Amy’s Young Diagnosis Story: Age 7
Being at the age of 27, the amount of support I can now access has changed considerably since I got my permanent ileostomy in 2011, at the age of 19.
Support in all different forms is vital to ensure we get “clued up” on all things ostomy, as well as having those to turn to when things get inevitably overbearing, whether that be early days post surgery or even years down the line.
Being diagnosed with Crohn’s Disease at such a young age
Having been ill on and off since I was very young and having symptoms from birth, I was finally given a diagnosis of Crohn’s Disease at age 7. I had suffered with things such as malnutrition from what people thought was me being a extremely picky eater and not absorbing my food properly, to very runny nappies as a baby, to having lots of stomach aches and always being sat in my fleece in Summer because I was always cold. I was also extremely skinny, as you can see in the photos below, and got to a point where I clutched my stomach most of the time from being in so much pain. I was the third youngest in the UK at the time to be diagnosed with Inflammatory Bowel Disease (IBD) so it was still quite unheard of in young people. I had a general pediatrician who I saw frequently at hospital, backed up by a second opinion at Leeds St James’ Hospital annually. I felt very much like a guinea pig as a child with IBD and to be quite honest, nobody really seemed to know what they were doing due to the lack of knowledge there was surrounding it in children. A lot of my treatment was educated guesswork and a lot of the time I felt pushed from pillar to post without getting any actual answers of relief.
Having the dreaded “scope” tests as a child
I would only ever have a colonoscopy or endoscopy under general anesthetic (fully unconscious) as a child, as I would generally go into a hysterical, crying state at even the mention of the procedure. I was stubborn as a child (and still am!) and I’m sure it was very difficult for my parents to watch me being so poorly, being forced through so many medical tests and still not getting any relief. I had one very bad experience from having to have an enema because I wasn’t drinking the bowel prep (it made me gag and I was petrified of being sick!) The nurses and my Dad had to pretty much hold me down to the bed for an enema to be administered whilst I was screaming in agony and that cemented it into my head even further that nobody would be going near my bum whilst I was conscious and knew about it! I had many failed treatments as a child including endless years of steroids and a range of different tablets such as Mesalazine, then Infliximab infusions aged 17 when I had moved into adult clinic. However, one year into this, it became apparent that nothing had worked for me. My disease had got extremely serious. I remember my consultant saying my intestine looked the worst he had ever seen and as if “it had been shot to pieces” and unfortunately nothing was improving my Crohn’s so surgery was now my only option.
Receiving the news
Some of the weeks and months in the run up to my surgery are a bit of a blur if I’m honest, all just blending into one long spell of agony that felt like it was never going to end, counting down the days to my operation. I was originally meant to have a resection, but then the day my Dad and I saw one of my surgeons this soon changed. We went into the appointment, and straight away the surgeon scribbled my colon on the back of my medical records folder and said “this is what we are going to do”. This was then followed by my surgeon scribbling out everything he had just drawn! My Dad immediately showed some resistance by commenting on it being much different to what we were already told, and to be honest, I was in some shock but at the same time I had seen it coming.
Meeting my stoma nurse & gathering information
My surgeon stressed to me right from the start that mentally, as well as physically, this surgery was going to be life-changing and a big deal. He mentioned my age and explained that it was vital I had a few months to get my head around it, as well as having supplements etc to make me strong enough to get through surgery. A stoma nurse came down to clinic to see me and gave me lots of information booklets, a stoma kit with a pretend stoma and stoma bags to “have a go” with myself and reassured me that surgery would all be at my own pace and to ask questions because there was no such thing as a stupid question! I felt a bit numb with the information overload, but at the same time was happy because they had finally provided me with a potential light at the end of the tunnel, so to speak. There was a huge part of me that just wanted to have it done right then and there!
Support from those of my age
I met a lovely nurse in hospital who was younger than me and had a bag, and she helped me so much in the run up to my surgery, providing reassurance and answering questions when needed. I remember seeing her at the hospital café after my gastroenterology appointments if she happened to have a break on her shift that aligned with me being here. Having that support from someone of a similar age really helped me to see that this was going to give me my life back, not take it away (although there honestly wasn’t much more it could have taken from me). Looking at her, I wouldn’t have known she had a stoma bag, and that really reassured me that I could be like that too and hopefully one day be able to hold down a full time job.
I had a good support network around me in the sense of my family, who gave me so much love and took me back and forth to hospital appointments. It was a different kind of support though to people who had been in your position and were through the other side post surgery. Social media wasn’t so much of a big deal back pre-surgery, but I did join a few groups on Facebook and was able to ask questions. The support I received from people was so lovely and heartwarming, although you did get the odd one who would post things and it would scare the life out of you…there’s sugar coating it versus being brutally honest & a more sensitive, realistic approach would have gone down a lot better with me, I have to say! This is how I try to be now when giving advice or support and reassure others that they don’t have to face it alone.
After my surgery & how I find support today
I received support via the ways I have mentioned already after surgery, as well as getting in touch with some amazing ostomy companies and advocates. Today, I have a strong network of people I can now happily call my friends, who I can go to for advice and for anything to be honest that is on my mind or just for a giggle! I have chat groups that I have created amongst people with IBD/ostomies, my blog, and use my Instagram daily to connect with and help others. I also have an incredibly supportive, patient and loving other half who actively gets involved in my ostomy journey everyday (he’s even worn a bag himself for a day!) This year alone I have had so many amazing opportunities that I wouldn’t have had without my ostomy, and I’m currently collaborating with a few ostomy related brands, companies and charities. If my journey even inspires or helps one more person, then I am happy for that.
You are never alone in your ostomy journey, please never hesitate to reach out.