Things not to say to a person with Crohns or colitis

I’ve recently been diagnosed with Crohns.   It’s a new landscape and I’ve a lot to learn.  Like there are side-effects. To Crohns.  Not only do I have a condition – it has sucky side effects too!  Like mouth ulcers.  (A daily mouthwash with Corsodyl seems to help).  And anaemia because Crohns doesn’t make you feel tired enough.  One good thing though –  I’ve had anaemia for most of my life and like lots of people, just get on with it.  But it wasn’t until a doctor was standing over me in hospital and said: ‘You have pernicious anaemia,’ in a tone that suggested it was my fault, that I decided to get serious about it.  I now take four Floradix iron tablets a day and feel so much better for it.

Quick side note here: Ladies – don’t put up with anaemia.  Go see your doctor and get treated.  I’m furious with myself for semi-ignoring it and functioning at 60% for several years.

So I had a Crohns attack yesterday, caused, I think, by the very medication I’ve been given to rid myself of two gastric ulcers – another side effect!  Omeprazole is prescribed to reduce stomach acid and yet one of the main side effects mirrors an attack of Crohns or colitis ie stomach pains, nausea, bleeding and diarrhoea.  I was prescribed four a day, and after a few days, began waking up at night with horrible wind and stomach pain –  Which sounds fairly mild until you’re in the grip of this nauseous knot of pain, lodged under the ribs that just won’t shift.  I spent most of yesterday rolling round on the bed clutching pillows and hot water bottles chewing on deflatine (total waste of time). Eventually I crawled into a hot bath and it gradually melted the pain away.  Here’s a thing.  As I sit here typing this, I get a small twinge and freeze.   It could just be a wee bit of wind.  Or the precursor to a full-blown attack.  Which sets my mind scuttling over everything I ate today.  Was it that ginger biscuit? Two bites of doughnut?  Apple?

No it was just wind.  Phew.

Crohns is so not sexy.

So side issue.  I have to get those gastric ulcers cured, but I can’t take any more omeprazole.  And I’m tackling the anaemia.

But one downside of a new diagnosis is the comments.   Because what with these ‘nutritionists’ everywhere (hey who needs actual qualifications when you have thousands of Instagram followers) plus friends and family trying to be helpful, you’re never short of an opinion.

You look ok.

Thanks.  Next time I have an attack I’ll take photos of me crying in pain and rolling round on the bed.

You’re so skinny.  Lucky you!

Hmm –  not absorbing nutrients due to my stroppy colon lucky? The agonising stomach cramps lucky? I love food.  I hate to think I may become paranoid about it.  And being too thin over 45 is not a good look.

You can’t be that tired

Yes I can.  Even with the iron tablets, after an attack I’m fit for nothing.

My friend followed a <insert batshit diet> and she’s completely cured!

It’s entirely possible that the person you mention felt much better on her batshit diet and that’s great.  But Crohns is tricky and what works for one person may not for another.  I am still finding out what works for me – via a food diary.  These kinds of dietary pronouncements are often delivered in a hectoring tone, carrying the implicit message – serves you right you have Crohns you filthy meat eater.

I know just how you feel.  I had terrible wind/stomach cramps/indigestion/verbal diarrhoea once.

Unless you’ve had a bowel disease you don’t know what I feel.

All useful tips welcome!

 

This entry was posted in Health, My Twisty Colon and tagged , . Bookmark the permalink.

One Response to Things not to say to a person with Crohns or colitis

  1. Pingback: Gagging Order | Lynda Jane Purcell: Freelance Mum

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