I want to speak to someone

Whether you’ve been told that you need to have an ileostomy or an internal pouch, are already living with one or are a family member or carer of someone who is, the benefit of speaking to someone who has been through surgery shouldn’t be underestimated. The thought of surgery generates a range of emotions such as fear, anger or worry, and speaking with an IA One2One Support Volunteer can help to alleviate those concerns.

IA One2One Support Volunteers are people like you. They have been through surgery and have been living with an ileostomy or internal pouch for at least 18 months. IA’s One2One Support Volunteers go through training on how to listen, communicate and provide guidance to people before or after surgery.

They are not there to tell you what to do; their primary aim is to listen, to help you make sense of your thoughts and concerns. It is not about the One2One Support Volunteer telling their story, but about them listening to you and drawing on their own experiences to help you.

IA One2One Support Volunteers do not offer medical advice, as they are not medically trained, or give advice on stoma products; this is something that you should discuss with your stoma care nurse. However, they can give you an ear to listen or a shoulder to cry on, all from the perspective of someone who’s been in the same situation and understands first-hand.

Anyone can request an IA One2One Support Volunteer to get in touch; you don’t need to be a member of IA to benefit from this service.

An IA One2One Support Volunteer can meet you face-to-face in hospital, at home or at a mutually convenient place; or they can talk by telephone or by email. IA will endeavour to match you by age, gender, surgery type and lifestyle preferences so that you know you will be speaking to someone similar to yourself. There really is no substitute for talking to someone who understands how you feel. Contact IA today to arrange to speak to someone.

To arrange to speak to someone (or on behalf of someone else), please complete the One2One support request form below.

Alternatively you can get in touch via phone or email and we can arrange this for you. Our contact details are available on our Contact Us page. Please do not use our contact form to request one2one support as not all required details are captured.

A small selection of IA Trained Volunteer profiles are below – why not take a look and see what inspired them to want to help.

One2One Support Request Form

KennyOne2One Support Volunteer

JennyOne2One Support Volunteer

DavidOne2One Support Volunteer

One2One Support Request Form

Kenny

One2One Support Volunteer

My name is Kenny and I live just outside Glasgow. I work as a Financial Analyst for a leading AeroSystems manufacturer in Ayrshire. I live with my wife and our son; my daughter fled the nest a couple of years ago and stays with a friend.

My main hobbies are walking, the countryside and music. I love climbing mountains of which there are many in beautiful Scotland and rambling in the countryside taking in the views. To me this is crucial to wellbeing and more and more evidence is coming forward as to the benefits to be gained from getting closer to nature and the wilds. I have a passion for music going back to my early teens and I am a massive Queen fan and collector – I have even met and chatted to Brian May! Pink Floyd and Led Zeppelin are another two favourites.

I started to struggle with ulcerative colitis in the early 1990’s and it ended up many years later in surgery when I had my large bowel removed and eventually having an internal pouch formed around 2016. Looking back I am glad I took this option as my colon was in a bad state and had stopped responding to medication. It basically gave me a new lease of life. I take things one day at a time and never take anything for granted but at present I am delighted with the results and I am now in complete control of my bowel movements.

I have always really enjoyed helping people and when I saw a request to become a trained volunteer in the IA Journal a few years ago I felt I could take on the role for IA and so I attended a course.

The service greatly benefits from those who have undergone surgery as they have first-hand experience of all that is involved in the process and the end result. I consider it to be extremely important to be positive with every one of the people that I speak to and I know this comes across from feedback I have received from some of the people I have met.

I never provide medical information; something we were advised on the training course. We are not qualified to do so and it’s best to leave this in the hands of the experts! What we can do however is to be there for people during their journey prior to surgery, during the process and when they are back home – especially in the first few weeks after surgery.

The one thing I am proud of from my experience is simply being there and making myself available for anybody who has any questions. One particular request led to me meeting a chap due to undergo surgery and we ended up chatting for a while only to find we had much in common including hillwalking and single malt whisky! He came through the procedure well and we are now friends and go hillwalking together! It is so rewarding to see how he went from being very ill to a picture of health now and I am very proud to say that I have played a part in this process.

I would highly recommend to anybody thinking about becoming a trained volunteer to actually doing so; it is highly rewarding.

Jenny

One2One Support Volunteer

My name is Jenny and I have been an IA One2One Support Volunteer for over 10 years. I am married and we are now both retired and our children have fledged the nest. One is married and living the dream working in San Francisco and the other is engaged and, thankfully, lives locally and is a maths teacher. My husband and I love travelling, sailing, skiing, sea-side walking, enjoying the company of friends and volunteering to run sailing races at our local club on the south coast.

Back in 2004, I had a panproctocolectomy and the formation of a permanent ileostomy after 10 years of ulcerative colitis (UC). My surgeon and I decided to go for the full operation at once because I had Coeliac disease in my ileum (gluten intolerance) and complications from this meant the alternative surgical options might have restricted my outdoor pursuits – which entail being far from facilities! I had no idea how ill I had been with my UC or how restricted my life had become until I discovered the freedom of life with my ileostomy. I was 44, with two teenage children and only now did I feel able to be the active mother I should have been.

I became an IA One2One Support Volunteer to offer support and hope to those facing this type of surgery. The anticipation of such a change in body image and function is very daunting and that is why I resisted surgery for so long. I had found IA online after my operation and was invited to join three of the local team for coffee. Meeting them and listening to their tales of life well lived and hectic activities helped me realise that all will be well, with a little support from people who understood. After a few years of getting to know the new me and then undertaking the rigorous trained volunteer training scheme I was able to offer support to others.

After a while, my local stoma team asked me to start visiting patients in hospital, a few days after their operations, to help to lift their spirits and see the way ahead. It seemed to get positive feedback and I am pleased to say that I have probably visited at least 300 local people in hospital over the years. As everything is confidential, if I meet any of them locally we usually just exchange a knowing and supportive smile!

David

One2One Support Volunteer

Hello, I’m David.

I had a stoma due to Crohns Disease when I was 7 years old. I’ve been on the Young IA sub committee for almost 10 years and have been a member of the committee for IA Northern Ireland for 13 years.

I studied Law and Politics at university which led to a career in pharmaceuticals.

My interests are varied and range from classic cars to yoga! When I’m not in ‘warrior’ pose I’m usually walking my collies; Lucy and Lily. I love nothing more than spontaneity and it has led me ‘round the world.

One of my favourite escapades was a nine week interrail tour of Europe. I cannot wait for my next adventure.