Woman who hid ‘embarrassing’ colitis now wants to break taboo around the disease
A woman who hid her 'embarrassing' condition colitis from friends and family for a decade has now refused to stay silent anymore – marking her newfound confidence and how far she's come with a skydive.
Nancy Ndure, 27, from Telford in Shropshire, has lived with debilitating symptoms and the painful effects of surgeries due to the inflammatory bowel disease she's had since she was a teenager.
Now a wealth management trainee, she was originally diagnosed with pancolitis, a type of ulcerative colitis that affects the entire colon (large intestine, or bowel), in 2013.
But until just last month, she kept it a secret from most.
“I only told my mum and one close friend. Most people in my life didn’t know," said Ndure.
“Looking back, I wish I could have been more open about my diagnosis but I was so embarrassed.
“There is such a stigma about poo and discussing bowel movements that I didn’t want anyone to know about the issues I was having.”
But now she doesn't want anyone to feel the same shame she did.
“Speaking out now, I’m hoping to break down that taboo because the more comfortable people feel about it, the more likely they will be to go to their doctor when something isn’t right, instead of living in pain," she added.
Ndure first started experiencing symptoms during secondary school when she was 14, feeling exhausted and fatigued.
But, as is so common for misunderstood chronic conditions, she recalled, "Doctors said it was just a teenage phase that would pass.”
However, by the time she was in sixth-form college, she was struggling to control her bowels, and would need to rush to the toilet unexpectedly.
And despite what she was already going through, she had the additional stress of hiding her problems from all her classmates.
“I’d have toilet accidents at college where I’d have to call my mum to pick me up. Sometimes I’d spend an hour in the disabled toilet just waiting for her to turn up,” she explained.
And then at 17, she found blood in her poo, which was a turning point.
“I knew then that I had to get medical help," she said.
Diagnosed with pancolitis, Ndure spent the next five years in and out of hospital procedures, which started with being fitted with a stoma bag.
A stoma is an opening on the wall of your tummy that brings your bowel to the 'outside'. If you have one, the contents of your gut don't travel all the way through your bowel to come out of your bottom, but instead come out of the stoma into the bag you wear on your tummy.
Around 190,000 people in the UK have a stoma, according to the charity Crohn's & Colitis UK.
“I had three surgeries during this time, the first one being to fit me with a stoma bag when I was 19," said Ndure.
“At the time I was devastated because I really didn’t want the bag because I felt embarrassed and ashamed but it was the only way to help me get better, and surgeons hoped it would be a temporary situation.
“I didn’t think anyone would understand, so I tried not to tell people if I could get away with it.”
And then around three years later, in 2018, she suffered an internal bleeding.
“I needed emergency surgery and I was ill for quite a while with it, and it took a long time for me to actually recover," explained Ndure.
Even after she could get out and about again, she struggled to adjust to life with a stoma bag, having to worry about things others didn't.
“I started to hate going out because I was always worried about finding a suitable loo to empty the bag and I’d often get stares if I used an accessible toilet because my illness wasn’t obvious,” she recalled.
“Luckily though, in 2018, I had a third surgery to have the bag procedure reversed.”
This means Ndure now uses the toilet 'normally' and no longer has a stoma bag fitted.
“You definitely live life differently after having the bag and then having it removed because I had to get used to my body again and relearning when I needed to use the toilet and knowing when to go," she said.
“But, ultimately, I’m very glad that I was lucky enough to have the procedure reversed.”
After recovering from the surgeries and living with the condition from a young age, she decided she wanted to mark the milestone in a very bold way.
“I was at my lowest and I was sick of feeling low. I really wanted to do something crazy, something I couldn’t have done when I was unwell and the idea of a skydive popped into my head," she explained.
“It took a bit of planning and was called off once due to Covid, but in August 2022 I finally took the plunge.”
On the day Ndure jumped from the plane at 12,000ft while her mum, Julie, 64, watched proudly from the ground.
“Screaming my lungs out while falling out of a plane just released all the stress I’d been holding. It was absolutely amazing," she said of the pivotal moment in her life.
“When I became weightless in the air, I shed all my emotional baggage. I realised that colitis made me into a better person and I am proud of who I am now and would not change anything.
“I felt like I did not have to hide anything any more. It allowed me to open up about my journey and connect with people who have been through similar experiences.”
And her achievement doesn't end there, as she has also raised £1,300 for Crohn’s and Colitis UK.
“I was always very sporty and athletic, and dreamt of being a professional high jumper when I was younger. My condition left my body in the condition where I was simply not up to that level of exercise," said Ndure.
“After I felt like I’d got my ‘normal’ back, I decided that if I was coming back, I was going to do it with a bang and skydiving was the first step.”
She added, “By doing this fundraiser for Crohn’s & Colitis UK, I have been able to share my experience as a colitis warrior.”
Ndure, certainly a true "warrior", is now determined to raise awareness of the condition so people can get the help they need earlier, without being dismissed or misunderstood.
“I want to talk about it openly so someone else doesn’t feel like they can’t," she said selflessly.
“I wish I could shake my younger self and tell her to speak freely. I wish I had the person I have become by my side when I was suffering alone."
She has a message for those who might be going through something similar.
“I want people to be able to go to their GP and explain the kind of symptoms I was having without being embarrassed. You aren’t too young to be diagnosed with colitis. It might not just be a teenage thing," she urged.
“You know your body best, so listen to your gut, and put your foot down when you know you’re right.”
What is colitis?
Ulcerative colitis, or colitis as it is referred to, is the general name for the long-term condition where the colon and rectum become inflamed (the large intestine and the end of the bowel where stools are stored), according to the NHS.
Small ulcers can develop on the colon's lining, bleed and produce pus.
While pancolitis affects the whole colon, other types include left-sided (affecting the life side of the colon) and proctitis (affecting the lowest part).
It's estimated that around 1 in every 420 people in the UK has ulcerative colitis, which is roughly 146,000 people. While it can develop at any age, it is often diagnosed in those aged between 15 and 25.
Both men and women appear to be equally affected.
Colitis symptoms
While everyone experiences colitis differently, the most common signs according to Crohn's & Colitis are:
Diarrhoea
Urgency (needing to reach a toilet quickly)
Bleeding from your bottom (anus)
Cramping pain in your tummy (abdomen) when needing to poo
Constipation (common with proctitis)
Feeling generally unwell (which can include a faster heartbeat)
Extreme tiredness
Anaemia (reduced number of red blood cells means less oxygen is carried around the body)
Loss of appetite and weight loss
Some people also experience inflammation in their joints, eyes, or skin
As people can have 'ups' or 'downs' with the disease, getting better and worse, symptoms could mean the condition is 'active', it's a flare-up or a relapse.
Complications can include 'primary sclerosing cholangitis' (where the thin tubes inside the liver become damaged), an increased risk of developing bowel cancer, and poor growth and development in children and young people.
Colitis causes and when to get help
In colitis, the immune system starts attacking the bowel. While the cause isn't known exactly, it's thought to be due to a mix of genes, bacteria in the gut and the environment. Stress might also be a factor.
If you are experiencing any symptoms don't delay in seeing a GP to help get an early diagnosis (if that's what you have). Doctors should be able to arrange tests to help determine your symptoms. You should then be able to start treatment within 48 hours of diagnosis if your symptoms are moderate to severe, and within two weeks if they're mild.
Your doctor can talk you through treatment options, which might include medicines or surgery, should you need it. If you are already diagnosed but are experiencing a flare-up, also seek medical advice.
While being diagnosed with colitis can be shocking or upsetting, there is help for you to manage your symptoms and enjoy life.
If you need guidance with opening up about colitis you can use Crohn's & Colitis' Talking Toolkit or the In My Shoes: 24 Hours with Crohn’s or Colitis app to help your friends and family understand what it's like to live with the conditions (Crohn's is another type of inflammatory bowel disease).
For support you can also ring the charity's helpline on 0300 222 5700 or email helpline@crohnsandcolitis.org.uk.
Additional reporting PA.
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