Sam Cleasby runs IBD website So Bad Ass, spreading awareness of Crohns, Ulcerative Colitis, Ostomies and Jpouches and also body image and self-esteem. She is a writer and public speaker working all over the UK bringing humour and honesty to her tales of living with Inflammatory Bowel Disease.
She knows the pain and embarrassment that IBD can cause; how it affects quality of life, work and relationships. Her blog is about shouting out about chronic illness and spreading the word. It is about not feeling alone, it is about stopping poo being taboo and sharing experiences. It is about being So Bad Ass.
So the decision was made, you have donned the gown and ugly stockings and have been wheeled into theatre. You awake in recovery and the surgeons have removed your colon and you are now sporting a stoma. A piece of your intestine has been pulled through your abdomen and your bottom is now defunct in the bathroom. You have a colostomy or ileostomy bag that is collecting your waste.
In September 2013 I had a colectomy and ileostomy, and I had to learn a lot in the following months. A new way to live, how to care for my new attachment and how I needed to emotionally and mentally reassess my life.
If you have just had a stoma created, I would recommend using all resources available to you to find out as much information as you can. Through websites, blogs, your doctors and stoma nurse. Knowledge is power and it really helps with the lack of control you can feel.
I began my website just before my surgery initially as a place of cathartic writing, but it quickly became a way to reach out, inspire and promote ostomies to the world. Talking about IBD and ostomies bring the traditionally taboo subjects of toilet habits into the mainstream. My motto is “Stop Poo Being Taboo”.
I learnt very quickly that preparation is key, whether it is for a bag change or a day out, having all the items you could need in easy reach makes everything a little easier. I bought a nice wash bag to keep my travel kit in and ensured it was always ready to go.
Items that I wouldn’t leave the house without included:
2 or 3 spare bags Dry wipes Wet Wipes Barrier wipes Spare underwear Pair of leggings Disposal Bags Disabled Toilet Key (You can get one online by searching RADAR keys)
After my surgery I realised that I had faced something very difficult but I knew I didn’t want this ostomy to ruin my life. It was meant to give me a new lease on life, one without the symptoms of Ulcerative Colitis and so I knew I had to be brave, gain a great sense of humour and make myself get out into the world and enjoy life. Just three months after my surgery I went traveling to Vietnam and Australia!!
I speak to many people who feel that an ostomy is the end of their social life. They have embarrassment, fear and anxiety about going out in public. I do understand those feelings but we need to remember that this little bag is there to save our lives and so we owe it to ourselves to live it. It isn’t easy but when you speak to others with an ostomy or see them online and in the media, it really helps to know you are not alone.
As we look forward to Christmas, it can be a daunting time if this is your first Noel since getting your stoma. Instead of worrying about the things you may not be able to or want to do, think of all the things you can! Think about what food suits you, it is different for everyone but a little forward planning will mean less stress on the big day.
If you are celebrating away from home then make sure you have plenty of supplies. Whilst I am away from home overnight I use disposable waterproof mattress protectors, I have never actually needed it but the safety blanket of knowing if I had a leak that the bed wouldn’t be ruined helps me to rest easy.
My final thoughts on both Christmas and life with an ostomy is that you need to surround yourself with people who you trust, who you can share your physical and emotional needs with. When I am in a situation where people do not know about my health problems, my anxiety levels are high, I worry about noises and leaks, and I worry about what people think if I go to the toilet often. But when I am with people who know what issues I have, I feel so much more relaxed and happy.
This Christmas, don’t let your ostomy become a barrier to fun, that little bag is part of you, it has rescued you from disease and you are a warrior who has battled through surgery and recovery.
Your ostomy is like a beautiful bow on the gift of life, stand proud and have a fantastic Christmas.
AL/1851/12.14/0.001. Date of prep: Dec 2014.