Guest Blog - Gabi

At the age of 16 I was diagnosed with Crohn’s disease, but it was long before that that I

decided on a career in fashion. Aged 10 I sent 40 hand drawn designs to my favourite high street store and at 15 asked British Vogue for work experience. Working in the fashion industry has always been my dream and being diagnosed with a chronic disease was not going to change that.

I am now 21, and am still as determined as always to make this dream a reality. For the past five and half years I have battled not only with school, university and work experience but also with my health. I am very open about my condition but hate to be seen as an ‘ill person’. 

I have always soldiered on, with no complaints, rather than make a fuss even when the exhaustion and pain is unbearable. I have learnt the hard way that this is not always the best attitude to have, and sometimes your body really does need a rest. However, I think this determination to not let Crohn’s stand in my way has benefited my life in the fashion industry. Despite stays in hospital, being on endless amounts of medication and missing months of school and Uni I have still managed to secure placements at some of the world’s leading fashion magazines. Over the years I have also learnt to listen to my body, when I need to take it easy and sleep that is exactly what I do; I no longer fight against IBD.

In September 2012 I began what has been the worst flare so far and this one has been different. Rather than just having a flare in my large intestine, as before, this time round I have also developed a perianal flare. I went from having internships lined up for months to spending my days in the bath or in bed, trying to soothe the pain. My Drs have tried every medication available but unfortunately last month I found out that I will be needing an ileostomy. Hopefully it will be reversed once my bowel has been rested but the likelihood is my bag (‘Margaret’) will be permanent. This will be a huge life style adjustment, not only will I have to get to grips with owning a stoma bag and never pooing or farting in the same way again but it also comes with huge body image challenges.

I have chosen to make my way in one of the most glamorous and cut throat industries and Crohn’s is not a glamorous disease. Drs help you deal with the practical, medical aspect of owning a stoma, but for a lot of people it is the appearance and how it makes you feel that are the biggest hurdles. I don’t like to think of myself as vain but I know for me, I worry about what clothes I will wear and how I will lie on the beach in a bikini again, and I don’t think I am alone in worrying about this.

Example of an ileostomy

I want to show people that despite having a chronic disease you can still achieve everything that you want to. I want to get rid of the stigma that comes with having an IBD and make it okay to talk about! I also want to concentrate on IBD and the fashion industry.

There are so many options out there for stoma owners and I have only just started my journey with Margaret, but I think a lot more can be done.

That is why I have started my blog www.giftofthegab1.blogspot.co.uk, so that I can share my journey with you all. I tackle IBD with light hearted humour, but I am also frank and honest. I talk about everything that comes with having Crohn’s as well as the life of a fashion intern. I look at clothes and swimwear and how I can make owning a stoma work for me. There are many challenges still to come my way but in true Gabi style I will tackle them head on and always with a smile on my face.

  

Guest Writer - Sadie

Hi, my name is Sadie and I have Crohn’s Disease.

I was delighted that ‘Me and IBD’ asked me to write a guest post on their blog as, after starting my own blog around my story and struggles, I am hooked!

IBD isn’t a very glamorous disease and I think some sufferers are reluctant to share their experience as it can be embarrassing. This, accompanied with the confusion between IBD and IBS, means that not a lot of people are aware of the severity of the disease, or fully understand how it can affect us!

I hope that by sharing my story and experience with the condition I can not only help others through hard times, but educate and raise awareness of the disease.

First of all, I will start off with life before my diagnosis. For me, and for lots of other people with IBD, it takes a long time to get diagnosed. I experienced extreme fatigue, bloating and urgent diarrhoea before I was diagnosed with Pernicious Anaemia and IBS by my GP. It was really tough going through school and college with these horrible symptoms and no medication that seemed to work for me. I was embarrassed to use the toilet anywhere other than my house, but sometimes I had to. My constant fatigue meant my exams were a struggle. But after I while I got used to it and thought that this was something I just had to put up with.

I managed to pass my GCSE’s and A Level and get a place doing Drama and English at Hull University. In my second year there, is when I really started to experience problems. My symptoms just seemed to get worse and worse until one day I rushed to hospital with severe stomach cramps and vomiting. It turned out I had an abscess and severe inflammation in the ileum of my bowel. This was when I was first diagnosed with Crohn’s disease.

Since then I have been battling this disease head on. It was kind of a relief getting a diagnosis; I could now get treatment instead of being told I had to just get on with things. But it was a bit of a shock. I didn't realise how serious it was at first and just shrugged it off thinking I’d be fine and back to normal by September, when I started my third and final year at uni. But it didn’t…

I know I am lucky in some respects because my disease is in no way as bad as what others have experienced. It is classified as moderate- severe but thankfully I have not had to have surgery (yet) or be hospitalized for longer than a week! (I think this is mostly due to my moaning when I am in there, I am so stubborn even though the doctors and nurses are helping me, and I cannot stand to be told what to do. So being told I can't leave really grinds me gears :P)

I have tried several different medications and therapies since I was diagnosed. You can head over to my blog to hear my experience with each medication but remember everyone is different, so what works for me might not work for you or vice-versa :) 

Although I have only been diagnosed for 9 months, my journey so far has been a whirlwind. I think I have finally come to terms with it now. Having a chronic illness is tough and it has affected my life a lot, even without me or other people realising. It has affected university, my job, my social life; my relationships, my self-esteem, and even my fitness and hobbies.

BUT I always try and stay positive no matter what because I know there are people who are going through 100% worse. Now and then I even joke about it :) I don’t want to complain and I don’t want attention, I just want to try and live as normal a life as I can.

I’ve had so much help from my IBD team and am so thankful for the NHS. My friends and family; especially my mum and my boyfriend Sean have been there for me whenever I need help or support. The online community and social networking sites have enabled me to talk to other people in the same situation as me and help me realise I am not suffering alone.

IBD may not be life threatening but it definitely is life altering. I know I am a better person since I was diagnosed. I have learnt to appreciate the little things like being able to go out with friends and even eat! Happiness is a healer and although I have missed a lot of opportunities because of being ill; I know I will succeed not despite of it, but because of the person it has and will make me! 

I also hope I can help and offer advice to people who are going through similar things to me :) So feel free to message or comment on my blog for any advice or support! 

Confessions of a Crohnie

What's all this about then?

The Me and IBD microsite is brought to you by leading charity Crohn's and Colitis UK and has been set up with young people with IBD in mind. We've tried to get as much as information in one place as possible - without bombarding you with too much at once! 

You might have just been diagnosed, or have been living with IBD for a while and just want a bit more information. Maybe things are changing in your life and you want to understand how IBD might affect your next steps? Can you cope with Crohn's disease at University? Can you go travelling with ulcerative colitis? If you're taking your first career move and not sure if you have to tell your boss about your IBD? We've got information on how to deal with these things and more. Go to the Your Questions pages for more...

The microsite forms a part of the main Crohn's and Colitis UK website, but really focuses on what it's like to be a young person with Crohn's or colitis. It really hones in on the things that are important to you.

So check it out, have an explore and if there's anything you think is missing - let us know! It's all about you... what you need and expect out of life.