Having an Ostomy
by Elizabeth Prosser
(Pantygarreg, Llwynygroes, Tregaron, UK)
The ostomy puppets
I have an ostomy. That means I wear a bag on my abdomen. In my case it collects feces, as I no longer have a rectum. There are 1.2 million ostomates in the UK today. 300,000 are children under 10.
In my case, on Christmas Day 2007, I woke up with tubes going every which way. The last thing I remembered was being given sedation for yet another dreaded colostomy. While under anesthesia, the surgeons realized that I would not survive without immediate surgery, which they promptly carried out. I previously had two years of abdominal pain without a conclusive diagnosis.
Following the surgery it was revealed that I had severe Crohn’s disease that had all but destroyed my bowel. I was lucky I had my life. The following days were a blur, my husband remained at my side trying to explain that the bag was permanent and all the adjustments we would have to make to our formerly very active lives.
Over the next four years, which included another ostomy, we researched everything there was to know about ostomies. Coming from a journalist background, it was easier to source university studies worldwide, psychiatric papers and medical journals. If it was in print, we read it.
At the end of our studies we had a manuscript, a resource book to guide new ostomates on their new journey. "Unwanted Baggage" was published in late March 2011, with resounding success on amazon by ostomy reviewers.
To update the book, we started a website to also specialize in pages for child ostomates, through the medium of a troop of ostomy puppets we called the Gastronauts. We started to provide (free) certificates for all children who had undergone ostomical surgery.
Six weeks later, we have 1200 subscribers to our Newsletter; we have issued 200 pairs of free disposable underpants and created over 92 certificates for bravery under surgery.
All this in such a short time, but it is not enough.
My husband and I have retired and have decided to donate the royalties from the book and the profits from any article sold on the website to the UK ostomy associations. Thus far, in 6 weeks we have donated £201 between the Colostomy Association, The IA support Group, The Urosotmy Association, Crohns and Colitis UK and a local charity, the Bronglais Hospital Fund.
Our goal is not only to raise money but also to raise awareness of this life-changing condition that gives a new meaning to a "Bag-for-Life". Other than Virginia Ironside's account of her life with a three-month temporary bag that she could not wait to rid herself of, no other celebrity has admitted to wearing a bag.
Coming out of the ostomy closet is not socially acceptable and yet we are talking about 9% of the population, through no fault of their own (as it is not alcohol, drug or food related) have had their everyday lives changed forever. From body image, clothes, travel, restriction of diet, activity, intimacy, pregnancy -everything changes.
47% of all pre-ostomy relationships collapse. 72% of new relationships post-operatively fail. Can you imagine being a teenager dreading an intimate situation? Even a simple cuddle can reveal the bulge, rustle or smell (in rare cases) or presence of the bag.
Have you watched a seemingly ordinary person emerge from a handicap toilet and wonder why they are not using the regular loos next door? Chances are, he or she is an ostomate and needs to change or empty a bag, which requires a sink within reach of the toilet and a proper disposal bin. Parking in a blue badge area - chances are they need to run to the loo to change a burst or leaking bag.
Last week, a baby was born in our small hospital. From delight to panic as the parents were told that their new baby girl needed ostomical surgery. Not only did they have to change nappies, they had to avoid cross contamination with the bag change. Bathing with bag on, showering with bag off.
Her little life will be full of restrictions. 'elf and safety will stop her participating in some school activities (trips and swimming), her teen years will be anxious, waiting for a new beau to discover THE BAG. I have read many personal accounts of teenagers worldwide and their letters are heartbreaking. The book and website are not enough.
We, as a country (worldwide really) must start to make ostomies acceptable. Its acceptable to have a breast removed through cancer, reconstructed, you might not notice the difference.
Wearing a bag - you do notice - no matter how hard we try to disguise it. It does not behave. Bags come in all shapes, sizes and styles but they all have faults. All who wear them have experienced the embarrassment of a burst or leak at some time. Travel is from toilet to toilet. Overseas travel by air causes the bag to expand like a balloon under cabin pressure - yet the red light is on...imagine!
We have met with mixed reactions to the book and website, Gastroenterologists, stoma nurses and medical people involved daily with ostomates love it. Ostomates' reviews are praiseworthy. Other people have suggested we should have "kept quiet ", "Been more discreet", "Did we need to know" "Why put a bag on the front cover, I didn't know what one looked like!"
Think of our injured soldiers with terrible abdominal injuries that now face life with one or even two bags, paralysis victims who have to have two bags, road accident victims whose lives are changed by abdominal and bladder injuries, children born with defective bowels or bladders, diseases that cause the removal of bowel or bladders (cancers, Crohn’s colitis and many more) all = 1.2 million people in the UK alone, 36 million worldwide.
We all need to know about the possibility of ostomical surgery and its ramifications, we are not lepers, an ostomy cannot be caught or caused through self-abuse (drink/drugs). It is unexpected and unwelcome.
But we are an excluded community.
I ask that you all look at our website, that also shows the lighter side of ostomical surgery. Please contribute if you can to the Ostomy associations who are doing such valuable work to improve the bags, provide research into alternative stem cell surgery, and supply welfare funds for ostomates who cannot work due to their condition.
Funds for ostomate children, so they know they are not alone. Have a look at our ostomy puppets and watch the new videos where they will discuss their problems.
Thank you all, from Elizabeth and Philip Prosser
Authors of Unwanted Baggage and the website www.thebowelmovement.co.uk