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A bag is for life: A patient story

Posted: 24 November 2022

We recently shared a story written by Linda Boulter, a patient with a colostomy, and we are delighted to share this second story from Linda.  Linda writes short stories for charities and has had this one published in Colostomy UK’s Tidings magazine.  Thank you once again Linda for sharing your stories to Salts Healthcare for us to read.

 

A bag is for life

“I’m afraid we will have to operate and you will have a permanent stoma,” the Consultant looked at a shocked Katie. A few minutes later Katie, holding her husband Chris’s hand, replied: “If that's what keeps me from dying and gives me longer with Chris and my family, that’s fine.”.  The Consultant raised his eyebrows, probably in amazement that Katie remained so matter of fact about the shock news.

“Will I lose my hair if I have to have chemotherapy afterwards?” she added.  The MacMillan nurse sitting opposite her smiled, maybe with amusement that Katie was probably more concerned about losing her naturally blonde hair, which would grow back, than having a stoma. She joined in with the conversation.  “Let’s not worry about that yet, you may not need chemotherapy.”.  “Okay, that’s fine, what happens next?” Katie looked at the Consultant, then the MacMillan nurse for more information.

Over the next few weeks it was a whirl of scans and appointments leading up to the operation. The operation was then followed by gruelling treatments. Katie had no problems adjusting to life with a colostomy, but more importantly, the treatments did not result in any hair loss!

Over the following years, Katie recovered as much as she could and family and working life resumed.  Her first recollection of ‘bags’ was when she was a young child. She had barged into a spare bedroom at her home forgetting that a relative was stopping over, only to find him changing his bag. Back then the stigma of ‘having a bag’ was far greater than in more recent times. At her age then, she didn’t know anything about them and it played on her mind sometimes by what she had seen. It was made worse by the fact that she ran out the room straight to her mum downstairs and said she was frightened. Her mum put her finger over her mouth: “Shush Katie, go outside and play.”

Back then, things like that were brushed under the carpet. Thankfully, things had improved over time. For many years, prior to Katie having her operation, she had always supported the Crohns and Colitis Bluebell Walk each year, because one of her friends had an Ileostomy. David was always pleased when Katie and her family joined him and Paula for the charity walk. So Katie knew people who had ‘bags’, which is probably why she was able to cope better with the news she was to have one. Not once had Katie thought ‘why me?’.

Over the years, the one thing that did annoy her was when she heard people talking about others who had stomas.  A common comment might be, “Did you know (so and so) has a bag now?” or “Don’t you feel sorry for (so and so) they have a bag.”.  Katie had now lived with her bag for five years. In all that time she had not felt at all sorry for herself so why should other people feel sorry for her? Maybe all those other thousands of people who had permanent or temporary bags didn’t want sympathy? In fact, Katie had spent a lot of time thinking about the time when she may have said she feels sorry for so and so. Did that person want others to feel sorry for them? Probably not. She had also done a lot of thinking about disabilities and hidden disabilities. In some ways Katie wished she had made a career in some kind of health care work. But, it was too late now, she had spent her working life in retail and it was probably too late to change her career, particularly as it would cost a lot of money to retrain, and she needed to earn money to help with the bills, not spend it on herself. Having thought of what might have been, she did, though, enjoy her job at the large department store in the city. She had several good friends in her department which was a branded clothing section.

When Katie returned to work after her operation, her bosses were very supportive and made ‘reasonable adjustments’ to her change of circumstances, which made her feel very comfortable at work. She worked three long days each week, including one day at the weekend, alternate Saturdays and Sundays. Apart from her bosses and a couple of work colleagues who she worked closely with, no-one else at work was aware of her colostomy. There was no need for anyone else to know. Katie didn’t keep it a secret, but she didn’t broadcast it either.

One day at work, Katie went to the canteen for her fifteen minute break. It was just after eleven o’clock and the canteen was pretty full. She didn’t see anyone she knew really well so she sat on the only empty chair she could see at the end of a long table. The department store was very big, with lots of staff all working different shifts. There were a lot of staff that she saw around but apart from acknowledging with a friendly ‘hi’ to, she didn’t even know many of their names. She was sipping her coffee whilst replying to a text message from her daughter, when she overheard a conversation between two staff members, sitting two seats away from her, neither of whom Katie knew.  “Do you know when Kay is coming back, Helen?”.  “No, I spoke to her husband and he thinks it could be a month or so,” replied the one called Helen.  “I heard she is having ‘a bag’, that sounds horrible, bet she won’t be able to come back with one of those,” said the one whose name she didn’t know. The two women both pulled a face.

The conversation struck a raw nerve with Katie who was normally fairly quiet and reserved. Suddenly, she stood up and looked at both of them and what came out of her mouth surprised herself, not to mention Helen, her colleague and others in the canteen.  “I have what you call ‘a bag’, if I didn’t have ‘a bag’ I would be dead.”.  The whole canteen went quiet and Katie felt herself blush, she grabbed her bag and headed to the loos. Once inside, she sprinkled some cold water on her hot face, nipped into a cubicle for a wee, then washed her hands, composed herself and went back to her section. She tried to put the whole incident out of her mind, despite how hard it was. Thank goodness she wasn’t back to work until the weekend.

The following couple of days where she was either busy at home or shopping, her mind kept returning to the incident in the canteen. She had mentioned it to Chris whilst they were having their tea one night and his reply was, ‘Good for you!’.  It was so out of character for her to speak up like that. She felt bad about eavesdropping into their conversation but, conversely, they spoke so loud and it was offensive, particularly the way they pulled faces at each other. To make matters worse they were chatting about their ‘friend’ and work colleague’s personal business and who had clearly been through such a lot. So much was going on in her mind and for once she was not looking forward to going in to work on her next working day, to a job that she usually loved.

When she did go back, it was business as usual and she soon got into the normal routine. She was also worried about bumping into the ladies who she had stood up to. When it reached late morning, her boss rang down and requested to have a word with her in the office at two o’clock. Katie decided to go out at lunchtime for a walk, she felt anxious about the meeting. When it reached two o’clock a nervous Katie knocked on her boss’ door. “Come in.”.  Katie walked in and, to her surprise, the two members of staff who made the comments in the canteen were sitting on chairs next to her bosses desk, both looking a little sheepish. Her boss swivelled her chair around and welcomed Katie.  “Katie, Helen and Julie have something to say to you.”.  Helen turned to the side of the chair and picked up a beautiful flower arrangement and presented it to Katie. “Both Julie and myself are so very sorry, Katie. We were out of order discussing the personal business of our friend and work colleague and also to you. We didn’t realise how hurtful we were and we should have, we are deeply ashamed.”

Julie didn’t speak but looked close to tears. “You are both forgiven,” a shocked Katie replied. “Let’s just forget about it and learn from it. I have already because I shouldn’t have been eavesdropping on your conversation. Thanks so much for the flowers, they are beautiful.”.  With that, the two ladies left the office, leaving Katie with her boss.  “Sit down Katie, I want a quick chat,” she said.  Katie sat down in one of the now vacant chairs.  “Katie, one staff member reported to me what happened and what you said. Thank you for accepting their apology, but there is one thing I want to ask you. Obviously, I knew you had a stoma and I hope you don’t mind me bringing it up?”.  “No not at all, it’s not a secret, but just something I don’t go round broadcasting….well not normally!” Katie laughed.  “Well I wondered if you would consider this? We are in the process of doing our new promotions brochure. How do you feel about modelling some sportswear with another staff member from our London store? He, like yourself, has a stoma. There are new lines of sportswear that are suitable for people with stomas and hernias.”.  “Wow, I like the thought of being a model especially if it raises awareness. Anything that reduces the stigma of a stoma can only be good.” Katie smiled. “I also think that I will treat myself to some fancy unique cover for my bag!”.  “There is an added bonus, Katie, you will be paid quite well for it too!”.  They both laughed.

Katie went back to her section. Her worries lifted. She smiled to herself, just amused at the thought of modelling sportswear!

She couldn’t wait to get home and announce her new second job to the family over their planned takeaway meal that evening! A Chinese takeaway that Chris will pick up and carry home in their supermarket ‘bag for life’ ………… to Katie and her ‘bag for life!’