I am Lauren aged 24 and I have Crohns Disease.
I have been poorly for 4 years now, and everyday has been a struggle slowly becoming worse. I have tried every medication available and had got to a point where I had completely lost hope (not to mention fed up of being poked and prodded with injections and cannulas!).
I am a qualified teacher and had to give up my career due to severe pain and ‘Crohn’s moments’. The children were great (considering they were all teenagers!) They would always ask me if I was okay and if they could help in anyway. If they ever asked what was wrong, then I would be honest and tell them I had Crohn’s disease. I will always be honest. I will always be open. I feel that this will somewhere along the line help someone else (especially a younger person) who is embarrassed and petrified of the consequences of their illness being ‘found out’. No one should be embarrassed and I will never hide my disease as it is part of who I am.
So, teaching was over for me and I cried a lot of sleepless nights about it. My career was stolen from me, I was housebound, exhausted and petrified of being away from a toilet. I couldn’t go out with having panic attacks and scouting for toilets. People out and about did not understand my condition and made life difficult. I think that writing stories such as this one and trying to get IBD and other bowel/bladder issues into the media will help ‘normal’ people understand the need for no questions and show us the directions to your loo ! No one talks about IBD because its ’embarrassing’. Yes it is but if we do not face it head on then we will never survive it or live our lives. I had an escape from the embarrassment though….
I knew that an ileostomy would be a possibility for me even though the thought of it frightened me. I had constant nightmares about having the surgery and all it entailed, however, the date for my operation arrived and my thoughts suddenly changed: I thought “Oh my goodness, that date will be the date I start to get better!” From that point onward I couldn’t wait to be ‘bagged up’!!. I knew that I would not feel embarrassed about having a bag and I often tell people I have only just met about my bag if the conversation arises and I walk away feeling like ‘Another one down – another one educated’. I knew that the old Lauren would resurface once I had had the operation.
After my operation I accepted the stoma and bag very quickly. I swore I would never give it a pet name…that lasted all of 10 minutes and he is now christened ‘Squidgy’. My stoma has saved my life and I don’t find him ‘gross’ or repulsive. I do not have the severe pain I had before and even though things aren’t completely perfect for me yet, they are definitely a 100% better than what they were. I could cry at how much my life has changed and how much more I can do! I can’t wait to be at the front of the classroom again!
I often joke and say I am the perfect woman because I don’t poo! I wear all the clothes I want to wear, I go swimming, I ride my horses and don’t not have anxiety attacks like I used to either.
Thanks to “Squidgy” I am so much healthier and happier.
I know that having a bag can make people feel that they are compromising on image. I have heard stories where people have refused to have the operation for this reason. I know that to a lot of people and deep down in all of us, that image is important. We all want to look our best. I do not feel any less attractive. I recently did a photo shoot and loved looking back at all the photos. It was nice to feel confident for the first time in 4 years!
If you are thinking that a stoma would be a possibility for you, and you are scared or worried about ‘image’ then think on…I feel more confident now than I ever have before, I am healthier and happier and to be quite honest its cool having something else to accessorise! I am also getting married next year and I cannot wait to get that dress on!
Don’t be scared – be proud of your journey and your stoma as it’s the start of a whole new life.
Since writing my story I have started the Purple Wings Charity which was born in May 2014 at our first event.
The vision of the charity is to help sufferers of bowel disease regain confidence.
This is a tailor made service and is very much based on a relationship built between the person applying for the grant and all of us here at the charity. It might be that a person really needs some ‘me’ time by relaxing at a spa, going on a shopping trip, attending a photo shoot etc.
Sometimes the service can provide outings for families and couples as we all know how hard it can be on the people around us at a time of illness.
The charity has sent people for meals with loved ones to ensure that ‘us’ time is catered for. We have also sent families for days out. Whatever it is we do for you, it really based on your individual needs and proving that you really can ‘live’ not ‘exist’.
Want to apply for a grant?
Email Lauren at firstname.lastname@example.org for an application form.
Get your confidence back and join the Purple Wings community!