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Author Topic: Having a tough time at the moment....positive energy needed!!  (Read 5123 times)
SilverWillow
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« Topic Start: July 27, 2009, 06:03:32 pm »

Hi guys,

I'm going through a pretty rough time at the moment.  I suffer from Crohn's Disease (an inflammatory bowel disease). I was diagnosed three years ago when I was 18 years old, they got it under control and the past couple of years have been ok.  Now i'm going through a flare up which couldn't have come at a worse time!!  I'm a student nurse on my final placement, due to qualify in September, and my bowels are ruining my life!  I've made all the staff on placement aware of my condition but it doesn't take away how embarrassing it is when I have to run to the toilet every two minutes, not to mention the noise coming from my intestines.  Plus I've had to have time off sick which I can't afford and i'm realy stressed about being able to make the time up before September.  I've started to apply for jobs and i'm really worried about how my condition will affect my chances of employment, it's really getting me down!
When i'm not flared up i'm just like anyone else, able to carry out my day to day activities no problem.  It's just the timing of this is so unfortunate.  I have been back to my doctor who has recommenced me on medication which takes three months to start working, i've been taking them for four weeks so i'm still a way to go before I start to feel any benefit. 
My poor boyfriend is taking the brunt of my irritability and I really don't mean to take it out on him.  It doesn't help being on a reducing dose steroid regime which is making my mood swings ten times worse.

Lots of positive and healing energy needed for myself and my poor fella for having to put up with me!

Thanks everyone

Xx
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« Reply #1: July 27, 2009, 06:06:53 pm »



[[[Silverwillow]]] I hope they get your Crohn's back under control soon.
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« Reply #2: July 27, 2009, 08:17:05 pm »

Hi guys,

I'm going through a pretty rough time at the moment.  I suffer from Crohn's Disease (an inflammatory bowel disease). I was diagnosed three years ago when I was 18 years old, they got it under control and the past couple of years have been ok.  Now i'm going through a flare up which couldn't have come at a worse time!!  I'm a student nurse on my final placement, due to qualify in September, and my bowels are ruining my life!  I've made all the staff on placement aware of my condition but it doesn't take away how embarrassing it is when I have to run to the toilet every two minutes, not to mention the noise coming from my intestines.  Plus I've had to have time off sick which I can't afford and i'm realy stressed about being able to make the time up before September.  I've started to apply for jobs and i'm really worried about how my condition will affect my chances of employment, it's really getting me down!
When i'm not flared up i'm just like anyone else, able to carry out my day to day activities no problem.  It's just the timing of this is so unfortunate.  I have been back to my doctor who has recommenced me on medication which takes three months to start working, i've been taking them for four weeks so i'm still a way to go before I start to feel any benefit. 
My poor boyfriend is taking the brunt of my irritability and I really don't mean to take it out on him.  It doesn't help being on a reducing dose steroid regime which is making my mood swings ten times worse.

Lots of positive and healing energy needed for myself and my poor fella for having to put up with me!

Thanks everyone

Xx

I'm sorry about this.  Cry
You are in my prayers and I will send you energy. Smiley
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« Reply #3: July 27, 2009, 08:24:58 pm »


Man, Crohns is the utter suck.

I hope it gets under control soon - and that you can pull everything together!
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Marilyn (ABSENTMINDED)
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« Reply #4: July 27, 2009, 11:18:24 pm »


My husband is a fellow sufferer, and he has flare-ups every couple of years.  Back a while ago, when his flare-ups were every spring and fall, it cost him a few jobs.  To cope, and to cover the holes in his resume, he went to contract work.  Most of the time that means he has to handle his tax and E.I. contributions himself, but eventually it got to where he has a 'stable' of potential employers that he has completed contracts for.  It also meant that he could schedule various surgeries and procedures around his contracts.

I don't know how that would work in nursing - I have a cousin who contracts out, but she is more of a palliative care worker (a regular nurse with specialty training) and she often works in private homes.  She doesn't have any health conditions to work around, but the amount of time she takes between contracts is basically her choice.

My husband's flare-ups are much less frequent these days, mostly due to lifestyle/diet, but they are awful when they happen.  Having witnessed his, both those severe enough for hospitalization and those he bulls through at home, I feel for you.  Chrohn's is NOT FUN.

[[[Silverwillow]]]

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« Reply #5: July 28, 2009, 04:36:46 am »

Thanks everyone for your support and positive thoughts, it means alot Smiley


My husband is a fellow sufferer, and he has flare-ups every couple of years.  Back a while ago, when his flare-ups were every spring and fall, it cost him a few jobs.  To cope, and to cover the holes in his resume, he went to contract work.  Most of the time that means he has to handle his tax and E.I. contributions himself, but eventually it got to where he has a 'stable' of potential employers that he has completed contracts for.  It also meant that he could schedule various surgeries and procedures around his contracts.

I don't know how that would work in nursing - I have a cousin who contracts out, but she is more of a palliative care worker (a regular nurse with specialty training) and she often works in private homes.  She doesn't have any health conditions to work around, but the amount of time she takes between contracts is basically her choice.

My husband's flare-ups are much less frequent these days, mostly due to lifestyle/diet, but they are awful when they happen.  Having witnessed his, both those severe enough for hospitalization and those he bulls through at home, I feel for you.  Chrohn's is NOT FUN.

[[[Silverwillow]]]

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(((Marylin)))  I'm sorry to hear about your husband, you're right it's NOT fun and must be really hard for you to see him suffer when he gets a flare up.  I'm glad they are less frequent these days for him though.  Has he been diagnosed long? 

Your palliative care worker friend's job sounds ideal, if I could find something flexible like that it wouldn't be so bad.  I suppose I could join an agency or do bank work, where you basically just choose which shifts you want to do.  In the short term while I get back on my feet this would be good. I think I'm going to look into that. Once i'm better I need a permanent job because me and my fella want to move in together, but there's no rush I guess.

Thank you

Xx
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« Reply #6: July 28, 2009, 12:59:45 pm »

(((Marylin)))  I'm sorry to hear about your husband, you're right it's NOT fun and must be really hard for you to see him suffer when he gets a flare up.  I'm glad they are less frequent these days for him though.  Has he been diagnosed long?

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.

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That's how the light gets in

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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.

Absent

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.

Xx
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« Reply #8: July 28, 2009, 07:10:22 pm »

it really gets to me when people tell me i've just got upset stomach and that i'm being soft.

That's why my husband wasn't diagnosed until he was twenty.  He ia a Mennonite from a rural area and doctor's weren 't held in high regard.  Through most of his teen years he was treated as if he was trying to get out of working (probably why he is so fanatical about his work rep now).  He would be told to go lay down 'til his 'stomach ache' passed, then get back to the field or the herd.  He's worked through a lot of pain over the years and developed a rather fierce pride.  Be careful of overdoing it for pride's sake.

One thing that helps now is he gets it written into every contract (he's a heavy equipment operator) that if the site doesn't have at least a port-a-potty on the level he's working on he either gets extra breaks or doesn't work on that level.

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« Reply #9: July 29, 2009, 06:19:18 pm »

That's why my husband wasn't diagnosed until he was twenty.  He ia a Mennonite from a rural area and doctor's weren 't held in high regard.  Through most of his teen years he was treated as if he was trying to get out of working (probably why he is so fanatical about his work rep now).  He would be told to go lay down 'til his 'stomach ache' passed, then get back to the field or the herd.  He's worked through a lot of pain over the years and developed a rather fierce pride.  Be careful of overdoing it for pride's sake.

One thing that helps now is he gets it written into every contract (he's a heavy equipment operator) that if the site doesn't have at least a port-a-potty on the level he's working on he either gets extra breaks or doesn't work on that level.

Absent


It's so hard when people don't understand.  I'm sending positive healing thoughts out to your husband and yourself, I really hope the flare ups stay away for him.

Xx
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« Reply #10: August 15, 2009, 05:11:19 pm »



I just saw this. How are things going?  Are you doing any better?
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« Reply #11: August 15, 2009, 07:58:54 pm »


I'm wondering if you could also do home-health care as a contract?  My grandmother's home health aide sometimes contracts another nurse for her vactions, etc.

I hope your systems quickly gets back in control. 
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« Reply #12: August 16, 2009, 04:36:29 pm »

I just saw this. How are things going?  Are you doing any better?

I saw my doctor again and he has given me some anti sickness tablets and some painkillers (codeine).  I'm getting more sleep but my appetite isn't very good.  I'm coping better though, he's increased my steroids back up to 40mg per day, so i've got another 8 weeks of those.  Just a question of waiting for my azathioprine to work then i'll be fine hopefully.  I've been much better this week compared to last week.

Thanks for askin and please keep the positive healing energy coming!!

Job wise I have been offered casual work which suits me at the moment because I can pick and choose my shifts to suit me - perfect!  When i'm better I am hoping for something more permanent though!

       xx
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« Reply #13: August 16, 2009, 04:41:13 pm »

I saw my doctor again and he has given me some anti sickness tablets and some painkillers (codeine).  I'm getting more sleep but my appetite isn't very good.  I'm coping better though, he's increased my steroids back up to 40mg per day, so i've got another 8 weeks of those.  Just a question of waiting for my azathioprine to work then i'll be fine hopefully.  I've been much better this week compared to last week.

Thanks for askin and please keep the positive healing energy coming!!

Job wise I have been offered casual work which suits me at the moment because I can pick and choose my shifts to suit me - perfect!  When i'm better I am hoping for something more permanent though!

       xx
Glad it's going better for you!  Hope the meds work soon and you can feel normal again.
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« Reply #14: August 16, 2009, 04:41:59 pm »

I've been much better this week compared to last week.

Thanks for askin and please keep the positive healing energy coming!!

Job wise I have been offered casual work which suits me at the moment because I can pick and choose my shifts to suit me - perfect!  When i'm better I am hoping for something more permanent though!

It sounds like things have really improved for you!
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