A young woman has gone viral on social media after posting brutally honest bikini photos to show the effects of the devastating illness Crohn’s disease.
20-year-old Bethany Purnell from Carmarthenshire, Wales, was diagnosed with Crohn’s – a form of Inflammatory Bowel Disease – when she was just 10-years-old.
After medication and treatment failed to help her, Bethany decided to have her large intestine, or colon, taken out at the age of 17 leaving her with an ileostomy bag.
One of my biggest concerns before getting my ileostomy bag was 'will it show under my clothes?' I did a lot of research and found out hundreds of good tips and tricks, but after getting it I'm not too bothered if it shows or not. I'm genuinely proud of myself and my body for handling all that has been thrown at it. I've never hidden away, I've always worn what I wanted and I've always been proud. I have always been open and honest about my bag and any questions are always welcome. Personally I've NEVER had a bad comment made about me/my bag. I'm going on holiday in just over a week and I've never been in the pool, in boiling hot heat or even had my Ostomy on shown in public. This is the first time and I'm nervously excited to see how it goes. I'm excited to finally have a holiday without trying to ask someone who doesn't speak good English to URGENTLY use their toilets and explain why. Although my Ostomy has brought on a few new anxieties, it's gotta be better than… well… shitting yourself abroad ?
The bag, also known as an ostomy, collects waste that can’t pass through and is fitted to the outside of the body.
Although she was once embarrassed by her disease, Bethany now shares proud and confident photos with her 12,000 followers.
Speaking with UNILAD about how the disease affects her, Bethany explained:
Crohn’s is a life-long disease that causes inflammation of the digestive tract.
For me, personally it causes excruciating abdominal pain, chronic fatigue, inflammation of my joints, diarrhoea, bloody stool and it affects my mental health.
My Crohn’s is a severe case. Every medication or diet I tried failed to work. I had no quality of life whatsoever. My life was spent on the toilet or in bed.
Repost from last years #crohnsandcolitisawarenessweek I just wanted to post a picture of me to show how invisible this illness is. You'd never ever be able to tell that I no longer can go to the bathroom the 'normal' way and I have to wear a bag on my belly, you'd never be able to guess that I have been months without food and having to be fed by a feeding tube, you'd never even insinuate that this young and healthy looking girl has spent countless of days away from home and in a hospital bed all scared and alone. You see this girl in public and think she's a normal 19 year old. But what you don't know is that she is battling a very debilitating disease and that it will take her days to recover from a single trip out of the house. She tries to be as happy as possible, she tries her damn best not to complain and to think positive.. Some days it's very hard to see the light and she wants you to be understanding, caring and compassionate. Please don't tut at me for using a disabled toilet, my ileostomy bag just leaked and I need privacy and room to change it. Please don't expect me to give up my seat on the train, I just had a very exhausting day out and although I look well, I am suffering majorly and need this time to rest. Please be aware and always be kind to others around you. As they say, you have NO IDEA what that persons story is and what they are battling with.
During a routine colonoscopy Bethany ‘couldn’t deal with the pain any longer’ and decided that she had to take a more extreme step to deal with the condition.
She told us:
I screamed at my surgeon ‘Take my colon out, take it all out!’ And he said, ‘Okay, I’ll arrange surgery for you sometime next week.’
And then my heart sunk as I realised what I had said.
At the time, it was very emotional. I was 17-years-old and I was worried about my future.
I was worried if I’ll ever be able to find a partner that accepts me, worried if I’ll ever be able to wear the same clothes and worried if it’ll stop me from doing things with my life like swimming etc.
Bethany bravely had her diseased large intestine and rectum removed.
Crohn’s disease affects 115,000 people in Britain as well as 1.6 million in the US with eight out of 10 patients needing to have a part of their intestine removed.
The cause of the disease is still currently unknown and there is no known cure with the conventional treatment being medication.
Wanting to raise awareness about the disease, Bethany decided to share her experiences, and has been overwhelmed by the response:
The first thing I did was research and I found some amazing people that were confident and answered any questions I had.
I wanted to do the same for others. So I chose to be as open as possible with my bag, so others can see that I still live a ‘normal’ life despite my bag.
The response was amazing! I receive the biggest amount of support on my Instagram.
I’ve made the best of friends through my account and I’ve helped SO many people gain confidence in themselves. I feel over the moon knowing I’ve helped others.
This is MY body, this is the body I was given and even though I may not like this body very much, I know that deep down I’m strong enough to handle whatever life throws at me. It has been tough. It’s been so challenging to accept that this will be my body for the rest of my life.. BUT.. This body has been through hell and back and guess what? It may not be the ideal looking body, but it’s strong. This is the body of a strong young girl. I have bruises, I have countless of scars, I have cellulite, I have stretch marks and I have a bag of ? attached to it. But without all of these imperfections, I wouldn’t be me. Even though most of the time I’m not confident about myself, I have to remember that this is the same body that has survived and kept me standing. And for that, I am so extremely proud to have this body! I wear my Ostomy bag with pride & I’m proud that it’s stood strong throughout the good times and the bad times ?
Bethany hopes her posts show people what those with ileostomy bags and Crohn’s disease can do, which is everything.
She also shared the photos on dating sites so she wouldn’t have to reveal her ‘secret’ later on.
Bethany explained to UNILAD how her life has changed for the best:
Luckily now I have an amazing partner, who loves me just the way I am! It hasn’t stopped me from wearing tight fitting clothes and it hasn’t stopped me doing anything with me life.
I can even go swimming or play sport etc. and it doesn’t affect my life whatsoever!
Although my health hasn’t improved the way I expected it to – because my Crohn’s is so severe – my life has changed for the better!
I no longer have to worry about where the nearest toilet is, or having accidents in public. I no longer have to live my life glued to the toilet and it’s made me more proud of myself.
She does admit though she is still focusing on her health before she jumps into a career or studying.
(Photo from BEFORE my surgery). Surgery went well! I’m super duper drugged up on Morphine right now and I haven’t spoken to my surgeon yet.. So I’m still not entirely sure what happened during the surgery… So I’ll give a proper update when I’m able to ☺️ I’m just so glad that it’s over and done with now! As always, massive thank you to everyone’s love & support! I cannot thank you guys enough ?
To others with the same condition, Bethany shares some rather simple advice:
As silly as it may sound, try not to stress! Because stress is one of the worst things for IBD.
Every single case is different and what happened to me, may not happen to you. Don’t be frightened of what the future may hold, live for now and always be strong.
And Bethany isn’t alone in taking to social media to highlight issues affecting women and ideas of body image.
Thessy Kouzoukas – who co-owns the fashion brand Sabo Skirt – has been diagnosed with the painful condition endometriosis, which occurs when tissue behaving like the lining of the womb is found outside of the womb.
Due to this condition, Kouzoukas suffered a ruptured cyst and has shared images on her Instagram profile.
This is quite shocking to people. This is me. This is endometriosis. I never intended to share these photos hence why I'm naked, but my god I can't believe the amount of DM's I've received from girls who have endo too and feel alone. The left is my stomach 3 weeks after a ruptured cyst (5 weeks ago). The right is me now, on a drug called "synarel" that has stopped all my hormones and sent me into menopause at the age of 27. My upcoming trip to Greece along with this drug is in hopes to get me prepped and in the best condition both physically and mentally for an operation I'm receiving in late August. Endo is no joke. I'll be operated on for 7+ hours and hospitalised for a week. Please, spread the word about endo. And If you know anyone with bad period pain PLEASE tell them to get checked for this. And to my girls with endo.. you're not alone ❤️
Truly inspirational stories!
To find out more about Crohn’s Disease the Crohn’s and Colitis website has plenty of useful information and advice.
Please book an appointment to see your GP if you have any symptoms of endometriosis, especially if they’re having a big impact on your life.
As well as support from your doctor, you may find it helpful to contact a support group, such as Endometriosis UK, for information and advice.