Tag Archive for: ileostomy

Covid and an ostomy

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After 18 months of avoiding the dreaded Covid, I got a positive LFT test in December, followed by the PCR confirming it. No-one else in the house was testing positive so I was lucky enough to have a spare room in the house to move into, as my daughter is away at uni, there is also a small bathroom and it is on the top floor of the house, so I was able to avoid the family and isolate.

I searched a lot about how Covid could effect my ileostomy and didn’t find too much. I did find ‘An Ostomates experience of Covid19’ on the Coloplast website, so that is worth a look. So I thought I would share my experience, as always this is just my personal experience and Im not medically trained, so if you are concerned about yourself, you should speak to a medical professional.

It started with just feeling a bit off, a high temperature and a bit of a cough, after testing and isolating, I felt a little rough for a couple of days but nothing too bad. Then on day three, I began to vomit and have extremely high output, my temperature was sky high and I felt terrible. I started taking rehydration sachets to combat the vomiting and diarrhoea, but by day 5 it was really tough.

My husband tested positive at this time too, and he was feeling really poorly. We had similar symptoms in some ways, high temp, sweating, feeling hot and then freezing. We both had terrible headaches, were exhausted and sleeping a lot, were breathless and our chests hurt.

But it was the vomiting and high output from my stoma that was the worst. By day 5 I couldn’t eat at all, I was only keeping down sips of water and I had to call 111. I was terrified of being admitted to hospital. Would I end up on a ventilator? Would there be stoma nurses on Covid wards? Would this damage my kidneys again? What if I died? 111 were great and got a GP to call me, he listened to my concerns and prescribed some anti emetic medication to help me stop vomiting and told me to continue to take the rehydration sachets, with orders to call 111 immediately if it got worse, if I passed out, if I stopped peeing.

My lovely friend picked up the medication and dropped it at out doorstep and though it helped with the vomiting, I was still extremely nauseous and my ileostomy bag was just filling with watery bile constantly. On day 7, I had to call 111 again as I couldn’t even keep water down, they gave me some more anti emetics and I was told the next step was hospital. I had also started coughing up grey and green phlegm, which I was told is not a symptom of Covid but of a chest infection, which was probably caused by the Covid, so I was given a high dose of antibiotics.

Woman with an ileostomy and COVID 19 looks thin and poorly

What was so difficult is that my husband was as poorly as I was but without the vomiting. He was bed ridden and his temperature was frighteningly high, had awful headaches and fatigue. So we lay in bed, side by side feeling sorry for ourselves but they do say misery loves company!! So it was actually quite nice to be in it together.

Luckily the vomiting and output slowed down after this, and over the next few days, I started to feel a little more human. It was around 10 days of feeling really ill, and I lost over a stone in that time. I was still very weak and poorly, but once I could eat and drink again, everything became a bit more bearable.

Whenever I am poorly with a cold or infection, my stoma reacts badly and I get bad diarrhoea and so it wasn’t too much of a surprise that Covid caused the same thing for me. But it was a scary time and I am so glad we are over the worst of it now.

All I can say is that if you have any illness that causes your ostomy to act differently, it is worth calling your GP to check in. Dehydration is so often overlooked or thought to not be a big deal, but its huge and it can damage your kidneys and make you incredibly unwell.

The NHS says: You’re at an increased risk of becoming dehydrated if you have an ileostomy because the large intestine, which is either removed or unused if you have an ileostomy, plays an important role in helping absorb water from food waste.

This makes it important to make sure you drink enough fluids to keep your urine a pale yellow colour to prevent complications of dehydration, such as kidney stones and even kidney failure.

Symptoms of dehydration in adults and children include:

  • feeling thirsty
  • dark yellow and strong-smelling pee
  • feeling dizzy or lightheaded
  • feeling tired
  • a dry mouth, lips and eyes
  • peeing little, and fewer than 4 times a day

Dehydration can happen more easily if you have:

  • diabetes
  • vomiting or diarrhoea
  • been in the sun too long (heatstroke)
  • drunk too much alcohol
  • sweated too much after exercising
  • a high temperature of 38C or more
  • been taking medicines that make you pee more (diuretics)

How you can reduce the risk of dehydration

  • Drink fluids when you feel any dehydration symptoms
  • If you find it hard to drink because you feel sick or have been sick, start with small sips and then gradually drink more.
  • You can use a spoon to make it easier for your child to swallow the fluids.
  • You should drink enough during the day so your pee is a pale clear colour
  • Drink more when there’s a higher risk of dehydrating, for example, if you’re vomiting, sweating or you have diarrhoea.

A pharmacist can help with dehydration

If you’re being sick or have diarrhoea and are losing too much fluid, you need to put back the sugar, salts and minerals that your body has lost.

Your pharmacist can recommend oral rehydration sachets. These are powders that you mix with water and then drink.

The other thing I would say was quite difficult with having Covid and an ileostomy is that I also have a ParaStomal Hernia, this is a hernia that sits behind the stoma and I am used to having to support it when coughing. Usually this isn’t a big deal as you don’t cough that often! But when you are constantly coughing, it is important to support the hernia. You can do this by gently pressing and holding the hernia as you cough, you can use your hands or a folded towel or sheet.

I am well on the mend now physically, but mentally it really took a toll on me. I have been having therapy for the past six months for PTSD after my last surgery. One of my big triggers is from when I was wrongly discharged from hospital when my kidneys were failing. I came home and I started vomiting litres of bile and my body started to shut down. The hospital called when they realised their mistake and told my husband to bring me straight back in as I had a stage 3 AKI (Acute Kidney Injury). I was very unwell but thankfully it was a good outcome and I recovered. But the incident made me develop PTSD, I had panic attacks, insomnia and depression. The symptoms of Covid, the vomiting, the dehydration, the panic of whether I would go to hospital or not, it made those past feelings come flooding back and I have had a bad few weeks trying to deal with this relapse into anxiety.

Its been about 6 and a half weeks since I got Covid, and Im happy to say that I am doing much better now physically. But I wanted to just note down my experience and send lots of love to anyone dealing with covid, long covid or the mental health issues around living through a pandemic.

Peace and love

Sam xx

World IBD Day 2021 – I am not broken

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It is World IBD Day today and to celebrate this day, I thought I would write a little about the journey I am on and have been on for so long. After multiple surgeries and when my body is scarred, in pain and struggling, it is easy to feel broken. But I am not broken. I am a survivor.

I am at art college in Sheffield and my practice this year has all been around trauma, especially the medical trauma I have faced. I decided to do a photography project with myself in the frame. I wanted to show a body that may be in the middle of trauma but is also healing, both physically and emotionally.

Sam Cleasby disability activist and blogger sits naked covering her body with her arms, she has an ileostomy bag and is covered in medical tubing

Wrapped in medical tubing, naked and baring my soul, I am defiant, I am fighting, I am a survivor. There are times when I feel so weak and afraid of everything, but this is my anger, my strength, my fight. My stoma and my scars are the war wounds of my life and I will wear them with pride, they are a visual reminder of the battles I have faced and won. Sometimes, it doesn’t feel like a win, but I am still here and every survival is a celebration of life.

My body has changed so much over the years, I am currently the heaviest I have ever been, I have hernias that jut from my belly like melons, I am covered in scars and take so much medication every single day. It wasn’t easy to shoot this, to shed my defence layer of clothes and sit naked and vulnerable. But I am so glad I did, I feel empowered and beautiful.

Today isn’t an easy day, I am in pain and the meds have kicked in meaning my head is fuzzy and my words may be a little jumbled, but I am here.

I am not broken.

I am a survivor.

Happy World IBD Day,

Peace and love

Sam xx

Ostomy bags with a Parastomal Hernia – Aura Profile review

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When I first had my surgery to remove my bowel and form my stoma, I had never even seen an ostomy bag before. The stoma nurse came to see me the night before and brought me a bag to see then after I woke up, I had the bag stuck to me. I went home with more of the same ileostomy bags and honestly I didn’t have a clue that there were any different types of bags. So when my body changed and I first had a parastomal hernia, I didn’t know I needed to get a different ostomy product.

Trying new ostomy products

And I think a lot of ostomates are the same, we stick to the bag we are given in hospital and don’t question or research whether there are other bags and products that would suit us better. Which is weird when you think about it, you wouldn’t just stick to the same hat for the rest of your life just because a shop assistant gave it you and told you it suits you. 

Stoma nurses do a cracking job, they can and do recommend lots of different products if you are having issues. But as with everything with living with a chronic illness, it is important to be your own advocate and do your own research. 

This is especially key if you have a change to your stoma or your body. If you gain or lose a lot of weight or if you develop a parastomal hernia. As you all may know, I have had a lot of hernias over the past seven years, including parastomal hernias. They effect every part of your life, especially the way your ostomy bag fits. I had loads of leaks due to my old bags fitting badly with the change of shape of my body.

woman with a parastomal hernia wearing an aura profile ileostomy bag

Free samples

Do some research and you can get free samples of most products, no one ever told me this! I decided to try the Aura Profile which available in a colostomy bag, ileostomy bag and urostomy bag. If you head over to their website, you can get a free sample here.

The Aura Profile moulds around the profile of your parastomal hernia. The flange is soft, and it inverts on itself. So, it shapes around your hernia and fits really snugly against your stoma. Parastomal hernias can get bigger and smaller throughout the day and totally change shape, this makes it super challenging to deal with and is why I have had so many leaks in the past. But the Aura Profile does a great job at adapting to your tummy size and shape. This also helps if you have dips, folds or scars on your skin around the stoma as the bag moulds to you.

I had quite sore skin around my stoma from the leaks and as we know, bags don’t like to stick to wet, sore skin. But within a week of using the Aura Profile, I noticed a huge improvement to my skin. If I’m honest, I hadn’t read this bit of the leaflet that came in the box (who does??) but I saw that it has Manuka honey in the flange that is really soothing and promotes healthy skin. Absolute bonus!

woman with a parastomal hernia wearing an aura profile ileostomy bag

Aura Profile

I didn’t get the belt to go with the bag and it is a different shaped hole fitting to the belt I already have and it didn’t fit. So I would recommend getting the belt to go with the Aura Profile. I don’t wear a belt all the time, but with having a parastomal hernia, it adds a bit of security that I like.

The flange was nice and sticky and because it is soft, I found it easy to press it down around my stoma to get a nice close seal. It has the measurements and cutting guides printed on the peel off back so was easy to cut to shape and there is a stoma size guide on the box itself too. 

I have one of those blow up hot tubs in the garden and I also do some wild swimming, so I have had chance to wear the Aura Profile in water and it was spot on. No lifting at the edges of the flange and definitely no leaks. When I went swimming, I found my tummy swelled up quite a bit and the bag definitely worked with that change in shape and still fit really well.

man and woman wild swimming

Parastomal hernia

If you have had a change to your body, or if you feel your bag isn’t fitting well right now, I would just remind you that there are so many products out there. You don’t have to struggle on and you shouldn’t. 

I really liked the Aura Profile and would recommend you give it a try, if it doesn’t work for you then don’t give up! Speak to your stoma nurse, chat with other ostomates, do a bit of research and find the best product for you. I would also say that our bodies and stomas can change and just because something didn’t work for you last year, don’t write it off forever. It is always worth trying again if your needs have altered.

It can feel really isolating to have a parastomal hernia. I felt a weird guilt, had I done something wrong? Did I not allow enough recovery time? Was I too impatient? I felt worried that this was my fault and so I didn’t like to talk about it. I know this is silly, that parastomal hernias just happen to some people. But knowing there were products designed just for this issue made me remember that I’m not alone in this.

Sam Cleasby ileostomy blogger review for aura profile

Watch the webinar

I hosted a webinar talking all things parastomal hernias last week. I don’t think parastomal hernias are discussed enough, it certainly wasn’t something I was told before I had surgery and it was a massive shock when I got my first hernia. I hope that events like this will not only inform and support but just rid the taboo and secrecy around hernias and help people to not feel quite so isolated. If you would like to watch a recording of the webinar and also a video from Pilates trainer Jo specifically for people with parastomal hernias, just click here.

I was asked to review the Aura Profile and so this is a sponsored post, but as always, I only give honest reviews and I only work with businesses that I believe in. This is why I don’t do many reviews as it is so important to me that I don’t promote anything that I wouldn’t happily use myself. For more information about the Aura Profile head to the Clinimed website.

You can follow Clinimed on social media on Facebook, Twitter and Instagram here:

Peace and love

Sam xx

Ostomy bag leaks

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It is quite literally shit when your ostomy bag leaks. You are going about your day when all of a sudden you realise that the bag has failed and you have poop dripping down your tummy. Today’s blog is about the dreaded ostomy bag leak.

For anyone who doesn’t know, ostomy bags are bags that stick to the abdomen, they go around a stoma which is a man made hole into your body. Mine is an ileostomy which means a small part of my small intestine comes through my stomach and the bag sticks around it and catches my poo. There is no control over when the poo comes out. Most of the time the bags work well, but occasionally they will fail in some way or another and can leak. I thought I would talk through some of the leaks I have had.

Types of ostomy bag leaks

There are a few different types of leaks in my experience. Do let me know in the comments your leak stories!

The itchy one that you catch before it comes out

I have very little feeling in the nerves on my skin of my tummy due to all the surgeries. But sometimes I get this burning itch that tells me that poop has lifted the sticky flange on my tummy and it is coming to get me. Usually I can see the flange darken underneath and it gives me enough time to run and do a bag change.

The surprise

This is one that comes with zero warning. One minute you are totally fine, the next you wonder why your leg feels wet and you realise you are covered in crap!

The morning bag of farts

I have no butt hole. I can’t fart. But my body still produces gas and that gas comes out of my belly through my stoma and into my bag. Overnight, this gas builds up and the bag swells. Imagine a bag of crisps on an airplane flight and you get my drift. Sometimes the bag can fill up so much that the pressure pulls the sticky flange away from the skin. And the poop doth flow.

The have I or haven’t I?

Sometimes I get the feeling, the itchy, burning feeling that my bag is starting to leak. But then I look and see no signs. It is the have I or haven’t I? You can’t risk it and so do a full bag change, often to find your mind has been playing tricks on you and there is no leak at all.

The poonami

As the name suggests it is a tsunami of poo. You have no idea where it started or how but you look down and the shit is everywhere! It’s in your pants, on your legs, in your bellybutton. It is a horror show. There is no other option than mega shower and probably a little weepy cry.

The annoying gap

The ostomy bags these days are brilliant. But sometimes they just don’t want to stick. Maybe your skin is sore, maybe it’s a bit damp, maybe the gods of stomas are mocking you? Who knows? But it is annoying, you do a bag change and think all is well but the sides are just not sticking. And that poop can find the tiniest crack to sneak out of.

The OMG I didn’t do up the bottom!

I have only done this once. And full disclosure; I was drunk. I had been to empty my bag and just plain forgotten to do back up the velcro bottom afterwards. And you can imagine the result. I also once started to have a leak whilst out on a night out. I was already a bit squiffy and went to the loo to change my bag and accidentally stuck it on upside down so the spout was pointing upwards. Not ideal. And this is why I rarely get drunk any more!!

The stuck in a vicious circle

The poop that comes out of my bag is very acidic and bad for your skin. When it leaks onto the skin, it irritates and burns. This can create big sores on the skin. These sores make the skin like an open wound and are damp. Here’s the kicker, ostomy bags don’t stick to sore, damp skin very well. So it is easy to get stuck in this vicious circle of leaking, getting sore skin and then leaking more because the bags don’t stick to sore skin. And round and round and round you go. It is shit.

The are you freaking kidding me

There are times when the leaks have just been constant. The worst time for me was at Glastonbury and a mixture of heat, sweat, vegan food, booze and who knows what. I went through 16 bags in two days. It was hell…

What can you do?

Though I have named a lot of leaks here, really it is important to know that you shouldn’t be facing leaks all the time. If you are, then you need to speak to a professional, usually a stoma nurse or ostomy company who can help. It is important to figure out WHY you are leaking.

It could be that you need to try and different bag or system. It could be that you have a hernia and it has changed the shape of your tummy. Maybe you have sore skin and that needs to be resolved. You shouldn’t be leaking so much that it is effecting your day to day life, so please don’t just put up with it. Speak to someone and ask for support.

There are so many different products on the market to help. It is important you know this. You have so many different options, have a google and remember you can get free trials of products. But do speak to your stoma nurse about what could be good for you.

It’s ok

I know I am making light of it here, but truly I do understand how utterly soul destroying it can be when you have a bag leak. I have felt embarrassed, humiliated, angry, frustrated, devastated. I have cried, Ive locked myself away, I have vowed to not go out again. I have felt dirty and smelly and wondered how anyone could want to be near me. I get it.

But unfortunately it is a part of my life now. And I refuse to let the occasional bag leak ruin my life. I don’t want a bit of poo to stop me living my best life, to stop me from doing the things I want to do. So I laugh about it, I make a joke, I deal with it and put it behind me. I try to make myself more resilient for the next time it happens.

It’s ok. If you have a bag, you will have faced bigger, badder and darker things in your life than a bit of poo. It is ok and you are ok. You clean that shit up, sort yourself out and carry on being your badass self.

Peace and love

Sam xx

It’s my 6 year no coloniversary! Happy birthday ileostomy!

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Six years ago today, I had my colon removed and my first ileostomy formed! And what a ride it has been since then!!

You can read that first update Timm made after the surgery here, it is weird to read back. We were both so naïve and knew so little compared to now!

ulcerative colitis surgery

What has changed? The 4th ileostomy!

So much has happened since then. I have had 7 more surgeries, a jpouch, a jpouch removed, multiple hernias, fatigue, joint pain, months in hospital, my butt removed and 3 more ileostomies!! I have also gained so much, I started working for Scope and presenting for the BBC. So Bad Ass reached well over 3 MILLION views and had many amazing opportunities. I have worked with Crohns and Colitis Uk on their campaigns. It was amazing to be named as one of the 100 most influential disabled people in the UK. I have spoken at events all over Europe and the UK and met some wonderful people!

Some things haven’t been great. I never knew that first surgery would set me off on a path to 7 more in 6 years. Sometimes, it has felt too much to bear and on more than one occasion I have wondered ‘why me?’ I have seen people I thought loved me leave me. I have felt more alone than ever in my life. Like the burden of my illness was too much for those around me.

Through it all though, the ileostomy bag really did give me a life back. It has given me back control and allowed me to travel the world and actually plan things in with my family. If I could do it again, would I? Well hindsight is a wonderful thing. Maybe if I knew the pain I would face over and over again, I would have been too afraid to go ahead with the surgery. But maybe the outcome would have been very different if I hadn’t had my colon removed. Maybe I wouldn’t still be here, or maybe I would be here but still sat on the toilet 20 times a day in tears?

What advice would you give yourself?

None of us have a crystal ball and we have to roll with the punches and do what feels right at the time. I’m sure I have made mistakes and could have done things differently but today I was thinking about what advice I would give myself back 6 years ago. So here it goes:

It’s ok to be scared/sad/angry. I think 6 years ago I felt like I had to feel grateful for just being alive and that any ‘negative’ feelings were me letting myself and others down. This is rubbish. All emotions are necessary and none should be shunned. You body and your life will be changing a lot and you need to process all these changes. Allow yourself the time to feel what you are feeling.

Speak up – talk to the people closest to you about what is going on physically and mentally. Tell them how you feel and what you need.

There is no right way to ‘cope’ – What works for one person won’t work for the next. Listen to your body, listen to your heart.

Don’t do too much too soon. I know how hard it is to rest up, but you have been through a HUGE surgery! You need to give your body so much time to heal. I have always done too much too soon and I have lived to regret it.

You are a warrior. You have come through a tough surgery and your body looks and feels very different, you have a hard path in front of you, but you are a warrior and you can do this!

Think positively. I know, I know, you just rolled your eyes!! But really, it is easy to slip into negative thinking. There will be positives in your life, no matter how small, and trying to find those silver linings in your day can help so much.

If you could go back in time and give yourself advice back when you were diagnosed or to a point of your illness where it changed, what would it be? If you have an ileostomy, what advice would you have wanted to hear?

Sam xx

Dehydration and your stoma

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As we are having a bit of an Easter heat wave, it’s more important than ever to talk about dehydration with a stoma.

What the NHS say

The NHS says:

Dehydration means your body loses more fluids than you take in. If it isn’t treated it can get worse and become a serious problem.
Symptoms of dehydration in adults and children include:

  • feeling thirsty
  • dark yellow and strong smelling pee
  • feeling dizzy or lightheaded
  • feeling tired
  • dry mouth, lips and eyes
  • peeing little, and fewer than 4 times a day

Its bad news for anyone but if you have an ostomy, it’s far easier to get dehydrated than someone with all their intestines because the large intestine plays an important role in helping absorb water from food waste.

Severe dehydration can be life threatening, and any dehydration with a stoma can make you feel poorly causing tiredness, a feeling of sluggishness and more.  If your output loosens and you find you are emptying your bag more frequently then it’s worth upping your fluid intake.

Dehydration and your stoma

The NHS also say:

With an ileostomy, you will be losing more salt and fluid. This happens because your colon is not being used and therefore is not absorbing extra fluid. You will need to include a teaspoon of salt a day into your diet. Salt is an essential requirement for your body and low levels of sodium (the main ingredient in salt) can affect how well your heart works. Signs of salt depletion are tingling in the fingers.

If you are also a renal patient, you will need to discuss your salt intake in more detail with your Renal Nurse Specialist, as your salt and fluid requirements may be different.

Drink plenty

You will need to drink plenty of fluids to avoid becoming dehydrated. The recommended amount is 2-2.5 litres per day (a minimum of 8 cups per day). If you are becoming dehydrated it can generally make you feel very unwell.

We recommend that you have isotonic drinks, which are higher in salt and sugar. Isotonic fluids are better for you because of the higher sodium (salt) and glucose content. They encourage fluid to be absorbed into your gut, rather than passing straight through into your stoma bag.

These types of drinks include Dioralyte (which you can buy from supermarkets and chemists) and Lucozade Sport or Powerade, or you can make up your own rehydration drink using:
• glucose – 6 flat teaspoons
• salt (sodium chloride) – 1 flat teaspoon
• sodium bicarbonate/citrate – 1⁄2 teaspoon • make up to 1 litre with tap water.
You can flavour this with small amounts of fruit juice.

Tips to avoid dehydration with a stoma

Its so important to keep on top of hydration with a stoma, I would say it’s one of the most important things. The make up of your body has changed and you need to readjust how you look after it. I remember after my first surgery the shock of just how thirsty I was.

My tips would be to have a bottle and sip through the day. I always drink sugar free squash and water as I find water alone goes straight through me. I also take a jug to bed with me as I know I get so thirsty in the night.

Rehydration sachets are not just for when you’re ill! I have them in all the time, I have one in my handbag for emergencies and they’re part of my ostomy kit.

Theyre my go to solution if I feel more tired than usual or if I have loose output, if I have any alcohol, I have one before bed and one in the morning and I highly recommend getting some in! I like the ORS tablets available from chemists and supermarkets.

When the temperature rises either at home or if you’re off on your holidays, then be very mindful of dehydration.

And as always, I can’t give medical advice so if I’m doubt, speak to a medical professional.

✌?& ❤️

Sam xx

Why I’m a proud flasher

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Don’t worry, I don’t have a mac and follow people around at night flashing my boobies. But I am a very proud flasher of my osteomy bag and here’s why…

I have had many comments about the images I share of my ileostomy bag, most of them are positive but I get the occasional one that says ‘why are you doing this? We don’t want to see it! Is nothing private any more? Won’t somebody think of the children?!!!’

OK, I may have made the last one up! But the point is that people do seem offended by the fact that I happily flash my bag, and these comments always seem to come from a person in the position of priviledge who have never had to face the scary event of surgery to remove your bowel and being fitted with a colostomy or ileostomy bag.

ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

So why do I do it?

I remember sitting in a hospital bed, having just been told that I had to have surgery and they were going to remove my entire large intestine and I would have a stoma, they were going to give me an ileostomy bag and I was in tears.  I was terrified, I couldn’t imagine how my life would be afterwards and though I was in part relieved to see an end to the severe and excrutiating pain, diarrhoea, accidents and misery of ulcerative colitis, I was also devastated.

I thought my life would be over, how would I ever feel beautiful or sexy again? What would my husband think of my new body? Would I ever wear a bikini again? Would my new body inspire disgust from others? Would I be able to love myself?  I sat in bed weeping and I felt so lonely.

I googled ostomy bags and it came up with frightening, medical images of sick, old people in bed wearing huge bags on their stomachs looking sad and frail.  And I felt numb.  Was this the end of life as I knew it?  This was in 2013 and there were no UK bloggers talking about this, no one sharing their images of a happy life, no positive, joyful photos, just misery and illness.

stoma ileostomy femininity black and white photography creative shoot #stomaselfie sam cleasby

And that is why I started this blog. And that is why I am proud to flash my bag.

You see, though life can still be tough now, my ostomy bag changed my life for the better in so many ways, it gave me back a sense of control over my body, it made me feel well again, it stopped the pain and the isolation that 9 years of ulcerative colitis had caused.  And once I had the surgery, I realised that rather than fear and sadness, when I looked at my bag and my body I felt pride! I felt strong and powerful, I felt like I had dealt with a huge surgery and my body was still standing.

I realised that I never wanted another person to sit alone, frightened and crying in a hospital bed, wondering what their life would hold for them with a stoma.  I wanted to be the image that came up when they googled that showed them happiness, a fresh start, a normal life, damn it an EXTRAORDINARY life!

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

I wanted to be a small ray of light in an otherwise frightening time that could show someone that life with an ostomy bag is a positive and wonderful thing.  That they could be what they wanted to be with their bag, that it wasn’t something to be feared or disgusted by, but to be proud of.

I wanted to show the world that my ostomy bag saved my life and that I am proud of it and myself.

I wanted to show that I can feel beautiful, sexy, strong, powerful and like ME.

I will never stop flashing my bag because every time I do, I get messages from people thanking me, saying that it helps to see others with a bag, that it inspires them to be proud of their bodies, that even if they don’t want to show their own bag, that they share my images to explain to their friends and family what they have.

ileostomy bag and fashion swimwear

Should everyone flash their bag?

No, of course not! It is a totally private and personal decision, I am happy to flash my bag but that doesn’t mean that everyone should.  I hope that showing my bag off will help those people who want to wear a bikini on a beach to do it with pride, to show them not to be scared of being themselves.  But some people are very private and don’t want to have their ostomy bag on show and their privacy is as important as my desire to flash mine.

sam cleasby chicken keeping allotments kiveton sheffield

The stigma around talking about poo is part of day to day life, generally if we talk about toilet habits, it is done by making fun about it.  We find it hard to have an honest and open conversation about our bowels and that needs to change.  This fear of talking bums stops people from accessing medical help when they have bowel issues, it stops them from asking for help and that can have a hugely negative effect on our health.

The aim of my blog has always been to help others, to stop poo being taboo and to raise awareness of IBD, Crohns, Colitis, Ostomy bags and invisible impairments as a whole.  If I have to continue flashing this scarred body of mine and showing off my ostomy bag to keep the conversation going then I will do this till the day I die.

Sam Cleasby blogger ostomy ileostomy colostomy stoma

I am a flasher and proud!

 

Love Sam xx

PIP – claiming Personal Independence Payments

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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

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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?

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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