Volunteering

Ileostomy and Internal Pouch Association, known as IA, is a registered charity supporting people living with an ileostomy or internal pouch, their families, friends and carers.

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Volunteers are at the heart of everything that IA does – we have over 200! Without the dedication, commitment and passion that our volunteers have IA would not be a network of groups offering local support throughout the UK and Ireland.

If you are passionate about giving something back after going through surgery or watching someone close go through surgery, then why not use your experience to help others and join Team IA today!

Whether you have a specialist skill to offer or not, we’d love to hear from you. Being a volunteer is about being you. Being someone who cares, who understands and who wants to help others.

Being a volunteer might be helping out on your local group committee with organising events, helping with refreshments at meetings or being a group secretary. Whatever you feel you can help with, if you have time to spare, no matter how small, we’d love to hear from you.

You can contact your local group and ask about volunteering or contact IA National Office who can put you in touch.

Why not take a look at some of our volunteer profiles below.

Claire

Suzannah

Nic

Paul

Brigitte

Paula

Tracey

Local Groups

I want to speak to someone

Stories

Events

Claire

I have been a volunteer since 2010. I offer my time to give back all the help and support IA has given me. This is from coming out of hospital in 2008 to the present day. I love meeting people and working to help them in their new lives, living with a stoma.

In 2015 I became secretary of North Eastern IA. I am the main point of contact for the member organisation. I write newsletters, deal with any correspondence for people needing help & support and I’m also a telephone contact point. I help organise our local meetings, inviting guest speakers and stoma company representatives. I also organise out attendance at open days when North Eastern IA is contacted to attend

If you have any free time and want to make a difference in peoples lives, become a volunteer. In 2010 I started attending open days for IA and in 2012 I started helping Durham County Carers. Both of these organisations have helped me in my personal life so much. Just to keep me busy in 2016, I set up a local group, which quickly became county wide called Durham OOOPS group helping all ostomates.

Volunteering has made a great difference to my life. I started to volunteer to help people and put something back into the community. What I did not expect was the people I was helping were helping me, to have a more positive attitude with my own life. Since volunteering I have become so more confident in myself. I look forward to attending all the organised events. Here I meet people and can give them help and support, which in turn boosts their confidence. I try and show them the way back to enjoy quality of life, which they thought they had lost.

Suzannah

I have been a volunteer on Young IA’s (YIA) sub-committee for about 7 years. During this time I have helped to organise events, nights out, weekends away and information days to spread awareness and provide support to young people living with an ileostomy or internal pouch. I recently presented a YIA workshop at IA’s information day.

I joined YIA when I was 21 back when I first had my stoma. I found other similar support groups full of older people and unrelatable. Joining YIA helped me to realise that you can live a completely normal life and still go crazy and party at university despite having new plumbing!

It wasn’t long before my confidence had returned and I left university wanting to help other people in similar situations, so I asked if I could help out on the sub-committee. Volunteering is rewarding in so many ways, personally I have made some lifelong friends and taken part in some great events, but it is also nice to have the opportunity to help support other young people and raise awareness of the normality of life with a stoma or internal pouch.

Suzannah is a senior ecologist so spends much of her time (including early morning and late nights) out in the open air.

Nic

I have been a volunteer with IA since November 2016, I had my surgery in the July and by the November I was voted in as secretary of Peterborough and Wisbech IA. I stepped down as secretary earlier this year but have now stepped into the role of Young IA Coordinator after being on the subcommittee for over a year and I am also on the board of directors.

When I had my surgery it was a bit of a shock, i perforated whilst in hospital after a very short diagnosis of colitis, I didn’t know I was going to wake up with a stoma, I didn’t even know that was an option and it took me a while to get my head round this change in my life.

Getting involved with IA helped me deal with what had happened, they helped me recover and they also helped me cope with all that was going round in my head. That was when I decided to make the best out of it and also use what had happened to me to help others so that no one felt as alone as I did. I would recommend volunteering to anyone, my stoma gave me a second chance at life and I am now the healthiest I have ever been and I think it’s important to show anyone facing surgery and life with an ostomy that it can in a lot of ways benefit you and you can live your life again after being restricted so much during your illness.

It’s natural to fear surgery or any big change in your life but hopefully what we show people is that life with a stoma isn’t a bad thing, in fact even if I had the choice I wouldn’t go back to how I was before, just to be ‘normal’.

Paul

I am secretary, vice chairman, IA qualified visitor, distributor, news correspondent and trustee of Lincolnshire IA. I have been secretary for 25 years and do an array of tasks. I organise our meetings, take minutes, post out IA Journals, represent IA at local meeting and am the liaison point with our local hospitals besides many other things!

I volunteer at Lincolnshire IA basically to give back. I had a number of problems after surgery and I spoke to the then secretary of Lincolnshire IA and she helped me no end so I just wanted to repay the kindness and the members I met then were always so kind. I just didn’t realise that the payback would take so long! I enjoy it as much now as I did when I first started. I also volunteer for Midlands IA as a trustee and minute secretary, who publish the Midlands News Bulletin. Every time I visited anyone in hospital the house keepers and nursing staff were always rushed off their feet so I always said that a year or so after I retire, if accepted, I would like to help by volunteering. I have now been a volunteer ward support on the same ward since July 2013. I am a volunteer Supporter Liaison Officer (SLO) at Lincoln City FC and it is my role to look after all supporters from visiting teams.

How I can make a difference depends on which volunteer role I am doing but it all comes down to one thing and that is, that it sends people down another possibly positive path. For some, a small bit of information can change their life. With new members of IA they know that they are not alone and that there is someone on the end of the phone if they require help, information or just a bit of support. As part of my role with Midlands IA helping them gain a grant for say a washing machine, a new bed and bedding or a new set of spectacles that they couldn’t originally afford makes them happy and can help someone at a time of need.

Volunteering is very rewarding in a non-financial way. To put a smile on someone’s face is magic and it gives you a good feeling. In my role on the wards to serve a terminally ill patient with a smile and a cup of tea, to have a joke with an elderly patient who doesn’t get visitors to them this is priceless and as they say a picture tells a thousand words. Just helping housekeepers and the nurses takes that little bit of stress off them gives them that little bit more time to look after their patients. It makes you feel like you are changing someone’s life for the better, it gives you a buzz. If you care about others then become a volunteer.

Brigitte

Hi, I’m Brigitte. I’m Chair, Secretary & Visiting Co-ordinator of Nottinghamshire & Derbyshire IA, and part of the national IA Internal Pouch & Visiting subcommittees.

My role varies day to day. I am the first point of contact in Notts and Derby IA for people living with an ileostomy or internal pouch seeking help. I talk to members, plan committee meetings, and try to make sure the voice of the patient is heard within our area.

If you ask me ‘why do you volunteer?’, my instinctive reply is ‘why not?’ I have always volunteered. It all comes from my passion for helping others. There is something deeply rewarding about meeting people at their time of need and helping them along life’s often bumpy pathway. The smallest gesture or supportive word can unexpectedly make the biggest difference.

In 2011, feeling fine, being told I needed colorectal surgery to prevent cancer appearing within the following years was devastating. Utterly floored, I found IA. The visitor chats changed my perspective. My ‘stupid’ questions were not so stupid. Volunteers spoke from personal experience and understood what I was going through. They helped me find my confidence and self-belief again, assured me life would go on and I would be fine. And they were right! So, after my initial surgery in 2014 I joined my local IA committee, wanting to offer others the kindness and support I had been shown.

It really matters to me that no-one is left feeling as isolated and clueless as I was initially. If I can ease the path of just a handful of others, I will have done my job. That is why I do what I do.

Volunteering brings so much to life… fresh challenges, new friendships, new opportunities and at the end of what you do, a sense of having really achieved something for, and with, others. Well worth giving it a try!

Paula

I volunteer for Merseyside IA. I’m on the committee and have been an active member for 25 years now. We have a couple of meetings a year during spring and at Christmas. We provide a lovely buffet and raffle and recently we offered holistic therapies for our members to enjoy whilst at the meeting and generally a cracking raffle and a talk from surgeons in our local area, a dietician or an inspirational speaker. Over the last year I have also been involved in research days in London which have focussed on Crohn’s disease and ulcerative colitis and I am also a named patient expert at NICE for treatment for Crohn’s with stem cell treatment

I’ve personally spoken to lots of patients from my hospital about pouches and stomas as my stoma nurse and nurse specialist know I’m willing to talk positively about my journey of 37 surgeries, five stomas and a pouch. I’m now part of the Internal Pouch subcommittee for IA and I’m unsure how I’ve only just managed to do this now when my pouch is nearly 23 years young .

I personally volunteer as it’s so rewarding. I give my time to IA as when I was newly diagnosed and having a stoma formed within six weeks of diagnosis it was a shock and hard to adjust to at 21. `I received support from a lovely lady called Sylvia who was so helpful, caring, empathetic and kind and it made me feel I’d be ok and I wasn’t alone

I feel people including myself that volunteer make others going through our situations feel included and able to manage and move forward with their new bit of plumbing – stoma or pouch. It’s so important to share your journey as you never know that a few words on a phone to a new patient could change their mindset as they adjust to their new body and reassure them that their journey is going to be alright. I like to spread the positive changes my stoma brought my life after I’d adjusted to it.

I now have so many friends who have had surgery that I’ve met through being asked to contact them over the last 25 years to talk to them about surgery and their potential surgery. I give support, guidance and an insight as someone that’s been through what they are thinking of having. I hope they get honesty, humour, support and empathy from me and always positivity.

I’d highly recommend volunteering as it really gives something back – sharing is caring and speaking out changes lives. It doesn’t have to be a huge commitment, maybe a few hours here and there to support others that have been through what you have. And you wouldn’t believe how grateful a new patient is when they get to speak someone that lives near them of similar age and situation. It makes them feel so included and able to share.

You’ll never regret volunteering it so rewarding!

Tracey

I am Social Media Secretary for Peterborough & Wisbech IA and have been now for around 4 years. I have Facebook, Twitter and Instagram pages and use these to share interesting and motivational stories and also to raise awareness about what we are doing at a local level. In addition, I am heavily involved in our committee arranging our events locally and I am on the Young IA subcommittee where this year I helped to design and run the workshop we had at the Information Day in Birmingham. Having been voted onto the board of trustees again this year I am also honoured to be a part of the wider national charity, helping to shape the future of IA at an exciting time following our restructure.

Volunteering is a great way to help new ostomates who are in the same boat as I was in the beginning, and to give something back to the people and organisation that helped me so much when I first had my surgery. Raising awareness and helping to banish the stigma that is often associated with having a stoma is very important to me. Letting others know that they are not alone can really help them in coming to terms with their ‘new normal’ and making the most of their lives.

I would recommend to anyone thinking about becoming a volunteer to go for it. I have a whole host of lifelong friends as a result of being a volunteer. It is rewarding in many ways, and the people you meet may have as big an impact on your life as you could have on theirs.