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‘People think when you have inflammatory bowel disease that you just go to the toilet a lot, but it’s more than that...'

Michelle Byrne (32), who works in PR and communications, lives in Newtownabbey with her partner, Stuart Meyer (31), and their daughters, Sophie (5) and Emily (2). As Crohn’s and Colitis Awareness Week begins, Michelle, who was diagnosed with ulcerative colitis, tells Lisa Smyth how it impacts her life

Family support: Michelle Byrne
Family support: Michelle Byrne

By Lisa Smyth

I was actually diagnosed during Crohn's and Colitis Awareness Week two years ago, which was a bit of a coincidence. It just came out of nowhere - I had been pregnant with my second baby and there were some things during the pregnancy that I suppose were a sign that something was going on, but I never thought it would be colitis.

Basically, I was bleeding intermittently after bowel motions so I went to the GP and he put it down to me being six months pregnant, which was perfectly reasonable.

Other than that and having gestational diabetes, it was a healthy pregnancy and a normal delivery - everything was great.

I came home from the hospital with Emily and then less than two weeks later, I noticed I was going to the toilet more, but on top of that was the urgency.

To begin with, I thought it was a postnatal thing, that I was tired and stressed, that my body was getting over the trauma of labour and I was trying to look after two young kids.

Then I started to think it was a bug and I remember being in M&S and I had my shiny new baby with me - she was all beautiful and pink - and all of a sudden I had the terrible urgency.

I was running so hard I actually fell on the ground, thankfully I made it to the bathroom, but I came home and cried to Stuart that I wasn't leaving the house again until the bug had passed.

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Michelle with Stuart
Michelle with Stuart

By this stage, I was trying every herbal remedy and over the counter medication for diarrhoea you could think of, but nothing was working.

I also started bleeding and there was quite a lot of blood.

My sister has ulcerative colitis, so I was aware of it, although I had no idea of exactly what she went through during a flare up.

Michelle with her children
Michelle with her children

I actually said to my mum that I thought I had ulcerative colitis and she said I was running away with myself, but when I told my sister my symptoms, she said it sounded like colitis.

By the time I went to the doctor, Emily wasn't even three weeks old and I was completely exhausted. I could barely keep my eyes open.

Even getting up to make a bottle for Emily was exhausting, which in turn made me feel useless because I couldn't even care for my children.

When I was at the GP, they did some blood tests and within a few hours of leaving the surgery I was really quite unwell so I rang the GP out-of-hours.

They were able to see the results of my blood tests and they told me to pack a bag and go straight to hospital because my inflammatory markers were extremely high.

They did more blood tests at A&E and my inflammatory markers were crawling higher and higher, so I was put on IV steroids and paracetamol straight away.

By this stage, I was going to the toilet 15 times a day, I was losing a lot of blood and the whole situation was getting quite dangerous.

I was diagnosed with ulcerative colitis and I stayed in hospital for three nights until they got the condition under control.

It was so hard before I left for the hospital because Emily was just a newborn and I knew I was leaving her behind, so I sat on the settee with her before I left and smelled her and held her.

Michelle with daughter Emily just after her birth
Michelle with daughter Emily just after her birth

Leaving her was harder than you can ever imagine and I was so pleased when I was discharged, but I ended up back in hospital on December 16.

When you have ulcerative colitis, you're more susceptible to blood clots.

I was having a family night out, I was taking Sophie to the Enchanted Garden in Antrim, it was meant to be a night out just for me and her after everything she had been through with Emily being born and me being in hospital.

Michelle with partner Stuart and daughters Sophie (5) and Emily (2)
Michelle with partner Stuart and daughters Sophie (5) and Emily (2)

But I started to take a pain in my back and getting breathless and eventually it got so bad that my dad took me to A&E.

By the time I got there, I couldn't sit or stand because the pain was so severe.

It turned out that I had a pulmonary embolism (PE), pneumonia, fluid on my lung and my lung had completely collapsed. Within 10 minutes of coming back up from my scan, the doctor came to see me and said I had a massive clot on my lung and I needed to start blood thinning treatment urgently.

He said if I'd been diagnosed much later, I wouldn't have survived.

It was horrible being in hospital away from the girls again and I was really sick - if I wanted to go to the bathroom, I had to take oxygen with me.

I didn't get out of hospital until Christmas Day night, so I spent Emily's first Christmas in hospital, although we celebrated Christmas on Boxing Day instead.

Michelle having treatment
Michelle having treatment

I did have to go back into hospital on Boxing Day for a blood test, but at least it was only an hour and half out of my day.

Then I ended up back in hospital on January 12 again with a suspected pulmonary embolism.

I was having the same pain as before but on the other side and I was having problems breathing.

Family support: Michelle Byrne
Family support: Michelle Byrne

They said there was no point scanning me because I was still on blood thinners and if I was diagnosed with another PE, the treatment wouldn't change.

They upped my warfarin and I spent another two nights in hospital before I was allowed home.

Everything went okay until I ended up back in hospital over Easter, this time because my colitis was flaring up.

I had really low iron as well because I had lost so much blood, I couldn't keep my eyes open. I was dizzy just walking up the stairs, so I needed an iron fusion.

I was still on steroids and every time they tried to reduce the dose, my colitis would flare up so I was put on a funding list for infliximab and I started that in May 2018.

It got me off the steroids although I have had a few flare ups, but I think they were more stress related, which for someone with ulcerative colitis can have a considerable effect.

I've always been a busy person and I have found it hard that I can't do everything that I could do prior to becoming ill.

I have had such wonderful help from my family, they have been there helping me to look after the girls when I'm not able.

There are days when I can't do the school run and I have to ask someone to pick up Sophie and make the girls' dinner. I am so lucky that I have family who are nearby and able to help.

People think when you have inflammatory bowel disease that you just go to the toilet a lot, but it's more than that, it's the fatigue, it's the treatments.

I put on so much weight from the steroids, although luckily I am losing it now I am going to Slimming World.

It's also the isolation because you can't go out and because you can't talk about your condition, it's not the sort of thing people want to talk about.

When I was diagnosed, I did so much research and I found a Facebook support group and I also got so much information from Crohn's and Colitis UK. They have been incredible.

I was confused and I was scared - I had to get my head around the fact I have a chronic condition that I will have for the rest of my life and ultimately, I could lose my bowel.

I try not to think about it too much though because it could drive you mad.

I want people to know they should never be afraid to go to their doctor if they have concerns and if you are diagnosed you should join a support group and Crohn's and Colitis UK because they are a great source of information and help.

At the moment, my condition is stable enough that I haven't required hospital admission for a while, but I never know what could happen tomorrow and that's what ulcerative colitis boils down to.

Awareness Week helps raise profile

Crohn's and Colitis Awareness Week runs from December 1 to 7 and aims to encourage people to speak out about irritable bowel disease, as well as raise money that will fund research into the conditions.

Crohn's Disease and ulcerative colitis are the two main forms of inflammatory bowel disease, affecting more than 300,000 people in the UK.

The main symptoms of IBD are diarrhoea, cramping pains in the abdomen, fatigue, loss of appetite and weight, anaemia and mouth ulcers.

It can also lead to inflammation of the joints and eye.

Meanwhile, some people can develop complications, including scar tissue in the bowel and fistulas, which is when an abnormal passageway develops between organs.

For more information about IBD, log on to www.crohnsandcolitis.org.uk.

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