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Jasmine Stacey - My Story With My Ostomy

So, I’d like to say I'm an average girl of 25. Been in love, lost and lived my life to the fullest, but I suppose I’ve had a few more bumps than average. I’d like to think I’ve overcome those bumps, swaddling myself in the remnants of wonder woman’s clothes. Well, that’s what I tell everyone...

So where to begin. I’d like to start by saying my story is by no means worse or better than any other person suffering with a disease or condition which has caused them to have a stoma. I personally think we are all strong. We have all story to tell but I hope by sharing this you know you’re not alone in your thoughts and worries. Some of you may have a similar story and we can share them to make the whole thing less of a taboo.

was diagnosed in 2000 at the age of 10 with Crohn’s disease. I was rushed into hospital after 2 years of being told I had irritable bowel syndrome (IBS). Throughout those two years I had tried so many different diets in hope of solving the blood pouring out of me on a daily basis. “Stop eating fats. It’ll stop the cramps”. Being told this over and over with different replacements of the word fats to wheat, lactose, sugar. The list went on and shuffling my diet at such a young age was difficult to understand, but deep down I knew something was really wrong. My mum thought I was being lazy as I needed to sleep a lot and I found physical activity difficult. I used to hide the cramps and pain as best as I could but there is only so much you can do when you’re on the floor in the middle of Tesco's screaming.

I was rushed into hospital after lying on the sofa for a few days and the final straw was being unable to get up to go to the toilet in time. I collapsed in the lounge and couldn’t move. I vaguely remember being in A&E. I recall the panic on my mum’s face as the doctors fussed around me, putting in numerous cannulas, attaching oxygen masks, heart monitors. I just remember a haze but I started to come around after 4 blood transfusions. I was transferred to a specialist children’s unit in Southampton General Hospital where I spent a month. I had all of the tests which now seem a simple part of a regular trip to the hospital but back then it was daunting, scary. My level of understanding wasn’t great. Yes, I felt like the oldest one in there at the age of 12 and thought I could look after the whole ward. It was then it was confirmed it was Crohn’s disease, which seemed to have remained in the large intestine, rectum and stomach. I was given medication to help keep me in remission.

I thought I was cured but three weeks later I was back in hospital for another week. Then another two weeks and this seemed to go on and on throughout high school. I found keeping a group of friends very difficult at this time which was hard. I had a large group of friends - popular girls - but none were close nor understood. I was accused of truanting and mum received a few phone calls from social services with regard to my attendance despite my mum’s desperate attempt to keep some parts of my life normal by informing the school constantly to get work for me to do to catch up in hospital. I was finally on a drug which I felt was working for me in conjunction with steroids. This blew my face up & I gained the name “hamster”. During this time (I was 14/15), I got a boyfriend. He was 4 years older than me and to be honest he was a rock. He was so supportive of all of my hospital visits which by this time were 4 times or more a year.

I had so many up’s and down’s but one of my biggest achievements was actually getting all of my GCSE’s and A-Levels! If you have the condition, you will know what I mean. I tried to act like a normal teenager in between my bouts of ‘rehab’ I liked to call it. I think some people actually thought I was a drug addict by this point, I rolled with that. Eventually I went to university to study Nursing. This was extremely scary, I was starting a new chapter leaving my home, friends, family and my boyfriend to go and live in London.

I ended up breaking up with my boyfriend. I embraced the freedom at university, quite frankly went a little mental and dealt with all of the consequences at later dates. Running out of lectures to the toilet, missing ones when I couldn’t get out of bed, hiding in the toilets so no one knew the smell was me. I started to go downhill again, the current medication which I felt was a wonder drug was ceasing to work. That’s when I started to experience mental health problems. I had full understanding of my condition, understood how it made me feel, understood what my options were and all the while I wanted to remain as normal as possible. I craved so badly to be like my friends, carefree, able to do as they pleased. I missed so many parties, spent so many nights crippled in pain and missed a lot of university. Luckily I made some amazing friends, as I didn’t have my mum nearby, who were so supportive although some found it tiresome having to be rejected for the want of sleep. I made it to half way through second year when I finally had to make the decision to have a year out and have surgery.

I was confronted with the dilemma of having surgery or dying from the complications of my condition. Sadly, as the surgery ended in a permanent stoma I was almost tempted for the latter. I felt the darkness creep in. Everyone reacts differently to the idea of stomas; I knew what it was but not to the extent I needed to make an informed decision. I experienced a range of different emotions but vividly I recall the feelings of anger, frustration and an overwhelming sense of ‘Why me?”, but also hope. Hope that the surgery may finally put me into remission and maybe, just maybe I would experience what it was like to feel “normal”. The surgery was long, 11 hours to be precise. I had a few complications during the operation and ended up being cut open when initially I was to have these “cute” little scars. When I woke up, I cannot begin to describe the feeling, but I liken it to being run over by a car. My stomach looked a mess and no one prepares you for a swollen stoma with a clear bag and blood all in it. I remember saying to myself “that’s not my body” and passed out from the drugs thinking, I’ll deal with that later.

My journey to recovery felt like a long time. I pushed boundaries, trying to regain normality as quickly as possible but if I have some advice for anyone, just let your body heal! The hardest struggle for me was the change in body image. Body image is our own mental image of our physical being, but is influenced so much by society placing such an enormous significance on being ‘attractive’. It really hit home that I had changed and I really couldn’t cope with it. I wasn’t feeling the benefits of remission as I was so sore from the surgery and the longer I spent recovering and pondering everything it became apparent that I needed to get some help. I was already on anti-depressants; I have been since the age of 16. I think a lot of us with IBD know the battles, so it’s been an ongoing thing.

I eventually got help, a lot of it. Psychiatry appointments, psychology appointments, CBT, you name it. Ultimately I came through the other side. I started to pick up, feeling better about myself and that’s when I wanted to feel a little special. I wanted some underwear which made me feel feminine, as a big worry for me was dating and accepting the stoma. I was single at the time (for information on sex and relationships - click here) and this added an extra strain on my already lacking confidence. I was then on a mission to hunt for the perfect lingerie for me. Not finding something suited to my needs, I set about a mission to design my own. I never knew it would blossom into the brand I own today. My brand all started as a hobby, something to take my mind of recovering. I mentioned the idea to a few people who I had connected with over social media and they all agreed there was a need. I continued to pursue my hobby in all of my spare time. When I went back to university, graduated (YES I DID!), started working and I was still ticking along working on my business and eventually launched it in 2015. It has been a huge success but still very small!

I'd like to say I'm someone who has embraced being an Ostomate. I feel so grateful to have my life back and appear normal from the outside (with clothes on). I still battle my demons and quite frankly still have a lot of issues with self-confidence. I try to share wisdom in making other women feel confident in themselves but sadly, I am not truly at that point myself. I have participated in charity events, calendar photo shoots - yes you heard that correct and always try to challenge my thoughts and perceptions. I have more good days than bad but my mental health is severely affected not by my stoma but more the way I look! What I’m trying to say is that despite having a stoma, it does not change who you are. You are still you, albeit you’ve been through a lot and come out the other end. You have become more resilient and damn, a hell of a lot stronger but at the end of the day you are the wonderful incredible person you’ve always been!

I have always pushed boundaries when it came to being told – "It's advisable not to do this with a stoma" - I’d try it anyway to see what would happen. I went to India for a month backpacking (that’s me top right on Christmas Day!), I've eaten all “prohibited foods", pushed my sexuality and quite frankly it was all to prove a point to myself that, by god, I will not let my ostomy stop me. I will take over the world eventually ;)