Glen Neilson raises awareness for IBD

Glen Neilson, who was diagnosed with the condition 18 years ago, wants to share his inspirational journey in order to educate those who are unfamiliar with the illness, and aims to support people who also live with the condition.

He said: “A lot of sufferers refuse to either acknowledge there is a problem or seek professional advice due to it often being seen as a taboo subject.

“It affects people mentally and physically after such a big lifesaving operation and I’m on a mission to prove living your best life is still possible.

“I want to make others aware that not every illness is visible and inform them about the impact of living with a stoma.”

Glen, who is 47-years-old, has lived in Bishop Auckland for all his life when not serving in the Armed Forces.

He left King James I School, in Bishop Auckland, at 16-years-old and joined the Royal Navy.

Once he completed his basic training, Glen volunteered for the submarine service, and after serving ten years in the navy as an analyst, his career was cut short when he was diagnosed with thyroid cancer in 1998.

During the following year he would undergo three operations and have radiation treatment, after which he was given the all clear.

Then at the beginning of 2001 Glen became seriously ill.

He said: “My health was deteriorating very quickly, but not wanting to seek advice I struggled living day to day with the symptoms, at one point I even kept a diary and was going to the toilet over 40 times a day.”

Unbeknown to him he had IBD, and after suffering in silence, he was rushed to hospital in the summer of 2001, where doctors diagnosed him with chronic ulcerative colitis.

Glen and his wife Lyn snorkelling in the Maldives

He was given steroids to try to control the disease and, after eight weeks in Bishop Auckland Hospital, Glen woke up in an intensive treatment unit with a large plastic see through bag on his side after undergoing an ileostomy operation.

He said of the moment: “To say I was scared about my future would be an understatement.

“Going from a healthy 28-year-old to this was something I struggled with and for the first few months I couldn’t come to terms with it.

“I had no-one to speak to about it, but after a while and with massive support from my lovely wife Lyn I eventually started to regain control of my life, and within a year of my operation I was living life to the full albeit with an ileostomy.”

He described the outcome as “a very steep learning curve” and explained that no help was given for the products he could wear.

Glen was initially given a stoma that kept falling off during daily activities such as shopping in Asda and playing golf which had an impact on his confidence.

He searched for different samples and eventually found a strong ConvaTec two-piece bag, which he said helped him to regain his confidence and improved his attitude towards life.

“One in 500 people in the UK have a stoma but a lot of people are still unsure as to what a stoma is.

“Basically, my waste goes into a ConvaTec bag which I empty as and when required, but this doesn’t stop me from doing anything whatsoever.”

Glen raised £1,000 for Crohn’s & Colitis UK, a national charity leading the battle against Crohn’s disease and ulcerative colitis, and he is set to tackle the Kilimanjaro mountains in December.

Glen Neilson in Russia with his friend Mark

He said: “I have achieved this from the great generosity of everyone who donated.

“By attempting to climb Kilimanjaro this December I am hoping to raise funds for Crohn’s & Colitis UK, an amazing charity which helps people with this debilitating disease, but I don’t want to stop there.

“I aim to raise awareness of IBD as it is an horrendous disease that can be life consuming, and one that’s not really discussed, and to show that having a bag can be the start of a new life and that people are not alone.”

He added: “Living with a bag on my side in today’s society has a few challenges, for instance using public toilets, and I have been accused on many occasions of taking drugs.

“When I use a disabled toilet people often make comments about me not being disabled, but IBD is seen as a hidden disability due to the unseen extra requirements that are associated with having a stoma.

“I don’t let it worry me as I’m living a life that wouldn’t be without my bag for life.”

At present there isn’t a cure for IBD, but medication and sometimes surgery can give long periods of relief from symptoms.

According to Crohn’s and Colitis UK one in 210 people are living with these unpredictable, life-long and potentially life-threatening conditions.

Crohn’s and Colitis helpline: 0300 222 5700

Webpage: https://www.crohnsandcolitis.org.uk/support/helpline