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Finally, an update!

Hey badasses, I am sorry for being absent for so long. It has been a bit of a rough ride and I just haven’t had the emotional energy to blog for a while. I think it is really important to put your own well being first, and often as a blogger, you feel the pressure to be constantly updating and blogging about your health. But it is vital to put yourself first and that means sometimes I won’t be about here to write.

Where to begin?

After my surgery in February 2020 where I had a full abdominal reconstruction to try and deal with the multiple hernias, I spent the last 12 months in recovery. Being very careful, following all the instructions and healing whilst going through a pandemic! I was hoping that this would be my final surgery and that all would be good from here on in.

Unfortunately, I have been in a lot of pain and after CT scans and hospital visits, I found out last month that my hernias are back. One behind my stoma that stretches up to my ribs and down to my groin and one in my right side. I am devastated.

Black and white image of woman in long skirt with large hernia

The surgeon said I am now at the limits of medical technology and further surgery right now would be far too dangerous to my life to even consider. He spoke about how now we have to focus on quality of life and how to manage the hernias. I was in absolute bits, I can’t believe my bad luck with hernias! He was very lovely but also is straight with me, he told me how complex my situation now is and that he wanted to take my scans to international symposiums and reach out around the world to other surgeons to see if they have any thoughts. I always knew I was special!!

The news hit me hard

I cried for weeks just feeling like I was being given a long, slow, painful death sentence. I know how dramatic that sounds but when your surgeon is telling you that you are at the limits of technology, it feels pretty dramatic! I feel like shit. The life I thought I would lead feels like it has gone in a puff of smoke and that I will always live in this daily, gruelling pain. My mental health has taken a nose dive and all the hope I had has been yanked away from me. I just feel completely devastated. It’s not fucking fair!

I didn’t want to blog about this at the time, I was in such a dark place that it didn’t seem fair or right to put that out into the world and I just wasn’t ready to share. Man, I wasn’t even ready to speak the words out loud.

But now here we are. And I am ready.

What happened next

So a couple of things that have happened since, I started on Amitriptyline. “Amitriptyline is a type of drug called a tricyclic antidepressant. These drugs were originally developed to treat anxiety and depression, but when taken at a low dose they can reduce or stop pain. It works by increasing the amount of serotonin your brain makes. Serotonin is a chemical, called a neurotransmitter, that the brain sends out to nerves in the body. It’s thought to improve your mood, emotional state, sleep and the way your body responds to pain. By raising your serotonin levels, amitriptyline should change your body’s reaction to pain. The low dose won’t treat depression, but it should reduce your pain, relax your muscles and improve your sleep.” This information comes from Versus Arthritis.

I have also this morning been to the Orthotics department at my hospital. “Orthotics is a medical specialty that focuses on the design and application of orthoses. An orthosis is an externally applied device used to modify the structural and functional characteristics of the neuromuscular and skeletal system” Via wikipedia They have fitted me with a specially designed hernia support for people with ostomies. I have also been referred to Physiotherapy.

Woman with pink hair with hernia and wearing a hernia support belt
Side view of woman with large hernia and wearing a hernia support belt

Positives

I think the most positive thing that has happened though has surprised me a little. After getting over the initial shock, I actually feel much better. I feel free. For 8 years now I have been through surgery after surgery, always waiting for the time when Ill be fixed and better and ok. I feel like I have put so much on hold during this time, I have put things off waiting for this hallowed day when I will be me again.

But this has made me realise that I have been me all along. It’s just a different me than I was before. And I thought I would go back to some magical day before I was ill but the reality is that I have these chronic, lifelong illnesses that are never going away and I need to accept that. And I think I am getting there. Don’t get me wrong, I am not all sunshine and rainbows quite yet, I still feel raw, hurt and angry that I have to go through these things. But I do feel like I am accepting it and moving forward as this new me rather than yearning after a life of the past.

I do feel sad about the way I look. The hernias are so swollen and make my body misshapen and painful. By the end of the evening, my tummy is huge and swollen. I look 7 months pregnant. And as shallow as it may be, I feel sad that my clothes fit weirdly and my body isn’t very attractive.

But I also feel like I can put aside these ideals of one day being perfectly well and pain free, and as shit as that is, I do feel freed by it. I feel like I can make different plans now without this constant worry that I am doing something wrong.

Visualisations and reality

I don’t know if you remember, but at a surgery a couple of years ago I used a lot of visualisation and meditation to help me get through the pain and recovery. One of my visualisations was floating on still water in a kayak with my husband, just us, the water and the skies. The only noise is the birds and water around us. This visualisation helped so much to calm me and focus on breathing during panic attacks and the worst of the pain. But it very much felt like a dream of something so far in the future, on this perfect day when I waved goodbye to the hospital and was fixed and new and all the medical shit was done and dusted.

Well the knowledge that that day is probably never going to come made me take action. We bought that kayak. We went out on the lake. I sat with my eyes closed, the sun on my face, the calm water surrounding us, holding Timm’s hand and it was bliss.

Kayak on lake

I did it!!! I did this thing I had dreamt of and put off and put off and it was amazing and wonderful and fucking perfect!!! I paddled and felt fierce and strong. I donned a wetsuit and life vest and did this thing I never really thought was possible and it was beautiful. Will I ever be the fastest, most powerful kayaker? No, of course not! Will I be totally pain free in my life? Probably no. But in that moment, I felt like I could do ANYTHING. And it felt good.

I suppose I just wanted to write and get all this out, this blog has always been so cathartic to me and it is a privilege that so many of you amazing people read it and connect with me. I know I have been very absent, both here and on social media. But now I am ready to share that there is shit news, but that also gives me perspective and a freedom to let go of so much baggage. And though I still have very bad days, the good days are here and it feels a tiny bit easier to see those silver linings, the green lights, the positives in my life.

Peace and love

Sam xx

Visiting people in hospital – How to help

Over the past month I have been very unwell in hospital after a big surgery. I have been so lucky to have lots of friends supporting me. So I thought I would write about how you can help when visiting a friend or loved one who is in hospital.

It can be really hard when someone you care about is in hospital. When you just want to help, but you aren’t sure what to do. So here is my list, please feel free to leave a comment if there is anything you would add.

Group messages

I started a WhatsApp group message before I went into hospital with some of my nearest and dearest. This was so that my husband just had one message to send after my op to let people know how I was doing. I knew there were a few different people who would want to know and this made it easier for Timm. We added friends and family members who have told me it was good to have one place to check for updates.

woman in hospital bed in HDU

VISITING

When?

It can be difficult to know when and if you should visit. For me, the first week after my surgery this time, I really didn’t want to see anyone apart from my husband. I felt extremely vulnerable and emotional and I just couldn’t bear the thought of visitors. I was falling asleep all the time and in a lot of pain. There were tubes everywhere and I really didn’t want to see anyone. And I really appreciated that my friends and family respected this. And when I felt up to it, I let them know through the WhatsApp group.

Check the visiting hours, in Sheffield visiting is open 8am – 8pm. For me this was great as it meant my husband could come in the morning and help me with getting washed. It’s worth checking with the patient or their closest person if there are specific times that would be best. My husband loves a spreadsheet and would let my friends and family know when to come. This meant no one would clash, or come at the same time as my kids and have a wasted journey.

How long?

It is easy to feel overwhelmed by visits. Be aware of how long you stay. About half an hour was my limit before I was really tired. Listen to the patient. I felt bad that people had made the effort to come to see me and so it was great when my visitors saw me flagging and left me to rest. Another friend brought her kindle and said to me “if you are tired, then rest your eyes and don’t worry about me, Ill be here when you wake up” and that was great!

What can you do?

Ask if there is anything practical you can do. My friend Hannah visited me and helped me have a bath. I had mentioned that I felt upset that my hair was dirty and I was worried that it smelled. I have been friends with Hannah for nearly 30 years and she is a nurse. So I felt comfortable with her seeing me naked and helping me bathe. It was amazing!

My friend Tania came and massaged my arms and hands. This was so lovely. I realised that you don’t really get touched in hospital apart from for medical reasons. So the touch of someone else with love and care was actually quite emotional.

Sam Cleasby IBD stony disability blogger Sheffield northern general NG tube

GIFTS

Ask if the patient is eating or drinking. I had visitors bring me biscuits and chocolate but I wasn’t allowed to eat! It was fine as I sent them home for my kids who were thrilled but I did feel a bit bad when they brought them in and realised I couldn’t eat!

I got some lovely cards and gifts too. This was so kind and thoughtful and I greatly appreciated them. But I also had visitors apologising for turning up empty handed and had to tell them that I didn’t need anything! It was just great to have them visit.

Remember that most hospitals do not allow flowers so don’t waste your money. I think the biggest thing is to just ask if the patient needs anything. There were days when I needed or wanted specific things; ice pops, menstrual pads, certain drinks and it was very much appreciated!

Are you a risk?

Don’t visit anyone in hospital if you are unwell. If you have a cough or cold or sickness and diarrhoea, do not put the patient at risk! Also if you have kids who are unwell, it is worth you not visiting incase you are carrying a bug.

In general, I would always say that other people’s kids shouldn’t visit hospitals unless confirmed with the patient and the ward that they are allowed.

Always wash your hands and use the antibacterial liquids around the hospital before having any contact with the patient.

DO YOU SMELL?

This might be a weird one, but my sense of smell was really heightened when I was in hospital. So when visiting, be aware of things like heavy perfumes or aftershaves. Also if you are a smoker, avoid smoking just before visiting. I have heard from other people that it is an issue for them too.

visiting someone in hospital

EMOTIONAL AND MENTAL STATES

Be aware that lots of people can act and feel very different to how they are normally when in hospital, especially if they have been in for a while or are on strong painkillers and medication. Patients can feel great the first day after surgery, but can struggle on day 3 and 4. Strong medications can really affect people and make them confused, upset and not themselves. This time I had an incredibly tough time, I cried a lot and felt extremely down. I know it was upsetting for my visitors to see me in tears.

I also felt quite confused. This was a mix of painkillers and also I really believe that ward life really adds to confusion. There were many days when I didn’t know what the day or date was. I am going to write a whole blog about this as I think it is something we don’t really talk about. I felt like I was losing my mind some days. But 3 weeks just staring at the same walls, have no windows, little sleep, lots of drugs and being scared and in pain can really affect your mental and emotional health.

YOUR VISIT CAN IMPROVE THEIR OUTCOME

Emotions have a powerful effect on a patient’s health. Having a positive outlook, using mindfulness and having a strong mind/body connection is said to improve outcomes. Studies have been done that say that a positive visit to someone in hospital can also improve the patient’s outcome, reduce pain and improve mental and emotional health.

According to the thesis Impact of Family Presence in the Healthcare Setting “Positive patient outcomes include accelerated recovery time, increased reports of comfort, and decreased duration of hospital stay. Research shows that patient outcomes are impacted greatly by family presence.”

So know that you making the effort to come and visit someone in hospital is not only a kind and caring thing to do and will make your friend or family member smile, you also could be helping them get better.

Speaking of smiling, don’t be afraid to make jokes and laugh. I knew how poorly I was and there were times that I needed a quiet visit. But a lot of the time it was nice to joke and laugh. My husband and friends made terrible jokes, laughed at dark things (just ask Timm about the doctor sticking his big fat finger in my stoma and telling us it was very tight). Laughter does help!

children and chronic illness ibd surgery

IF YOU CAN’T VISIT

Sometimes it is impossible for you to visit and that sucks. Maybe you live far away? My sister lives in Australia and my sister in law lives in Lanzarote and I know it was really tough on them. They felt like they couldn’t do anything to help. Or maybe you are unwell, or have a compromised immune system and coming into hospital is a no go.

The messages and phone calls I got whilst in hospital meant the world. I loved being able to chat to people by text or facetime and it was as lovely as a visit in real life. Though it was hard at first because I was so poorly I couldn’t manage to be on my phone. Once I was feeling better though, it was great to catch up. Especially with my sister, due to the time difference, she was my night shift!

Technology is your friend in these situations. I think messaging is great as it gives the patient time and the ability to not reply if they don’t feel up to it right at that moment. Just don’t get offended if they don’t reply right away!

DON’T FORGET THE FAMILY

One of the greatest things my friends and family did whilst I was in the hospital was to think about not just me but about my husband and kids too. From taking the kids out, cleaning the house, sending gifts to driving the kids about and just chatting to them all and asking how they are doing. It meant so much to know that they were being looked after too.

I’d love to hear from you if you have any hints or tips for visiting people in hospital.

Peace and love

Sam xx

NG Tube – Nasogastric tubes – My experience

After my latest surgery, my bowel didn’t wake up for two weeks and I ended up having an NG tube. I feel quite lucky that it was my first one and I have had Inflammatory Bowel Disease for over 16 years. So I thought I would write a post about it.

An NG tube is a flexible tube that is passed through the nose, down through the esophagus, and into the stomach. It can be used to either remove substances from or add them to the stomach.

You can see a video below from Geeky Medics on YouTube about how an NG tube is inserted.

my experience

My experience of having the NG tube inserted was that it was a little scary at first. I had to have it because I had an ileus. My bowel didn’t wake up after surgery for two weeks. I have an ileostomy and nothing was coming out of it at all. So I couldn’t eat but my stomach was filling with bile. I needed to have that removed from my system.

The nurse did it at my bedside and talked me through what would happen. I was given a glass of water with a straw to drink as she inserted it. She inserted the NG tube into my nose and it felt very weird! As it reached the back of my throat, I started to gag. She told me to take a sip of water and swallow it down. I did gag a little and she asked me to try and relax which is easier said than done! But eventually it went down.

She then tried to aspirate the tube. Which means she put a large syringe on it and drew it back, this should have brought some fluid up but didn’t. So unfortunately, she had to take the tube out as it was in the wrong position. As she pulled the tube up, it made me gag and cough. Then we went for round 2! It felt the same but once it was in, she could draw fluid and it was in the right place.

When she aspirated the tube, she immediately drew off almost 2 litres of bile from my stomach. I felt the relief almost immediately. Then she left it to drain and another few litres came out over the next few hours.

bad reps

I think there is a really bad reputation around NG tubes. Another nurse had mentioned one before. She said “Oh you should try everything you can so you don’t have to have the NG tube!” and that really scared me and made me not want it.

Unfortunately, I was still vomiting with the NG tube in. When that happened I felt like I was choking and couldn’t breathe. This made me panic so much and I began to cry. I felt so scared and I didn’t really understand the tube. I thought as so much had come out through the tube that it meant it had been cleared. So I asked them to take the tube out.

woman with NG tube and a bag of bile

Then over the next few days, it all built up again. I was told that your body creates a few litres of bile every day to help you digest food. And as my bowel wasn’t working there was no where for all this bile to go! So it was building up more and more. I was vomiting, my stomach looked 9 months pregnant and I was in agony. The nurse came and said she thought I needed the NG tube. I didn’t really understand what was going on and asked if it would help. She said it was the only thing that would help. So of course I said yes.

tube number 2

She inserted another tube and drained off litres of bile. I then kept that tube in for the next 8 days until my bowel started working. It is uncomfortable. I could feel it at all times in the back of my throat and I had to learn to cope with that. It helps to try not to swallow and when you feel it in the throat to take some deep breaths.

I can’t lie. I found it really uncomfortable the whole time. But having had one in and it taken out, and the pain and suffering I felt in that time, I knew I needed to keep it in for as long as my bowel was asleep.

draining the tube

The NG tube is attached to a drainage bag that is pinned to your top to avoid it dragging on your nose. It drains whenever the stomach fills with bile and you don’t have any control over that. As you move around or change position, it can suddenly fill up quite quickly.

Then the nurses or you can open the bottom of the drainage bag and empty it into a bowl. My team were measuring what was coming out, so they took it away to measure. And periodically or when I started to feel swollen or in pain or sick, the nurse would come and aspirate the tube. Again, this means that they put a large syringe on the tube and pull it back to draw up anything in the stomach.

NG tube

This tube was kept in for 8 days till my bowel started working and things could get through my system. Whilst the tube was in, I wasn’t allowed to eat and could only take sips of water. So I was also on a drip for fluids and Total parenteral nutrition (TPN) for nutrients.

If you are faced with a situation where you are told you need an NG tube, it can be really scary. It was uncomfortable for me. Though I have spoke to other people who said after a day or two they stopped noticing it. But regardless of the discomfort, I have to say that having the tube in was so so much better than the pain, swelling and sickness of not having it in when my bowel wasn’t working and it was the only way in and out of my body!!

I hope this blog helps a little. I have no medical training. This is only a description of my personal experience of having an NG tube for the purposes of dealing with ileus and bowel blockage. If you have any concerns about your own health, please speak to your own doctor or medical professional.

Sam xx

What they don’t show you on TV

Today’s post is about how surgery is shown on TV and in films versus the realities. And how that perception can mean you’re in for a huge shock when you have an operation in real life. Surgery recovery is different for everyone, but it’s certainly very different to how it looks on Casualty!

It’s all blue lights flashing, being seen immediately and running down corridors with a patient on a bed. There’s the tense music and drama of the overhead scene in an operating theatre. Whilst sexy, brooding doctors heroically slice and dice.

Recovery is a brief montage that flips from patients laid covered in tubes to them bravely walking through physio, brows furrowed and swiftly back to normal.

This isn’t what it’s like in real life.

I mean, I get it! Of course things are dramatised and only the most exciting or entertaining parts are shown and have to fit within time limits. But it’s interesting just how far from the truth the scenes we see are. From movies to medical dramas to the fly on the wall real life medical shows, the thing I think that is the most lacking is the waiting, the boredom, the time it all takes.

Sam Cleasby surgery blogger

My experience of surgery and recovery

I’ve had 8 surgeries for things related to Ulcerative Colitis. From my experiences, it’s hard to relate to what you see on TV. And it’s not something we really talk about so it’s important to think about what expectations people have when they go into hospital for surgery.

Firstly the waiting times, in the medical dramas patients seem to go from diagnosis to surgery in a matter of hours. Most ops are planned in and you are waiting weeks or months for a surgery date. Even when it’s an emergency, it still takes a lot of time!

But the one that gives the most false expectations is about recovering from surgery. I remember a couple of days after surgery saying to Timm whilst I was crying and off my face of pain killers that I just wanted a montage of recovery and to be all better!

It takes time!

It takes time, so much time to recover from an operation. Just having a general anaesthetic is a huge amount of pressure on your body and takes months to be out of your system properly. My hair always falls out by the handful in the weeks after surgery and this is to do with the GA.

All the medication can really effect you, not just physically but mentally too. Confusion is really common after surgery and something that isn’t really discussed. Doctors and nurses tell me how common it is for patients to be extremely confused and even be delusional after surgery. Especially if they get infections. This is a big subject and I’ll be doing a separate blog post on it.

hand with cannulas in it and wires and tubes in the high dependency unit in hospital

Boredom

It’s so boring. Of course, TV shows don’t want to show the boring parts and as viewers we don’t want to see the boring parts! But man, it’s dull! Being unable to do all the usual things and having to so much time in bed or sat down is dull. It can be really hard to concentrate too. Just reading a book or watching films is really hard so the usual ways you relax can be out of reach in the early days.

And then the weeks that follow are a balancing act of moving about enough to keep your body ticking over. Keeping your muscles happy and lungs and breathing a-ok and not doing too much that you will harm your recovery. After abdominal surgery I’ve been told to lift nothing heavier than a kettle… it’s amazing how much in life is heavier than a kettle! It can be so frustrating to not be able to do all the things you usually would.

And the tiredness!!!! No one explains just how tiring it is, how your body is using so much energy in healing. A 10 minute conversation results in a 20 minute nap! I am unbelievably exhausted at the minute, and listening to my body is key. The body is hard at work even when just sat still, so tiredness is to be expected after any surgery.

Obviously I have no medical training and can only go on my own experiences. But it got me thinking about how we can better prepare people for surgery to combat all the things we’ve seen in the media? And I suppose for me it is speaking about it honestly and openly here on my blog.

Tell me about your experiences of surgery and how they compare with TV and film, you story might just help someone else struggling right now.

✌🏽& ❤️

Sam xx

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

I got my date for surgery

So I have a date for the next, sorry I mean LAST surgery! 30th April I will be heading in for what I hope and pray will be the last operation I have.

Ive been referred onto a doctor who specialises in complex abdominal cases and he is going to repair the two hernias and move my stoma again. I have been warned that it is a major operation, that my case is complicated and will be difficult and that he won’t really know his plan until he opens me up.

The parastomal hernia is huge, the opening is very big and measures about 15cm on my stomach and they know I have a lot of adhesions, that everything is stuck together.

They said it will be around 6-7 hours of surgery, 10-14 days in hospital and 2-3 months off work recovering.

Ive been told it’s risky, that I have a 75% chance of complications and that is terrifying me. I have stopped smoking though, I’ve moved onto a vape and this reduces my risks by 10% so that’s one positive.

Ill be going straight onto the POSU (Post Operative Surgical Unit) with the chance that I may need some time in HDU (High Dependency Unit).

Sam Cleasby Sheffield blogger chronic illness hospital surgery

How am I feeling? Well it feels very real now, though I knew it was coming, having a date has set it in motion and I’m feeling panicky and anxious. I’m scared of the complications, I’m scared of the long hospital stay, I’m scared I won’t come home.

I know I can’t dwell on thinking negatively but man, I just feel so frightened that this will be the one that it too much. This will be surgery number 8 in the past 5 1/2 years and I can’t shake the feeling that it’s one too many.

I’m in so much pain every day, it feels like everything is going to fall out of my stomach every time I stand up. I am struggling to function, I’m always in bed. Doing one thing means a week of being unable to stand. I’m always medicated and drugged up and I know I can’t live like this and that I need this surgery.

And so I have to try and think positively, I’m reading a lot about the mind body connection and how meditation and visualisation can decrease pain, stress and anxiety and can improve mental health, shorten recovery time and help you heal quicker.

I feel like I’m on a narrow ridge, on one side is positivity, strength and happiness and on the other is a swirling mass of anxiety, fear, sadness and panic and honestly, I feel like I could lose my balance either way right now. I’m trying to slide into the positivity but there’s this weight pulling me towards to shit storm of crapness.

Planning

All I can do is fight. I’m doing everything I can to be as strong as I can mentally going into this. I’m meditating daily, I’m spending time outdoors, I’m planning my recovery.

But there’s still a part of me that is planning to fail. The chest freezer I bought and filled with food so Timm won’t need to worry too much about big shops when I’m in hospital is also a safety net of me thinking they’ll have food if I don’t make it. The days out and nice things I’m pushing myself to do are because I won’t be able to do much for a couple of months will also be nice memories for the what if.

Fuck, that’s dark isn’t it!!

The thing is that keeping those dark thoughts to myself gives them power, it allows them to take over my head and drown out anything good and so I say them out loud and yes, they’re depressing and horrible and messed up. But then I see them written down and can separate myself from them, I can see them for what they are; my anxious brain coming up with a list of what ifs and plans for the worst.

And once they’re out there, maybe I can let them go and go into this surgery as positive as I can be.

Wish me luck, I’m going to need it.

✌🏽& ❤️

Sam xx

I had my pre op!

This week I had my pre op assessment for my upcoming surgery. Pre ops are for when you’re having a general anaesthetic. You have a hospital appointment with a nurse to check if you’re fit enough for surgery.

They check your height, weight and blood pressure, take blood. Then they either take swabs to check for MRSA if you have your surgery date soon or send you home with a swab kit for you to do the week before surgery. It is an assessment to check whether you’re fit to have a general anaesthetic.

Its also an opportunity to discuss the surgery and any concerns you might have. As I’ve mentioned before my biggest fear at the minute is that I won’t receive proper pain relief after the surgery as this has happened to me twice before in this hospital.

After a big op like the one I’m having, I tend to have an epidural in place that delivers pain relief for the first few days after surgery. When this is taken down it can be a big shock to the system and good regular pain relief is a must.

My worries

Unfortunately twice now I have been left in agony due to the ward nurses not giving me appropriate drugs on time. Now I’m terrified it will happen again. So much so that I almost don’t want to have the surgery at all.

But I got time to speak to the nurse this week and share my fears. She told me that it was unacceptable that this had happened and that if it happened again, to immediately ask to see the matron who would sort it out and be majorly pissed off at nurses not doing their jobs.

As I’ve said so many times, I have huge respect for nurses and the vast majority are bloody wonderful! But there are some shockers.

Mind/Body connection

In a book I read this week (healing from the inside out, Nauman Naeem) it talks about how ‘good patients’ as in those who don’t speak up, press the buzzer, complain when needed are at much higher risk of complications and that rather than being a patient we should be a respant – a responsible participant.

The nurse also has arranged for the accute pain team to see me ASAP after surgery and has made notes for the anaesthetist to let them know how nervous I am and my past experience. She said they will be able to write me up for decent pain relief before they even consider taking the epidural down.

She has reiterated just how complex this surgery is going to be, around 7 hours in theatre and a high risk of complications. They have booked me into the post operative surgery unit (POSU) for straight after where they’ll keep a closer eye on me and if I need to be transferred to the High Dependency Unit they can do that quicker and more easily.

Feeling scared

I will need to be in hospital for at least 10 days and recovery will be 2-3 months.

They will be repairing the huge parastomal hernia, it’s a massive opening about 15cm and the incisional hernia on the other side and moving my stoma again. I have adhesions everywhere and so these may cause problems.

Its fair to say that I’m terrified.

Im trying very hard to stay positive, I have a new mantra (again from reading the book above) that I tell myself every day to fight against the feelings that everything is so tough right now and I hope that having more open and positive thoughts will aid in my healing.

“I am open and welcoming to healing, strength, love, joy and happiness”

✌🏽& ❤️

Sam xx

Health update

I thought I would give a bit of a health update as I feel like I am just constantly complaining on social media about how grim I feel.

I have two large hernias (I know, I know, I’m as sick of hearing that word as you are!), one is a parastomal hernia, this means it is sat right behind my stoma and one is an incisional hernia in one of my many surgery sites.  The parastomal one is the most painful, it is quite large and gets bigger throughout the day.  It is a constant feeling of pressure behind it and it feels like all my insides are going to burst out at any minute! The second hernia is not painful all the time, but a few times a day it is an awful stabbing pain, it takes my breath away and so between the two I am really struggling with pain.  I’m on codeine and nefapam for the pain which help but also make me super groggy.

The other issue is I have a large ovarian cyst, at the last CT it had grown and was around 7cm big, I am having weird periods (long gaps and random bleeds) and a feeling like constant bad period pain.  I also apparently have a large, fluid filled fallopian tube (because why not throw another thing at me!!) and so I am waiting for further scans and tests for this.  I think it is due to the huge amount of adhesions in my body, basically everything is stuck together and altogether unhappy in there.

So the plan is for the gynae surgeon to take out the cyst at the same time as they fix my hernias if possible. Mr Brown wants to get another surgeon involved, he specialises in complex abdominal cases and I have an appointment to see him at the beginning of February.

And so I am just still in limbo waiting for a surgery plan and date. On one hand, it just cant come soon enough, I am getting to the point where the pain is getting too much, my nerves are shred and every ounce of patience has been used up.  I am short tempered, pissed off and struggling to not lose my shit.

Talking of losing my shit, the parastomal hernia is making my stomach a very weird shape and so bags are not wanting to stay put, so I am leaking really often which is just making life all the crappier.  This is my parastomal hernia, the pic was taken after a day of rest and so is actually not as big as it usually is.

parastomal hernia

Most days I look about 6 months pregnant and so that’s not much fun at all…

I dropped my work days down to three days a week a couple of months ago as I was finding it so hard to keep up with everything whilst feeling so ill, exhausted and in pain every day.  This has helped a lot, but to be honest, even part time work is a real struggle right now.

Also because I had two surgeries last year and subsequent time off to recover, I am out of paid sick days so I am panicking about how much time I will need off after this next op. If it goes to plan and they do the two surgeries in one go, it will be a big old op and I will need a lot of time off afterwards to allow myself to heal. But I also won’t be paid for this time.  Of course, my health has to come first and I will take as much time as I need and the doctors recommend but adding the financial worry to the mix isn’t helping.

And so I think that is everything up to date health wise. Basically my body is broken and I’m waiting to see if docs can make life a bit less shit!

I know I have been a right whinging bag on facebook and twitter, but honestly I don’t even apologise for it! Life with chronic illness isn’t all positive quotes over images of clouds, it’s not all high fives for celebrating our awesomeness and shiny, happy selfies with puppy noses.  Sometimes it is dark and miserable, lonely and scary and the one thing I promised myself over 5 years ago when I started this blog was that I would be honest about the highs and the lows.

Thank you so much for all the kind, lovely messages I have received over the past few weeks, I try my best to reply to everyone but don’t always have the energy, but I do read them all and each one means the world, so thank you.

Sam xx

The C word

No, not Cotton Headed ninny muggins.  Or C**t. But Cancer. Today I’m writing about cancer.

Before it feels too click baity, first up, I don’t have cancer, so no panicking!!! But I’m in the middle of a bit of a scare, so here goes…

A few weeks ago I had a CT scan to take a closer look at my hernia and then a couple of days later I ended up seeing my GP as I was having terrible acid reflux along with lots of stomach pain. I’d assumed it was all linked to the hernia.

The GP pulled up my CT scan results and told me that it had been noted that I had a very pronounced ovary. He started asking more questions about periods, pain levels, weight etc and then told me he’d like to do some blood tests. He explained that it was probably nothing but he wanted to check my CA125 tumour markers, that this marker looked at ovarian cancer and he just wanted to rule it out.

He explained that I could get an abnormal result simply as I’ve had abdominal surgery this year but he wanted to look.

I usually have regular (if very heavy) periods, but the past few months have been off kilter, being up to 3 weeks late which never happens! I’ve been having trouble eating as I’m getting heartburn and indigestion and a lot of bloating along with peeing a lot and lots of stomach pain but I’d put this all down to my usual problems.

A week later he called to tell me that they had come back high (a normal result is 0-35, mine was 68). He explained that this number can go into the thousands and so though mine were above normal range, they still weren’t sky high and still could be explained by other things but it was concerning him and he wanted to book me in for an urgent ultrasound.

It’s been a rough couple of weeks. Though I’ve tried to not get worried it’s hard to not let your mind run away with yourself and panic.

I started thinking about how I take painkillers every single day, how I’ve used a hot water bottle daily for months to ease the pain, how the pain in my stomach is often so bad that I can’t stand. I thought about how I’d put all this down to post surgery pain and the hernia and I’ve been scared that perhaps I’ve missed something bad.

Today I had the scan, I cried a lot in the morning, thinking that this could change everything, I was shaking and scared. I was hoping they’d see nothing and I could go back to just worrying about my stoma and chronic illness!!!

They found a large cyst on my left ovary, it’s about six and a half centimetres which apparently is quite big and so it is a concern.

The GP called me this evening and said that it could be just a normal benign cyst, but due to the size and the high blood tests, he wants it checked and so has put me through for an urgent referral to the gynae clinic.

Their course of action could be:

Rescan and more bloods

More scans/MRI

Surgery to remove it

But we’ll have to wait and see. There’s still a good chance this is a run of the mill cyst that will cause no more trouble but he had to warn me that it could be cancerous.

But the good thing is that due to catching it accidentally on the CT scan means it can all be diagnosed and treated early and I’m staying positive that whatever the little bugger is, I’m in good hands.

The past few weeks have been worrying and scary, even though I KNOW you should never google symptoms, I have done and it’s scared the pants off me.

Im just so fed up, my health has been one shitty thing after another and this year has been pants! Two surgeries this year alone and now the possibility of not just one more to deal with the hernia but potentially two more! I’m done in.

I am weepy, impatient and frazzled. I really must have done something bad in a past life!!! I’m scared. I know I need to think positively but it’s hard to not think the worst when it comes to people mentioning the big C.

But I must shake it off and keep my game face on because whatever the results, I will smash it!

✌🏽& ❤️

Sam xx

 

Surgery number 7!

If you follow me on social media, you’ll know that I had my big op a couple of weeks ago, it’s been a really tough time so I’m only now just well enough to blog about it.

So a bit of background, I had developed a hernia in the incision of my old stoma site and had surgery to operate in March to fix this. After that operation, my surgeon told me it was worse than expected and there was another hernia behind my stoma.

Over the next few weeks, these hernias grew and developed and were extremely painful and getting in the way of day to day life and so the decision was made that I’d need yet another surgery to fix these.

Parastomal hernia

It was decided that I’d try and wait till after August for this op, both to give my body time to recover and also as we are going on an American road trip in August and I wanted to make sure I was well for this.

The pain was getting worse week on week, I had a weeks holiday at the end of May to have some time at home around my birthday and I ended up spending that whole week in bed in agony. My birthday was spent having a bbq with our two best friends in a quiet evening at home where I could lay down and rest. Beautiful but disappointing to feel so poorly.

My beloved nan also took a turn for the worse and so I was trying my best to visit and spend time with her.  On Sunday 3rd June, we went and spent the day with her, she was very tired and on medication but it was lovely to spend time with her and lots of my family.

On Monday 4th, I was in a lot of pain, I could barely stand and my hernia was really stuck out, the decision was made that I needed to get into hospital the following day and have emergency surgery. It was a huge shock and I was frightened about it all.

And then I got the worst phone call. My beautiful, incredible nan had passed away. We rushed straight to her house and spent a few hours with her, holding her, kissing her and just being in her presence. I felt everything crashing away from under me. I can’t say much more at the minute, it’s too raw and painful.

The following morning, Timm took me into hospital and on Thursday 7th I had my surgery.

I had repair of two hernias and resiting of my stoma on the left side. It was quite a long and complex operation as I had a lot of adhesions, mesh and scars to deal with. I believe it took around 5-6hours and honestly has been the toughest one so far.

Perhaps it’s my age or the previous scars etc but either way, this one has floored me.

It was a bit of a shock really to wake up from such a big op, I hadn’t been expecting it and I was still reeling from loss and so my head was all over the place. The first day was a haze of morphine, I had very low blood pressure but I was feeling ok.

The pain team came to see me and explained the plan in place for taking me off the epidural, I told them that I was quite scared as I knew from previous experience what a shock it can be coming off the epidural. I was assured that everything would be in place and I wouldn’t have any pain.

The following morning I was given paracetamol codiene and eventually Oramorph, I’d asked Timm to come in to advocate for me as I knew it was always tough coming off and getting it right. We were told I could have oramorph every hour and that I’d be fine. Happy with this, Timm left to sort the kids out.

The pain started to grow and I saw a nurse who gave me paracetamol, she offered codiene but said I couldn’t have codiene and oramorph together and so I requested the oramorph. She went to get it.

Twenty minutes passed and the pain was blooming through my body, I pressed the buzzer and was told they’d let the nurse know. Another twenty minutes passed and I was in tears, I couldn’t breathe, I was sweating and moaning. I pressed the buzzer and told them I’d take anything just please give me pain relief. Again they went away saying they’d tell a nurse.

Another twenty minutes passed. I was crying hysterically and pressing the buzzer. No one came. Another patient came over and said ‘can I hug you? You’re in so much pain and I can’t believe they’re ignoring you’.

Eventually the nurse came over, she asked what all the fuss was about. I said ‘please just give me the fucking drugs!!’. She was angry and said she didn’t have to be spoken to like that. I begged her ‘please just give me the drugs!’  She angrily jabbed me in the arm leaving a painful red lump and stormed away.

Ten minutes later she returned saying I could have another injection, she was fuming and said I was a disruptive patient. I tried to explain that I was in agony and I’d been promised that I wouldn’t be left in pain. That I was sorry I swore but I was terrified and the pain was too much and I’d been left for an hour. She rolled her eyes at me and was so cold and rude. I said she was being really uncaring and she just rolled her eyes and so I said that my husband was coming in.

Honestly I was in shock, I couldn’t believe that I’d been left in that state. It was less than 48 hours after a huge surgery where I have two big wounds and a new stoma. I was left crying on a ward for an hour whilst they ignored me.

After this, I was laid in bed sobbing. I was in shock, distressed and as the pain relief took effect I was shaking. My arm was red and swollen where she rammed the injection in and I felt so low and just not human.

You all know I love our NHS, I wouldn’t be here without it, it’s amazing. But sometimes people let it down. This nurse was the coldest most uncaring person I’ve ever met. She looked at me like I was shit, she hurt me, she made me feel like I didn’t matter.

We complained and the matron came to see us, she was lovely and listened. She understood and apologised. I apologised for swearing, that i wasn’t like that but the pain was so much. She said it was totally understandable. We will be taking this further.

Thankfully I have a voice, and I have a husband to come and fight my battles with me but there are many who don’t and it’s for them that I must take the complaint further to make sure this doesn’t happen to anyone else.

Sam Cleasby surgery blogger

Once the pain relief was under control, the rest of the stay in hospital was quite normal. Timm came every day, he was my hero. I was struggling as I had no appetite, but the nurses were wonderful and really supportive which was a relief after such a poor start.

My blood results weren’t great though and there was concern about infection but then they dropped to within normal limits and I was let home on Tuesday 12th June.

Sam and Timm Cleasby

As far as we know, the surgery went well. I have a large scar up my middle and the old stoma site has been left open and is being packed every day by the district nurse. It’s a bit of a shock to see a big hole in your tummy though!

This has ended up being a super long post and so I’m going to end it here and I’ll do another post about recovery at home AKA it all goes tits up and Sam thinks she’s going to die… (spoiler, I obviously don’t die)

Adios!

Sam xx