Update

[lollypop]

update

hey everyone,thought i would post here too
as ive not been on the forum for the past few months i thought i would pop on and update you all with whats been happening

well....im now off all medcines,not because im better, far from it but since 2010 my body has been full of what seems like every type of toxic drug to which the last drug i took (methotrexate)november 2011, landed me in a&e with a virus/very high blood pressure and on a heart machine.
a few weeks before this happened i was refurred for a second opinion to a guy in st thomas hospital called Dr Anderson who has now taken me under his wing as his patient.
he agreed i came off all drugs for a month or so while he carried out another MRI and colonoscopy,which i have had last week...he briefly spoke to me when i came round out of sedation and explained things are still bad,infact i now have scaring along with lots blood,hes taken biosipes and i await to hear more results!!
since my last post i have now lost more weight and my hair is dramaticly falling out,im now finding it very hard to work as im frecquently having pains and needing the toilet which is causing stress with myself and my boss.
ive contacted crohns helpline for funding if i was to lose my job but i just couldnt live on what they would pay me.
if anyone knows where i can seek help in the uk,that would be appreciated?

 

[Rebecca85]

Sorry to hear you're not doing so well! You could try speaking to the citizen's advice bureau, they have free advice for benefits etc. The direct gov website also has basic information about the different benefits, and the NACC (Crohn's and colitis UK) have guides written specifically for people with IBD.

Off the top of my head, if you lose your job you should be eligible for ESA which is for people too ill to work. Once you are on that, you become eligible for council tax benefit.

Did you get your tube feeding line? If you are being tube fed, you may be able to claim DLA, but I'm not entirely sure.

If you get DLA or have been off sick a lot (claiming SSP) but are still working, you may be entitled to working tax credits (disability element)

If you are on a water meter, you can get your bills capped with WaterSure.

Wasn't that a lot of acronyms!

 

[lollypop]

Sorry to hear you're not doing so well! You could try speaking to the citizen's advice bureau, they have free advice for benefits etc. The direct gov website also has basic information about the different benefits, and the NACC (Crohn's and colitis UK) have guides written specifically for people with IBD.

Off the top of my head, if you lose your job you should be eligible for ESA which is for people too ill to work. Once you are on that, you become eligible for council tax benefit.

Did you get your tube feeding line? If you are being tube fed, you may be able to claim DLA, but I'm not entirely sure.

If you get DLA or have been off sick a lot (claiming SSP) but are still working, you may be entitled to working tax credits (disability element)

Thanks for your reply,NACC was the first place I tried but sadly couldn't pay me enough to live on!:-(
I have taken a lot of SSP in the past year or so but wasn't aware of claiming working tax credits,who would need to contact about it?
Regards my tube line,both hospitals both in Surrey and now the London decided against it due to the fact it apparently has side effects and is a very big op!

 

[Rebecca85]

I think you misunderstood, NACC don't pay you, but they can advise you on how to apply for benefits from the government.

Tax credits come from HMRC, here's a leaflet about the disability element.

Have you considered liquid feeds (enteral nutrition) you can drink them like a milkshake or if you can't stomach them you can have an NG tube which puts the formula directly into your stomach. There's quite a few kids on it at the moment, so maybe the 'parents with kids' subforum would have some information/advice about it.

 

[Josephine]

Good luck and hope you feel better soon.

 

[lollypop]

I think you misunderstood, NACC don't pay you, but they can advise you on how to apply for benefits from the government.

Tax credits come from HMRC, here's a leaflet about the disability element.

Have you considered liquid feeds (enteral nutrition) you can drink them like a milkshake or if you can't stomach them you can have an NG tube which puts the formula directly into your stomach. There's quite a few kids on it at the moment, so maybe the 'parents with kids' subforum would have some information/advice about it.

That's what meant,I contacted NACC and they put me onto a place that could help but wouldn't pay much..I knew what you meant!
Thanks for the link,I will have a read later.
The feeding line I meant is exactly the one they give to kids and the one they didn't want to give to me although when I tried the liquid feeds I threw them back up it tasted that bad!:-(

 

[Rebecca85]

Oh, it's just the NG tube isn't a big operation, it's just a tube up your nose, parents and kids can put it in and take it out themselves! So I thought you had been offered something else like the one into your veins, or through the abdomen into your intestines.

 

[lollypop]

Oh, it's just the NG tube isn't a big operation, it's just a tube up your nose, parents and kids can put it in and take it out themselves! So I thought you had been offered something else like the one into your veins, or through the abdomen into your intestines.

I'm confused now..hehe!!
The one they told me about is the one that they make a small hole and the tube is inserted into your stomach..I thought kids had that?
They never mentioned thro the nose,I'm guessing because of the type of job I do(front of house receptionist)?

 

[Rebecca85]

I think it is possible to only have it at night (hence the taking in/taking out), but you will get pretty hungry during the day! Maybe you ought to ask your doctor why he didn't consider it?

 

[Rebecca85]

Here's a thread about the ups and downs of EN feeding from the parents section. Some of them had problems with vomiting so they have some tips for dealing with it. http://www.crohnsforum.com/showthread.php?t=27610

 

[lollypop]

I think it is possible to only have it at night (hence the taking in/taking out), but you will get pretty hungry during the day! Maybe you ought to ask your doctor why he didn't consider it?

I certainly will,although I've not long been with Dr Anderson in London so untill he had re done all the tests I had done with the hospital in Surrey I'm guessing he wouldn't suggest it yet?
Saying that,being half asleep after my colonocopy last week,he did mention me going back onto macaptapurine but with sickness tablets(the reason I stopped taking the drug last time)!
Btw,thanks for your replys,it's really nice!

 

[Rebecca85]

You're welcome! By the way I have some tips on how to take aza/6mp without getting sick too hope your new doc gets you sorted soon!