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Living with Crohn's disease: 'I bring spare clothes with me in the car for the times I don't make it to a bathroom'

Life with Crohn’s and children is a hard one. It’s an invisible disease, where people say you don’t look sick, writes Valerie Donovan.

Valerie Donovan

CROHN’S IS LIKE a rollercoaster as you never know what to expect – the ups and downs and twist and turns, but once you get on you can’t get off!

Crohn’s affects me in many ways, including hair loss, weight gain, nausea, malnutrition, lethargy, anaemia, frustration, joint aches, headaches, skin issues, stress, depression, bloating, dehydration, vomiting, diarrhoea, constipation, and both hot and cold flushes.

I have experienced every single one of these effects, some on a day-to-day basis, and in a flare up I experience them severely. I have to keep three different sized jeans and a pair of tracksuit bottoms in my press as each morning I wake up a different size.

I have been living with Crohn’s disease since the year 2000 when I turned 20, however, I was unaware that what I had was Crohn’s disease. I knew nothing about it and was ignorant to the fact it existed. My symptoms started off as diarrhoea, but this initially would only happen on weekends, on a night out my stomach would start to feel bad.

I didn’t know what was wrong with me

I initially thought it was maybe the mixer I was using in my drink, or that when I went out for a meal perhaps the food was too rich. As my symptoms got progressively worse and I began missing time at work. I went to my GP many times who kept advising I had gastritis. I had never spent a night in hospital except for when I was born.

When I felt the worst I had with my symptoms at that point, I brought myself to Beaumont A&E and was admitted for dehydration. I spent two nights in hospital & was discharged.

Yet I didn’t feel any better, so I contacted my sister who lived abroad, but who had previously worked in Beaumont A&E as a nurse. She advised I should contact a doctor she knows, and I was sent for a colonoscopy and dexa scan in the Bons Secours Hospital.

I always remember what Dr Murray said to me, he reassured me that it wasn’t all in my head. He said “I think you have Crohn’s disease and I will know more after tests.”

He was the first doctor, the first person, to listen to me instead of fobbing me off.

Getting diagnosed 

So in 2005 after all the tests I was diagnosed with Crohn’s, osteoporosis, and I was also told I was anaemic. A few years later I was also diagnosed with an under-active thyroid.

I did my Leaving Cert in 1999 and then went on to do a diploma in mutual funds, and started working in banking.

I loved my life, but the life I was accustomed to was changing and I saw things in a whole different light. Once diagnosed, I was taken off all my food and put on a replacement drink to help my bowel rest and give my body nutrition.

I then started trial drugs called infliximab. Nothing seemed to work and so I had a right side hemicolectomy, I thought surgery would cure everything but while it helped the pain, I still suffered from loose bowel and still do.

I have had haemorrhoids removed, polyps removed, moles removed and had three operations of injective therapy as the nerves in my hand kept jumping, I learned I also had reflex sympathetic dystrophy.

After being diagnosed with Crohn’s I thought I would never get married or have children like other people. Then I met my best friend, who is now my husband, and I have two children.

I really enjoyed planning our wedding day, but had to prepare for two years for it as I was terrified my stomach would act up. I didn’t eat the day before and spent a lot of the day up and down to my honeymoon suite to use the bathroom.

Becoming a mother 

When I first became pregnant with my daughter, who is now six, my hormones took over and my Crohn’s went into attack mode, I was in and out of hospital and was on steroids.

My daughter was born 40 weeks plus a day by emergency C section.

I needed a blood transfusion and my daughter nearly passed away, but thanks to the wonderful doctors, she is here today.

My next pregnancy was also very hard on me. After my son was born in September 2012 I was told I shouldn’t have any more children as it might be too much for my body to cope with.

Life with Crohn’s and children is a hard one. I am just lucky I have an understanding and patient husband.

Crohn’s is an invisible disease – you have people saying “you don’t look sick”.

I feel isolated and trapped, I leave the school run to the last minute as I use the bathroom before I leave the house and the school doesn’t open till 9, so there is no bathroom till 9.

Even though I would be up at 6am to try and make sure everything is ready, I bring spare clothes with me in the car for the times I don’t make it to a bathroom.

I don’t eat anything until I have collected my children for the day. If I have an appointment, I stop eating at 4pm the day before and don’t eat until I come home and if it’s a long day I will take motilium so I’m not running to the loo.

Being out in public can be difficult 

There is little understanding of Crohn’s in the public domain.

For instance, if I am out with my children I need a disability toilet so I can go in with the children, but sometimes these are locked.

I have since received a toilet card which helps with most places to use their toilets or to skip a queue if necessary.

If it wasn’t for my toilet card and my parking card I wouldn’t leave the house as these give me the security to go out without worry and with two kids in tow, and that’s hard as you have to go fast and you can’t leave the children behind.

With Crohn’s being an autoimmune condition, I pick up every cold going,

I can’t be spontaneous any more.

I cancel lots of social occasions as I need to know where the bathrooms are on the way and where they are when I get there or sometimes I’m just in too much pain to leave the house.

I mask a lot of my feelings; I put a smile on at the school, in the shops, or going to the kid’s outings or appointments but inside I am crying and screaming out in pain.

My happy-go-lucky personality is gone and I have a shorter fuse. A combination of not eating, being in pain and having no sleep doesn’t help.

But I am a mother and a wife, I had to leave my job because of my Crohn’s and now my challenges are at home, while they used to be getting to and from work and dealing with my company.

So, if you see someone coming out of a disability toilet or parking in a special spot don’t think they look fine, think that they may be crying on the inside.

Or that they may need help.

I hope someday there is a cure and that people are educated properly on Crohn’s disease and colitis.

I’m still the same person on the inside, even now the shell has cracked a little.

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About the author:

Valerie Donovan

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