I write this, at Finsbury Park Skate Bowl, I am watching my three kids (the third being my husband reliving his youth) zipping in and out with the clattering of Boards. So far so good on the injury front……

I don’t have a Mitrofanoff, nor does anyone in my family. So, how you may ask, did I become involved in a charity that I couldn’t even spell?! Well, I have a friend who has one.

Renée has been the chair of this Charity for nearly 4 years and is almost 5 years post-op. Our friendship predates her operation by many years and since her operation we have discussed one or two things Mitrofanoff related. When she mentioned that the charity’s office manager was wanting to step back from this role, it seemed natural for me to step up to the challenge. In hindsight there was little natural about it.

My professional background is in insurance as an underwriter and a broker. I stopped working when my daughter was born throwing myself into the joys of motherhood and subsequently into supporting school activities e.g PTA financials and fund raising activities.

everyone has been so supportive and has been very patient with all of my questions.

In the recent months I have made contact with our Sponsors and a number of other companies that produce catheters and complimentary products. In order to gain more knowledge of the products that Mitrofanoffers use. I have requested samples of anything related and now have a large box of catheters, stoma caps, leg bags and all of their related literature. For obvious reasons, I haven’t tried out any of the catheters, but I have stuck stoma caps on myself and conducted experiments as to the effectiveness of barrier creams and sticky remover spray!

Zoom has been an adventure. I had only used it once before, and now I set up and manage all sorts of meetings including our MONS groups. Please feel free to join the team - Mitrofanoffers, pre-Mitrofanoffers, parents etc. All are welcome with a cup of tea or coffee or not to hand.

As Covid restrictions ease and the weather is getting brighter I am looking forward to the new challenges that this year will bring us all.

I really hope that you enjoy this issue. Let me know the articles you would like to read, topics that we should be covering.

Even better send me personal stories which we would love to publish.

Wishing you all a great summer.

Best wishes,

Tania Tania Levett Editor, Mitrofanoff Support Journal E: info@mitrofanoffsupport.org.uk

As my younger child became more independent, it gave me time to support the wider community and along with a couple of local women, we set up a food-bank, run out of the basement of a nearby church. This is where I can still be found on Wednesdays, unloading & sorting deliveries from supermarkets, food charities and local stores who support us.

Under Neil’s stewardship I started in November 2020 and the last 6 months have been filled with so many firsts for me.

Firstly grappling with the charity’s 120 page office manual! It has been invaluable but daunting nevertheless. Based on the amount of time Neil & I have been on the phone or zoom I feel like I know him very well, even though we have never actually met in person.

I am thankful to all the new people I have met (socially distanced and usually via zoom) and all the new things I have learnt. I’m especially looking forward to meeting all of you, our members, Facebook family & everyone who has called or written to me at the “office”. It has been great speaking or emailing you all,

www.mitrofanoffsupport.org.uk

Issue 16 | Spring/Summer 2021 | 3

Chair’s Update 2021 started with quite a loud bang for a small charity. Firstly, we had a change in our charity’s hub in that Neil Lightning our office manager for over three years decided it was time to hand over the office reins. It’s a taxing and busy role which Neil had put his heart and soul into and the trustees are very grateful for his hard work and mega organisational skills.

Luckily for us, Tania has stepped in and thanks to Neil’s forward planning and support and Tania’s inherent learning prowess, the handover has been seamless. Please read Tania’s editorial column to understand how busy her first few months have been. This is also her first Journal which, I hope you agree, is a good ‘un’.

Then, we had enquiries not just from one but from three individuals who wanted to join our charity as trustees. Their bios are included in the journal and I think you will find them an interesting read. Lynda Kenison was a trustee some years ago.

As a partner of a Mitrofanoffer, Lynda has always been involved in the charity but returns to ensure our focus is in parallel with the needs of the Charity Commission. Like Lynda, many of you will have met David Rose (another keen charity supporter) who has joined us to focus on the marketing of Mitrofanoff Support.

Finally, Ben Bates came to us to concentrate on Mitrofanoffs and their role in the congenial abnormality Bladder exstrophy.

So watch out for more information on our website.

As a trustee team we are thrilled to welcome these newbies -hoping they know what they are letting themselves in for!

So much and yet so little has happened in the last 6 months.

We are now emerging from another set of Covid restrictions, vaccines in arms and the possibility of choices coming ever closer.

My fingers are firmly crossed as I whisper the potential of a Patient Education Day that we are keen to host in London in September. These events are special, enabling us, our families and our children to learn, ask those pesky questions that have been nagging at us but as importantly interact in a social forum with others that we naturally connect with and who understand our predicament. Similarly we particularly value the participation of children who, in turn, appreciate the advice given by their peers (young and older).

In the meantime, we shall continue hosting via Zoom our MONS events. A couple of hours again led by Mitrofanoffers who are able to share, ask questions and interact with others on the routines, complexities and opportunities of having a Mitrofanoff. These sessions always have medical experts on hand to provide sensible, practical and most importantly helpful advice.

Information regarding these events can be found on our website, closed Facebook group and various other Social media platforms. We ask you to register your details and should you have any questions Tania or I are always available to help.

Renée

New Trustees Ben Bates Hi there, my name is Ben. I was born with Bladder Exstrophy 22 years ago and have had a Mitrofanoff since the age of 3. Having self-catheterised every day since, I guess I’ve never really known any other way to have a wee! I have never let it stop me from doing anything and have been fortunate enough to travel around the world representing the Great British Fencing Team. In addition to my own personal experience, I am currently a 4th year medical student and so have a foot in both the patient, and the medical professional camps.

Whilst I have always found the support for my medical needs superb, I have often been disappointed at the lack of resources provided for more lifestyle related issues. Growing up with a Mitrofanoff particularly during puberty and adolescence can be very difficult. I remember in my mid teenage years I would have loved to know someone in a similar situation, a few years ahead, so I didn’t have to learn everything myself by trial and error. I will be working in conjunction with the other trustees to

4 | Issue 16 | Spring/Summer 2021

hopefully create a useful online resource on the website for the younger members. Whenever I can I join the MONS calls and am always happy to answer any questions or just have a chat! www.mitrofanoffsupport.org.uk

New Trustees Lynda Kenison I started my career in the oil industry, before moving to the charity sector where I worked for 25 years, most recently managing a cancer support centre for patients and their families.

Having retired in July 2019, I was keen to use my skills and experience to help people. Prior to the coronavirus pandemic I volunteered at a care home, assisting with the weekly toddler group and the interactions between the residents and the children. I was also a volunteer with the fundraising team at the Royal Marsden Hospital (RMH) and was about to start at the Maggie’s cancer centre at RMH, as well as train to be a reading helper. Unfortunately all these initiatives are currently on hold, but I’m looking forward to resuming them, as well as attending Pilates/aerobics classes, going to the cinema/theatre, eating out, travelling and, like everyone else, doing other normal activities!

I first became aware of Mitrofanoff Support in 2012, when my husband’s bladder cancer returned; we are very fortunate that my husband Jim is now well and has had few problems since his Mitrofanoff operation. The support we received from people in the Charity was amazing and our first Patient Education Day was incredible – hearing how the operation had transformed people’s lives and how the Charity had helped people was inspiring: we soon became volunteers, assisting at events and representing the Charity at clinical conferences. I also led the Organisational Committee and in early 2015 became an

affiliate member of the Board, working with the trustees. Due to pressures of a new job, I resigned from this position in August 2016, but continued volunteering. Following my retirement, I was delighted to be asked to join the Board of Trustees in January 2021.

David Rose Hi everyone, my name is David Rose and I’ve been using a Mitrofanoff since the age of 7, back in 1995, which was carried out by Great Ormond Street Hospital. I’ve had various issues with my bladder and kidney from birth, due to having an ultra-rare disease affecting just a handful of people globally.

Occipital Horn Syndrome is copper deficiency and a connective tissue disorder.

It was a real pleasure to join Mitrofanoff Support as one of the trustees in January this year. I look forward to raising the profile of the charity and helping out with building relationships with urology device companies, Mitrofanoff users and medical professionals.

For the last 3 years, I’ve been working for Rare Revolution Magazine - a magazine focusing on rare diseases. I absolutely love working for the magazine and have met many fantastic people within the rare disease community.

I’m extremely passionate about speaking about my rare disease. I’ve been lucky to speak at many rare disease www.mitrofanoffsupport.org.uk

conferences around the world and do talks and campaigns for pharmaceutical companies.

Issue 16 | Spring/Summer 2021 | 5

Member’s Story

My Mitrofanoff Journey: Aimee King Before:

I was born with spina bifida, which caused incontinence and meant I was in nappies day and night. I had three operations when I was younger, to remove a bone from my spine and find out the size of my bladder; it became apparent that I would need surgery to gain control of my bladder, as it could only hold 30ml of urine, that’s just two Tablespoons of liquid. Being in nappies didn’t affect me when I was younger, as I didn’t know any different, but it had its challenges as I grew up and went to high school. My first school was a huge challenge as I suffered a lot of bullying; I was made fun of for having to leave lessons to visit the bathroom, called names and accused of “smelling and being disgusting”. I was ashamed to tell everybody the truth in case the bullying got worse.

When I was twelve or thirteen, the Mitrofanoff was bought up in an appointment with my specialist. I knew there was a lot to think about; my Mum left the decision to me and we had many appointments to see people who had the Mitrofanoff and learn more about it. As time went on the bullying at school got worse and this influenced my decision, as initially I was too ashamed to agree to the surgery in case people found out and bullied me more. Eventually I decided to have it and also move to a different school.

At my new school there was no bullying and I had such a positive experience, which I’m so thankful for. It shows that there are good people, you just need to find them. I was so disheartened by my experience at my first high school, that I didn’t believe I would ever have friends or a job or a happy life.

6 | Issue 16 | Spring/Summer 2021

However, that is exactly what having my Mitrofanoff gave me; I had the surgery a few months after joining the new school, when I was fourteen and about to do my GCSEs, and it was the best decision I ever made.

During:

The day I went into hospital for my surgery I remember carrying a little red and yellow suitcase full of things to keep me busy, and being so excited that I only had to take two nappies with me, as it was the last time I’d ever need them! I went into hospital three days before the surgery, as I had to have a drink that would essentially flush out my bowels, as I was also having a bladder augmentation which used part of my bowel to enlarge my bladder. The drink is disgusting and you can expect to run to the toilet a lot, but it was all worth it in the end! On the day of the surgery I went down at 7am, and the surgery took ten hours – not everybody will have a bladder augmentation, so surgery times will vary for everyone.

I was in hospital for around a week. It is quite a painful procedure and you come out of surgery with a lot of wires and tubes everywhere which can be scary, but they all have a purpose. I had a feeding tube as I wasn’t allowed to eat straight away and a cannula in my neck for the medication. I remember feeling terrified, but I was also excited to finally be free of nappies. For me, recovery time was six months and I spent it at home trying to keep myself busy. It was a long road, but I had fantastic support and managed to get through it … and pass all of my GCSEs!

After:

I had a catheter stitched into my belly button to help keep my channel open until my body got used to it. I went in to hospital a few months later to have the catheter removed and learn how to use the Mitrofanoff. I was able to choose the catheter

www.mitrofanoffsupport.org.uk

I found most suitable and was told the importance of keeping everything clean. It was scary at first, my hands would always shake, but now I don’t think about it, as it has been part of my daily life for almost nine years.

At first I kept it a big secret, as the bullying from my previous school stuck with me and I didn’t want anybody making fun of me again. I finally wore a bikini for the first time six years after my surgery, as I struggled with accepting my scar. But, to anybody worried about showing it off or having people seeing their scar, I believe it holds your journey and strength. I will now wear a bikini anywhere (where appropriate of course, not in the supermarket!) and don’t hide my body.

I am so thankful for the doctors and my surgeon who helped me through all of this, as they gave me a whole new life.

However, a big issue I’ve come across is that many medical professionals have not heard of the Mitrofanoff; my hope is that by speaking out, we can help educate people to ensure we get the correct treatment in case of an emergency.

Ace Stopper:

The one hiccup in my journey is that after a few years my channel began to close, due to scar tissue. I had surgery to

www.mitrofanoffsupport.org.uk

revise my Mitrofanoff, but unfortunately after six months it started closing up again. I tried creams and sticks that ‘burnt’ the scar tissue around my belly button, but nothing worked until I introduced an ace stopper into my routine. This is a small silicone plug with a circle disc at the top, which I insert into my belly button and leave in between catheterising and overnight, to stop the channel closing. This is just my personal experience as I scar easily, so the scar tissue will continue to return; other people can have this surgery and never need one.

Final thoughts:

It’s hard to deal with such a big change to your body – and life – but you are strong for going through this and deserve to live life to the absolute fullest. Learning not to be ashamed has given me the freedom and strength to help speak up about my Mitrofanoff. More awareness is important to ensure people know about this fantastic operation that changes lives for the better. It’s important to know that everybody has a story, and maybe we even share a similar one!

This Member Story was written by Aimee King in her personal capacity. The opinions expressed in this article are the writers own and may not reflect the view of Mitrofanoff Support Charity or experience of other members.

Issue 16 | Spring/Summer 2021 | 7

8 | Issue 16 | Spring/Summer 2021

Flexicare Medical Ltd. Cynon Valley Business Park, Mountain Ash, CF45 4ER +44 (0)1443 471570 enquiries@flexicare.com +44 (0)1443 474222 www.mitrofanoffsupport.org.uk

www.mitrofanoffsupport.org.uk

Flexicare Medical Ltd. Cynon Valley Business Park, Mountain Ash, CF45 4ER +44 (0)1443 471570 enquiries@flexicare.com +44 (0)1443 474222 Issue 16 | Spring/Summer 2021 | 9

Generation Z - We Need Your Help Survey for 15-24 year-olds At Mitrofanoff Support we are all about helping you navigate your way through life with your Mitrofanoff. We feel we could be doing more for young adults. That is why we have put together a survey designed to collect information on how you feel and come up with a plan that will shape the way we support 15-24 year-olds in the future.

This is a pivotal time in a person’s life; you are striking out on your own, taking ownership of your health and trying to find your way in life. I’m Harriet, and I was 17 when I was first told I was to have a Mitrofanoff and was moved to adult care, no longer seen as a child within paediatrics.

adult either. The majority of the people in the room were much older than me, so I didn’t ask any questions and my father did all of the talking from a parent’s point of view. Looking back I wish I’d had the confidence to ask the questions I wanted to ask, rather than feel I couldn’t because the room was full of “proper grown-ups” who I thought were going to judge me.

This is where the idea of this survey came from. We want to understand what 15-24 year-olds struggle with or need support with, as well as what they have, or are doing, which may help others. From the answers and comments from the survey, we will look at what we can do that will particularly suit this age group – possible ideas at this stage include: • A section on the website aimed at 15-24 year-olds • Vlogs on the website, answering questions posted by

people aged 15-24 • Setting up a separate Instagram page aimed at this

age group, with guest editors (you) • A group session for this age group at our Patient

Education Days, when we are able to hold them again The survey has been put together by me (22) and all the questions are designed with the age groups in mind. The answers will be anonymous and unable to be tracked back to you. So if you are aged between 15 and 24 and wish to take part, please go to our website www.MitrofanoffSupport.org.uk where you’ll find the survey on the home page.

Marathon need you!Support Patient SS Journal 2021 Around this time–I We went to a Mitrofanoff Education Day in Walsall, West Midlands. After the morning session, which outlined what to expect from the surgery and life afterwards, we were split into two groups. The children and parents went into one room with a paediatric nurse, while the adults went into another, with the charity’s patron and the adult nurse. As I had transitioned into adult care I went into the adult room, yet once the afternoon session started, I felt I was not an

We need your help!

Help us, to help you!

Thank you.

We have 2 places in the Virtual Marathon up for grabs.

Marathon – 3 WeOctober. need you! Run SS around Journal 2021 Saturday your neighbourhood, make your own ma Contact Tania at info@mitrofanoffsupport.org.uk We need your help!

We have 2 places in the Virtual Marathon up for grabs.

Saturday 3 October. Run around your neighbourhood, make your own map.

Contact Tania at info@mitrofanoffsupport.org.uk

We need your help!

We have 2 places in the Virtual Marathon up for grabs.

Saturday 3 October Run around your neighbourhood, make your own map.

Contact Tania at info@mitrofanoffsupport.org.uk

10 | Issue 16 | Spring/Summer 2021

Notes for Nicky

www.mitrofanoffsupport.org.uk

Marathon 2021 Marathon I am so excited to have been given the opportunity to run in the London Marathon 2021 on behalf of Mitrofanoff support. I retired in 2019 having worked as a Clinical Nurse Specialist in Urinary Diversions for 22 years.

The Mitrofanoff support Charity was set up by one of my amazing, inspirational patients Kyla, through her own personal experience she identified gaps in service provision with regard to patient support. Through lived experience and collaborative work with healthcare professionals she worked tirelessly to improve the patient journey and Mitrofanoff Support was founded.

During my career I have been inspired by the strength, determination and resilience of those who have undergone this complex surgery and have done my upmost to support them through what is an extremely difficult journey.

their families outside of the NHS. This will be the 10th London Marathon I have run, but my first for Mitrofanoff Support.

I set a goal for myself that I would like to run 10 Marathons so I am hoping to meet that goal and I feel very honored to be running it for this charity. In my experience at approximately mile 18-19 you hit the wall, at this point I swear I will never run it again! This feeling is short lived as once I cross the finish line I’m all set to put my name down for a ballot place the following year!

Training is a key part to any Marathon and with 6 months to go I need to get started. I generally increase the length of my long runs to at least 23 miles prior to race day. There is a taper period before the event where you will be running distances of only 3-5 miles and in the final week no running at all. In the early days this gave me great anxiety as I thought my muscles would lose their strength but muscle memory is an amazing thing. Running such a long distance takes its toll on your body and I generally develop some sort of injury!

My joints are not as good as they were, but I promise you I will do my very best to complete this Marathon and raise as much money as I can for your amazing charity. Afterwards I will send in a report of my race day adventures.

If you would like to sponsor me please visit:

https://uk.virginmoneygiving.com/suefell

In addition to my clinical work I have always enjoyed undertaking events and raising funds for charities which provide vital much needed additional support for patients and

Many thanks

Virtual Marathon

it was the perfect charity to run for.

Hello, my name is David Maddox and I am 23 years old. I live in Lytham St. Annes, Lancashire, which is about a 10 minute drive from Blackpool.

Since I found out I had been accepted for the virtual London marathon I’ve not been too strict with my training. I didn’t want to burn myself out too early and lose the running bug before I’ve even started my training. So at the moment I’m just taking it easy and trying to get a few miles in my legs each week and really fall in love with my running.

Before Christmas my friend and I set ourselves the challenge of running a half marathon without any prior training to improve our physical and mental wellbeing. We were both on furlough and we thought this was a good way to do something positive with our time off work.

In November we succeeded in doing it and both felt that the next logical step would be to try and challenge ourselves by doing “the full Monty”, and take on a marathon.

Neither of us are massive runners but for some reason it’s a challenge that we both really want to take on. As soon as we finished the half marathon I was looking at ways of entering the London marathon and trying to find a charity that’s close to my heart. As soon as I found the Mitrofanoff Support I knew it was meant to be.

My girlfriend underwent full bladder removal surgery almost 3 years ago and had a Mitrofanoff to replace it and I thought

www.mitrofanoffsupport.org.uk

Sue Fell

The weather has made a massive difference in the last few weeks and actually running in the sun is like heaven compared to rain and sleet. For the next few months I’ve managed to talk my girlfriend into being my personal “Elite Performance Director” and push me to get out on some longer runs with her accompanying me on her bike for moral support and drink supplier.

David Maddox Issue 16 | Spring/Summer 2021 | 11

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•

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Four eyes are better than two (providing improved flow and drainage) For samples please email me on: adrian@vesicaurology.com or phone me on: 01753 445087

Vesica Urology Ltd PO Box 4145 Slough SL10QA Phone : +44 (0) 1753 445087 Fax : +44 (0) 1753 447446 Mobile : +44 (0) 7948 172607 adrian@vesicaurology.com www.vesicaurology.com

OptiSmooth® is a registered trademark, Mitro® is a registered trademark OPTISMOOTH MITRO IS A UK UNREGISTERED DESIGN 2011

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OptiSmooth Mitro XL Key Features •

For the first time 4 unique oversized Xtra Large (XL) Heat Polished eyes. Developed especially for mitrofanoff bladder drainage. The oversized eyes will help to flush out the thick mucus produced when bowel tissue is used in the bladder reconstruction. Leading to potential improvements in mitrofanoff drainage and reduced infections.

•

The four Xtra Large (XL) eyes are also heat polished and extremely smooth. Maximizing comfort on insertion and removal.

•

Smooth uncoated PVC nelaton catheter (requires additional water soluble lubrication).

•

Available in 40cm, 10ch, 12ch, 14ch (Charriere sizes)

•

Flexible funnel connects securely to an external collection device such as a night drainage bag.

•

Meaningful product codes OSMXL for OptiSmooth Mitro XL the next two numbers represent the catheter length and the final two numbers are the charrière size (catheter thickness).

•

Can also be used for Ace procedures.

Uncoated nelaton catheter with 4 unique oversized xtra large (XL) Heat Polished drainage eyes Requires additional water soluble lubrication (For single use only)

The New Mucus buster

Four perfectly formed extra large heat polished drainage eyes.

Four eyes are better than two (providing improved flow and drainage) L AT E X

To el Pe pen O

Mitro XL

Pe e Op l To en

For samples please email me on: adrian@vesicaurology.com or phone me on: 01753 445087

Nelaton Catheter with 4 heat polished xtra large (XL) drainage eyes for Single Use Only

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Vesica Urology Ltd PO Box 4145 Slough SL10QA Phone : +44 (0) 1753 445087 Fax : +44 (0) 1753 447446 Mobile : +44 (0) 7948 172607 adrian@vesicaurology.com www.vesicaurology.com

OptiSmooth®, Mitro®, MitroXL® are registered trademarks OPTISMOOTH MITRO IS A UK UNREGISTERED DESIGN 2011 OPTISMOOTH MITRO XL IS A UK UNREGISTERED DESIGN 2016

Member’s Story Rachel Ingram It all started when my second child, my daughter, was born in 2012. Beforehand, I had lived a completely normal life – a dancer throughout childhood and then I become a Mum at 18 when my son was born in 2011.

My second pregnancy had been great until the last few weeks, when it was agreed that I would be induced five days early; I had been quite unwell for a few weeks and had begged for a C-section, but the doctors didn’t agree.

Induction day came with a lot of worry, problems and complications, but all that mattered was that the baby was here and she was safe and well. I had a few relaxed hours on the ward with her and because I had been given a spinal block, I had to have a catheter put in because I couldn’t get up to use the toilet. This was removed and I was told I needed to do “three good wees” to be able to go home. I had been drinking quite a lot of water, but each time I was emptying my bladder, the midwives were telling me it wasn’t a sufficient amount. So back I went to my bed, drinking lots and then trying again.

Eventually I had done three wees that weren’t quite enough, but the doctor said it was probably a bit of trauma from having the catheter and it would improve, so he said I could go home.

Over the next six months I gradually realised that something wasn’t right and in fact it was getting worse. I was struggling to pass urine, I was practically forcing it out. When my daughter was six months old, I woke up one day in agony. I looked about six months pregnant, rushed to the toilet and couldn’t pass even a drop of urine. For two hours I sat there crying and screaming in pain, desperately trying to go, but still nothing.

Eventually we spoke to my GP who sent me straight to my local A&E department. There I was seen by the most rude, unkind doctor I had ever met, who told me “it’s impossible for a 20 year old to not pass urine – go sit on the toilet, close your eyes and count to 10. It will happen!”

At this point, my mum was very angry and couldn’t believe he was speaking to me in that way, but I did what he told me and still couldn’t go. When I got back to bed, barely able to stand up with the pain, my mum demanded that a nurse come to see me, who instantly knew something was seriously wrong. She rushed off and came back with a bladder scanner which revealed I had over 2,000mls in my bladder and was ‘in retention’. Things started moving very quickly at this point – I was catheterised to drain my bladder, given very strong pain relief and then transferred to a local hospital that had a urology department.

During my stay at this hospital, a consultant asked me if I had ever heard of Fowler’s Syndrome, which I hadn’t. He said my situation and my symptoms were a fit for the tests and that he would refer me to London to have this done. Unfortunately, because Fowler’s Syndrome is so rare, the waiting time for these tests was quite long, particularly as at the time, only one doctor in London could perform the test that diagnoses

14 | Issue 16 | Spring/Summer 2021

it. By March 2015, after two and half challenging years, I was desperate for answers. I was very fortunate that my Dad paid for me to have the testing done privately and in April 2015, I travelled to meet the consultant Dr Panicker at Queen Square.

Over a couple of hours, I had three specific tests: it was the third and final test that confirmed my diagnosis, there and then. Getting the diagnosis was the biggest relief I had ever felt! I finally knew I wasn’t crazy and there was a reason for all the struggles I had faced. It turns out the traumatic childbirth was the “trigger” and the reason why I had developed Fowler’s Syndrome.

Fowler’s Syndrome was first described in 1985 as a cause of urinary retention, an inability to pass urine normally. It is usually seen in young women between the ages of 20-30. The bladder’s sphincter muscle is unable to relax and therefore women are unable to fully empty their bladders. In addition to urinary retention, Fowler’s Syndrome is associated with frequent urine and kidney infections, and pain in the lower abdomen and lower back, specifically the kidneys.

Since April 2015, I have had countless operations. I had a suprapubic catheter inserted in my abdomen for four years, which needed to be changed every 12 weeks under a general anaesthetic. I had four operations for a sacral nerve stimulator,

www.mitrofanoffsupport.org.uk

which is like a pacemaker for the bladder – I was desperate for this to work and hoped to so avoid further, bigger surgeries.

Then after this failed and I was told the device had to come out, I was referred to Jeremy Ockrim, a leading urology consultant, for my next decision...

Mitrofanoff or Urostomy?

I went to this appointment quite open minded, because I have a lot of trust in these professionals and what they recommend for their patients. If he had said I was more suited to a urostomy, I’d have been hesitant, but would have listened. However, the Mitrofanoff is what I really wanted. It was important that what I had done was easily reversible, easily fixable and was something very easy to manage. I didn’t want to be permanently attached to a bag. When My consultant gave me the go ahead for the Mitrofanoff I was thrilled!

I had my Mitrofanoff done in March 2019. It didn’t come without problems: Firstly they tried to cancel on the day, but we found a way around that. Then, after 11 long days in hospital, I was faced with a long, tough recovery that was made worse by getting a blood clot in my right leg and developing bronchitis.

Eventually, after six months, I started to feel human again.

www.mitrofanoffsupport.org.uk

I am now two years post-Mitrofanoff surgery and it is the best decision I have ever made! I have come off 20 medications per day, I only get occasional infections instead of back-to-back ones and my pain levels have improved massively. However, most importantly, I have gone back to work full-time as a teaching assistant apprentice and am able to be a Mum to my children again!

To anybody who is unsure about the Mitrofanoff operation, try not to be scared. Yes, I have had problems crop up and yes, I have had two operations to correct minor issues – one recently because of Covid putting a stop to routine surgeries – but I never imagined my life would change so drastically and so positively. I longed for some improvement in my quality of life, but never imagined it was possible to be this good again.

There may be bumps in the road ahead, but as a lovely lady I work with recently told me, “If you can dream it, you can do it!” ... and I firmly believe this. Good luck to everyone on their Mitrofanoff journey.

This Member Story was written by Rachel Ingram in her personal capacity. The opinions expressed in this article are the writers own and may not reflect the view of Mitrofanoff Support Charity or experience of other members.

Issue 16 | Spring/Summer 2021 | 15

SOME CHALLENGES OF LIVING WITH A MITROFANOFF One of the many challenges of living with a Mitrofanoff is your stoma site. Some scarring can lead to unsuccessful and uncomfortable insertions, and difficulties with inserting your catheter could lead to urine retention and (yet) another trip to hospital!

The solution could be a catheter with a tapered tip.

Urinary tract infections can occur when the bladder is not fully drained.

The solution could be a catheter with four eyelets for better drainage.

Are you using a hydrophilic coated catheter (water activated), and still getting some UTIs? Have you asked yourself what is contained within the coating of your current catheter? Is it solvent (petroleum) based and are you sensitive to a chemical within the coating?

The solution could be a catheter with a natural water based hydrophilic coating.

Imagine if you could use a catheter with a tapered tip, flexible enough to navigate the bends and loops of your Mitrofanoff, with four eyelets for better drainage and if required natural water based hydrophilic coating. Well you can!

YOU CAN SWITCH! Interested in trying a free sample?

Contact us by emailing support@hunterurology.com or call us on 01392 340169



| www.hunterurology.com

16 | Issue 16 | Spring/Summer 2021

www.mitrofanoffsupport.org.uk

TWO ISC CATHETERS SPECIFICALLY DESIGNED FOR MITROFANOFF USE:

• Uncoated.

• Unique 360 flexible tip for precise and easy insertion.

• Tapered tip for maximum comfort.

• Engineered with 4 smooth eyelets.

Smooth flexible tip for easy insertion

• Natural water based hydrophilic coating.

• Containing Aloe Vera to produce a silky, smooth coating with no sticky residue.

• Includes an easy to open water sachet.

• Unique 360 flexible tip for precise and easy insertion.

4 Smooth eyelets

• Engineered with 4 smooth eyelets.

www.mitrofanoffsupport.org.uk

Issue 16 | Spring/Summer 2021 | 17

Ken Edwards A Stoma-Friendly Society!

While still in extraordinary times, it does look like life will start getting back to some kind of normality as the year progresses. Meanwhile, I am though enjoying the Mitrofanoff Online Networking Sessions (MONS) and strongly encourage more people to join in; although held virtually via Zoom, actually being able to see one another and get support is great. I have also done a podcast with Hunter Urology about living with a Mitrofanoff, which was an interesting experience.

I continue to work closely with Colostomy UK. I have completed their safeguarding programme, two training sessions on stomas and sex education and their volunteers course, which enables me to work more closely with the stoma nurses and help with reassuring those people who are about to have a stoma. I have also had an article about my stoma journey in the Tidings magazine.

Colostomy UK have now partnered with AccessAble, as part of the Stoma-Friendly Toilets campaign, who are producing an accessibility guide with detailed information about venues all over the country. Stoma-friendly toilets will be listed in the guide and will be searchable on the AccessAble website and the app, so that ostomates can see which shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, colleges, universities, hospitals, etc. have stoma-friendly toilets.

To view the AccessAble Guide, visit www.accessable.co.uk To find out more about the Stoma-Friendly Toilets campaign visit, www.colostomyuk.org/campaign/toilets Colostomy UK is proud to have been working actively with a number of airports across the UK to train and support them (virtually) in meeting the needs of travellers with a stoma and other hidden conditions. In the UK Civil Aviation Authorities Airports Accessibility Report 2019/2020, for the first time no airports were ranked as “poor” in terms of accessibility and all airports were ranked as either “good” or “very good”. This is an excellent step forward for disabled and less mobile passengers.

Talking about normal things like flying away on holiday and going out to restaurants and cinemas, I hope that we will soon be able to get together physically at a Patient Education Day. Until then stay safe and keep well.

Ken Edwards Partnership Liaison

Aled Griffiths Hi everyone, I hope that you are all well and managing to make the most of the current lifting of restrictions.

Things have been strange over the last twelve months for all of us but as daft as it sounds my year hasn’t been too bad. I have had to change the way I do a lot of things but to be honest none of it has been a major change. The strangest thing that happened to me was exactly one year and three days after the first national lockdown…. I received my letter to say that my shielding would end in April. Normally I would have said that’s great but this time I was annoyed as I hadn’t been told that I should shield.

Hopefully by the time you read this I will have had my second vaccine jab and will feel a bit safer.

I knew I was vulnerable but not to the point that I needed to shield. It wouldn’t have made much of a difference as I had

18 | Issue 16 | Spring/Summer 2021

been shielding for most of the year anyway because of my parents but it would have been nice to have been told.

I started sixth form last September so half of the time since then I have been working from home which sounds like an easy time, but I have still been busy with each of my subjects.

I don’t know how you guys have coped with your hospital appointments over the last year, for me things have actually worked out better. Most of my appointments are at various hospitals around the UK so require lots of travelling, however due to the pandemic they have all gone to phone or video calls which has been brilliant as it saves lots of time and expense.

For me, the only negative thing about the pandemic by way of restrictions was not being able to meet with my friends or go target shooting. So, the lifting of these restrictions is really nice and I will make the most of it when I can.

Well, I hope you all stay safe and enjoy the normality when it returns and hopefully I will get to see you at one of the Patient Education Days when they are restarted.

Aled xx www.mitrofanoffsupport.org.uk

Advertisement Feature Vesica Urology Ltd Celebrates its 10 Year Anniversary Firstly I want to send my best wishes to all at Mitrofanoff Support. It is has been a difficult year for all of us facing unknown challenges with COVID-19. I do hope you are all well and staying healthy and keeping positive.

and 50cm and in 8ch-18ch charriere sizes. Feedback on these catheters has been excellent, with comments ranging from increased drainage and flow to actually helping to postpone a young boy’s kidney transplant. The OptiSmooth Mitro catheter drained so effectively that his infections reduced, stabilising his kidneys.

Vesica Urology Ltd was founded in 2010, so I feel this is a good time to thank the many people who have supported my company over these last 10 years.

Having identified that 4 large drainage eyes offered such an improvement to individuals, I decided to develop a new catheter. Working with my manufacturer to add the largest drainage eyes possible, whilst taking into consideration the catheter thickness (charriere size), OptiSmooth Mitro XL was created. It has 4 extra large (XL) drainage eyes developed specifically to help improve drainage flow in those individuals who produce large amounts of mucus. The OptiSmooth Mitro XL is now being offered in the major centres across the UK as part of their catheter choices.

I first learnt about bladder augmentation procedures such as the Mitrofanoff back in 1995-6 when I was working for a large company involved in continence care. At this time Mitrofanoff procedures were mostly undertaken at specialist centres such as UCLH, GOSH and John Radcliffe, with so many continence advisor departments wanting to know more about bladder augmentations.

With the help of Sharon Fillingham and Rachel Leaver from UCLH, Sue Keeble from The Portland Hospital and Susie Easton from The Battle Hospital Reading, we ran a series of Mitrofanoff study days, inviting continence advisors from all over the UK to facilitate a greater understanding of the Mitrofanoff procedure.

I personally learnt a great deal from those who participated and I’m extremely grateful to everyone who helped to make these educational days such a great success.

It was generally understood that if bowel tissue had been used in augmentation procedures then mucus formation could occur, often causing impaired drainage or blockage of conventional 2-eyed catheters with smaller drainage holes. Although 4-eyed catheters did exist they were not readily available.

In 2010 when I formed my own company, Vesica Urology Ltd, I wanted to develop a new range of special 4-eyed catheters . The OptiSmooth Mitro catheter was launched in 2 lengths of 40cm

I know a lot of you have been worried about the effect of COVID-19 affecting product supply. Vesica Urology Ltd has taken steps to increase the product availability of OptiSmooth Mitro and OptiSmooth Mitro XL catheters. Following a recent very large sea shipment we are now keeping a much increased stock level which is held in new warehouse space. This will ensure continuity of supply for the many people who use my products.

I am very grateful to Mitrofanoff Support, proud to be a Gold Sponsor and I am looking forward to working with you all for the next 10 years.

With warmest regards

Adrian English Vesica Urology Ltd.

Adrian (second from the left) with Dan Wood (centre) after skydiving for Mitrofanoff Support in 2018

www.mitrofanoffsupport.org.uk

Issue 16 | Spring/Summer 2021 | 19

Frequent or Occasional Leakage?

Is Staying Dry Your Biggest Concern?

Super Absorbent Mini Stoma Caps Could Be The Solution...

Integral super absorbent pad Skin friendly hydrocolloid adhesive Discreet and easy to apply Three sizes available on prescription Actual Size

Call FREEPHONE 0800 652 0424 or email info@peakmedical.co.uk for samples and quote promotional code: M160

20 | Issue 16 | Spring/Summer 2021

Supporting each other

www.peakmedical.co.uk

Exclusive UK Distributor For

Ostomy Products

www.mitrofanoffsupport.org.uk

Non-coated Nelaton Catheter with 4 Drainage Eyes and Introducer Grip Designed specifically for the drainage of urine from a Mitrofanoff catheterisable channel. MCath4® can also be used for urethral catheterisation and ACE procedures.

MCath4® is a cost-saving alternative to your usual 4-eyed catheter.

Ultra Smooth Polished Eyes

High Quality Smooth Non-coated PVC Catheter

Four staggered heat polished eyes for improved drainage, especially where mucus is a problem. Engineered to an exceptionally smooth finish for a safer insertion and removal.

Requiring water soluble lubrication prior to use.

Flexible Funnel For a secure connection to a night drainage or other urine collection system.

Green Introducer Grip Soft but firm green introducer grip to assist with a more precise and hygienic insertion.

Available in a 40cm length in various charrier sizes: 8Ch, 10Ch, 12Ch, 14Ch, 16Ch and 18Ch.

Product Information Label Self-adhesive product information label for convenient record.

Find us on:

Try our UltraSmooth MCath4® Catheters.

Simply call FREEPHONE 0800 652 0424, and quote M159.

For more information on our UltraSmooth MCath4® Catheters, please visit our website: www.peakmedical.co.uk www.mitrofanoffsupport.org.uk

Issue 16 | Spring/Summer 2021 | 21

Catheters: The Basics What Is A Catheter?

continent urinary diversion such as a Mitrofanoff.

A catheter is term used for a tube which can be inserted into a body to remove or instil fluids. Catheters may be used across different medical specialities such as Urology, Cardio, Gastrointestinal and Neurovascular.

A self-retaining catheter is likely to be placed supra-pubically during your Mitrofanoff surgery and left in place until the catheter in your Mitrofanoff is removed and you are able to catheterise your tract. The most common self-retaining urinary catheters are Foley catheters, named after the person who invented them, Frederick Foley. They stay in place with a balloon which is inflated with sterile water or a glycerine solution.

There are different types of Urinary catheters, these are commonly split into two categories, self-retaining/ indwelling or intermittent.

Indwelling catheters may be used urethrally; supra-pubically through the abdominal wall directly into the bladder; or via a

Foley Catheter

Eyelets

Eyelets

An intermittent catheter does not have a balloon and is designed to be passed into the bladder either urethrally or via your Mitrofanoff tract to drain the bladder and then removed.

An intermittent catheter may need to be passed around 6-8 times per day to drain your bladder.

Valve Shaft

Valve

Shaft Funnel

Balloon

Funnel

Balloon Intermittent Catheter

Shaft Tip

Shaft Funnel

Funnel

Catheters may be made from different materials dependent on how long they need to be in the body. Materials commonly used are PVC, Latex and Silicone.

All catheters have a tip which may be shaped to ease insertion into the bladder- the most common tip is a rounded/ bullet tip. Other tips which you may come across with a Mitrofanoff are tapered, where the tip is smaller in size to the shaft of the catheter; flexible tip which flexes to follow the tract. There are also Tiemann tips which are usually tapered and curved designed to navigate the prostatic urethra in men but can benefit some people with Mitrofanoffs.

All catheters have eyelets to allow the urine to drain, the size and quantity of eyelets vary across manufacturers.

22 | Issue 16 | Spring/Summer 2021

Eyelets

Tip

Eyelets

The funnel of catheter is designed to be able to attach to a drainage bag or catheter valve, this is more important for indwelling catheters. There are some incidences where an intermittent catheter may need to be left in for longer periods of time such as overnight, ensure your catheter is suitable by checking the manufacturer’s instructions.

There are over 25 companies which manufacturer intermittent catheters with most having more than one style in their range there will be a catheter to suit your needs.

In the next Journal we will discuss the differences in intermittent catheters and their benefits.

Written by an ex Urology Nurse Specialist. www.mitrofanoffsupport.org.uk

www.mitrofanoffsupport.org.uk

Issue 16 | Spring/Summer 2021 | 23

Quiz Answers 1.St Andrews, Scotland (you can see the famous links golf course by the beach), 2.Agra, India (it’s the Taj Mahal at the top), 3.Brondby (near Copenhagen), Denmark (tricky one that!), 4.London, England (you can see the London Eye on the right of the River Thames), 5.New York, USA (it’s Central Park in the middle), 6.Machu Picchu, Peru, 7.Timbuktu, Mali (it really is in the middle of nowhere!), 8.Venice, Italy, 9.Sydney, Australia, 10.Paris, France (you can see the Eiffel Tower on the left)

CitiesQuiz From Above Quiz - name the town/city and country:

How You Can Support Us Dates For Your Diary

Mitrofanoff Online Networking Session MONS5 – 24th May, 6 - 7.30pm MONS6 – 10 July MONS7 – 4 December – with sponsors *Dates subject to change, please look out for ads on social media

Patient Education Day 18 September in London

Most of us now shop online and when you use AmazonSmile Amazon will donate 0.5% of the net purchase price (excluding VAT, returns and shipping fees) from eligible purchases to Mitrofanoff Support.

Follow Us Online Don’t forget you and keep up-to-date with all our charity news on our social media pages.

/mitrofanoffsupport Our closed group

@groups/243961849105667/

Just sign up at

@MitrofanoffSpt

www.smile.amazon.co.uk

Select ‘mitrofanoff’ in the charity search box and shop away (you must use www.smile.amazon.co.uk each time you shop at amazon).

@mitrofanoff_support/

It doesn’t cost you a penny but will help raise some funds for the charity.

Thank you for your continued support.

@mitrofanoff-support-2012/

Look out for our social media posts, or email info@mitrofanoffsuppport.org.uk to be put on the Invite list!

www.mitrofanoffsupport.org.uk Registered Charity Number for England and Wales 1145382

@mitrofanoffsupport