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Author Topic: Having a tough time at the moment....positive energy needed!!  (Read 5793 times)
Senior Apprentice
Last Login:June 27, 2010, 04:00:17 am
United Kingdom United Kingdom

Religion: Mix at the moment! Spiritualist, but always had an interest in Paganism, particularly Wicca
Posts: 45

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« Reply #7: July 28, 2009, 06:33:56 pm »

His diagnosis has gone back and forth between Crohn's and IBD, depending on the doctor and the circumstances.  He isn't on any long-term medications because every flare-up presents as something different, from ulcers to diverticulitis to lesions in various places.  It started when he was a teenager, and he was about 20 when Crohn's was first mentioned.

He hasn't had any major surgeries but a host of minor procedures, usually having to do with scar tissue, lesions, and blockages of various sorts.  Moving to contract work doesn't help with emergency hospitalizations, of course, but it lets him schedule other things for his 'down time'.  And, as I said, his flare-ups have decreased over the years so it's only every couple of years now.  He's in his late thirties.

It can't always be 'managed', so I'm not going to give you any advice about diet and stress, etc., especially since, as a nurse, you've probably done all your own homework.  It will flare up at the most inconvenient and stressful times, and having plans in place for how to cope definitely helps.  Awareness actually seems to decrease the severity in some cases.  DH treats it very matter-of-factly with his employers and has generally gotten understanding and equitable treatment.  It helps that he's very good at his job. Cheesy

We know a lot of other sufferers, who range from not being able to work at all to barely being slowed down by it.  It's like any other permanent condition - recognize that it exists and work around it as much as possible.  Don't apologize or whinge when you have to take time to deal with it, and make your work the rest of the time so good that your employers will simply look forward to getting you back when the flare-up is over.

Easy to say, and easier to do if it wasn't so painful, I know.  There isn't any 'standard' to measure yourself against, or any guaranteed treatment, but it can be worked with.


Thanks for your support Smiley  Sounds like your husband has had a rough time in the past  ((hugs)).

I guess i'm still getting used to having the condition and having to work around it and recognise my limitations during a flare up, as i've only been diagnosed for three years now and so far haven't had any major problems (when I say major I refer to surgery of any kind). 

I miss being myself.  It's just a question of waiting for the azathioprine to kick in, I know it works for me because I've been on it before.  They had to take me off it last year because I got glandular fever and the azathioprine had reduced my white cells so much I wasn't fighting it.  So I'm back on it now under the condition they can test my blood every two weeks.

I just wish more people were aware of what Crohn's is and what it involves, it really gets to me when people tell me i've just got upset stomach and that i'm being soft.


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