Derry woman’s Instagram helps people with stoma bags ; ‘You do not have to be ashamed’

Mary Rose McCready’s journey started back in 2012, but since March 2020 she has been living life with an ileostomy, ‘which is a stoma that is created from you small intestine as your large intestine (colon) is removed.’

The mother of two boys, Cian (6) and Lochlain (4) Mary Rose is ‘passionate about raising awareness around Stoma Bags and bowel cancer’ and has been fast gaining followers on her Instagram page called ‘big_c_stomaandme’.

Mary Rose, who has worked in the health and fitness industry for 18 years, told the Journal how she was diagnosed with bowel cancer in 2012 and had surgery. While she got on with life, she began to have further health issues following the birth of Lochlain, which culminated in emergency surgery in 2020.

In 2012, following her bowel cancer diagnosis, Mary Rose had surgery to ‘cut away the cancerous part of bowel’ and then had her bowel reattached.

She disclosed how she was only diagnosed due to a rectal prolapse, which ‘happened out of the blue.’

“As bad as this was, in a way it was a Godsend for me, as if this did not happen the cancer may not have been caught at an early stage. Before this, I had symptoms such as bloating and soreness and constipation which was ongoing for years but I put this down to female issues, food intolerances and IBS.”

Mary Rose recovered quickly and ‘got on with life.’

“I went on to have my two boys and I found after having my second child that there was a change in my bowel habits. I was distended in my tummy area all the time - this never went away. I was always bloated, and I had to dress around this as it was quite prominent. My tummy would make weird noises after eating and I was more than often constipated.

“This went on until February 2019 when I found myself in a lot of pain and had to go to A &E. Nothing was passing (air or stool) and when I had a CT scan I was taken for emergency surgery due to a blockage in my bowel. At this stage, my bowel was also over enlarged in areas, twisted and flopping about and not in good condition at all.”

Mary Rose told how ‘nothing was right’ following the surgery.

“I was having a lot of issues. Then in March 2020, just as we were going into lockdown, again nothing was passing and I had to attend A &E with another blockage. This time when the CT scan was done the doctor mentioned that he could see what looked like two growths within the bowel and an emergency surgery needed to be performed straight away and at this stage it was a matter of life of death. I was told just before the surgery that I would need a stoma bag but this would most likely be temporarily. I later found out that my full large colon had to removed as it was badly damaged and couldn’t be saved. This meant that I was only left with my rectum which will mean a further operation in the future.”

Mary Rose told how she was in a ‘bad place’ after her surgery and felt she had ‘no where else to turn’ but to social media.

“I set the page up a few weeks after I got my ileostomy. I was in a bad place; I hated the fact I now had a stoma bag and that my life was going to be different. I did not think I could live with the stoma bag. Before I had my stoma bag I didn’t have a good opinion on them myself, so I knew how others would be thinking about me having one and it made me hide away and feel ashamed of it. We had just gone into lockdown when I got out of hospital and I had little to no support. My appointments where limited, my family had to stay in their own homes and I felt I had no where else to turn but to social media. So, I made the page up and didn’t use my name as I was so worried about anyone I knew finding out about it.

“I didn’t want anyone knowing I had my stoma bag, my closest friends didn’t know and I felt like I couldn’t talk about it. No-one knew about the page, apart from people I didn’t know but who were similar to me and had stoma bags. So I expressed how I was feeling on there. I documented my journey, the good days and the bad days and felt I could do this as no one knew me. I posted pictures of my bag on there as milestone steps, and from the support of others on the online community I finally began to find my way.”

A lovely gesture from local wax melt company, Brona at Urban Ivy Aromas, led Mary Rose to personalise her page.

The company asked if they could name their torso candle which was created with a stoma bag after Mary Rose.

“After firstly saying no as I knew my page would have been exposed to people I knew, I then decided to go ahead with it and share my journey to help educate and create awareness. So, on my one year anniversary with my stomabag the candle was released, and this wasn’t planned for this date as Brona didn’t know it was my anniversary ,so I just knew it was meant to be, the candle was released with my Instagram handle and from there everything was out and it was the beginning of a new chapter for me.”

Mary Rose has found that sharing her experience and journey has also helped so many other people.

“I have received so many messages from so many people thanking me for speaking out about this, people who have lived with Stoma Bags for years and have hidden them away due to the stigma, people who have a relative or friend in a similar situation, people awaiting surgery who have been so afraid and are just so grateful as they know by me speaking out this is making their journey easier. I have answered the awkward questions and posted them publicly and in doing so cleared up so many misconceptions that people have about stoma bags. When I got such a great response and seen how many people I was helping it motivated me to keep going.”

For Mary Rose, the most important aspect of her page is ‘to show those awaiting surgery that they do not need to hide away and be ashamed and to educate others on misconceptions about Stoma Bags, and how having a stoma bag effects our daily life.’

“ Also, to create awareness to remove the stigma of Stoma Bags and to create awareness around bowel cancer and to encourage those with symptoms to get checked.”

Mary Rose continually tries to raise awareness of the importance of early diagnosis.

“Early diagnosis is extremely important and can be prevented through regular screening.

“By doing this things like polyps and any abnormal growths can be detected and removed before turning cancerous. If caught early bowel cancer is highly treatable.”

She also speaks a lot on her page about invisible disability and how this needs to be highlighted and recognised more.

“Invisible disability is not recognised when it comes to signs on disabled toilets. The sign normally is displayed with someone in a wheelchair. This gives off the image that this is what illness looks like when in fact some of us can look completely healthy when really, we are battling something they know nothing about.

“I think the signs need to be changed and people need to be educated more, and more awareness around this needs to be created by talking about things such as Stoma Bags more openly.

Mary Rose sad that further awareness of ileostomy and stomas can be raised in a number of ways: “By creating content around this such as awareness pages like mine; by people sharing my posts and spreading the word; people speaking openly and not hiding their Stoma Bags away feeling like this is not something to be discussed publicly.

“Why should we be ashamed about something that is completely out of our control? Education is key so educating from a young age and changing disability signage.”

Mary Rose credits her ‘amazing stoma team’ with helping her since her surgery.

“The nurses are always willing to help as and when you need them. They are always at the end of the phone for any questions etc. My family has been amazing as well - I could not have got through this without them and the online community.”