HI all .... My Story.

[phill1976]

I was diagnosed with crohns when i was 23, the doctor said i must have had it from my mid teens, i remember being in constant agony every night, every time the doctor was called out and by the time he turned up the pain had gone, he kept saying there was nothing wrong, eventually he sent me for scans and tests, and i was finally diagnosed. I have been taking mesalazine ever since. I have been working 50 hours per week, never really take time off, even when im in agony or running back and forth to the toilet, simply because i can't afford the time off.everyone i speak to claim i can't get DLA because i'm not disabled, yet i've recently read up on it and people can claim DLA because crohns is a chronic (life long ) illness, most of my family tell me to claim it, the only person that says i shouldn't is my dad, i guess it's because he has claimed it for the past 20 years and there's nothing wrong with him.

 

[Dexky]

Hey Phil, you sound like one tough guy to me!! I don't know anything about the British disability system. I just want to say welcome and wish you the best.

 

[phill1976]

thanks mark, lets just say the british system is a joke lol, it really is, the entire british benefits system. anyway thank you

 

[Dexky]

Seems both sides of the pond have got their fair share of problems!!

 

[Astra]

Hi Phil
and welcome fellow Brit

I'm going to Blackpool next week!
IMO Pentasa (mesalazine) is far too mild if you're flaring, this med is a prophylactic, a preventative to maintain remission, no good if you have D or abdo pains.
has your doc mentioned Prednisolone? how about a short course of this steroid? it will stop the D, give you lots of energy, and enable you to work, it blitzes any inflammation that's obviously occuring, and will heal it, Pentasa alone won't do this.
I don't think Crohnies qualify for DLA, especially since you're working, this isn't being disabled, is it? DLA is for people who are totally incapacitated, and need help with toilet issues and night time problems, and are housebound. It comes in 3 catagories, low, medium and high, if you want to claim, you'll have to pack your job in, and go in front of a medical panel and convince them about your disability, it is extremely hard, they are very tough! I know all this, cos my mum went thro it!
hope you get some relief soon
lotsa luv
Joan xxx

 

[Crohn's 35]

:welcome: Phil! You are lucky you are in the milder drugs. I would think trying Entocort or something as a step up. Surgery is sought out to be a last resort but not so much anymore. It depends on one's diesease and where it is.

Hope you get relief soon and glad you are here!

 

[phill1976]

hey joan, i was put on prednisolone when i was first diagnosed, your right it gives you loads of energy, i actually felt and looked much better when i was on it, my doctor took me off it because he said you can get addicted to it, if i remember correctly i was on it for a year or so, then he took me off gradually, but over the past few years my energy levels have dropped, i'm constantly tired, never sleep, i get pain in most of my joints, mainly my hips and knees, have had a cold or flu for over a year, my doctor has now changed since i moved to the south shore area of blackpool and my new doc seems useless, she doesn't seem interested at all.

 

[Astra]

Hiya Phil

yeah, had that with doctors, some of em jumped up little T****
how about some Entocort, a steroid but milder?
but even going back on Pred won't do any harm, as long as you taper slowly off it
it will also help with the joint pains and you'll be able to work easier!
xxxx

 

[phill1976]

i'll give it a go, at this rate i think i'll be phoning in sick at work if i dont sleep tonight, i hate doing that, but the last thing i need at work is running to to the toilet every 5 mins. x

 

[Crohn's 35]

Hey phil, eating applesauce and bananas help the diahreah calm down , there are other things like Questran too but you have to get a script for that. Sleep is so important in this disease. You heal while you sleep and if you arent sleeping you are getting worse. :hang:

 

[phill1976]

i wish i could sleep, i finish work at 1am each night and i'm so tired, but then i go to bed and just cant sleep, i've tried everything to get to sleep, in the past 10 year i think i've slept for a maximum of 2 or 3 hours every other night, my body just doesn't seem to want to turn off x

 

[Astra]

ooooo not good!
ask for some codeine phoshate! this stops D and makes you drowsy, knocks you out at bedtime, no good for during day tho, you cant drive etc.
or some Nytol, its good
xx

 

[phill1976]

i'll take both at the same time if i have too lol, anything is better than not sleeping x

 

[Guest]

hi Phil... just a quickie message because i'm pushed for time - welcome to the forum - and regarding DLA - i am not working due to health issues right now, and i've applied for DLA twice and been knocked back. however i am on Incap.. which isn't all that much but it helps a bit.

i think some Crohn's sufferers can and do qualify for some DLA, but you have to fill in the form really convincingly, and be prepared to appeal if they say no.

 

[Jennjenn]

Welcome

 

[Dallies]

Hello there fellow Brit xxxxxxxxxxxxxxx

 

[Regular Joe]

Hi Phil,

Welcome to the forum. Glad you found us. We are here to help and support you in any way we can.

Joe

 

[DustyKat]

Hi Phil and :welcome:

Good to see you here. It's a great place to hang out and I hope you find some answers to your predicament.

Welcome aboard!

Take care,
Dusty

 

[phill1976]

Started throwing up last night, had bad D for a couple of days, joints still aching, feeling tired all the time, had to call in sick for work this morning, hated doing it, especially when they ask when im gonna be back in and i aint sure, got doctors appointment monday.

Crohn's symptoms 16 years
Diagnosed 2001
Prednisolone to start
Mesalazine 500mg 6 x daily.

 

[Entchen]

Welcome, Phil! I agree that you sound very tough. Nice to have you on the forum.

I know the name Blackpool because my former dance instructors compete in the big ballroom competition there. :mario2:

 

[Gibby87]

Welcome to the forum dude. I feel your pain when it comes to working alot. I work anywhere from 66 to 72 hours a week, and I have a very physically demanding job. I have people telling me to take disability because they see how hard it is for me to move due to my joints and the constant pain I'm in everyday, but I won't do it. I know there are people out there that are worse off than I am and they deserve the disability.

As far as sleeping goes, what's that? Lol. I sleep, but its not restful. And I know how you feel when you miss work, I miss alot of work because it's just simply too hard for me to get up or I'm in too much pain to deal with having to deal with what I'm going through and people at the same time. I just recently started having cold sweats while I'm awake now.

 

[fateful_one]

welcome to the forum