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PIP – claiming Personal Independence Payments

PIP (Personal Independence Payments) is a non means tested benefit for working age people aged 16-64 who need help with some of the extra costs caused by long term ill-health or disability.

It is a complicated process that is distressing to lots of people and can be really confusing, I have tried to pull together lots of information here from start to finish, this means it is probably the longest post I have ever done, but I really hope it will be helpful to you.

What is Personal Independence Payment (PIP)?

PIP is a benefit for adults who have difficulty with daily living or with getting around because of a disability or long term health condition. You must be aged 16 to 64 to start a claim. It is not means tested and can be paid to people who are in work or out of work.

You could get between £22 and £141.10 a week by claiming Personal Independence Payment (PIP).  The amount you get depends on how your condition affects you, not the condition itself. You’ll be assessed by a health professional to work out the level of help you can get.

PIP has two parts (components):

1. Daily living component 2. Mobilitycomponent.

You may qualify for either or both parts, depending on how your disability or health condition affects you. Each component has two rates:

  1. Standard rate 2. Enhanced rate.

PIP claims are assessed using a point scoring system. You may be able to score points if you have difficulty with specified activities such as managing toilet needs or incontinence, washing and bathing, or moving around. Entitlement depends on the impact of your health condition, not the condition itself.

PIP is there for the extra costs associated with having a long term illness, Scope research shows that disabled people are, on average, £550 a month worse off than a non disabled person and this money is there to support you with this.  You can claim PIP regardless of if you work or not, lots of people seem to think that it is for those unable to work, and it is but it is also for those in work.

A good place to start is to do a PIP self test – this shows you the markers that they are looking for and gives you an idea of if you fit into them and what you could potentially score.  If you don’t score highly enough but are struggling financially then you can also do an online benefits check to see if you could be entitled to anything else.

You must have a ‘limited ability’ or ‘severely limited ability’ to carry out daily living activities and/or mobility activities. This is assessed using a points-based system and looks at how your disability or health condition(s) affect your ability to cope with daily life and mobility. It’s not enough to be diagnosed with a health condition – you must show that your health condition affects your life in particular ways to qualify for PIP.

You must satisfy the disability conditions for at least three months before you can start getting PIP and you must be likely to continue to satisfy the disability conditions for at least nine months after you claim.  For people with IBD, this is really difficult as you have times of remission and flare up and so proving that you will have the symptoms for the following 9 months is very tough.

If you have an ostomy bag or other complications around your IBD that are more steady and ongoing then this is much easier.

PIP and IBD ostomies ileostomy

The application process

The phone call

To start the claim process you have to phone the DWP on 0800 917 2222, before you call, you need to have to hand your National Insurance number, home address and phone number details, your bank account details plus the names, addresses and phone numbers of any medical professional who can support your claim.  This may be your GP, your consultant, your IBD nurse, your stoma nurse or any other specialists you see.

You also need the names and numbers of anyone who will be helping you fill out your forms, this may be your partner, a friend or your IBD/stoma nurse.

The call takes about 20 minutes and is handled by a call centre operative, they don’t ask you any medical questions but go through the information on their screens and so it does take a while.

If you struggle with communicating on the phone, perhaps due to mental health issues or any accessibility issues, another person can make the call for you, but it would be wise that you prepare all your details in advance and be with them as they make the call.

They ask if they can contact your medical contacts and get your medical history, you don’t have to agree to this, but it is likely this will hinder your case if they can’t get to see your medical needs from a professional.

The forms – PIP2 – How your disability affects you

So next, you should be sent the PIP forms, you should get these within 2-3 weeks, if you hear nothing after this time, you can call to check on the progress and ask for support.  The number for PIP enquiries is 0345 850 3322.

Filling in the forms can be an overwhelming task, I would strongly advise that you don’t try to do it all in one go as it can be very hard going.  Also if you have anyone who can support you in filling them in, then do ask for help.  You could ask a friend or family member, or you could seek professional support from the Citizens Advice Bureau (CAB). Either way, take your time.

Crohns and Colitis UK have produced an amazing document to help you fill in the PIP forms, you can download it here. They say:

“The purpose of the guide is to help people with Inflammatory Bowel Disease (Ulcerative Colitis or Crohn’s Disease) to apply for Personal Independence Payment (PIP). The guide explains who can qualify for PIP and how the application process works, as well as giving information about what you can do to increase your chance of a successful claim.”

The CAB have produced an amazing support document to filling in PIP forms, it goes through each question step by step, explaining in full detail how to answer and what information they need.  For example on question one, it asks you to give details of medical professionals that you see.  It seems simple and you may list your doctors, but the CAB advises this:

You need to give the DWP details of any health professional you’ve seen about your condition.

“Include:

  • doctors, GPs, consultants and nurses
  • counsellors, psychotherapists and occupational therapists
  • people like care workers, support workers, social workers and physiotherapists
  • their contact details – in case the DWP need to know more about your condition
  • the date you last saw them

If you don’t know the exact date you last saw them it’s ok to just give the year.

If you’ve not seen a health professional in the last 3 months it’s a good idea to try and get an appointment with them. This way you can tell them you’re claiming PIP and explain the day-to-day difficulties you have so that they’re up to date if the DWP contact them.”

Question two is about medication, the CAB advises:

“List all the tablets, medications, treatments and therapies you use and any that you’re about to start. This includes anything you pay for yourself (for example, painkillers) as well as anything you’ve been prescribed.

If you’ve got a printed prescription list you can attach this to your claim form – write your name and National Insurance number on it.  You don’t have to record the frequency, dosage and reason you take it.

If you’re not sure whether a tablet, medication, treatment or therapy is relevant, it’s best to include it anyway. If you have medication to help you with side effects from another medication, you should include it. Also, if there’s medication you should take but can’t because of the side effects you have, include it here too.”

I won’t go through all the questions as you can read through yourself on this link but I strongly advise that you use this brilliant tool when filling in the forms. Note everything, don’t assume they will read between the lines (they won’t) and don’t assume that your doctor will explain it.  If you can evidence it, then do so.  Use doctors letters, prescription forms, ask your doctors for letters and evidence of absolutely everything.

Give examples or describe specific incidents where possible. Don’t just say “I am at risk of falls when getting out of the bath.” Instead say something like “Two weeks ago I lost my balance, slipped and fell when getting out of the bath. I hit my hand on the radiator and cut it. I lay there for a few minutes before I could attempt to stand up. Due to the weakness in my arms and legs it then took me several attempts before I managed to get up.”

Don’t be embarrassed to explain in detail the things you struggle with, use clear and concise language, for example “My ostomy bag can leak and has happened X times in the past week, when this happens the faecal matter burns my skin and gets on my clothes, I have to take off the appliance and clean myself, I have to shower and my clothes need to be rinsed and then washed.  Cleaning myself and putting on a new ostomy bag can take up to X minutes and if I have taken medication or am fatigued I need someone to help me by washing my clothes/helping me shower/assisting me”

An important question for us is number 7 – managing toilet needs.

This question is about how your condition makes it difficult for you to:

  • get on and off an unadapted toilet seat
  • clean yourself afterwards
  • if applicable, manage your incontinence

Try not to feel embarrassed, miss out information or put on a brave face. If you do, the DWP won’t get a true picture of how your condition affects you and this can make it harder to get PIP.

PIP and ileostomies

Question 7a

Do you use an aid or appliance to go to the toilet or manage incontinence?

  • Yes
  • No
  • Sometimes

You should probably tick “yes” if:

  • you’re incontinent and have to use aids such as incontinence pads
  • you use an adapted toilet seat or toilet – for example, it has handrails
  • you don’t use a toilet – for example, you use a commode or catheter instead
  • you use an aid either all the time or sometimes

Question 7b

Do you need help from another person to go to the toilet or manage incontinence?

  • Yes
  • No
  • Sometimes

You should probably tick “yes” if:

  • someone helps you (even if it’s just with your aid – for example, dealing with a used portable bidet)
  • someone is around in case you need help
  • someone reminds you to go to the toilet
  • someone explains how to clean yourself properly
  • you need help but don’t get it

It’s important you tell the DWP more by explaining your situation in the box. It’s your chance to give the DWP a true picture of the difficulties you face because of your condition. They’ll use this to decide if you get PIP. You can also use this space to explain what help you need but don’t get.

List all the aids you use:

  • to help you get on and off a toilet seat
  • to clean yourself
  • to manage any incontinence – clearly state if this includes incontinence pads, a temporary or permanent catheter, a colostomy bag, or similar

Never miss any aids off your list because you think it’s obvious and always:

  • explain how they help you
  • explain if you have to use them because you can’t use a toilet
  • make it clear if a health professional advised you to use them
  • include any that would help you if you had them

Make it clear if you need help but don’t get it.

If you do get help, give the relationship of the person to you (for example, carer or friend) and explain:

  • why they help
  • how they help
  • how often they help

Make it clear if you need them to:

  • always help you on and off a toilet seat
  • always help you clean yourself
  • help with just some of your toilet needs
  • be on hand – for example, to help only if needed or to make sure you’re safe
  • remind you to go to the toilet, empty your colostomy bag or wash your hands
  • explain how to use the toilet or clean yourself

Always explain what happens (or would happen) if you don’t get help. For example:

  • you’re more likely to soil yourself
  • you’re more likely to have an accident – for example, you’re epileptic and at risk of a seizure while on the toilet
  • you’re less likely to go out because you might need to go to the toilet

It’s ok to estimate how often you need help but say if you are. If it’s too difficult to estimate – explain why. For example, because your condition fluctuates.

Tell the DWP if you have or are likely to:

  • slip or fall when getting on or off the toilet
  • fall sick or get an infection because you find it hard to clean yourself

Make it clear:

  • why it can happen
  • how often it can happen
  • how you try to prevent it – for example, you rely on a handrail or someone to help you
  • if it’s because someone didn’t help you
  • if it’s because you get confused or have trouble remembering

Tell the DWP if it takes you twice as long as someone without your condition to do any of the following:

  • get on and off an unadapted toilet seat
  • clean yourself
  • wash your hands afterwards

Try to explain how long it takes. It’s ok to estimate but say if you are. If it’s too hard to estimate explain why.

Remember to:

  • include time for breaks if you need them
  • explain if it takes you even longer on a bad day

Explain how you cope managing your toilet needs on both good days and bad and how you manage over a longer period of time (like a week). This gives the DWP a better picture of how you cope most of the time.

Make it clear:

  • if you have good days and bad days
  • how often you have bad days
  • if you have bad days more often than not
  • how your difficulties and any symptoms differ between goods days and bad

Explain if the difficulties you have getting on or off the toilet, cleaning yourself or managing your incontinence cause you any physical or mental symptons. For example, pain, tiredness or stress.

It’s helpful to explain the symptoms and give an example, including:

  • how often you have them
  • how long they last
  • if they’re likely to increase the risk of an accident or you soiling yourself
  • if they affect your ability to carry out any of the other activities on your PIP claim form – for example, you’re so anxious about managing your incontinence that it prevents you from going out

For example “Sarah finds it difficult to manage her toilet needs so she doesn’t eat or drink properly or go out with her friends as much as she used to because she’s anxious about having to go to the toilet.”

Remember that the person who assesses your PIP claim may have very little knowledge of Crohn’s Disease or Ulcerative Colitis. They won’t have any background knowledge of your personal circumstances or history. They probably won’t have access to information about other benefit claims you have made or previous medical assessments. Don’t just tick the tick boxes – write in the larger boxes and describe exactly how your condition affects you.

Don’t worry about repeating yourself on the form. You may need to repeat the same information for different activities. For example, if you suffer from pain on bending this could affect your ability to cope with several different activities such as bathing, wiping yourself clean after using the toilet, and getting dressed. If that is the case you will need to repeat several times that you have pain on bending.

Many people find that it is easier to cope with a health condition or disability by being positive, or by accepting limitations in what they can do. Just for the purposes of the PIP form, you need to focus on your limitations, and whether activities are difficult or painful. For example, you may have grown used to taking your time to get dressed, putting up with pain when you bend over to put on shoes and socks, or having to wear shoes without laces. Talking things through with a friend or relative could help to get a realistic picture and make sure that you don’t leave anything out.

Remember, the PIP assessment is based on whether you are able to complete the activities reliably:

Can you complete each activity safely, or is there a risk that you could injure yourself or make your condition worse by doing it?

Can you complete each activity to an acceptable standard? Or do you have difficulty doing it properly because of your condition?

Can you complete each activity repeatedly (as often as is reasonably required for that particular activity)? Or do you have to rest for a long time after completing the activity?

Can you complete each activity in a timely manner? Or does it take you much longer than it would take a person who didn’t have a disability or health condition?

I know this is a lot to take in and this is why it is important to take your time and get support in filling in the forms.  It may be useful to photocopy the forms before you send them back so you can refer to them for the later stages of application.

Evidence and explaining clearly is key at this point, PLEASE use the resources at CAB and Crohns and Colitis UK, they both talk you through each and every question.

If your condition fluctuates (you have good and bad days) it can be helpful to keep a diary. A diary is a handy way to record your bad days and how they affected you. You could use a diary as evidence as well as use it to help you fill in your PIP claim form. To help you, you can use our template diary. You can also ask someone to help you write it.

Download: template diary to help you keep a record of how your condition affects you [ 78 kb].

The form must be returned within 30 days of the date it was sent out. The DWP will tell you the deadline for returning it. If you miss the deadline for returning the form, your claim will be refused unless you can show that you had good reason for the delay. Illness, mental health problems, or personal factors such as bereavement could count as good reason for returning the form late, depending on your situation.

If you think you will be late returning your form – for example, because you are ill or because you are waiting for an appointment with an adviser – phone the DWP to tell them and ask for an extension. If you have already missed the deadline and are returning the form late, include a covering note or letter to explain why.

PIP help for ulcerative colitis crowns and ileostomy

Next stage – face to face consultation/assessment

You will be invited to a face to face consultation where you’ll be asked questions about your ability to carry out activities and how your condition affects your daily life. The meeting will usually be at an assessment centre, and will take about an hour though you can request an assessment at home.

It’s an opportunity for you to talk about how your condition affects you – it’s not a diagnosis of your condition or a medical examination. Assessments are carried out by a health professional who will write a report and send it to the DWP.

You should be prepared to talk about how your condition affects you even if you’ve already detailed it on your PIP claim form. It can be hard to do this but it will really help if you can talk about:

  • the kind of things you have difficulty with, or can’t do at all – for example, walking up steps without help or remembering to go to appointments
  • how your condition affects you from day to day
  • what a bad day is like for you – for example, ‘On a bad day, I can’t walk at all because my injured leg hurts so much’ or ‘On a bad day, I’m so depressed I can’t concentrate on anything’

It’s a good idea to take a copy of your PIP claim form with you. That way you can refer to it in the assessment and make sure you tell the assessor everything you want them to know about your condition.

Don’t let the assessor rush you and try not to just answer ‘yes’ or ‘no’ to their questions. Always try to explain how doing something would make you feel afterwards and the impact it can have on you if you had to do it repeatedly in a short period of time.

Download the PIP assessment help sheet – to take with you to your assessment [ 97 kb].

Print it out and take it with you. It includes tips on what to take to your assessment and dos and don’ts during the assessment.

The assessor will use the information you gave on your PIP claim form but also draw opinions from what you say and do on the day. For example, they might ask you how you got to the assessment centre. If you say you came on the bus, they’ll make a note that you can travel alone on public transport.

You might also be asked to carry out some physical tasks during the assessment. Don’t feel you have to do things in the assessment that you wouldn’t normally be able to do. If you do them on assessment day, the assessor may think you can always do them. If you’re not comfortable with something – say so.

You can take someone with you as long as they are over 16 and I would recommend this, someone who knows you and your impairment can be really helpful.  If you usually have someone with you when you go out to somewhere new then do take them with you.  They can take notes for you and take part in the discussions.

If you need any adjustments then say so, do you need a lift? Do you get anxious in small spaces? let them know.  You must go to your assessment otherwise your PIP claim will be rejected and you’ll have to start the application process all over again.

You may ask if you can record the assessment, but centres will have rules around this.  If you secretly record your session and they find out, they can end the assessment, your recordings can also be inadmissible in any appeals.

The assessments can feel stressful and overwhelming, you may read about other people’s experiences and feel worried but it is important that you attend.  Be honest and clear about how your disability or illness affects you.

I have applied and been turned down for PIP once (and I am trying again), one of the reasons they turned me down was that I “looked clean and well kempt”, they didnt ask about how difficult it had been to get washed and dressed that morning or about how I would be in bed for the rest of the day afterwards.  Im not saying you should deliberately look dirty but making the effort to look nice for the appointment went against me and next time I will go how I feel that day.

In your assessment, you need to be totally honest, but make sure that you are honest about how you are on a bad day.  Don’t put a brave face on it, be clear about how your illness affects you and your life.  Be aware that there are sometimes cameras outside and in the waiting areas and these may be used in them making their decision.

If you can arrange for somebody to give you a lift to the assessment centre, that is probably the best option. If you travel by public transport or drive yourself, the health professional may draw conclusions about your ability to walk or do other activities. You can also claim travel expenses, ask the receptionist at the assessment centre for a travel expenses claim form and pre-paid self-addressed envelope. Include all your tickets and receipts with the claim form.

On the day of your assessment you may need to get up extra early to eat before leaving the house, or take anti-diarrhoeal medication. It is worth mentioning if you have had to do this. Be clear on what difficulties you may have faced in attending the assessment.

The health professional may begin by asking how you travelled to the assessment centre. They may treat your answer as evidence of your ability to walk or plan a journey, so it’s important to mention any difficulties that you had on the journey. For example, if you had to walk from your home to the bus stop it’s important to mention if the walk was slow or painful. Or you may have needed a lift and been dropped off right outside the centre.

The health professional will ask questions about your health condition(s) or disability and what treatment, therapies or medication you are using. They will ask about how your condition affects your day to day life. They may ask you to describe a typical day. If your condition fluctuates they will ask you to explain more about how it varies.

The health professional will probably ask you about activities which are not directly included in the assessment, such as whether you work, do housework, go shopping, take part in hobbies or look after children or pets. Your answers to these questions may reveal evidence about whether or not you have difficulty with things like bending, walking or using your hands. This can help to show whether you are likely to have difficulty with the other activities included in the assessment. If you have had to give up hobbies or activities you previously enjoyed, or if you can only take part in social and leisure activities occasionally because of your health condition, make sure you explain this.

When answering the health professional’s questions, remember to explain if you have difficulties with performing the relevant activities reliably. Don’t get caught out by leading questions into giving an overly optimistic picture of your abilities. For example, if you have difficulty walking then, in your case, ‘walking the dog’ might involve walking a few metres from a car park to a park bench and then letting the dog run around while you sit and rest. Or perhaps you have to walk to collect your children from school because there is nobody else to do it, but the walk is very slow and painful for you and you have to rest for a long time afterwards. Explain this, and avoid leaving the impression that you can walk a long distance without difficulty if you really can’t.

The health professional may carry out a physical examination or do non-invasive tests such as testing your blood pressure. They may ask you to perform certain tasks or movements, such as raising a leg or bending over. However you should not be forced to do anything which would cause you pain. They won’t ask you to do a formal walking test, but they are likely to observe how you walk from the waiting room to the consultation room and how you move around during the consultation.

Throughout the consultation the health professional will also observe how you cope with activities such as removing your coat, handling your bag and holding a conversation. If you are having a consultation at your home, they will notice the home environment and any aids and adaptations. If they are in your home they shouldn’t look into rooms that they haven’t been invited to enter.

If you bring any written evidence to a face-to-face consultation, the health professional should take a copy of it and take it into account when completing their assessment report.

sam cleasby ibd blogger

Waiting for the response

It can take between six to eight weeks to find out the result of a PIP assessment. However, if you need to find out more about the status of your claim, then the contact info for ongoing claims is 0345 850 3322.

PIP rates

PIP is made up of 2 components (parts) called daily living and mobility, and each can be paid at either a standard or enhanced rate.

Component                                                Weekly rate
Daily living – standard rate                       £55.65
Daily living – enhanced rate                       £83.10
Mobility – standard rate                       £22.00
Mobility – enhanced rate                       £58.00

Appeal

If you are turned down for PIP or if you receive an award lower than you think is correct, you can appeal the DWP’s decision.

Mandatory Reconsideration

The appeal process starts with asking for a Mandatory Reconsideration within 30 days of receiving your decision. You can apply for a reconsideration by writing a letter to the DWP explaining why you disagree with the decision.

You need to give specific reasons why you disagree with the decision. Use your decision letter, statement of reasons and medical assessment report to make a note of each of the statements you disagree with and why. Give facts, examples and medical evidence (if available) to support what you’re saying.

The DWP doesn’t have to make the decision within a specific timescale and sometimes it can take several months to get your decision letter – this letter is called a ‘mandatory reconsideration notice’. You’ll be sent 2 copies – you’ll need to send 1 off if you need to go to the next stage of appeal.

If the DWP changes their decision, you’ll start getting your PIP payment straight away. Your payment for PIP will start from the date of the original decision. If you’re challenging the rate you’ve been put on and the DWP changes the decision, they’ll pay you the difference for the time it takes them to make the decision.

Don’t be put off if they don’t change the decision, not many decisions are overturned at this stage. More decisions are changed after the second stage of the challenge – if your mandatory reconsideration is turned down you can appeal to a tribunal.

Appeal to tribunal

DWP will look at your claim and tell you their new decision.

  • You have a month to ask for an appeal if you are still unhappy.
  • This must be in writing and it’s best to appeal using form SSCS1 (pdf download). Download the pdf of guidance notes to help you.
  • You must state your reason for the appeal clearly and forward any supporting evidence as soon as possible – do not wait for the hearing.

You can download Form SSCS1 (pdf)

Section 5 is where you must state your reasons for your appeal. You must write down the reasons why you think the decision is wrong. Your reasons do not have to be lengthy or written in legal language, but you need to say more than just ‘I disagree’. Explain simply why you think the decision is incorrect and what you believe the correct decision should be.

Send your appeal to HM Courts and Tribunals Service. If you live in England or Wales you should send your appeal to:

HMCTS SSCS Appeals Centre
PO Box 1203
Bradford
BD1 9WP

Telephone: 0300 123 1142

Don’t forget to sign the form and enclose your mandatory reconsideration decision letter.

The latest government statistics show that more than half of PIP decisions are changed after mandatory reconsideration or an appeal to a tribunal, so do challenge the decision if you think it’s wrong.

The DWP will look at their decision again once they have received your appeal. They can revise your award at any point up until the hearing if for example, you send in new evidence.

You will be told the date of the hearing 14 days in advance. You should receive directions to the venue with transport links, accessibility information and also expenses. Review your paper evidence and think about what extra evidence you might need. Attending the hearing and telling the panel about your disability counts as evidence.

You can send in evidence at any point up until the hearing but don’t save it all up for the hearing as this could delay matters.

All papers relating to the appeal will be sent to the panel members before the hearing. This will give them the chance to identify if there are any problems or issues that may affect the hearing from going ahead.

Going to tribunal hearing

Take someone with you. This can be your representative if you managed to find one, could be your partner, a family member or a friend.

The tribunal will be made up of a tribunal judge, a doctor and a disability specialist. All are independent from the Department of Works and Pensions. Their role is to check the DWP’s decision and to ensure that the law has been applied correctly.

This is your chance to talk about how your disability affects you, how you feel you meet the descriptors and anything else that went wrong during the assessment process. Normally tribunals will make a decision on the day and will confirm this in writing but sometimes the decision will be made and then sent to you at a later date.

If you’re unhappy with the decision made by the first-tier tribunal, there is a further appeals process. You can appeal to the Upper Tribunal if you believe there has been an error in law.

This is a very complex area and you will need the help of a solicitor or a welfare benefits specialist. There may be some legal aid available to help you with your case.

I know this has been a long and complex post but it is a long and complex process, I hope it has helped.  Lots of the information here has come from CAB, Crohns and Colitis UK and Scope, so massive thanks to them all for sharing such valuable resources.

For more information please take a look at the following:

CAB – help filling in the PIP forms

Crohns and Colitis UK – PIP

Scope – Appealing a PIP decision

 

Sam xx

Stomach bugs and ileostomies

DON’T WAIT!! That’s my general advice on the subject of stomach bugs and ileostomies, don’t wait to see a doctor. If you’ve been ill for more than a day or so with vomiting/diarrhoea/stomach pain, call the doctor!!!

Obviously I don’t follow my own advice and so I’m kind of writing this to my future self as a reminder to not be a dick. I think I’m superwoman when I get ill, I think I’ll just power through it.  I tend to think that 5 surgeries haven’t toppled me so I’ll be damned if a belly ache will!

Which is stupid.

If you don’t have a colon, it’s best to not fuck about with these things.  We can get very quickly dehydrated which is not something to mess with. What is a bit of a nasty bug for a person with a functioning gastrointestinal tract can be quite devastating for those of us missing parts of the bowel.

On Wednesday I was working in town and feeling a little queasy but ok, then I quite quickly got very hot, very tired and my stomach hurt.  I was in a coffee shop and felt wetness on my legs, I thought I’d knocked my coffee over but looked down and realised that my bag had leaked. It had filled to bursting in minutes and had leaked down the back of the seal.  Not good.

Woman with ostomy bag

Post lunch, Pre bag blow out

So I came home and felt grotty for a couple of days, I had terrible diarrhoea and tummy pain and felt really run down. But still I powered through and managed to work from home.

On Saturday my symptoms seemed to ease a little and so Timm and I went to the cinema, by the end of the day I felt really queasy. I knew it must be bad as I couldn’t even finish my wine!

By Sunday night I was crying in pain, my bag was filling with water around once an hour, anything I drank seemed to go straight through me. I had gotten myself dehydrated and I felt sick as a dog.  I was shaking, hot and felt like I was going to pass out. I thought I was going to need to go to A&E and I was pissed off. I felt stupid for letting it get to this point, my feelings of not wanting to overreact were ending up in more trouble.

Thankfully my stomach calmed enough for me to get some sleep but this morning I knew I needed to see a doctor. I called in sick to work (which I HATE doing) and got an appointment at the GP. One good thing of having an ostomy is that it terrifies the doctor receptionist! One mention of the bag tends to get me straight in!

I saw the doctor this morning who got me straight in for blood tests and a stool sample (another positive of an ostomy bag! Easy access to poop!) and has got me straight onto Cipro antibiotics with strict orders to rehydrate and rest.

I usually use Diaralyte but I’m trying the chemist own brand today along with a strawberry flavoured one called ORS which actually taste really nice so these may be my rehydration go to from now on!

Ciprofloxacin antibiotics

 

I wish I’d gone to see the doctor last week when things weren’t so dire. I’m waiting back on the results he says he’ll rush through now to see if I’ll need any further treatment.  If I end up back in hospital I’m going to be fuming with myself.

Often we are scared to seek medical advice because we don’t want to cause a fuss, we worry that it’s not that big a deal but please if you’re struggling with a stomach bug/stomach flu/gastroenteritis or general vomiting and diarrhoea and you have an ostomy, jpouch, missing bowel, please don’t wait.  Get medical advice as soon as you can.

I’m on bed rest today and hope I’ll feel better soon, till then I’ll snuggle back down with my ridiculously cute Lemmy.  Timm caught us this morning in full on chronic illness cuddle mode…

 

Stomach bug and ostomy

 

Sam xxx

What do you call your stoma?

When I first had a stoma, the nurse told me that lots of people name theirs and it helps them to come to terms with it.  I believe I wanted to tell her to f**k off, though I held my tongue.  I just wasn’t ready to have that conversation.

I am comfortable with my stoma now, but at the time I remember being laid in HDU and not wanting to look down. I just didn’t want to see it or deal with it, it was such a huge ordeal to know that my body had changed so much.  I remember laying in the bed and turning my head to the window, counting the slats of the blinds as they checked my wounds and changed my bag.  I couldn’t look…

When I did, I was shocked.  A stoma (when we are talking about an ileostomy or colostomy) is the end of your bowel that is pulled through your abdomen wall and stitched to the skin.  It looks like a red or pink, wet, soft lump with a hole in the middle.  So it is a big shock when you see your insides on the outside for the first time!

stoma ileostomy femininity #stomaselfie woman with stoma ileostomy ostomy stoma images

But over time, I got used to it quite quickly, I realised it was my life line, that it had saved my life and it was nothing to fear.  It was part of my body and I started to understand that people name their stomas as part of the idea of coming to terms with their new body.  Naming it can feel like you are welcoming it into your life.

I named my stoma Barack Ostoma… I wanted something funny but also quite grand!  I then had jpouch surgery and so Barack left office, as it were.  After 18 months of chronic pouchitis, I had stoma number two.  I only have one stoma now, it is a permanent ileostomy, but in numbers I have had, it is the second one.  This one is called Babadook, due to the weird creaking, farting noises it sometimes makes and the fact that baba and dooky are terms for poo, so it seemed to make sense.

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag stoma

 

So my question is, what, if anything do you call your stoma, and why did you want to name it or why did you choose not to name it.

 

Sam xx

Glastonbury toilets

I was at Glastonbury this year and for once, it was HOT!! The heat was tough but I drank plenty of (non alcoholic) fluids to stop the dreaded dehydration and having a few bag changes as the hot weather didn’t do my ostomy bag much good!

I unfortunately had a crap experience (!) with the toilets, and it was something I shared on my Facebook page, but realised I hadn’t talked about it over here.  I know that not all of you follow my social media and thought I would share it here.

“Tonight my bag suddenly filled fast, we walked away from the stone circle as we were waiting for the fireworks in search of a toilet FAST! You know those bag fills where it suddenly feels like it will pop off?!

We saw an accessible portaloo and a staff member said “this is for disabled people”. I said “yep I know thank you”

He asked if I was staying in ‘disabled camping’ and I said no. He said “you know these toilets aren’t for anyone other than disabled people right?” I said “yes I do, do you want me to tell you what my disability is?”

My husband said “you know that it’s not just wheelchair users don’t you?” My son pointed at the sign on the door that said “‘Not all disabilities are visible” 

glastonbury accessible toilets invisible disabilities

He said “lots of people might try and take advantage!” I said “do you want me to show you?!”

He eventually let me in and it was vile. Shit and piss everywhere, pitch black. I had to ask my husband to come in and hold a torch and I sorted my bag out.

We came out to him complaining to other staff members that people who weren’t in disabled camping shouldn’t be using the loos. I was mortified.

My husband went up and asked if there was a problem, he pointed out the sign and told them I had a disability and just because I wasn’t in a wheelchair didn’t mean I didn’t have extra needs. That we weren’t in disabled camping as he is staff so were in a staff campsite. They said they have to protect the loos from people who just want to use them.

Eventually another staff member said “do you have a colostomy bag?” I said yes ( then wasn’t the time to split hairs!) and he explained that I could speak to someone and get a wristband and also gave me the door code.

I’ve had to speak to a group of 6 people then another 2 to get use a toilet tonight. It’s embarrassing and humiliating. If I’d gone up in a chair and not had a wristband they would not have treated me like that.

And to have a guarded, locked toilet that was so disgusting is ridiculous. Having a larger cubicle does not an accessible toilet make!!! 

glastonbury accessible toilets invisible disabilities

A wheelchair user would have struggled massively to transfer themselves to that loo as it was filled to the brim with shit and the sides were covered in piss and shit. It was so dark in there that I couldn’t see a thing and needed someone to come and hold a torch!

I’ve done festivals for the past 20 years, I know what toilets are like, I’m no princess and totally get that they’re vile. But if you’re guarding and locking a loo and making such a fuss about protection of disabled people, perhaps make that toilet truly accessible. We can and should do MUCH better than this.”

 

I know that I really should have organised myself before, but I can’t help thinking that it really should only take some common sense.  I understand that people have a job to do, but going to an accessible toilet isn’t some kind of luxurious experience that people are going to lie about, surely?

There seems to be an obsession with the checking of disabled people and their toilet habits, so many questions to just go and have a shit and till you have stood with crap running down your legs waiting for another human to decide whether you should be allowed to go to the toilet, then it may be hard to understand just how humiliating, upsetting and degrading it is.

I will never stop shouting about this…

 

Sam xx

Convex Ostomy Bags – for the wonky, uneven, hernia’d or unique ostomy

Do you have an inny or and outie? That’s a normal belly button type question as we know that people are all different (I’m an inny just so you know, but with the amount of surgeries I have had, it is not the one that Mother Nature blessed me with!)

It’s odd as we totally get how unique and different we all are in every other part of our bodies, yet when we get a stoma, we assume that they should all look exactly the same and behave in the same way, when of course, they are all as unique to us as our bellybuttons are.

 

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag

When I got my first parastomal hernia, I began to leak all the time.  My usual bags were just not fitting correctly, and I assumed that I must be doing something wrong.  It was only once I called my stoma nurse and not so bravely wailed down the phone to her, that I even heard of a convex bag.

Usual bags have a flat and soft flange that sticks itself around your stoma and to your stomach, a convex bag has a dome shape to the flange which pushes in around your stoma to make a better seal.  I originally turned to convex after my hernia, but there are a few other reasons you might want to try a convex bag.

After one of my surgeries, I ended up with a recessed stoma, it was kind of sunk in on one side and luckily I knew about the convex bags, so went straight to them.  If you have creases, dips or moats, or find yourself using a ton of paste or rings, you might really benefit from trying a convex bag.

I hear from far too many people saying they live with daily leaks or uncomfortable ostomy bags and it really saddens me.  We aren’t given that much information about the amount of choice we have in our bags, to be honest, I didn’t even know there was more than one brand when I first got mine as I just had what the hospital gave me.

We are super lucky to live in an online world where you can find out so much information, if you have an ostomy, even if you are happy with your current bag, then please go and do some research.  Take a look at ostomy brand websites and check out their full ranges, call them, email them, get samples and try them out.

convex ostomy bag

I tried the Aura Convex bags recently for exactly this reason, I want to keep up with all the latest technology and the newest bags that come out, so I am always sure of what is best for me.  I loved the super soft feel of these bags and the flange felt well stuck on helping with confidence.  Though it is convex, it sat really flat against my tummy meaning it was invisible even under a tight dress, the fit was nice and I had no leaks or issues whilst using them.

So inny or outie, flat, hernia’d, wonky or creased, just remember that you always have a choice with your bags, if you want to try something new, that is your right, speak to your stoma nurse or head direct to ostomy sites and trial your own.

Let me know your experiences of convex bags!

 

Sam xx

 

 

 

This post was sponsored by Clinimed, I occasionally work with companies, but I will only ever give honest reviews and every business I work with are personally trusted by me.  My audience is brilliant and so I only want the best for you guys!

 

Surgery number 5

Like Mambo number 5 but with more general anaesthetic!

So if you follow me on Facebook, twitter and instagram, you may have seen that I have been under the knife again.  I have had two hernias develop since my last op in January and I was on the waiting list to get them fixed by Mr Brown but last week, out of no where, I had a huge, sharp pain in my stomach and my incisional hernia (that runs through my belly button) had popped out and got stuck.

I was sick with the pain and knew immediately that I needed help, I never go to A&E as I hate the waits and the people in the waiting rooms (I know that’s judgemental, sorry!!) But I called Timm from work and asked him to come home and take me to hospital.

incisional hernia with ostomy

I was vomiting with the pain, sweating, crying and a general mess but was seen quite quickly and taken onto a surgical assessment ward where doctors thought I would need surgery as soon as possible.  I stayed in overnight and had a CT scan as they thought that there were loops of bowel stuck through my hernia and were worried they would be damaged.  The scan showed that the hernia was very large and there was fat and tissue stuck through it but luckily no bowel.  I was very relieved as I don’t have that much left, so I can’t risk losing any more!! The other thing it showed though was that my parastomal hernia was worse than imagined and the two were almost joining up with only a centimetre between them, so surgery was the only option.

It was all such a whirlwind, the next thing I knew I was being prepped for surgery, and then I awoke in recovery!  It was a big surgery, almost 5 hours long and a lot more complicated than the doctors had first thought.  They had to open me up and pull in the muscles from the sides, remove the tissue that had been stuck and fix the two hernias with two types of mesh.  One was made from pig skin, so you can officially call me Miss Piggy!

incisional hernia with ostomy surgery

After a few days in hospital, I asked to be discharged home on Monday and have been recovering at home since then.  It has been really painful, a lot more painful than my last hernia op, than in comparison was extremely simple. I feel like a punchbag, I am pretty much bed ridden and really struggling to do much at all.  I am feeling quite emotional and sad about it all, I think it is just the shock of everything happening so quickly, it is taking a bit of time for my head to catch up with the rest of me.

It’s all a bit sudden to be honest and has thrown things up in the air as I am due to start a new job and also because I am about to fly to India in a couple of weeks and so I was in a real panic going to surgery as I had no idea how it would affect these things.  But after talking with Timm, we are on it.  To be honest, it is good timing for the job, I’m not due to start till after my hols and so it means that it is done and dusted before work starts.

Regarding India, it is a bit scary.  If this were just a holiday, I would cancel.  But we are going to our family’s home town where they are honouring my grandfather who passed away this year in a football match and commemoration where we are scattering his ashes.  It is so important to me to attend and so I am fighting through.  Doctors are backing me on this as they understand how much it means and I am under instruction to wear surgical stockings, have daily blood thinning injections and a whole list of other things to keep me healthy.  We are getting a wheelchair to help me whilst we are away and Timm, my mum and the kids are all going to help support me too.

incisional hernia with ostomy surgery staples

So the next couple of weeks is all about rest and healing.  I am doing nothing other than concentrating on my health and getting fit and ready for what I hope is the start of a new chapter in my life.  The past three years have been so difficult, with surgeries, anxiety, illness, fatigue and depression, but now I feel I am turning a new page (ALLLLLL the cliches are coming out now!) and with a surgery to fix all the hernias done, my ileostomy settling in and a new job, I hope life is going to be brighter.

 

Thank you all so much for all your love, support and care

 

You are awesome

 

Sam xx

Clinimed Ostomy Skin Products

Clinimed are a company who supply ostomy bags and accessories and they sent me a goodie bag of products to try out, including medical adhesive remover in spray and wipe form, barrier creams, films and wipes and a carry bag.

I have to say that their carry bag is my favourite one so far, it is compact and has a hanger but the best bit is that it opens into a little shelf meaning when you are changing your bag out and about and inevitably there is no shelf or place to put your supplies, the bag solves that issue.  It also has a little removable mirror which is brilliant because as you may have found, many accessible toilets don’t have a mirror… Perhaps they think people with extra needs don’t want to look at themselves??


 Anyway, on to the products:

Firstly, I tried the Appeel medical adhesive remover.  This sort of product is a really important part of your ostomy kit.  When you are removing your bag without this, it pulls at the skin and can make it very sore, so it is something I use at every single bag change.  I use the spray to remove my bag by applying the liquid from the spray can, the cans are small and easy to fit in your kit and a little pump of the can gives out a lot of the product.

ostomy medical adhesive remover

I sprayed it on the flange of my ostomy bag and gave it a few seconds to get to work before peeling off my bag.  It worked really well and left my skin feeling quite moisturised, some sprays I have used before felt drying to the skin.  I then use the Appeel adhesive remover wipe if there are any residual stickiness around my stoma, this is particularly good for me as I am using a paste around my stoma and if that is still stuck to my skin, it can be tricky and painful to remove.

I also tried the LBF barrier range, this comes in a few different mediums which is good to have the choice as everyone has different preferences.  There’s a barrier film spray, film wipe, foam applicator and a barrier cream that comes in a bottle or sachet.  Barrier creams and films are used to create a protective layer between your skin and any ostomy output that could get on your skin.

The most important thing with ostomy care is looking after your skin.  The output from your stoma is very acidic and can burn the skin, also the act of sticking and removing bags all the time can have a negative effect on the skin.  If your skin gets open sores then it becomes wet, and ostomy bags don’t stick to wet skin, this can cause leaks which then makes the skin even more sore.  It is a vicious circle that is miserable to get out of, and so barrier creams and films are essential.

After you remove your bag and have cleaned your skin, you apply the barrier in whichever form you have chosen, allow it to dry and then apply your ostomy bag.

I prefer the barrier film wipes, I find them really easy to use, and like that I can put it exactly where I need it and then dispose of the wipe in the bag with my used ostomy bag.  The spray works just as well, but for me, I don’t like that it isn’t quite as direct, it sprays across a wider surface rather than dabbing it exactly where I want it with the wipes.  But then I have friends who would much rather use a spray can, you should try both and see what your preference is.

ostomy barrier cream

The barrier cream, in my opinion, is great for people with a jpouch for the dreaded butt burn, it is a light cream that feels nice on the skin and creates a barrier from the delicate skin around your bottom and the acidic waste output that you are passing.  I like it for skin around my stomach too where I have soreness but for around my stoma, it isn’t my favourite medium.  This is because I feel that any cream has to it a certain greasiness and that concerns me with the bag then sticking over the top of that.

You use the cream sparingly and rub it in well, but I found myself waiting a long time to then apply my bag as I was worried that the cream would make the bag stick less well.  For convenience sake, this is why I prefer the wipe.

The LBF barrier wipe dries in seconds, you clean your skin and then rub the wipe on your skin where it could come in contact with output.   It is a sterile product and so you can use it on broken skin and is no sting which is great as when you have open sores, the last thing you want is to put something on that will feel like salt in a wound!

There are lots of different ostomy products about and it can be confusing to know which one will suit you.  I also find that most people end up using the product that is first given to them by the hospital or stoma nurse, sometimes not knowing that they have options.  Everyone has the freedom to choose what sort of supplies they would like to use and a way to do that is to request the free samples from companies.

sam cleasby blogger ostomy ibd disability

If you would like to try any of these products, you can request free samples here or if you aren’t too sure what you’d like to try, you can speak to an advisor.  You can also call them on 0800 036 0100.  I’ve found the staff really friendly and helpful, so don’t worry about any ‘stupid questions’, there aren’t any stupid questions!!! There is tons of really useful information on the site, though if I am honest, it is a little clunky to find, but bear with it as I have just been reading up on more info on dehydration and found it very helpful!

So there we go, another ostomy review.  I love having the opportunity to try new products, but remember that you can try things too.  Don’t be afraid to get in touch with ostomy companies and ask for free samples of their products, there are so many different things out there and you have the ability to try them out.  Your ostomy is here and you have to live with it, but you don’t need to be suffering.  If you are having issues with your stoma, please speak to your stoma nurse and try different products till you find things that suit you.

 

Sam xx

 

Disclaimer: From time to time, I am either sent products for free to review or I am paid to review them.  This sort of work pays for the running of this site and keeps me in Gin and sparkly shoes.  I only work with companies who I feel are a good fit and who have products/events that I feel would benefit my lovely readers.  Whether I receive free products, or I am paid, my reviews are honest and all my own opinion.

Opus Healthcare Ostomy Support Videos

Last year I had a day filming with Opus Healthcare, I have used their products before and was asked if I would help them on a project where they wanted real life people with ostomies and jpouches to talk openly about their lives.  It was a lovely day with three others, Luke, Charlotte and Amanda and it was really interesting for me to hear their stories too.  This was when I still had my jpouch before my latest surgery.

Take a look at the videos below, starting with my introduction.  I need to point out that on filming day, I was so ill with pouchitis, I ended up in hospital for IV antibiotics shortly afterwards so if I look a bit sweaty and manic, you can understand!

And here is Charlotte!

 

Have a look on the youtube channel for the other introductions.

First we talked about diagnosis…

 

And then we talked surgery… 7 out of 10 people with Crohns Disease and 3 out of 10 with Ulcerative Colitis will have some type of surgery in their lives.

 

People with IBD will tend to have an embarrassing story, this can be really isolating, but sharing your story can make you feel better.  We talked embarrassing experiences.

 

But we also have a LOT of positive experiences too…

 

Their are so many different accessories and products out there, it can be a bit confusing.  We talked about knowing about products and how to try new stuff.

 

I genuinely LOVE the Lift Plus 360 adhesive remover (I am not paid to say that!!!) it sprays at any angle and works really quickly.  Here Amanda demonstrates the product.

 

We finished by talking about something that is so important, support.

 

You can find out more about Opus on their website and view all their videos on their YouTube channel.

 

Sam x

 

 

Disclaimer: This is a sponsored post by Opus Healthcare.  Every now and again, I am sponsored by companies who I believe are of interest to my lovely readers, this allows me to continue with the blog and keeps me in pretty, sparkly shoes.  I only work with companies who I believe are a good fit with So Bad Ass and who have content or products that my audience have an interest in.

What to do with a stoma blockage

If you follow me on Facebook and twitter, you may have seen that I have had a blockage in my stomach for the past couple of days.  It started with crampy stomach ache and a realisation that my ileostomy bag had not been filling as it usually does, it was very empty and the stuff coming out was watery and dark.  I was sweating and nauseous and feeling terrible.

I have had this before and recognised the symptoms of a blockage (or bowel obstruction).  This is when something is preventing stool from passing through the intestine in the normal way.  IA Support uses an analogy of a garden hose to help explain what is happening when you have a bowel obstruction.

“If you stand on a garden hose, water cannot pass through it. The tap keeps pumping water into the hose but it cannot get past your shoe. Soon, as the pressure from the tap continues to pump the water, the portion of the hose above your shoe starts to expand and swell up with the backed up water. If you do not remove your shoe, the pressure inside the garden hose will cause it to break open and leak. The same principles apply to your intestine.”

stoma blockage how to relieve symptoms of bowel obstruction

Signs of a blockage can include

  • Swollen stoma
  • Distension of the abdomen
  • Minimal or no stoma output
  • Cramping and pain
  • Nausea and vomiting
  • Muscle cramps
  • Dry mouth, decrease in urination

You can find out more on their site, I knew I didn’t have a full blockage as I was passing some stool but I mentioned it to my stoma nurse who reminded me of how to relieve symptoms at home and so I thought I would share them here. (Via IASupport)

DO

DON’T

  • Stop eating solid foods
  • Increase fluid intake (tea, cola)
  • If the stoma is swollen, remove thepouch and replace it with one with a larger stomal opening
  • Take a laxative or any other medication without consulting a doctor
  • Drink or eat anything if you are vomiting or not passing stool or both
  • Soak in a warm bath to relax the abdominal muscles
  • Massage your abdomen or try a knee-chest position
  • Call your doctor if the pain is severe, or you have symptoms of dehydration, even if the symptoms have not lasted 8 hours
  • Have someone drive you to the doctor or hospital
  • Insert anything inside the stoma unless you have been instructed to do so by your healthcare professional
  • Wait too long to call your doctor

A bowel obstruction or blockage is a serious condition and you should not ignore it as it can sometimes turn into an emergency situation.  Always get in touch with your stoma nurse if you can’t relieve the symptoms or if you are in a lot of pain, passing no stool at all and vomiting.

I am happy to say that my blockage passed at home with me using the above treatment, plenty of fluids, hot tea, heat pads, a bath and gentle tummy massage.  Though now I am left a bit exhausted and drained, I was wondering why but I think it may because I haven’t been absorbing all the vitamins and minerals over the past couple of days.

I know we all like to have a google but just remember that the internet is not the best place for medical advice, speak to your stoma nurse or doctor and listen to your body.

Sam xx

This Morning with Philip and Holly… And So Bad Ass

Yesterday was a whirlwind of awesome! I appeared on ITV’s morning show This Morning and got to meet the very wonderful Philip Schofield and Holly Willoughby and talk about my all time favourite subject, poo!

I was invited on by TV and radio personality Judi Spiers, who along with her husband, invented a product to help people to change ostomy bags.  I reviewed the Riksack for them last month and they had been invited onto the couch for National Bowel Month and asked me to go with them.  Hooray!!

The researchers got in touch and had seen my blog and thought I would be great on TV, which was a huge compliment, almost as exciting as when they told me that Philip had been reading my blog and loved it! Arghhh!!!! So, if you are reading this now Mr Schofield, hiiiiiiii you are a living legend and a total fox!

I got the train down to London the night before after a traumatic decision over what to wear on the telly box.  I asked my awesome followers on Facebook for advice and advise they did… Over 300 of them, though unfortunately all saying different things!! In the end I went for a flowery dress by Lindy Bop which I felt comfortable in and also felt fab in.  Of course, I also wore my sparkly, gold boots.

What do I wear on the telly box?! Excuse my wind swept hair and grey socks! 😂

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I got picked up in a car from my hotel and taken to the studios, hilariously there were some paparazzi hanging out and they got excited as I pulled up.  Unfortunately they were super disappointed when I got out of the car, I still waved and smiled just in case! (HA!)

The staff at This Morning were all lovely, very welcoming and trying to put you at ease, there were drinks and pastries and snacks but I didn’t eat as I didn’t want my stoma farting and bag filling up on live TV.  I went into hair and makeup where I was attended to by #MrFaceMaker and then back to the Green Room I went.

In hair and makeup with #mrfacemaker at #thismorning 🙌🏼

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I filmed a pre recorded piece where I changed my ostomy bag using the Riksack, I was hoping to be the first stoma on live TV but alas, they cut that part out of the live show.  It was a bit odd to change my bag in front of strangers, the team were very sensitive though and made sure it was just a producer and a cameraman.  After changing my bag, I asked the producer what she thought, she admitted that she had been concerned as she was squeamish and was worried that it was going to be difficult to watch, but she was amazed that my stoma was so small and not nearly as terrifying as she had imagined.

This is why I do all the things I do, to change perceptions and break those taboos.

#thismorning

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So we then went onto set (which is much smaller than you imagine and all in one room) and I met the King and Queen of daytime TV, Philip and Holly.  Philip came over and kissed me and welcomed me to the show and I went over to Holly… and curtsied.

WTF? Whyyyyyy would I do a curtsy?? I was just a bit star struck and then I laughed and said “Oh.  I just curtsied” THEN CURTSIED AGAIN!!!

This is why I shouldn’t be allowed out in public.

Anyway, they had a laugh at my weirdness and then we sat on the sofa, I was with Judi and surgeon Mr Ian Daniels and off we went…

The interview went quicker than you think it will, it seemed to be over in a flash and then we were done! I wish I had said more but the slot was about the Riksack product and about signs and symptoms of bowel disease and bowel cancer and so it was important to get that info out.

I loved every minute of it and would love to do more TV as though it is terrifying before, it is so enjoyable once you are there doing it.  It is hard to get a lot of info into a 7 minute slot, especially when there are three people being interviewed it is nigh on impossible to say everything you want.  So apologies for not getting a bit more So Bad Assness out there!

Arrrgghhhhhhhh they were so lovely!!! Hope I did you all proud!!!!

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Holly is as beautiful in real life as she is on TV.  Seriously, I was a bit in awe of her and she was really sweet and lovely.  She was very friendly and complimented my dress and they both congratulated me on this blog and my work in disability.  Philip is a total fox.  I loved him in the early 90s with Gordon the Gopher and can’t believe I got to meet such a famous celeb.  He was really friendly and put you right at ease.  People have asked me to dish some dirt on the two of them, but I cant! They were just lovely!

I am really proud of myself.  The past few years have been hellish and there were times when I was in HDU or crying in pain in bed or leaking and feeling like a monster when I felt so low that I couldn’t imagine going on.  So to be on live TV four months after my last surgery was a HUGE milestone.

I do what I do to make others understand what life with an illness or disability is like, I do it to break taboos, to educate, inform, support and inspire.  I do it to make a difference.  I do it because I need a reason that I have had to go through all this.

#thismorning

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I didn’t plan for my life to be a series of battles, of medication, surgery, illness, pain and suffering.  But this is the hand I was dealt and so I will use every single one of these things to help others and make a difference in the world.

You can view the interview below, thanks for all the lovely messages on Facebook and Twitter, they mean everything.

Sam xx