Hi, my name is jsmith8899! — Scope | Disability forum
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Hi, my name is jsmith8899!

jsmith8899
jsmith8899 Member Posts: 32 Connected
Hi there

Really happy to be signing up to this forum, read a few things people have discussed before for quite a few weeks and thought would be a great idea to become a forum member. Really appreciate the advice when I have read particularly PIP application and assessments problems

I have a number of really complicated health problems both physical and has affected my mental health hugely.

I have (the biggest physical health problem I have that sort of stretches over all the others) is Familial Adenomatous Polyposis essentially causes tumours in the bowel that will at some point become cancerous, rather I dont now have any large bowel left and have an Ileo/J Pouch which is causing some quite horrible problems

Thanks ever so much for reading
Jez

Comments

  • woodbine
    woodbine Community Co-Production Group Posts: 5,596 Disability Gamechanger
    @jsmith8899 hi Jez so glad you decided to sign up you will find lots of help and support here so feel free to take part.
    I am a person with epilepsy not an epileptic, my illness doesn't define me.
  • janer1967
    janer1967 Member Posts: 12,737 Disability Gamechanger
    Hi and welcome 

    Feel free to join in and ask any questions 

    Look forward to seeing you around 
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    Hi @jsmith8899 and a warm welcome to our community.  It can be a bit daunting to take the plunge and make your first post, so go you :)

    I hadn't heard of Familial Adenomatous Polyposis before today and I'm sorry to hear it's causing you problems.  If you don't mind sharing, do you have regular colonoscopies to check your small bowel?  Also, do you have a good gastro team looking after you?

    As the others have said, please jump straight in whenever you like.  Maybe that could be by replying to a thread in our recent discussions or alternatively, a light-hearted natter in our virtual coffee lounge.

    Take care and speak soon.
    Online Community Co-ordinator

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  • jsmith8899
    jsmith8899 Member Posts: 32 Connected
    I dont have anymore colonoscopies as I dont have any large bowel left, had the colon actually removed back in 2000 (what I realised is 3 stages had it all done in) yeah had the colon removed and they left the rectum (Ileo Rectal is what it was I had done then), that lasted about 16 years maybe a few months over, then had the sigmoid and rectum removed more recently back in the very end of 2016.

    I do have though an upper endoscopy done every 2-3 years because of polyps in the duodenum, have had in total 3 checks of the internal of the pouch though (think they're called pouchoscopies) annoying when I have a pouchoscopy done causes usually a bacterial prolapse but end up taking an increased amount of probiotics usually keeps it under control and sorts that problem out

    The person doing the upper endoscopies is the head of Endoscopy at Leeds (Leeds Teaching Hospitals) also the person who did my J Pouch is one of the leading consultants in the country

    Thanks so much
  • 1119082
    1119082 Posts: 258 Member
    Hi Jsmith My name is Masuma
  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    @jsmith8899 That's really insightful, thank you.  I ask because I have Crohn's Disease and undergo colonoscopies every two years to check for polyps/changes.  You've been through a heck of a lot but it sounds like you have the crème de la crème looking after you so that's a positive.  A good medical team makes all the difference.  

    If you need any support with anything on the community please give me a shout, but take care in the mean-time :)
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  • jsmith8899
    jsmith8899 Member Posts: 32 Connected
    @Cher_Scope ah its a pleasure rather always like talking about it, though unfortunately thats not even a quarter of the things I've had either gone wrong at various times or other things I've had to go through, IBD though I mean before the J Pouch did have a few minor problems before the pouch but yeah really respect that its a horrible illness is what comes under IBD

    and thanks ever so much 
  • jsmith8899
    jsmith8899 Member Posts: 32 Connected
    Have to say though the PIP assessment yesterday went impressively well was dreading it was tiresome and gruelling but they said they like to take time to get things exactly right, I didn't feel at all like they were trying to trip me up at all and yeah we'll see when the decision comes back but know what to do if it gets rejected due to the advice on here which I massively thank people for
  • Ross_Scope
    Ross_Scope Posts: 5,377

    Scope community team

    Hello @jsmith8899

    Glad the assessment went well, best of luck with the outcome.
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