Crohn’s and Colitis UK volunteer from Rutland on living with Crohn’s Disease and how charity can help

A retired teacher who was forced to quit the classroom with a chronic illness helped walkers and cyclists at the weekend to thank the charity that helped her cope with a new life.

Helen Swift joined fellow Crohn’s and Colitis UK volunteers at Rutland Water on Sunday to help run the charity’s Bluebell Walk and Cycle Ride.

It is an event aimed at raising awareness of the condition, as well as funds, and to help bring sufferers together.

“I’ve been to so many events where people say ‘I’d never talked to anyone about it before or met anyone with it’,” said Helen.

The charity provides support, information and advice for those living with ulcerative colitis - a long-term condition where the colon and large intestine become inflamed - and Crohn’s Disease which causes inflammation of the bowel.

Helen, from Uppingham, believes she had lived with Crohn’s for up to five years before it was diagnosed in 2015. She took up membership with Crohn’s and Colitis UK soon after.

“They have been absolutely brilliant,” she said.

“If they weren’t there and I was just sat at home I don’t know how I would have coped at all.”

Weekly coffee mornings and online meetings, run through the charity’s Leicestershire and Rutland network, have been a practical help as well as a comfort.

”They are really valuable and supportive, knowing there are other people out there and you are not alone,” Helen said.

“By talking to other people you also learn so many different things you can try.”

They can also be an invaluable outlet to talk about a very sensitive and personal issue.

“No-one wants to hear you talking about poo,” she added.

“It takes time for people to know that it’s a safe place to talk, and it also gives you advice on how to talk about it to your family and your boss, for example.

As well as digestive issues, Helen, 65, has had to deal with a range of other symptoms, including extreme fatigue, ‘brain fog’ and joint ache.

It also means day-to-day life has to be carefully mapped out.

“You have to plan where you’re going and what you’re doing every day, particularly to check if there loos to hand,” explained Helen, who is leading a project to improve facilities at accessible toilets.

“And when we’re eating out you can find there’s nothing on the menu I can have so we have to go.”

There is no cure for Crohn’s but symptoms can be managed with suitable treatments.

After being tried on different medications, Helen is now on immunosuppressants which she can self-administer at home, and has twice-yearly check-ups at Peterborough City Hospital.

“I’m still at the point where I hope the medications will work - I’ve not had surgery, but I feel it’s looming, she said.

“It’s very up and down. You have weeks when you’re fine and can eat what you like and then you have weeks when you can’t.”

Helen was a teacher for 15 years at RAF-affiliated schools at Cottesmore and Wittering and continued for a year after her diagnosis before growing fatigue forced her to apply for ill-health early retirement.

As well as her role with the charity, she is now also a volunteer driver for the Uppingham Hopper community bus, and division commissioner for Rutland Girlguiding.

While doctors continue to help Helen live with Crohn’s, she feels the charity helps with the emotional impact it leaves.

“At Peterborough it is quite a small team and we haven’t got any well-being support, so in many ways we have filled that gap.

“Like any chronic illness, when you’re diagnosed it’s like a bereavement because you know your life is going to be changed forever.”