So fed up of Crohns and everything it takes away from me

[Joonie]

I'm currently sat at home missing a Christmas light switch on with my kids due having a crohns flare for the last couple of weeks, tomorrow I had booked the day off work to go around the Christmas markets with my husband but it unlikely I can go, also I'm unlikely to be able to go to the annual Christmas meal with work as eating meals and drinking alcohol is out if the question at the moment. I'm so fed up of missing out on things because of this stupid disease. I'm in pain, having unpredictable diahorrea, lots of wind and terrible loud stomach noises.
Sorry it sounds like a pity party but I just want to be able to do some things that 'normal' people take for granted, like standing in a field watching Christmas lights being switched on for an hour without fear of having an accident :-(
I don't think I've had a period of true remission (without steroids) and even after steroids the symptoms come back for me fairly quickly.

 

[Riley]

I understand...it's so hard sometimes. I've missed out on so much lately, but it's when I miss out on things with the kids that it really, really bothers me. I highly recommend Humira, it was great for me.

 

[Joonie]

Thanks for replying, that's why I'm so upset today because I don't see why it should stop my kids from doing things too, but I want to be part of it as well. My doc seems to be back tracking on the Humira now, saying it's reserved for most seriously ill patients (I'm in the uk) and my most recent colonoscopy said mild / moderate crohns colitis. Azathioprine doesn't seem to be stopping me from flaring though.

 

[YJ120]

Hi Joonie,

I totally get you! This year I had to cancel my own 30th night out because I was too ill. I've missed lots of fun times and I'm due surgery on Weds because of the crohns so am missing works Christmas party and will be recovering over Xmas and new year so no celebrating for me. I'm just trying to look at it as that after the surgery (or in your case finding the right treatment) at least I can then start enjoying hinges and making up for what I've missed.

Before they did my MRI and decided it's just scar tissue causing my partial blockage they said I'd be starting humira. Azathioprine didn't work for me either. We are quite near each other and my Consultant never mentioned anything about it being saved for seriously ill patients. Unfortunately it's probably about cost, I spoke to a pharmacist about humira and he said it costs about £300-£400 per vial!

Keep pushing they can't leave you ill and make sure they know how much of an impact it's having on your life! I kept stressing that to them, since this got a lot worse from July to now.

Hope things get better for you soon

Yvette

 

[Joonie]

YJ120 - good luck with your operation this week, I really hope its a success !

I know the humira issue is most likely about cost and 'on paper' I don't look that ill, but my current treatments don't seem to be effective in controlling the crohns. My CRP isn't that high, I'm therapeutic on Azathioprine, and last colonoscopy showed mild / moderate patches of inflammation throughout the colon. But my symptoms don't reflect that most of the time, I've lost about 5kg over the last 7 days and I feel virtually housebound.

Thanks for your support - the diahorrea has slowed down a bit over the course of yesterday and seems less 'out of control' today ! (If that makes sense??) I'm definitely going to push for humira in my next appointment as I am not well currently and even on a 'well' day I'm having d on quite a few times throughout the day, which is having a big impact on work and my life outside work.

 

[YJ120]

Thank you I've ended up with a blooming cold now! They'll have to let me know whether they can go ahead or not at my pre op tomoz! Blooming typical!

Good for you keep pushing. It's about getting you on the right med for your body. I really hope they sort it for you it is horrid when it has such an impact on your life

Lol yea I did understand what you meant about the dreaded D!