Colectomy/Ileostomy-what if anything am i entitled to???

barny1705

I HAD Ulcerative Colitis and long story short have just had my colon removed as none of the drugs worked and my colon was in a pretty sorry state.
I have just found out that i am now exempt from paying prescription charges, which is great i must have spent hundreds the last few months! I was just wondering if there was anything else i could now get?! Someone said to me i can get reduced water rates too...???!! How do you find out about these things, no one actually seems to tell you!
Thank you in advance, Barney.:beer:

Kavanne

A family member of mine gets incapacity benefit... They called her in for a medical, she phoned them, told them what she had and they said nevermind coming in, the benefit will continue!

meltdown_point

barny1705 wrote: »

I HAD Ulcerative Colitis and long story short have just had my colon removed as none of the drugs worked and my colon was in a pretty sorry state.
I have just found out that i am now exempt from paying prescription charges, which is great i must have spent hundreds the last few months! I was just wondering if there was anything else i could now get?! Someone said to me i can get reduced water rates too...???!! How do you find out about these things, no one actually seems to tell you!
Thank you in advance, Barney.:beer:

Okay....you should be able to get a reduction in water rates, council tax, and a blue badge from either dvla or your council. Some councils offer a chipped key for you to use disabled public toilets. Its a horrible thing to cope with....((Hugs)) please watch out for diabetes......as that can happen unexpectedly......Have you applied for DLA? please do as it can help you with your care needs....changing bags....burst bags....skin irratation/breakdown (which happens very often) Put in for a community care grant for a washing machine and extra spare bedding!!

meltdown_point

Oh and some councils provide a toxic waste scheme for empty bags etc.....may be worth your while giving them a ring on monday:) speak to your stoma care nurse and attend their group meetings as they can be VERY insightful also sign up for stomauk magazine I promise the articles are fantastic and informative!!
Take care xx

Indie_Kid

meltdown_point wrote: »

Some councils offer a chipped key for you to use disabled public toilets.

You can buy these keys from the radar website too - http://www.radar.org.uk/radarwebsite/

There is something about VAT relief for adapted products.

With disability/sickness benefits, it's based on needs and not the name of the condition.

Because you're exempt from prescription charges, it's meant for everything and not just stuff related to your disability. IE, if you have a chest infection, you'll get all that stuff free too.

meltdown_point

sh1305 wrote: »

You can buy these keys from the radar website too - / OP shouldnt have to "buy" them, they have a problem with toileting and when that bag fills fast they need to empty it pronto!!

There is something about VAT relief for adapted products.OP should have a chat to their Stoma nurse...who in turn could make a referral to Occupational Therapy who can help with grants for adaptions....Ie OP may need a downstairs toliet in his home!

With disability/sickness benefits, it's based on needs and not the name of the condition. Agreed but having a bag attached to your stomach carrying toxic waste (that burns when in contact with the skin) Op needs to be careful....also has to and correct me if im wrong here kneel down on the ground to prevent spillages and empty it correctly. OP is left with a fistula opening lots of grounds there for application for DLA if infection sets in it can render OP in much pain for days even weeks..Blockages are common with bags and sometimes the opening needs flushed out OP will need help doing this....or someone to be there to take them to the hospital!!

Because you're exempt from prescription charges, it's meant for everything and not just stuff related to your disability. IE, if you have a chest infection, you'll get all that stuff free too. Also True

Stomas are not easy.....either to have or manage, OP has their colon removed, there may:rolleyes: be further surgeries involved down the line ie getting the bowel removed because the stump still produces an acid to aid digestion and defacation when its not needed...this can cause OP to be in considerable pain and bleed from their anus which can come out like clots.....hopefully this doesnt happen to OP but as i said before OP has a fistula opening/wound....this leaves them prone to numerous things and care issues and mobility issues DLA application is valid;)

skipsmum

Hiya,
DH had a stoma bag for a few years (after an RTA) and he was able to claim incapacity for a while. When he went back to work he got disabled persons tax credit (and still does on account of needing loos provided wherever he is contracting). He also had a radar key for public loos. We didnt know about the water rates then but we know people now who get a discount. He didnt qualify for dla because he was self caring, but its worth you applying as it does apparently depend on how you fill in the forms. I suggest you get help with this, someone on the forum will be able to advise you where to go.
DS2 has crohns disease and gets DLA but he also has juvenile arthritis and I think its more for that.
btw, we were given the radar key by the stoma nurse.
Best wishes with it all, please make sure you get help filling in the forms as most people feel it makes a difference how you fill them in.

meltdown_point

skipsmum wrote: »

Hiya,
DH had a stoma bag for a few years (after an RTA) and he was able to claim incapacity for a while. When he went back to work he got disabled persons tax credit (and still does on account of needing loos provided wherever he is contracting). He also had a radar key for public loos. We didnt know about the water rates then but we know people now who get a discount. He didnt qualify for dla thats shocking!! because he was self caring,what happened if he got a blockage? infection...... its an open wound:eek: but its worth you applying as it does apparently depend on how you fill in the formsAgree with this wholeheartedly!!. I suggest you get help with this, someone on the forum will be able to advise you where to go.
DS2 has crohns disease and gets DLA but he also has juvenile arthritis and I think its more for that.
btw, we were given the radar key by the stoma nurse.
Best wishes with it all, please make sure you get help filling in the forms as most people feel it makes a difference how you fill them in.

You and yours have been through the mill, and your on here sharing your experiences massive ((hugs)). Well done:T

I hope your DS gets some relief soon!!

GlasweJen

For life is an old term, the correct term is "indefinate award" which means that your other half's award doesn't have a renewal date but can be picked at random to fill out a new set of DLA forms to ensure the award is correct. Any changes of circumstances still have to be reported.

clarissa

Hi Barney,

I have had an ileostomy for just over 3 years after having appendix cancer and having all my non-essential abdo organs removed. You are entitled to free prescriptions once the ileostomy is classed as permanent (took 12 months for the descision to be made so I got an annual payment card for the first year).

I got a Radar key free from my stoma nurse. I've not used disabled toilets that often because of the comments from others because I don't look disabled!

I received indefinate old sickness benefit (can't remember the name) with no need for a medical. But was back to work 3 1/2 months after my last op, with a phased return. I have my own toilet at work (although do share with anyone else who wants to use it!) mainly because I hadn't built up confidence. I've kept it on because I know the floor is clean and everything is where I need it to make emptying and changing easier and there is a wash basin in arms length.

Although it's not wonderful I haven't found my ileostomy a huge disability. I don't have many leaking bags, if it was becoming a problem I'd contact my stoma nurse to sort the problem out with me.

I do receieve HRM DLA, but that is for cardiomyopathy which prevents me walking any distance, not for the cancer or stoma, although they may have been taken into consideration. As far as I'm aware unless you have horrendous problems with a stoma then unless it's combined with other disabilities then it's doubtful it would qualify for DLA.

Have you had a look on the Ileostomy Association website http://www.iasupport.org/forum/default.asp?C=1 I have found it very supportive and there is loads of advice on what you may be entitled to.

Lisa