Woman, 27, shares horror of living with stoma bag which leaks all over clothes
A woman has described the horror of living with a stoma bag which leaks all over her clothes, forcing her to buy new ones every week.
Jen McGregor, 27, from Glasgow, Scotland, spends up to £400 a month on replacement outfits as she cannot stop waste from leaking out of her stomach.
Her nightmare is caused by an allergy to adhesives which secure the stoma bag to her tummy, meaning it comes away when she eats or drinks anything.
She was forced to have an ileostomy after doctors removed her large intestine, which had been badly damaged by Crohn’s disease.
Jen told The Mirror: “It means anything I eat goes into a bag which empties throughout the day. It’s how I go to the toilet.
“I need to get new clothes about three times a week. My mattress has been leaked on so many times I have to buy a new one every few years.
“I shop around for discounts and try to get clothes as cheap as possible. It means if I leak it’s okay to get rid of them.
“I spend between £300 and £400 a month, which is a huge amount as a student. All of my student loan goes on them.
“For the past five years I have avoided wearing my favourite clothes because I don’t want to ruin them.”
Describing her ordeal, Jen said that any liquid that she drinks comes out like diahrrea, while solid food passes into her bag in exactly the same state as when she chewed it.
She added: “It turns my clothes brown when I leak. Enzymes from my digestive system take the dye out of things. Black jeans can become rusty red so it’s really obvious,” Jen said.
“I love black but my second favourite colour is white or cream but I can’t wear them. I just don’t have the confidence to wear it and not have anxiety about leaking on it.”
Because of this she fears she will never be able to wear her dream wedding dress if she decides to tie the knot in the future.
She said: “It’s something that really stresses me out. My boyfriend and I have spoken about marriage.
“I worry that if I have a leak on my wedding day it would be on show to everyone. I wouldn’t be able to hide it.
“I’ve been through thousands of wedding dresses from different companies to see what’s available for the future. It will limit me to different styles.”
She added that she would only be able to wear a dress which does not restrict her stoma bag.
Jen required an ileostomy after she was diagnosed with Crohn’s disease, which causes inflammation of the bowels, in 2007.
During the operation a hole is cut in the stomach and a part of the intestine is put through the opening, meaning poo and wee feeds into a bag.
Although doctors told her she needed the surgery in 2007, she decided to postpone the procedure as she was self-conscious.
It wasn’t until 2014, when she started university, that she finally went for the operation as her large intestine was at risk of perforating or becoming cancerous.
However, since the surgery she has suffered a series of setbacks.
Jen said: “At the beginning everything was fine but over time I developed an allergic reaction to the adhesive that keeps the bag stuck to my stomach.
“My skin was weeping and you can’t get something to stick if it’s wet. My waste was seeping into the sticky bit.
“I had surgery in 2019 to refashion my stoma (the artificial opening created out of the small intestine) to get all of my output into the bag.
“During the surgery I had lots of serious complications. Every time they tried to make a new stoma it would lose blood supply and die.
“Now I only have about half of my small intestine.”
Jen said food and drink will now pass into her bag within an hour-and-a-half of her consuming it.
She now has to drink up to five litres of fluid a day or she will be seriously dehydrated.
The education and social research student added: “The dehydration is so severe it causes me to get kidney damage.
“I’ve been admitted by an ambulance to hospital for it eight to 10 times in the last year because it’s already so severe.
“Doctors said that if they do more surgery then I would never be able to eat normally again as I wouldn’t absorb any nutrition and would require being fed artificially through a line from my arm into my heart.
“That is dangerous too and can cause organ failure and sepsis again.”
Despite everything, Jen has managed to create something positive out of her ordeal by setting up an ileostomy-related art store called Crohnie Clothing.
She has also set up a Facebook page where she shares updates about her condition.