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Colostomy and PIP

oddy7275 Community member Posts: 3 Listener
Hi , I have a colostomy due to cancer , I’ve had the colostomy for 3.5 years now, my PIP ended a month or so ago as it was awarded due to my diagnosis. 
I’m in remission which is great, however , I have applied for pip again due to having a colostomy and other medical problems. I’ve had a kidney transplant 15 years ago, cancer was caused by the meds I take for anti rejection.!  On half the meds now and kidney still ok thanks god.
I have leaks regular during the day and at night , I have a large hernia around the stoma which is unsightly and uncomfortable,  I can’t really bend down due to this. 
I really struggle mentally with bag , I honk I smell , look different, and I stay away from people, I can’t just wear a t shirt in warm weather, I. Have a baggy jumper on or a coat 
PIP , refused my application, I have appealed it , as I disagreed with some of there reasons.
since having a stoma , and the way I have to kneel down at the toilet to empty , I now have bulging discs in my back, and has literally crippled me for 10 days each time they flare up, unable to get out of bed , can’t stand up the pain is un real. 
I have To use a tens machine each morning to ease the pain in my back before I get out of bed for work, 
along with my health issues I really struggle each day, I’ve tried to explain why my average day is , as they seem to think I can get on with life normally! How can they judge my average day ? 
Does anyone receive any sort of PIP for having a colostomy bag and the worry and stress it causes , it has certainly changed my quality of life and how I behave around other people.  It’s been 7 weeks now since I sent my appeal lettter in and images of my stoma and hernia. Do I have any chance of receiving anything ? 


  • calcotti
    calcotti Community member Posts: 10,010 Disability Gamechanger
    edited May 2022
    Your initial PIP award was not made because of your diagnosis - PIP is not awarded based on diagnosis (the only exception is in the basis of terminal illness as defined for DWP purposes).

    Having a colostomy bag will score you 2 points under the toileting descriptor (requires an aid). If for some reason you need help to manage your toileting needs you could score 4.

    To get a standard award of Daily Living you need to score another 6 points under the other descriptors.

    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • poppy123456
    poppy123456 Community member Posts: 57,212 Disability Gamechanger
    PIP isn't awarded based on any diagnosis, it's how those conditions affect you against the 12 PIP activities. For this reason you can't compare anyone else to yourself.
    Sending in pictures as evidence isn't the best to send because once they're added to the system, it's very difficult to view them and it doesn't tell them anything about how your conditions affect you.
    Rather than explain what your average day is, it's better to give a couple of real world incidents of exactly what hapened the last time you attempted that activity for each descriptor that applies to you. Include detailed information of what exactly happened, where you were, did anyone see it and what the consequences were.
    It's also worth remembering that night time, isn't consideration in any of the PIP descriptors. What is considered is how you're affected at least 50% of the time over a 12 month period.
    You mention appeal, is this MR stage or Tribunal? If it's MR stage then decisions can be anything up to 12 weeks, sometimes longer.
    The most likely outcome of the MR is the decision will remain the same/ The current MR success rate is 36%. Though we have had some members that have had the decision changed at this stage.

    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • oddy7275
    oddy7275 Community member Posts: 3 Listener
    It’s at the MR stage.  I understand that I can’t compare with others.
    I tried to explain all the reasons and what happens when incidents occur, this was in the original telephone interview.
    according to there letter in response and they turn the application down, I don’t think they have taken anything I said into account.  I have wrote a letter as well along with images. 
    I think the system needs to change, 12 weeks for a decision is a joke. 
    It’s stressful enough going through the interview process. I a full said to them I felt like they were integrating me with some of there questions. 
    An awful experience to be honest, I’d just rather know what’s happening so I can get on with my life.
    I went though the CAB when first filling out the form, on their opinion, from what I told them , they thought I’d entitled to the lower rate of PIP. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,561 Disability Gamechanger
    Hi @oddy7275 and thanks for reaching out this morning, welcome to the community :) 

    Well done for getting in touch with CAB at the start, that's a really positive step to take. I understand the process can be very stressful indeed, and the long wait to hear decisions doesn't help either, I know I felt very nervous myself. 

    Talking about it with others definitely helps, so I hope the community can be a supportive place for you. Please feel free to have a look around, join in discussions and get to know our members, especially if it helps pass the time.

    You might also like to contact the Scope Helpline by phone or email if you want to run through things with one of our advisers. I can also recommend AdviceLocal, and Turn2Us for support and guidance on challenging PIP decisions.

    You've mentioned you're struggling with a few things, so can I ask if you feel like you're getting enough support day-to-day? 

    Keep us up to date with your MR, and if there's anything further we can do to help, please let us know.

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  • oddy7275
    oddy7275 Community member Posts: 3 Listener
    Life has been a struggle for a long time to be honest, although I am eternally greatfull for my transplant. 
    I was on dialysis for 3 years before I got the call for a transplant. 
    Then in 2019 I ended up with PTLD cancer in 3 places, and caused by the meds for the transplant.
    so along with the fight for cancer, I was also sacred i would loose the transplant .
    up to now it’s going ok. 
    But my life seems as if it’s one thing agate another. I suffered bulging discs in my back last year which again put me in hospital.
    I never know what’s coming next, I was 46 when told I had cancer, I supppose having the colostomy saved my life, but has changed so many things for me.
    confidence has gone, being able to feel comfortable around people is really hard.
    I feel I look abnormal and smell, and it’s difficult getting through each day.
    I was due to to start the reversal process in oct 2020 , for it to be canclled 5 mins before theatre, it would be a 2 stage operation, so that would of been only the start, I’m 50 in 3 months time, just feel my whole life is on hold waiting to try and get back to normal.
    frustrating with all this PIP appeal as well. 
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