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Case Study Crohn's Disease - My Inspiring Life following Surgery

by Krystal Weir(more info)

listed in case studies, originally published in issue 163 - October 2009

I'm 25 and originally from Australia, but now live in London. I was diagnosed with Crohn's disease in 1998; in 2006 I had an operation to remove most of my bowel and now have a permanent ileostomy. An ileostomy (which is one type of stoma or ostomy) is the result of an operation where part of the bowel is brought out onto the surface on the abdomen. Food waste exits the ileostomy into a bag, rather than the anus. This waste is collected in an appliance that is worn on the abdomen, over the ileostomy. I recently participated in a fashion show wearing lingerie and beach wear for the charity Ostomy lifestyle!

Krystal in a recent photo
Krystal in a recent photo

In 1998, after living my whole life in Australia, I was diagnosed with having Crohn's disease. I was 14 and had been suffering badly for two years with diarrhoea, vomiting, abdominal cramps and weight loss. Crohn's disease is a form of Inflammatory Bowel Disease that affects around 60,000 people in the UK.
I had a pretty tough time, was very sick and was treated with many different medications, despite which the disease remained out of control. I was sick for about 9 years, and although I had tried to continue working full time and have an active social life, it just seemed to be getting worse. I knew that I was taking too much time off work and if I didn't get things sorted out soon I might end up losing my job. This really worried me as my work was my livelihood and my passion. It gave me something to focus on and helped me feel as normal as possible.

Over time, the worries about my employment situation and the recent separation of myself and fiancé exacerbated my condition, and when I went for my next check-up things had reached a critical point. My doctors had always told me from when I was diagnosed there was a 50/50 chance of having a stoma and bag if I had to have an operation, because of how extensive my Crohn's had spread.

My doctor sat me down when he received the scans and told me that it was now time to have surgery and they couldn't really put it off any longer. As my Crohn's was extensive, I needed to have an operation to remove most of my bowel, and as a result in a permanent ileostomy. An ileostomy is where the small intestine is brought through the wall of your intestine to make an opening (known as stoma or Ostomy) where food waste exits into a bag. His only concern was that I wouldn't be able to cope with having a stoma, as it was now definite that I would need one. I was going to show him!!!!
I went home and did my research and had spoken to some people about their experiences of living with a stoma, so I felt well prepared about what was ahead.
I had decided that I was actually lucky to be having the surgery. I knew it was going to change my life, but for the better. I wasn't naive about it, and knew that rightly I was going to have my bad days, but I couldn't carry on being sick!

I was only 23 and had never truly lived. I really wanted to go to university and buy a home but couldn't risk putting myself into the position to fail at things that were so important.

My mother was horrified at me having the operation and she truly believed I was going to regret my decision to have it. She did come with me to the hospital though, and I was also lucky to have a best friend who was an amazing support for me.

The day of my surgery arrived and the stoma nurse came in to mark the spot where the stoma would be. My best friend came to the operating theatre with me and held my hand for comfort.
I woke up and I don't remember feeling too much pain. Next thing I know I'm on the ward and I see my stoma nurse come in. She was a sweet lady and told me that I had the cutest stoma that she'd ever seen! I thought she must be nuts!

Before and after the operation
Before  the operation After the operation

I knew that having a stoma was going to be the best thing for me and tried to get back onto my feet a bit too quickly. I hadn't really taken in that I needed to take little bit easier in the first few weeks, as my bowels were adapting to the new process. I would advise other new patients to take their time, listen to their body, and drink lots of fluids and rest!
With that sorted, I went onto focusing on getting better and getting to know my new attachment. To me it was just a part of me. The first time I cleaned the stoma and changed my bag myself, was quite nerve racking. I was so scared I was going to hurt it, but the stoma nurse told me not to worry and that it couldn't feel a thing. Soon I was poking it to watch it move and squirm around!

From the time I left the hospital to this day I have not been back to see the doctor. I have been so lucky and just gotten on with it; I finally had the new lease of life that I had always dreamed of!
After recovering and having some time off work, I decided I was now able to go to university and be able to finally commit myself to actually doing something that involved living. I went drinking with my girlfriends like I should have been at my age, enjoying myself and working; I had a life and I couldn't believe it! After university I moved to Athens and fell in love with an amazing man who loves and accepts me for everything I am, including my 'baggage'! I have since moved to London and been travelling and working full time.
I am extremely proud of whom I am and the struggles I've been through, but more importantly, I'm proud of my stoma. It has shown me how to live my life and how to be a better person. I knew I had a choice; feel sorry for myself or get on with it and be proud of my battle wounds. To this day I have not regretted having my surgery, and though I do have my bad days, I believe this happened for a reason. 
After moving to the UK I found Ostomy Lifestyle; a charity supporting people with ostomies on Facebook. They were advertising for models for an underwear and swimwear fashion show to promote positive body image for those with stomas. I had to be a part of that! Ostomy Lifestyle asked me to model for them, and it was the best night of my life. I met the most amazing people through doing this who all had their own personal struggles to overcome, but were all such positive and beautiful people. I have made some great friends through doing this and we have become fantastic support for each other.
I have found that we all know someone who knows someone with Crohn's, colitis or bowel cancer. For all you know they could have a stoma too! I really want to help others who are struggling with the decision to have an operation that may lead them to having a bag or some sort. The fact is it doesn't mean the end of your life; it's the beginning of your life!
Nothing can stop you but you!

Further Information

Krystal recently participated in a fashion show in which she wore lingerie and beach wear. This was an amazing night and helped promote a positive body image. Here is a link to the video from the night and an interview Krystal did for Ostomy Lifestyle charity.


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About Krystal Weir

Krystal Weir may be contacted via krystal Weir

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