Guest Writer Rachel - Part 2

Here's part 2 of Rachel's story (aka The Stoma Bag Lady) 

The next morning a stoma nurse visited me. She was a lovely lady but from the moment she arrived she must have realised that I was petrified and that her job was not going to be in anyway easy. Every kind word that came out of her mouth was like a death sentence, in my mind she was the executioner preparing me for the march to the gallows and placing the hood over my head. I let her draw on me…draw large circles with x’s in them on my flat stomach with a permanent marker. She said she had positioned them so I would be able to wear my favourite jeans without the bag getting in the way, but all I could see where these two big black circles with an X marks the spot marking where my bikini ready body would be defiled by a bag. That day, when she left, I cried more than I have ever cried in my life and will hopefully ever cry again.

Ok, so that was all rather depressing, but that was not the last time I would be caught in the surgeon’s snare and narrowly avoid their table by the skin of my teeth. It happened every time I went into hospital, and it quickly became I running joke that I was ‘the girl that got away’ among the circles of surgeons who visited me. I lived in fear that they would come and cut me open, and there were many close shaves, but this time, 12-years since I was diagnosed with Crohns, I finally decided that I no longer wanted to spend all my life on the toilet; living with crippling pain; passing out in bathrooms; being so thin I might snap in half; and spending more time living in a hospital than my own flat. I also never wanted to have an accident at work, or while walking to the chip shop ever ever again.

I was part forced, part given the choice to have my bowel removed. And, I’m proud to say that for once I let my fear of the surgeon’s knife and my disgust at the idea of a stoma not cloud my judgement. I decided that for the 12 years I had battled with Crohns /UC (they still haven’t decided which one I have – ridiculous I know) I had not really been living at all, more like just dealing and coping with every day as it came. I realised I would rather face the knife in the hope that removing the destroyed part of my colon would stop my illness in its stride, than facing a second more of that blinding pain which often left me gasping for breath, passing out in bathrooms and collapsing into my bed with exhaustion and extreme fatigue.

Now, nine-weeks-after my bowel was torn from my tummy leaving me with my new found fr-enemy Winnie, I can hand on heart say I feel the best I have ever felt for a long time. I wouldn’t go as far as to say that I feel well (what is well to a Crohns patient), but I feel alive. I would describe it as a feeling of being free, lighter in some way, and the pain, which so often crippled me in my stride, has vanished, hopefully forever – well we will see.

I won’t lie it has not all been plain sailing, I have had ups and downs since the operation. There were complications that were horrendous and terrifying. My epidural was put in wrongly and my leg wouldn’t move leaving me seriously fearing I would be paralysed, and a week after the surgery date my wound suddenly burst open as I emptied Winnie in the middle of the night, leaving me screaming ‘my guts are falling out’ and crying hysterically as nurses tried to reassure me what was happening was perfectly normal. I have developed a hernia, wear a second stoma bag where my remaining colon is poking out of my wound (Oscar) and have developed a fistula….but my body wouldn’t be my body without some dramatic complications right?

But all in all I am happy. I have no regrets. Me and Winnie have our good and bad days. She often disagrees with what I eat, dislikes my favourite food, and farts and trumps loudly at completely inappropriate times. I think of having Winnie as like having a newborn baby – she needs feeding, changing, cuddling and protecting and will always wake up at the most inconvenient and inappropriate moments and start crying for help.

For the first couple of weeks I felt depressed, downright disgusting and sorry for myself. But after just over a month I decided to take off the sweat pants and baggy tops, get my hair cut and put on some new clothes and embrace my bag of well crap and leap into a life filled with adventure and new experiences. So I started my Stoma Bag Challenge, and basically, decided to start living my life and doing the things I had always wanted to do but had never been brave enough or able to do because of my illness, which (as much as I always said it didn’t) ruled my life.

So the idea is I have to do 101 challenges with my Stoma Bag…that doesn’t mean Winnie has to do them herself, but I have to do each of these challenges and she has to (obviously because she is attached to me) come along for the ride. We have just five years to finish this extensive list, why, because I will be 30 and 30 is the stereotypical movie / trashy book landmark for any wish list and I don’t want this to be a morbid ‘do before you die’ bucket list.

So, its around four weeks into the challenge and I have started a blog and, yes argh, a vblog, to share my story and hopefully help spread awareness of IBD help others not to feel alone or live in crippling fear of surgery and the embarrassment of Crohns disease. I have been overwhelmed by the response from my family, friends and the world about my blog, I have been approached to do magazine articles, be interviewed for books and have been called an inspiration – one young girl even said she felt she would now be able to face surgery after reading my rambling tales of my challenges with my bag, to which I can only respond SOB!!!

Why am I doing these challenges, some of which are insane and impossible (jumping out of a plane, well WHY THE HELL NOT!! No seriously, all I want is to show others facing surgery or who have had it that you are not alone and that just because you have a Winnie (or an Oscar or Priscilla) or whatever silly name you give your bag, that your life isn’t over – in fact embrace it and you might realize that you are finally living for the first time!

As my friend said, “it’s just a bag of shit, that’s all”…and that’s exactly what it is, my literally attached to me “friend” Winnie is a big bag of poo! I have realized if I don’t see the funny side when it farts and makes weird noises at the most embarrassing and intimate moments I will spend the rest of my life disgusted with myself.

Find out what the challenges are and watch a video from Rachel tomorrow in Part 3.

You can follow Rachel on Twitter @thestomabaglady and at her blog http://adventuresofthebaglady.wordpress.com

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.