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Why is pain not taken seriously in hospital?

There’s 6 days to go before my surgery and I’m terrified. But you know what sucks? That the thing I’m most scared about is being left in pain on the wards after surgery. It’s 2019 and I’m not afraid of the surgery but that I won’t be given pain relief. How is this OK?

On three occasions now I have been left in agony on the wards after having major operations. Usually in the day after the epidural is taken down. The pain relief is not adequate or more likely not given at the right times by nurses.

What is happening with the NHS and pain?

You know that I love the NHS, I feel so lucky and blessed to have free at the point of use medical care. It’s something we should be protecting but something is going majorly wrong here.

I have been left multiple times sobbing and crying in agony on wards. Just begging nurses to please get me some pain relief. Ive had nurses ignore buzzers, walk right by me whilst I’m writhing and hysterically crying.

I tried to discharge myself from hospital after my last operation just 3 days post surgery because the care was so dire.

Why is it that weekend wards seem to include some terrible nurses on the teams? Of course not all nurses, but I’ve found in each of the 7 previous surgeries that the care goes massively downhill at weekends.

Pressing the nurse buzzer in hospital pain relief

Despite putting plans in place last time and seeing a specialised pain team before they took down my epidural and warning them of my fears that I wouldn’t have adequate pain relief and having my husband there as an advocate writing everything down. But the following day the nurse seemed reluctant to give me the pain relief. She said she’d be back and left me for well over an hour sobbing. She kept walking past my bed and pretending she couldn’t see me.

And others tell me the same story, that their pain is not taken seriously. That nurses especially on weekends are either extremely late in giving pain relief or make excuses and they are left in agony.

So why is it that our pain isn’t taken seriously in hospital?

How is it that my biggest fear of a major op is that pain medication will be withheld? I’m so frightened of this happening that it makes me not want to go in for the surgery.

I spoke to the Pre op nurse about this, her advice? Kick up a fuss. Don’t be a “good quiet patient”. Demand to see the ward matron and if nurses won’t do that then phone the switchboard. Ask to be put through to the ward matron and tell them the bay and bed you are in and that the nurses are not giving you adequate pain relief. Then call PALS and put in a formal complaint.

Honestly this doesn’t sit well with me, I hate to be a bother. I know that the majority of nurses are so hard working, passionate and brilliant. I know they’re under paid and over worked. But there are a few rotten apples who are ruining it for everyone.

Being a “good patient”

There are many reasons that patients don’t complain. From a lack of knowledge to inability due to physical or mental health . Also a fear of how your complaint will affect your future care and wanting to be a “good patient”.

But being a “good patient” is not about sitting in pain because you don’t want to bother the nurses. Being a good patient is about being a responsible participant in your own health. I read a book that said that “good patients” die more than people who are active in their health and recovery. Struggling in pain worsens your recovery and outcome and so we should be ensuring we have proper care.

But if a confident and outspoken person like me has been failed with pain relief and post op care then how many others without a voice are there? How many older people who don’t want to cause a scene are laid in pain? How many people too anxious to press their buzzer more than once?

What can we do about pain?

When you’re in hospital after surgery you are at your weakest, you have little or no control and are completely vulnerable. Yet we are being let down.

This issue has given me panic attacks, I’ve had to write this in a few sittings as my hands are shaking and I can’t breathe when I think about my surgery next week. When I think about it, I’m taken back to the pain, the tears, the begging. I’m taken back to a vicious old bitch of a nurse walking past me several times. To her rolling her eyes as I cried in pain and finally stabbing me hard in the arm with the morphine jab. To phoning Timm and begging him to discharge me as I had no trust in the nurse now. And I’m terrified it’s going to happen again.

Timm did come last time, he demanded to see the matron and get some answers as to why we’d seen the pain team that morning and had a plan in place and why it was ignored. He got me moved to a new ward and a promise that nurse wouldn’t come near me.

He has said he will be there this time and make sure it’s all ok and I have a back up plan.

But it shouldn’t come to this when all we are talking about is some painkillers.

And I still can’t answer the question of why our pain isn’t taken seriously.

✌🏽& ❤️

Sam

A day in my life

I thought I’d give you a glimpse into a day in my life when I’m presenting on the radio for the BBC.

If you don’t know me, I have an ileostomy because of Ulcerative Colitis and two hernias, I’m awaiting surgery to repair these and it’s going to be my 8th operation.

I’m struggling a lot with pain and fatigue and so it’s tough to be working right now but I’m plodding through and I love being on the radio so much! I talk about managing fatigue, counting spoons and weighing up whether I can take painkillers or drive a car.

You can watch a day in my life here.

You can find my usual weekly show Nowt So Strange As Folk here and the show I covered here.

Enjoy!

Sam x

Living with chronic pain

I hope you’ve all had a lovely Christmas, it’s been a pretty quiet one in the Cleasby household which has suited us just fine. We’ve had a few visitors but it’s been mainly just the five of us and lots of chilled days watching movies, playing games, eating cheese and ham and family time, so all in all it’s been a good one!

I was unwell on Christmas Day, I do t know whether it was a tummy bug or something I’d eaten, but I was up almost all Christmas Eve on the loo and spent the day very tired, poorly and done in. But as we had a quiet day at home planned, it didn’t really ruin anything. I couldn’t eat and spent most of the day laid on the sofa, but I had Timm and the kids with me so it was still a nice day.

Christmas Chronic Illness

And it got me thinking about how whenyou have a chronic illness, you really learn to live with an almost constant feeling of being unwell. I find it hard to explain to people how I have been in pain every day for the past six months, every single day.

I take two types of strong painkillers every day just to get through the day. And living with that sort of pain then becomes the norm. It’s a really shit norm, but it is the life I have.

I have two hernias, one parastomal hernia behind my stoma and one incisional hernia at a previous surgery site. They open up and my insides push outwards any time I’m not laying flat on my back and they hurt! The pressure is a constant dragging pain and then there’s also sharp pains as they go in and out.

I also have a 6.5cm cyst on my ovary and just found out that my Fallopian tube is also inflamed, swollen and filled with fluid. These hurt too, it’s a gnawing, aching pain in my groin all the time. My stomach is so swollen that I look 6 months pregnant, everything is so tender.

Due to the 7 surgeries in the past 5 years, I have a crazy amount of adhesions, basically all my insides are stuck together now, I have so many bits of mesh and pig skin holding my stomach muscles together that everything twangs and aches and stabs.

And I’ll be honest, it’s getting me down.

I haven’t walked my dogs for months. I’m in agony for days if I try to do anything more than sitting. We went to the cinema and shopping on Boxing Day and I spent 2 days recovering. I have to hire mobility scooters to go to shopping centres as I can’t walk far without feeling like my insides are going to burst out of my stomach Alien style.

But what I find really hard is that it’s so tough to explain it. I am waiting a surgery date but doctors feel that if I’m taking painkillers everyday that I’m ok to wait. And because I try my damnedest to keep on doing normal stuff, I can understand that people think I’m ok.

But im so fed up, I’m so tired of it all. I wake up every day knowing that the minute I get out of bed, the pain will start and though I’m stoned off my tits on codiene and nefapam through the day, it’s a constant thing.

If I really want to do something, I forego the pain relief so I’m not dozy and sleepy but that means the pain is even worse. It’s a constant balancing act of whether I take drugs and lay still or try and have somewhat of a normal life and do it in pain.

I know this is a pretty miserable post but I really wanted to try and explain what life is like when you live in pain every day.

Not many people can understand it, but think about a time when you were in pain, maybe you had a knee sprain or a horrid ear infection, perhaps you had an awful stomach bug, now try and think about how you’d feel if there was no end in sight to that pain, if that pain was your normal base level every day.

If im grumpy, absent minded, blank or ignore you or your texts or phone calls, please know it’s not personal. If we chat and I can’t remember the word I’m trying to use or just plain forget what I’m saying, know I’m really trying my best. If I cancel on our plans or just wont commit to them in the first place, know that it’s not that I don’t want to, it’s just too much to cope with right now.

Please just know that I’m trying my best

✌🏽& ❤️

Sam x

Bad days. And good!

I’m not having a great day today, I’ve had a stinking cold for a couple of weeks and I think my immune system has taken a battering and so I have been up a lot in the nights going to the loo. 

I woke this morning and my joints are absolutely agony.  My body is feeling broken and very, very old. I have been ignoring and trooping through for a while but today it is time to listen to my body and stop.  Today is about laying on the sofa and watching terrible day time TV.  My body is speaking and I am listening. 

I am pretty stressed at the minute and I don’t think that has helped.  Our car broke a month ago and we’ve been trying to get it sorted, it turns out it’s not worth spending the money on and so we have to buy a new one.  It’s money we could really do without spending/losing now.  Our rental house is going on the market at the start of next year and so we are house hunting.  Our work load has been HUGE over the summer and we are playing catch up.  And family stress of close relatives taking umbrage with something I have done (I have no idea what!) means I’m being deleted and blocked on Facebook and talked about behind my back. Part of me wishes they would just speak to me and tell me what’s wrong. The other part thinks I just don’t need the stress. 

I thought I would share this on here as it is how I have always dealt with my illness for the past two years. But then I thought about how I have been a little quiet of late on here about my health. And the reason for that is because it has all been loads better!  With a balance of meds, probiotics, diet and exercise things have been great and I haven’t had much to report. 

It made me think about how sometimes ostomies and jpouches have a bad reputation because we only talk about them when experiencing problems.  It made me want to try harder to write about all the positive things that have happened to my body since getting surgery, about how much better life is. 

And so I will try to remember to write about the good days as much as the bad days. 

Just not today as my hands and wrists have had enough. 
Sam x 

Woah! Eventful Friday night!

It’s all gone a bit dramatic here tonight, it started with a total bag blow out.

One minute I was cooking dinner with Timm, the next I heard a popping noise and felt a huge whoosh as the contents of my bag spectacularly emptied out down my legs and into the kitchen floor.

With an ‘oh shit’ from me, the husband realised what was happening and we both leapt into action. Well for me it was more of a legs together weird shuffle to the bathroom whilst Timm followed with my supplies and then he went to clean up the poonami in the kitchen.

I’m a lucky woman to have such an awesome husband to look after me. If I’m honest, I bloody hate that he has to deal with my shit (literally) I find it embarrassing and upsetting. But he deals with it all in a way that makes life so much easier and I find it easier to allow him to help me because he’s just so cool about it all.

sam cleasby blogger writer stoma ibd

After Id showered and sorted out a new bag I rejoined Timm and we finished making dinner and all was well in the world…

Then after dinner we headed out to the supermarket, we’re trying out meal planning and so we wanted to shop together to get next weeks groceries. As I got in the car I started to have stomach ache, by the time we got to Morrisons I was in quite a lot of pain. It kind of felt like trapped wind so I tried to ignore it.

Then it got worse, I went to the loos and I thought I was going to pass out from the pain. It felt like my stomach was bursting open, I’ve not hurt that bad since I was in labour. I came out and was sweating, pale and thought I would faint from the pain.

A lady sat me on a bench and I called Timm who was walking round with the trolley to tell him I needed to go home.

He practically carried me to the car and drove me home whilst I was grunting, shouting and swearing. I honestly thought something had burst inside me. It was agony.

I got home and laid in bed and removed my bag. My stomach was really swollen and my hernia really pronounced. My stoma was large and dark coloured. I was crying in pain as Timm got me painkillers, I really thought I needed to go straight to hospital.

As I laid flat my stomach started to relax and then I felt a weird feeling and my hernia seemed to shrink back into my stomach. And the pain just went.

It was the weirdest thing, one moment I was rolling round in agony, the next I just had a slight ache.

We’re thinking it must be the hernia?! That it came out a lot and then as I relaxed and laid flat, it sank back in. Who knows?! I haven’t eaten anything different today than I’ve had before. I haven’t drank quite as much as usual but just got no idea.

I felt quite embarrassed at the drama I caused and how much grunting and swearing I did!!! I’ve had painkillers and going to stay in bed now and relax.

parastomal hernia recovering from ileostomy surgery and hernia

Excuse the mess in my room! We are moving house in a couple of weeks and there are boxes everywhere!!!

I’ll speak to clinic/stoma nurse as soon as possible to see what they think it was. If any ostomates have any ideas I’d love to hear them! Perhaps I’m doing too much, I’m packing and cleaning our current home. I have no idea, I’m just glad I don’t feel like an alien is bursting through my stomach any more!!!

Thank you Timm for dealing with all my stoma dramas tonight, you are my hero and I couldn’t deal with all this without you.

exceptionallyawesomehusbandsobadass

Thanks for reading

Sam xxx