I’ve had Crohn’s for over 30 years- and whenever I’m out and about have to carry a change of underwear and/or clothes with me- just incase I don’t get to a loo on time. People don’t see that there is anything wrong with you- and don’t make allowances. I got given out to by one woman in Liffey Valley when I had to use a disabled loo last weekend. Its not even that she was disabled and needed to use it- because I didn’t look ill- I was being evil for using it. Sometimes you really just want to curl up in a ball and cry.

I’m one of the lucky ones who manages to hold down a job- though I have deliberately tailored the posts I’ve gone for to try to make the most of my abilities- without my health being adversely affected. But even when you’re more than capable of doing a job- you still have to put up with work colleagues who makes a massive deal about having some extra clothes hidden away for emergencies (along with shower gear etc). It doesn’t need to affect them- but ‘no way are you entitled to anything that isn’t available to me’. So- you end up giving up the cupboard you had been offered- simply to shut them up. That its now used to store a few boxes of envelopes that aren’t going to be used until next August, is irrelevant- you aren’t being given an accommodation that someone else who knows best doesn’t think you need.

The manner in which you don’t look ill- even though you may be taking painkillers that would anaesthesise a horse alongside steroids at a level that would ban you from any competitive sport for life- means you are constantly apologising for your existence. I actually feel sad rather than annoyed when I get well meaning comments along the lines of- ‘Well, you’re out of hospital and you look fine again- isn’t it great that you’re cured’. I could launch into an explanation- a very true but graphic explanation- but when the person is actually well-meaning- and despite the fact that you’re in pain to the extent that you can’t stand up straight- its easier to simply agree- yes, I feel a lot better than I did last week (without adding- a blood transfusion and a week on IV Cortisone- has helped- and I’ll be going back for more blood transfusions in a week or two).

Darren- I know you’re trying to be funny- its not funny though- and quips like yours only make it worse for those of us whose life is badly affected by disease.

The unseen nature of Crohn’s and Colitis- and the reticence among people to acknowledge the issues- because unfortunately they are graphic in nature- means- along with having a physical disease- most sufferers are also forced to suffer in silence- alongside the ridiculous comments we constantly get from those around us- many relating to dietary advice (if I had tuppence for every person who told me I’d be fine if I avoided glutten, or dairy, or ate more vegetables, or went on the Atkins diet- or whatever the current fad du jour might be- I’d be a wealthy person).

Life is hard enough- without suffering in silence- and silence is what most people with Crohn’s and Colitis are confined to- they are the diseases that dare not be spoken of. Its good that we have had a few articles on Crohn’s and Colitis in the Journal in the last week. If they help even one person not make an inappropriate or nasty comment to a sufferer- they’ll have been well worth while.

Very brave girl for sharing her story

Well put Shane McCarrick . I had UC ( Ulcerative colitis) for over 10 year had to know every Pub, hotel and toilet on the way to work, Make sure your on a Train with a toilet , Having to leave work without notice because you need to change. Ended with Colon Cancer ( which is now gone happy days) and now have a colostomy bag and living a full life.
Good luck with your treatment Shane and I hope everything goes well. A note to people if you have any of the Symptoms get it checked out and don’t put it down to bad food or drink. This may save your life.
To all the people who thinks its funny try living with food poisoning every day of your life.

Incredibly proud to say this girl is a dear friend of mine. Well done Ali!

Very proud of you for raising awareness Ali x

Few friends have Crohn’s. Have a look into the MAP vaccine ongoing research – seems promising.

You lot making a joke about it you’s are a disgrace I won’t say I hope you’s never get it because I do then see how you’s would feel I haven’t got it myself but know people who have and it’s an awful disease.

Hear hear Shanr. Have it 20+ years and agree with everything u r saying. It is a hidden disease and u may look well but u never are right. Plus side affects include among other things arthritis and can also affect sight.

Hi everyone,
I just want to say thank you to Christina for the article and to everyone for reading it and sharing their experiences :)
To the jokers all I’ll say is thanks for the giggle! There’s many times with this disease where you just have to laugh because otherwise you’d cry! ;)

Fair play Alison for talking out, I suffer from ibs and its terrible, worse than child birth, ibs is not as extreme as colitis or Crohns but none the less I could be queuing up and then it hits you luckily some shops are good and and if you need the toilet they are very good, it really does screw things up.

So proud of you Alison for telling your story. You have never let Crohn’s define you. You have always managed it with the utmost dignity. Well done on telling people about this silent disease. Your proud Mam xo.

I know a guy from home who everyon e assumed was drug addict coz hed lost weight.apparently had chrons.people are so judgemental .screw da haters.

My god, what a bunch of horrible trolls! I’d love for one of you to spend a day in our lives and see how much of a joking matter it isn’t! You wouldn’t last 10 minutes!

To all my fellow IBDers, keep fighting, keep strong, keep positive. I know there are days (or weeks or months) when you want to curl up into a ball and cry (me today) but tomorrow things might be better. I have children, I can’t let this disease get me down and I know it’s damn hard to keep up your spirits when you spend most of your day on the loo. Just think, it could be worse, you could be like one of those insensitive trolls above

Sounds like a right Bummer

Massive , massive credit due to anybody who publicly discloses such an intimate and sensitive issue to raise awareness.

Like most sensitive issues in life,it takes huge courage which by definition is beyond most people to reveal such a personal condition publicly – thats obviously not a slight against those who don’t possess the necessary confidence to disclose such problems,just a statement of recognition of the immense strength of character to make any potential issue for which you may be judged ; be it bowel issues,being gay ,mental health issues, childhood abuse etc.

As someone utterly ignorant of the day-to-day effects of Crohn’s Disease ,thanks to Alison,Shane et al for enlightening me. I wouldn’t condemn the trolls too much either – in the age of the internet,personal discomforts of strangers on most issues is grist for the mill for ‘puns’ by would be comedians – there’s no personal malice involved- just thoughtless insensitivities about strangers to win attention from other online strangers.

Well done again – ye should be proud of yerselves for yer courage.

Sounds like a load of a scutter to me

So proud of you Alison for telling your story. You have never let Crohn’s define you. You have always managed it with the utmost dignity. Well done love for spreading the word on this silent disease. Your very proud Mam xo.

@ Anthony how inconsiderate of u

What a lot of comedians here today….here’s hoping you never have to suffer the daily agony and have some idiot make jokes about it.
On a practical level…I believe in the UK people with bowel conditions are given a card that allows them access to toilet facilities in shops businesses etc that normally wouldn’t allow public access. It simply states that the holder is suffering from a non-infectious condition but can need immediate access to toilet facilities.
Well done to Alison for speaking out…it’s a difficult one to explain to people…without discussing your bowel habits to people who don’t really know and don’t really want to hear that kind of detail!!!

Sonia Sullivan comes to mind.

Game of chrones

I hope everything comes out ok!