Living with an “invisible illness” – day-to-day living with Crohn’s

“You don’t look ill”, “Aren’t people with Crohn’s skinny?”, “All you need to do is stop eating xyz and you’ll get better”, “Have you tried Aloe Vera/Juice Plus/Forever Living?” All things I have heard in the few years since I was diagnosed.  All are frankly bollocks.  No, if I wear make-up I look reasonable. No I’m not skinny but I still shit more in the first hour I wake than than most people do in a week – or two.  No, not everyone has trigger foods (although many do, they’re probably thinking of coeliac or IBS).  And NO I am not trying your multilevel marketing scam and pumping your hocus pocus wank into my body.

I’m fed up of this nonsense. I’ve written about my first experience of surgery here and have since had a fair few surgeries, eight since you asked. I’m doing OK personally…sort of, I’m falling apart a bit but hey.  Having had 3 operations on my arse this year it seems to be finally healing.  It still hurts but, you know you just get on with it as much as possible.  The new medication seems to be working. I met with my lovely IBD nurse this week and they are very happy with my bloods. My CRP (this stands for c-reactive protein which a blood test marker for inflammation in the body) is 2 which is bloody amazing and well within normal limits (under 6).  It’s been nowhere near normal for at least 5 years, it’s been in the high teens even in remission.  At its worst it was in the hundreds but I was effectively dying so….  I’m still fucking shattered though.  She did remind me that, although I’m on this new medication (Infliximab and Mercaptopurine), I still have a chronic illness.  Yeah, despite the scars and shitting I do sometimes forget.  She was happy for me too “You’ve been through so much”.  I hate pity but to be honest I’d pity me too!

 patient in bed
I didn’t choose Crohn’s life, Crohn’s life chose me!

I have good days and bad days, good weeks and bad weeks, sometimes the weeks roll into months.  This year I have spent more time in hospital and recuperating than I care to remember.  Too much time away from my family, my two little boys too many memories to be made missed because of this cruel disease.  There were times I didn’t want to go on.  Yes I mean top myself.  The pain was excruciating.  I had a 4.5cm deep horseshoe shaped wound around my arsehole that was being packed (it’s not funny!) which basically means the poor nurses were having to stuff it with gauze.  The pain, oh the pain!  I couldn’t bear it.  Having it done at least once a day.  And it kept falling out when I used the loo.  I remember vividly crying, apologising to the nurse and telling her that “I didn’t want to go on”.  I had had this fistula for months and I’d had enough.  She was very sympathetic whilst trying to get me high enough on Oramorph that she could do her job and shove gauze in my bum.

Hospitals can wear you down, you very quickly become institutionalised.  Waiting for the next food round, tea round, drug round.  Worrying that you might have been missed – especially when you have your own room. You go stir crazy.  I am not the sort of patient that lies around feeling sorry for themselves.  I get very frustrated if I can’t do things for myself.  Being at the mercy of medical professionals is not my forte yet here I am. The best and worst sort of patient.  The best because I just get on with it.  The worst because I am not good at taking it easy.

Surgical stockings
Seriously sexy surgical stockings! Me before my most recent op in July. You have to keep a sense of humour

I’m pretty sure most people I know would describe me as “strong”, they say things like “I wouldn’t be able to cope” but I am here to tell you you would.  You have no choice.  Yes I have thought about ending it.  Yes that may well be selfish when I have two children who I love very much but by heck when you live this every second, every minute, every hour, well, it can be too much.  Too effing much. Don’t judge until you’ve been there, as they say. But then there are the good days, and by heck do you make the most of those!  I usually overdo it and pay for it the next day but it’s worth it.

Having Crohn’s has made me less selfish.  I appreciate life so much more (even if sometimes I want to end it) and you realise life really is too damn short.  Make the bloody most of it  but I want to say it’s OK to feel down, why wouldn’t you? You’re allowed.  You can’t be strong all the time.  Just remember you only get one life bloody well live it

 

3 Comments

  1. You are bloody amazing! I’m glad your bumhole is better now. xx

  2. Bless you, you have been through the wringer haven’t you?
    I have Crohn’s as do two of my three children. I’ve had surgery but nothing like you have had to endure.
    Do you follow Sam Cleasby on So BadAss? You remind me of her ….. straight-talking with a sense of humour.
    Take care of yourself, will definitely be looking for your future posts.
    All best wishes

    1. Author

      Thanks so much Sandra!
      I’m going to look up Sam now. I post a fair bit on Facebook and Twitter too if you’re on either of those. I hope you and your kids are well x

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