'It's humiliating when someone tuts at you for using a disabled loo'

Every week, we speak to someone living with an invisible illness for our You Don’t Look Sick series.

Mesha Moinirad, 29, from Weymouth, Dorset, was diagnosed with ulcerative colitis in 2013.

Ulcerative colitis is a type of irritable bowel disease, which means that the colon and rectum become inflamed. Ulcers develop on the lining of the colon and they can bleed or produce pus.

Two years after his diagnosis, Mesha decided to have an operation to have a stoma created, where an ileostomy bag is attached. This means that his body now bypasses the large intestine and the waste is collected in the bag that sits outside his body.

Now, he works as a personal trainer and when his bag his hidden under his clothes, it is difficult to tell that anything is wrong.

He says that the way he looks often leads to judgement from other people, especially when he uses a disabled bathroom as he needs more space to change his bag.

He explains: ‘I’ve had people say things like “you don’t look sick” a lot.

‘I’ve been shouted at, tutted at and had people shake their heads for me using a disabled toilet on numerous occasions.

‘I need to use them as when having to change a bag you need more space than a standard cubicle, as well as having a bin nearby.

‘It can be very humiliating and frustrating when you feel like you have to explain yourself.’

Mesha started to experience problems when he woke up in the middle of the night in May 2013, with stomach pain.

He lost over a stone in three days but was told by three doctors that he had gastroenteritis.

Eventually, he was rushed to hospital as he was vomiting green bile and he was diagnosed with a burst appendix.

He was in a coma for three weeks, went from 11.5 stone to six stone and was given a 20% chance of survival.

When he woke up, doctors told him he would be in hospital for about six months but Mesha worked incredibly hard and left the hospital after just four weeks.

Eight months later, he was back at a healthy weight but he started to experience more health problems.

At first, he had a swollen foot and a break out of hives, but after that cleared up he started to suffer from frequent diarrhoea, which also had blood in it.

He also had a swollen, painful stomach, rapidly lost weight and he had extreme fatigue.

Mesha explains: ‘I thought it was just because of the operation but after a few months of this, I knew it had to be something more.’

It took eight months of going back and forth to the doctor before he was eventually referred for blood tests and a colonoscopy, which led to a diagnosis of ulcerative colitis.

He says: ‘When I was told what it was, there was almost a sense of relief as I was experiencing a number of symptoms.

‘I couldn’t live like a normal 23-year-old. I was going to the toilet 40+ times a day, had chronic fatigue.’

He started medication to try to control his symptoms and he tried to change his diet but nothing really worked, and he was still making around 30 trips to the toilet every day.

In 2015, he graduated from his degree in high-performance coaching and nutrition and he started working as a personal trainer, but he admits he found it even more difficult to manage his colitis alongside his work.

After four years of taking medication, he decided to opt to have a stoma and ileostomy bag fitted, which he says has completely changed his life.

It took him three months to recover from the operation, slowly building up strength again but then he returned to work and he has learnt to love life with his ileostomy bag.

Most of the time, it can’t be seen but he says that when people do see it, they think it is a negative thing, without understanding how it has helped him.

He says: ‘I’ve had people make comments or stare when I’ve been on holiday sunbathing and swimming with it on show.

‘I’ve overheard people saying “poor thing’ before”, but for me, my bag has been a life improvement.’

Although he needs to change the bag regularly and he still has some problems, it has reduced the level of pain he is in and allows him to have more ‘good days.’

View this post on Instagram

No two days are the same ☯️ • • 💙👊🏾

A post shared by MrColitis/Crohns (@mrcolitiscrohns) on

He adds: ‘Sometimes I can be woken up in the night due to my bag leaking. This normally happens in the early hours of the morning, so can leave me tired in the daytime and if my stomach is playing up, I can feel fatigued and uncomfortable.

‘My bag has leaked at work when I’ve been with a client and I’ve had to run off to change it, disrupting my day and sometimes embarrassment.

‘The worst was when it went on the motorway when I was on the way to a wedding – all over my suit!

‘On a good day, I won’t have any problems. Apart from when I have to empty it which is normally just 2-3 times, I forget it’s there. I am full of energy, love my job and am able to do whatever I like – I don’t feel disabled at all!

‘I don’t get ‘symptoms’ anymore, I just have to be more careful with what I eat as some foods can cause blockages – no nuts for me this Christmas unfortunately!’

Mesha is very active on social media and posts about training, working out and living with a bowel condition.

He has over 17,000 followers on Instagram, posts on Facebook and a blog. He wants to show how you can still achieve a lot with bowel disease or an ileostomy bag.

Since having his bag, he has completed a half marathon, a Tough Mudder and cycled 100 miles for charity.

He explains: ‘My coping mechanism has always been putting pen to paper and that’s why I started blogging.

‘My online platform has allowed me to engage with a community of others that have IBD, other types of invisible disabilities and those like myself with a bag.

‘Talking openly about these conditions really helps. Knowing that there are others that have been or are going through the same thing can be a huge comfort, not just through giving or receiving advice but having that mutual understanding.’

Although Mesha feels that it’s great that more people are being open about their conditions through the internet, he feels that more needs to be done to help people understand what it is like to live with an invisible illness.

‘I think we are going in the right direction,’ he says. ‘There is more awareness than ever before, but I think it needs more attention from the government and the health sector.

‘There are so many illnesses that aren’t rare, that people know nothing about and that are having a huge impact on people’s lives.

‘I speak to people all the time that have invisible disabilities and are scrutinized by their employers for having to take time off or have special arrangements made, yet it seems simpler and more inclusive in some ways for those that have disabilities you can see.’

How to get involved with You Don’t Look Sick

You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.

If you have an invisible illness or disability and fancy taking part, please email [email protected]

You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.

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