Continence/Stoma

Firstly ..... thank you so much for the work that has gone into this site, the information on the main site and also what can be gained from reading through the forum is invaluable ... and is certainly helping to keep me calm after being awarded 0 points following the WCA, I just wished i'd found you prior to beginning the migration form IB to ESA as I naively thought it would be straightforward due to my long standing medical conditions ... how wrong could I be!
I made the big mistake of not sending any supporting evidence in with my ESA50, so am now trying to get it all together ready for the appeal i've applied for.


My question, for anyone who can help, is regarding the following descriptor which appears to be fundamentally flawed (at least it does to me):

6.c. Continence other than enuresis (bed wetting) where the claimant has an artificial stoma appliance.
is unable to affix, remove or empty stoma appliance without receiving physical assistance from another person;
is unable to affix, remove or empty stoma without causing leakage of contents;
where the claimant's artificial stoma relates solely to the evacuation of the bowel has no voluntary control over voiding of bladder;
where the claimant's artificial stoma relates solely to the evacuation of the bowel, at least once a week, loses control of the bladder so that the claimant cannot control full voiding of the bladder; or
where the claimant's artificial stoma relates solely to the evacuation of the bowel, at least once a week fails to control the full voiding of the bladder owing to a severe disorder of mood or behaviour.
This section appears to be flawed as I cannot see the relevance of 3-5 in relation to a colostomy/ileostomy in that these stomas relate solely to the bowel and have nothing to do with the bladder?

Points 1 and 2, these do not cover the problem I have with my ileostomy. After 8 major abdominal surgeries and 2 re-constructions of my abdominal wall, I can have unpredictable leakage from under the bag (appliance) at anytime night/day ... this can occur once every few days or as in recently 4 times in 10 days. Sometimes I am aware fairly quickly and can get somewhere to change the bag, other times its all over my clothes/bedding and then it can be an extremely embarrassing situation. I spend a lot of time at home in my pj's, I try to limit food/drink for a few hours if I know I have to leave the house and I always carry spare clothing and wipes etc. I already have to wear a convex bag and further surgery isn't an option.

I explained this on the ESA50 and I also attempted to explain to the HCP but he didn't appear to either listen or even understand what I was saying ... he just moved onto the next section.

I got 0 points .... it seems to be that if I can change the bag myself and it doesn't leak whilst i'm changing it then there is no way I can get any points for this issue. Is this correct? If so, how can the appeal hearing give me any points which would go towards changing the decision that I don't have limited capability for work? I also have spinal/mobility problems that I was given 0 points for .... but that's another issue

Sorry for the icky details, i'm due to see my stoma nurse this week, hopefully she'll be able to do a factual statement ... problem is, its difficult to prove one way or the other unless it actually occurs during the appeal hearing.

Thanks again to everyone on this site
JIll

what you say

.....................
.... it seems to be that if I can change the bag myself and it doesn't leak whilst i'm changing it then there is no way I can get any points for this issue. Is this correct?
........................

Is correct, IMO to get points and I am no expert I think you would need to be blind and or have something wrong with your hands for example RA
There point of view would be you have a health issue thats treated and so is not a problem

oh just thought of another thing added to original problem that might get you points dementia

IMO no expert ect ect

Thanks Dave 'n Gordon

Looks like i'm even more bewildered than I realised I've got myself so confused haven't I?

I feel so stupid that I didn't even keep a copy of the ESA50 or even remember what it looked like.. you are so right Gordon, it
was the new form and would have asked if I have to wash change clothes .. weekly, monthly or less often.

I put weekly and then described what happens and how I have to deal with it. It actually makes me feel worse now as I obviously wasn't believed.

The statement of reasons I received says 'You do not need to change your clothes because of difficulty controlling your bladder or bowels or using a stoma'

I really can't understand how they can make such a statement other than they think i'm lying

So, am I right in thinking it should make it easier for me to explain to the Appeal board or are they likely to not believe me either? I can show letters from my surgeon showing that i've had this issue for a few years with the colostomy I used to have prior to Sept 10 when I had the ileostomy placed .. the trouble is that I haven't seen the stoma nurse for a few months as I know from my previous experiences that there is little that can be done that i'm not already doing.

I really can't see how they could give me 0 points, not even believing that it happens once a month.

Thanks again .... i'd be making a huge mess of my appeal without you guys.

Jill

Hi Jill.

Have just looked at the new regs (haven't seen the old).

If the new regs apply to you as Gordon suggests, it looks like you meet the support group criteria (LCWRA) because you are having to change clothes weekly due to a leaky device.

Have you seen the ESA the guidelines in the members section? Please check yourself because I am not very familiar with ESA.

Good luck with your appeal - hopefully you will get an early reconsideration.

Best wishes