It’s not the end, it’s the beginning

Hannah contacted IA in November 2016 as she was planning to run the Stafford Half Marathon in March 2017, in aid of IA.

After Hannah’s mum had received tremendous support from IA both in the run-up to and since surgery, Hannah wanted to give something back. Armed with an IA t-shirt, Hannah has been in training ever since. In her own words, even as a keen runner, she has not run this distance before and it is a massive accomplishment for her.

In between training, we put some questions to Hannah and her mum to find out more…

From a family perspective, how was mum suffering?

Growing up, my mum’s health had always been on and off due to her ulcerative colitis, but her situation gradually worsened to a point where she’d often miss out on family days due to being generally unwell. This became hard as we’re such a close family and enjoy doing things together. Having mum missing was upsetting at times, especially as, as a teenager, I didn’t see an end to mum’s illness. Fortunately, in many respects, throughout my mum’s worse stage (just before her operation), I was working away from home and was not there to witness this. On the other hand, I struggled to understand why her condition was worsening without seeing for my own eyes the situation she was in.

Returning at weekends I’d look forward to going to football together (we’re all Stoke City season ticket holders) and just generally enjoying her company and cooking (she’s famous for her incredible lemon meringue pie!!). This became non-existent and Mum just didn’t have any enthusiasm to leave the house given the pain she was in.

How did IA help mum?

Mum’s operation was very frightening for us all, but especially mum as there was no guarantee that the procedure would be a success. I saw that mum had found a network online and through the journal she was able to read the stories of others and understand that she wasn’t the only one going through what she was and people were willing to listen – people who had been through the same. She’s been so overwhelmed with the support she’s received from the charity that she’s even promised to volunteer when she retires – hopefully in the near future!!

Why are you doing the run?

I’ve chosen to run for IA because of the obvious close connection I now have through my mum. Also to raise awareness to young people of similar age to myself that having a bag is not something to be afraid of and actually in the case of my mum, it has benefited not only her health but her whole lifestyle. She’s lost weight, she’s wearing clothes she never thought she would and most importantly she’s happier than ever. This is the key message that I want to get across, particularly in relation to body image, which is an increasingly important issue for many young people.

How has IA has helped the family?

IA has particularly been of importance to my dad, who was able to find a great deal of support online to grow his confidence in the procedure, before it took place, and also afterwards in terms of mum’s rehabilitation. He also read how others have coped with the change of lifestyle in terms of knowing how he could best support mum going forward. Partly as a result of this network, dad has been unbelievably strong throughout, despite being on his own, with myself and my brother being away from home.

We asked Hannah’s mum to sum up her experience…

I was first diagnosed with UC in 1994 shortly after Hannah was born, having been ill for several months. After several weeks in hospital and on medication for the condition I went home to begin my new life with my family, and learnt how to deal with living with a bowel condition. I was 29 with two children under three. At the time, I thought why me but I know there were and are lots of people worse off than I was. Now there is a lot more about bowel disease in the media and on social networks and is not so much a taboo subject but for me then it was embarrassing. My husband was great and has also had to live with the ups and downs, highs and lows of the condition without even being a sufferer.

I was lucky in the fact that I did seem able to manage and didn’t have many flare ups until two years ago, when I became ill again. I needed more treatment and because I had had UC for 20 years, further investigation was required via the dreaded colonoscope. I was told I had so many polyps (in the colon) that they could not be removed and that I should consider an ileostomy.

Initially I was shocked and upset but once I’d come to terms with the idea I started researching and found IA’s website. I was amazed with so many people, stories and forums for me to read and learn about, it felt like I had met a new part of my family without having to participate! The information I gained was invaluable and it helped me make my decision, along with my husband who also went on the site. My decision was to have a panproctocolectomy and there was no going back for me. I was offered a J-pouch but after researching and reading the forums, I decided it wasn’t for me.

After the operation, everything was of course different with so much to adjust to but in the early days I found IA’s forum was my lifesaver. Everything I needed to know about leaks, bags, life in general and coping – all from normal people like me. The hospital staff and in particular the stoma care nurses were great in picking me up and getting me on my way with information and help too but I also quickly realised that there was life out there after. Realistically it has taken me 18 months to get back to the old me before UC and a change of my initial bag but when I have a problem I know that I can find the answer on the website either from the information available or on the forum.

I know the website has been great for my husband too to help him understand and learn. I have been lucky and have great support at home as it’s not just me that this has affected. I am really proud that Hannah has chosen to run for IA as it’s our way as a family to say thank you and hopefully our story will help someone else, because having an ileostomy is not the end, it’s the beginning.