Sunday, September 25, 2022

“Yip, I Have an Ileostomy, and it’s WONDERFUL” The Inspiring Kiwi Who is Making Her Invisible Illness, Visible!

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We’re putting the spotlight on Invisible Illnesses in this new series. Are you one of the many Kiwi women who suffers in silence? This week we talk to an inspiring young woman who has an Ileostomy, and thinks it’s wonderful!

In this series we’re talking to Kiwi women about their health battles with Invisible Illnesses, their journeys to being diagnosed and what’s given them relief along the way. Our hope is that by sharing these stories, they may help spread awareness of these illnesses to other women, giving some tools to help, inspiration to those who can sense something isn’t quite right with their health to continue to search for answers and ideally, get diagnosed sooner! If you’d like to contribute your story, please drop a line to [email protected]

Here, we talk to Cheyenne Welham who waited for a decade to finally be diagnosed with a relatively rare – but debilitating disorder. But she also – frustratingly – is one of the luckier ones, considering it takes an average of more than 14 years to get there…

When Cheyenne Welham was diagnosed with a rare and painful genetic connective-tissue disorder at just 24, she immediately burst into tears.

But not for the reason you’d expect.

“I cried A LOT,” she says. “But mostly out of relief! I wasn’t crazy and it wasn’t all in my head. There was finally an explanation for everything that I had experienced.”

Cheyenne diagnosis was Ehlers–Danlos Syndrome (EDS) – a condition that causes faulty collagen to be produced by the body. And, because collagen is found all throughout our bodies – we’re talking skin, muscles, tendons, ligaments, blood vessels, organs, gums and eyes – EDS can affect a number of different parts and systems of the body. Symptoms and severities can vary greatly – from having mildly loose joints to life-threatening complications. There are 13 different types of EDS and Cheyenne suffers from Hypermobile EDS (hEDS), which is thought to affect between 1 in 5,000 people.

For the most part of her life, Cheyenne’s illness has been entirely invisible – something that’s made it particularly difficult when it comes to being treated by doctors and medical professionals, but also professionally and socially. It’s pretty darn tough being a teenager, or early 20-something, trying to explain to your friends why you can’t go out with them for the night, even though you look and sound fine.

But in the last few months things have changed somewhat on that front, and now Cheyenne does have an outward sign (if she chooses to share it!) that she’s not 100% well.

Three months ago she underwent ileostomy surgeries and now sports a stoma bag. It’s surgery that she says has completely changed her life for the better.

A stoma is basically an opening that is created on the abdomen, that can be connected to your digestive or urinary system to allow waste to be diverted out of your body. In an ileostomy, part of your small bowel (the ileum) is pulled through to create the stoma. You then wear a discreet pouch on your lower abdomen that is connected to the stoma.  

Cheyenne’s attitude to her new accessory is phenomenal – yip, it’s a big change, but it’s improved things for her enormously, and she’s determined to not hide it away or be ashamed or worry what others think. She’s here to show how normal, clean and wonderful an ileostomy is – and it’s everyone else who has a problem with hers who need to get over it!

There’s plenty we can learn about stomas (as well as perseverance and kindness!) from Cheyenne, but first, let’s go back a bit in time, to how things developed for her.

Cheyenne says her very first symptoms showed up when she was just in primary school – but back then she – nor any of her doctors – had any idea that there was anything sinister going on.

“My shoulders would pop in-and-out and I took great delight in showing off this ‘party-trick’ to my classmates!” she says. “But it turned out that my ligaments were far too lax to hold the joints correctly in place – and I was subsequently banned from doing any more party tricks!”

Unfortunately it would soon become clear that her unusual joints – and little party trick – was actually just the tip of an iceberg of different symptoms – but at the time it was treated as a one off, isolated issue. But by the time she was in high school she was suffering from another round of symptoms – this time far more painful. Most of them showed up when she was 15 and mainly affected her gastrointestinal (GI) tract. Over the next 10 years things steadily went from bad, to worse.

“In the end I was dealing with bowel incontinence, diarrhoea, weight loss and lots of other fun stuff on the daily,” she says. “This really affected my mental health – as one would expect – I was terrified to leave the house for fear of having an accident. I definitely struggled a lot with depression and anxiety.”

Determined to feel better and get to the bottom of what was going on, Cheyenne saw a host of different doctors and specialists – undergoing multiple scans, blood test and colonoscopies in the process. Meanwhile, she was giving everything else she could think of, or was recommended give a go too. “I tried all the weird and wonderful diets, herbal remedies, acupuncture, chiropractor, Reiki etc,” she says. But still, she seemed to be getting nowhere – except extremely frustrated.

“I was repeatedly told that it was IBS or that I was just ‘stressed’,” she tells. “I was even referred to a Psychologist at one point as a result. Sadly it isn’t uncommon, especially for young females, to have their concerns totally brushed off and disregarded. And in fact, doctors may fail to appreciate their female patients’ symptoms in part because medical research has historically focused on men.”

Then, just as she was about to give up hope, she went to a specialist GI clinic. “They finally did a particular type of X-ray that showed the tissues in my lower large intestine were strangely stretchy and weren’t functioning normally,” she tells. “Even the radiologist was confused at the findings! Finally, my wonderful GP (worth her weight in gold) made the connection between what I’d experienced as a kid and what was shown in this scan, and then later I was diagnosed with EDS by a rheumatologist.”

Cheyenne was 24 when she was diagnosed – almost a full decade since she began suffering from debilitating symptoms.  It was liberating to finally know that it wasn’t all in her head, but incredibly frustrating that she had to suffer so long before having a confirmed diagnosis.  

“I really regret that it took so long,” she says. “And unfortunately I’m not alone in this. The average time to diagnosis for EDS is 14 years. Sadly this is the case for so many and not just for EDS. Another similar yet terrifying statistic is that 1/10 females have Endometriosis but the average time for diagnosis is 8+ years.”

Battling something that other people can’t see certainly added to the difficulties in getting a diagnosis – but it also had a much wider impact on Cheyenne’s life.

“I think people naturally struggle to believe or understand things they can’t see,” she says. “So life with an invisible illness can be such an isolating experience. It’s really hard for others to know what it’s truly like.”

“The biggest thing for me is that even if I look okay it does not mean I’m feeling okay! I definitely used to put on a front when I was with other people (especially in a professional setting) and pretend that everything was fine when it wasn’t at all. Which actually made things worse for me in the long-run because when I did finally open up about what was really going on, people found it very difficult to reconcile with my outward appearance and abilities.”

It’s also made things pretty touch for Cheyenne, socially. “I used to have to cancel on plans with friends all the time because I was so unwell. I wish they would have understood that I was far, far more frustrated, guilty and upset about having to cancel than they would have been on the receiving end.”

“Even now with my ileostomy I have the right to use the Disabled toilets in public but I’m always worried that someone will make a rude comment because I don’t ‘look’ disabled (with my clothes on at least!). Luckily nobody has said anything yet but I’m sure that it will happen sooner or later.”

Cheyenne’s ileostomy was her last resort option, which she finally came to in October last year. By that time, she’d exhausted every medication and therapy under the sun. “Literally everything had failed to fix my GI issues,” she says. “So by the time the doctors suggested an ileostomy, I was just so desperate for relief that I sort of welcomed the surgery. I was probably more nervous about what would happen if the ileostomy didn’t work, than having one in the first place.”

She didn’t know anyone else with a stoma bag at the time, but has since connected with a number of incredible ‘ostomates’ through social media (including the wonderful @katemontgom who everyone should follow!).

“I really don’t know how I would have coped without having seen other people around my age on Instagram with stoma bags,” says Cheyenne. “All the pamphlets that the doctors give you beforehand only feature older people and it doesn’t really make us younger patients feel great about the bodily changes that lie ahead. We have the best and most supportive community on Instagram and I have no doubt that our community provides a lifeline for many.”

For Cheyenne, her ileostomy has been a true success story and she says that in the three or so months since her surgery, her life has completely changed for the better.

“I’m so grateful for all the small things that I feel other people might take for granted,” she shares. “Like being able to leave the house with less anxiety, not having to plan out all the bathroom stops beforehand, being able to eat and drink in public and be more present when I’m with other people. I almost feel like I’m just starting Life 2.0! 

“Don’t get me wrong, there are some definite cons to having a stoma, but the benefits far exceed the downsides for me. So right now I’m really focussing on living life to the fullest and enjoying a lot of quality time with my family and friends now that I’m able to.”

Cheyenne doesn’t want to shy away from her ostomie, but it’s also very easy to keep under wraps!

And now, she doesn’t want to constantly hide her stoma bag away, like it’s something to be ashamed of. She’s upfront about telling friends and family, and wants it to be something that’s talked about and normalised more widely.

“Initially I was quite worried about telling people that I have a stoma because I was afraid of their reactions,” she admits. “But I’ve been quite surprised because most people that I tell actually respond with “Oh that’s cool, my cousin/brother/Aunt etc. has one too!”. They’re really much more common than you’d expect and nothing to be ashamed of at all.”

But she knows not everyone is quite as welcoming and accepting of the ileostomy. “Unfortunately there’s a bit of “I’d rather die than sh*t in a bag” rhetoric out there which is just so upsetting,” she says. “Hearing things like that really breaks my heart because having an ostomy has given me back my quality of life and I don’t think that it holds me back at all. Having a stoma has given me more freedom, confidence and opportunities in life that I didn’t have before.”

She says there are three key things that she also wishes people knew and understood about stoma bags:

“One: Stoma bags aren’t just for old people, people of all ages can need one for many different reasons.

“Two: There’s nothing gross about it, and people with ostomies do not stink!

“And Three: We can pretty much do everything that you can!”

But besides just talking about her ileostomy and EDS – which she’d be stoked if you came away from reading this knowing a thing or two more about – if there’s one thing that Cheyenne would love you to leave this remembering. And that’s the saying:

“Be kind, for everyone you meet is fighting a hard battle.”

You can follow Cheyenne on Instagram at @cheyber_space. And if you have your own story you’d like to share, please drop an email to [email protected]

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