What are my chances of getting PIP for Crohn's disease?

Digestive health
1

I'm currently 17 and studying at college. Just finished my first year and I have a break until September now. During my first year of college I got Crohn's disease and after almost 8 months it was finally officially diagnosed a few weeks ago with a colonoscopy and MRI scan. I had to leave college 7 weeks before everybosy else because my health became so bad that I was no longer able to do basic tasks. Not only was I severely malnourished and fatigued but I had constant bowel problems, incontinence, and the worst of all, multiple perianal abscesses which recurred 3 times which was living hell for me. I'm still in this state now except i've been lucky enough to avoid another abscess for now, I need assistance to get into the bath and out of the bath, I can only walk short distances without my legs aching and i've developed severe anxiety and depression from how much of an impact this disease has made on my life in the space of a year. 

I spoke to my mom about PIP because I know that it means I can get a car fully paid for if I get rewarded the high rate mobility. Since my college is so far away and I used to get the bus with my friends I need a car now, since getting crohns the bus has become a nightmare where i'm in constant fear and pain of having incontinence issues (which has happened twice). Having a car would make my second year at college so much easier, i would truly feel independent and more confident.

I have also heard that PIP is VERY difficult to get and unless your head is hanging off, you're unlikely to get even low rate. Does anybody have experience or knowledge about PIP and Crohn's disease and have there been any changes to the system which helps people suffering from this illness? 

2

Wow! You haven't had the diagnosis for a year yet and you already want to claim benefits?

Do you really think that two occasions of 'incontinence' on the bus justifies being given a free car?

Emmbarrassing? Yes - but not the end of the world...

The symptoms you describe are very typical of Crohn's and you should be able to get them under crontrol once you get established with a Gastroenterologist. It just takes time...

You should be advised how to manage the condition and there is also a wealth of information out there that you can access by contacting the various support groups online.

It will take time to find out which medications work for you but this shouldn't stop you from getting on with your life.

Part of my experience of Crohn's (I was diagnosed in the 1980s) was having a temporary Ileostomy in 2015.

I'm sure most ostomates would agree that there is a learning curve with how to manage leaks when you first have one fitted.

There's nothing worse when you already feel dreadful to find that body fluids have leaked all over you clothes without any warning whatsoever. It becomes second nature to accept that you really should carry some spare clothing (and all the palaver that comes with an ostomy) around with you at all times.

This could be likened to incontinence but with the added problem that you have to try to get the appliance (bag) to stick to skin which is red raw from the leakage - very painful.

After an initial recovery period of follwing the operation, I went back to full time work.

I have a very physical job in a warehouse and I'm no spring chicken (a few days away from turning 50).

As the Ileostomy was temporary I did not qualify for free prescriptions.

During those 11 months I averaged around 8 to 10 prescription items per month.

It was more at the beginning (when I had nurses visiting to dress the wound from the operation) as I had to have all the dressing etc. on prescription as well.

I certainly didn't feel like going to work but still had a mortgage and bills to pay.

If it wasn't for the prescription prepayment service I would have seriously struggled to pay for the items I needed.

In a nutshell I would say that it's unlikely that you would qualify for PPI.

Keep in mind that one your sypmtoms stabilise you should start to feel much better and happier in yourself.

Focus on what you can do - not what you can't.

Don't think of it as the end of the world but as a hurdle to overcome.

I strongly recommend speaking to the IBD nurse at your hospital for information on a local support group who will help you come to terms with the various challenges of Crohn's.

 

3

Hi, I just had my PIP Assessment last week.  I have permanent  ileostomy stoma for 10 years, and I wasn't diagnosed  with Crohn's till I was rushed into hospital I was very ill and anaemic  I have mental problem and learning difficulties. I don't use buses anymore because I am afraid my stoma getting knocked,  my dad takes me too places and appointments. I understand want Jeff is going through. I think Crohn's is terrible disease is up their with cancer.

4

Hi Jeff44238, I say go for it you got nothing to lose and everything to gain.

Thanks Twiglet,

5

Hi, a appreciate your support Crohn's really is awful. I respect that you've suffered a lot longer than me and have also had to have a bag which I haven't yet. Hope all is going well for you

6

Hi, Jeff thank you. Fingers crossed things get a better for you.  I was a bit upset the way Bong replied to your Discussion. 

7

Thanks yeah I found him to be a bit insensitive but some people are best to be ignored