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Glen Neilson - My IBD Story

By Glen Neilson | January 15, 2020

Name: Glen Neilson

Year of Birth 1972

Lives: County Durham, UK

Type of IBD: Ulcerative colitis

Diagnosis Date: 2001

Symptoms at Diagnosis: Severe pain, frequent and urgent toilet trips.

Details of Surgery: Total proctocolectomy with ileostomy.

In 1998, whilst serving as an intelligence operator in the Armed Forces onboard UK submarines, I was diagnosed with cancer in three places in and around my neck area and was swiftly discharged back home to the north east of England and to my girlfriend Lyn and son, MCauley aged three, where I was to finish my treatment and receive two more operations. One of these was the total removal of my whole thyroid, which to this day the hormone replacement can still cause a little havoc in my life. Amazing to actually think that I had never even heard of the word thyroid before, to suddenly realising just how important this small gland in your neck is.

This obviously came as a massive shock, as merely just hearing the very word, can send a shiver down anyone’s spine. But I was a 26-year-old as fit as a fiddle young man, 10 years into a career that I absolutely loved to the core, travelling the world, doing things I had only seen in spy movies and witnessing things that still to this day leave me speechless, to the point that if they said we cannot afford to pay you, I would have happily worked for free.  So losing my career was for me, at the time more painful than the pain of going through the cancer treatment.  As for the future, we were all unsure as to what it might hold for our family, especially if the worst was to happen.

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"Nothing in life is as important as good health." 

Glen Neilson

What followed was a vast array of treatments, including radiation therapy. I actually quite enjoyed the solitude, peace and quiet and kept myself busy, setting up an online commercial import business.

One bit that I really enjoyed were the visits from my girlfriend Lyn and I’m proud to say who is now my wife, as she was allowed 20 minutes maximum stood behind the lead shielding outside my room and, bless her cotton socks, would always bring me treats like pizza, wrapped in loads of foil so it was lovely and warm and other usually sweet gifts. It was like having Santa visit you every night for a catch up of how the day has gone and how our little three-year-old son was doing. 

2001 – A very testing year

At the end of the year 2000 I started to become quite ill with toilet issues and it’s not really a subject that comes up often. “Hi, how is your day?” “Well I’ve been to the toilet 40 odd times” just doesn’t cut the conversation does it? More of a conversation killer to be fair, but something that should be discussed as soon as anyone sees any change, blood or just something that may be a worry or not sure about.

Swiftly moving into THE year 2001 and my older brother Wayne sadly passed away on January 19th. This absolutely broke my heart as it would anyone and at the same time I had just been diagnosed with IBD, which is inflammatory bowel disease in the form of ulcerative colitis. 

"For the next eight months I think I had around four weeks of so called normality where excruciating pain and going to the toilet sometimes 48 times in one day were not happening."

Glen Neilson

A terrible, horrendous disease that when it flared up I was completely disabled from performing and living a normal daily life and for the next eight months I think I had around four weeks of so called normality where excruciating pain and going to the toilet sometimes 48 times in one day were not happening. 

Not long after Wayne’s funeral we had the amazing news that my girlfriend Lyn was pregnant with our second child. The battle with ulcerative colitis commenced, even trying to ignore it and enjoy a cottage holiday to the Lake District, but sadly Lyn had to sit outside every toilet in the Lakes waiting for me, and by the end of the week I was just about done in totally and ready to collapse, but trying our best to let my son have a nice holiday at the same time.

As soon as we returned I was rushed into hospital and admitted for three months, of which I cannot remember much regarding my stay apart from certain snippets that stick out in my memory. I do remember being so weak I actually thought ‘this is it I’m going to die tonight’ and lying on the bed going through my life trying my hardest to think of what had I done that was so bad to deserve this pain that I was in and hallucinating terribly with some of the most bizarre things imaginable. 

What I do remember was the other heart breaking thing was Lyn having to tell me there are complications with our little baby and that she is having to have a still birth. 

Broken? Again yes, completely, but also feeling worse for the fact that I cannot be there for Lyn in her absolute time of need when she has stood beside me through everything that we had already been through. Believe it or not Lyn was admitted on to the next ward and I was actually allowed with a nurse to visit Lyn while she gave birth to our little baby. I don’t remember too much, which selfishly is probably a good thing and I was even too ill to make our little one’s service at the crematorium. I actually shut this part out of my life for a few years as a way of self-preservation, which I have used in the past while in the military. Not sure if that’s good thing or bad thing but it works for me. 

Low and behold I awake in intensive care with a stoma a few weeks later, after having an emergency total proctocolectomy and ileostomy operation, which basically means not just my colon but my bum removed also as it was so badly diseased. I was so ill I was told I may not be strong enough to recover from. 

Obviously I didn’t take one ounce of notice and decided to just get better. 

There I was, 29 years of age and now looking down at what I believe to be my insides hanging out of my stomach, ejecting poo into a massive see through plastic bag. To say I was shocked would be an understatement, but one good thing which was pretty immediate, I didn’t feel the pain from ulcerative colitis, yipeeee its gone and I could shout from the roof tops, but a stoma, what the **** is a stoma. 

I remember looking at a massive open wound which seemed to be eating into my skin, in my stomach where I could even see the stomach wall and which was being packed and treated by a nurse daily, which turned out was due to contracting MRSA while having the operation. 

When the terrible 9/11 twin towers attack came on the TV and I remember feeling so hurt for the families of those involved and I looked at my predicament and thought I am so, so lucky to be here. Whatever pain I was in, it’s nothing compared to what some people are going through. Once again my rock and soul mate came forward and helped me through the toughest of times. 

A few months after we jetted to Las Vegas and got married in “The Famous Little White Chapel” on Vegas strip and nope, before you ask, I wasn’t allowed Elvis to sing us a song, so suppose we know who wears the trousers from the day dot! We then took a trip to the Grand Canyon for our honeymoon, where our little six-seater plane managed to get into trouble with a large tornado/twister while we were returning to Las Vegas and ended with us being very lucky to be able to get back in one piece. Obviously I loved every minute and filmed it on my massive (it is 2002) hand-held camcorder, not to my wife’s amusement. 

So now it’s Mr & Mrs (slightly shaken) Neilson. 

A couple of years later I was diagnosed with chronic osteoarthritis in my upper spine, knees, hip and hands and apparently this was caused from the steroid prednisone that I had taken to fight IBD. 

My kidney actually collapsed on a flight from Spain around the year 2008 and my other was near collapse and an ambulance met me off the aeroplane at Newcastle airport, although once again not something I remember. It was mentioned to me regarding hydration in hospital, especially prolonged hydration since I had my stoma in 2001, and this was not something I had ever even heard about but after investigating this further myself I have learnt it’s absolute paramount to my health as someone with a stoma and is now something I very closely monitor, especially if hiking or doing extreme exercise.

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Fast forward to 2017

Fast forward through a crazy but exciting life of living with a stoma and building and selling small businesses from scratch and something still wasn’t right and was mentally affecting me. Whenever my life seemed perfect, working hard, making a few shillings, getting by, no dramas then all of a sudden I would literally feel this dark cloud creeping up. It was such a strange sensation I could feel it enveloping me and the only way to break it was to go to the extreme, sometimes even going as far as suddenly deciding to sell our business and start again from fresh on another crazy idea, ranging from an events company, confectionery company, catering business to even luxury mobile toilet hire (very apt I suppose), to going off testing myself in extreme weather up a mountain for days on end. 

Keeping my mind occupied seemed to keep the dark cloud at bay so long as I threw myself into a new idea to make it work for a few years then I seemed happy and content and it was only when it all seemed to be flowing nicely that it returned to haunt me. 

I sometimes felt I was practically on a death wish doing anything that made me feel totally alive, albeit in a dangerous situation. Oddly I felt less alone on a snowy mountain top than at a party in a room full of people and looking back, every time this happened, I kept having recurring nightmares from when I was in the Submarine Service and it was not something I had ever spoken about, I had just filed it away just like before with other things that bothered me. 

Eventually I sought help after speaking to my wife for the first time and explaining in detail what happened during and after the incident from years before and then my doctor and a team of specialists confirmed I had been suffering from PTSD. I was sent on an intensive course and many counselling and therapy sessions. I also undertook EMDR (Eye Movement Desensitisation Reprogramming) treatment which at first I was the world’s biggest sceptic as to how this would work, but it completely changed my thinking and my nightmares decreased to a point of practically disappearing completely. Although I still like to climb mountains, I tend to see the danger a little differently and don’t want to put myself at risk to the point of no return as I have a massive amount to live for with my beautiful family by my side. 

Mental toughness is a strange thing. Sometimes when you wish for it, it never happens and we feel broken, but when you least expect it, we feel the positive draw from within, deep down and we know we are capable of anything. I have a bag for life on my side, and my bag will always be half full, not literally haha. 

I feel completely limitless in my ability and only by trying and not succeeding will I slightly listen to maybe I cannot do it, but I can always try again. I may hike mountains, travel the world, take morphine, pain killers and enjoy a few whiskies on the weekend but hey ho, judge no-one, be kind and most of all keep bloody smiling.

Glen Neilson

Hi, I’m Glen and I have had a total proctocolectomy with ileostomy following a diagnosis of ulcerative colitis in 2001. You can follow my adventures on Twitter @ileostomyontour and on Instagram ileostomy_on_tour.

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