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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

Surgery and complications – the month from hell

Hi guys, it’s been a tough month here in So Bad Ass land, but I eventually feel a little more human and I thought I would try and do a blog about the last surgery and all the complications. It has been the toughest time ever and at times I didn’t think I would make it, so I am glad to be here and will do my best to write about it.

Surgery was on the 11th February and it was a full abdominal reconstruction and moving my stoma. I had two parastomal hernias, my left side had a huge opening and my right side, the muscles had pretty much disappeared. It was going to be a big surgery going and I felt quite scared but I had lived in pain for months and needed an end to it. I just want to be able to live an active life.

Surgery went well! I awoke after a 6/7 hour operation in the High Dependancy Unit (HDU). They hadn’t been able to get an epidural into my back, I have had a lot of epidurals and it has felt more difficult to get in each time. The anaesthetists said I have a lot of scar tissue in my spine now. So I had two different types of painkiller going into drips, ketamine as a regular drip and then oxycontin (?) on a Patient-controlled analgesia (PCA) pump that I could press as often as I needed.

You shouldn’t film videos when high on ketamine!

I woke up feeling pretty great and even filmed a little video… unfortunately I have no memory of this at all and watching it back, it is clear that I am high as a kite!!

The first day or two, things seemed to be going well. My bowel hadn’t woken up yet but that is quite normal for me after surgery, it usually takes 2 or 3 days for it to wake up. This is called an ileus. Ileus is the medical term for this lack of movement somewhere in the intestines that leads to a buildup and potential blockage of food material. An ileus can lead to an intestinal obstruction. This means no food material, gas, or liquids can get through. It can occur as a side effect after surgery.

NG tubes

But then we got to day 3 and 4 and there were still no signs of the ileus coming to an end. And I started to feel really poorly. I couldn’t eat and even taking sips of water was making me vomit. A decision was made to put a Nasogastric tube (NG Tube) in. An NG tube is a flexible, lubricated tube inserted through your nose into your stomach to help remove excess gas from your stomach and intestines.

I haven’t had an NG tube before and it is pretty uncomfortable to get in place and then it isn’t pleasant to be in place. You can feel it in the back of your throat and it takes a while to get used to it. I am going to do another post just on NG tubes so I won’t go on about it now. But all I can say is though it isn’t pleasant, it gave me a lot of relief. It stopped the vomiting bile and took away the pain of my swollen, full of bile and gas tummy.

woman in hospital bed with an NG tube and bag of bile

I am struggling to even write about how hard it was in hospital, I have never felt so unwell, vulnerable and scared. For the first week, I refused to see anyone but Timm, my husband. I just felt so terrified and ill and with all the drugs, the ileus, the vomiting, the lack of eating and drinking and being stuck in hospital, my mental health was all over the place. I cried a lot, I just couldn’t cope and felt I was going to die. With so many tubes going into me, I could barely move off the bed and needed a lot of support to do anything.

TPN – Total Parenteral Nutrition

As we went into week two, my bowel still hadn’t woke up. I had gone 12 days without food and only on a drip. The decision was made to put me on Total parenteral nutrition (TPN). TPN is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. 

PICC line in the arm of a woman in hospital for TPN

This meant they had to put a peripherally inserted central catheter (PICC), also called a PICC line. It is a long, thin tube that’s inserted through a vein in your arm and passed through to the larger veins near your heart. They put the TPN through this line as I was becoming really malnourished after 12 days without eating.

I started to see some friends and family in hospital, but I was still incredibly weak. I just felt so tied down and not at all myself. With two cannulas, one in each arm, the NG tube in my nose as well as oxygen into my nose. A catheter in my bladder and the PICC line. I felt more plastic than human!

Stoma catheter

As there was no sign of my bowel waking up, they were concerned that there was a kink or a blockage in my new stoma and that I would have to have more surgery to fix this. But first they decided to try to pass a catheter into my stoma. They attempted this on the ward at first, the doctor inserting his finger into my stoma and then trying to pass the catheter. But it wasn’t possible. So I went down to theatre and they did it under sedation. The plan was to put it in with sedation, but if it didn’t work then they would put me straight under anaesthetic and perform a surgery to see what was going on. Luckliy the catheter went in and I am so grateful that I didn’t have to have any more surgery!!!

womans face with an NG tube and oxygen after bowel surgery

Thankfully a couple of days later, my bowel started to wake up and after 2 weeks, the tubes started to come out! It was such a relief and once the ileus stopped, I was allowed home and it was a huge relief. I was losing my mind in hospital, I was crying all the time and just felt as if I was going mad. I hadn’t seen outside the hospital in weeks, I was still on a lot of drugs and I just feel like the whole ward system in our hospitals are set up in a way that makes you feel like you are losing it! You lose who you are, you don’t see outside and it’s easy to not even know what day it is. Confusion is rife and it is so distressing. I will be doing a whole blog on this as I think its an important issue that is never discussed.

So I was allowed home, but I had to go back in the following morning for blood tests. I did this and they said that my kidney tests seemed wrong as they had gotten 5x worse overnight. They redid the bloods and told me I could go home.

Things went awry

Almost as soon as I got home things started to go wrong. My bag was filling almost like a tap had switched on. Going from nothing, no output for 2 weeks, it suddenly was like a waterfall. Bags weren’t staying on, I leaked constantly as it was like water. I then vomited almost 2 litres of bile. I went downhill very quickly, I was drinking rehydration drinks and squash, forcing down a mouthful every 10 minutes to ensure I was getting some fluids in. But as the night wore on, I could barely move. I was terrified, I had never felt so sick. I thought I was going to die. There was a point where I just wanted Timm to get me out of the house as I didn’t want to die in my bed and the kids be in the house.

Then the hospital called. They got my results back and they had got even worse, I had to be rushed straight back in. By this point, Timm said I was grey, I hadn’t pee’d in over 12 hours, I was just vomiting and water was flying out of my stoma. When I got there, everything got very busy! You know it’s not good when all the doctors are around your bed. They got one cannula straight in and starting pushing fluids through as fast as they could. But my veins were all flat and it took hours and 8 attempts to get the other cannula in to get more fluids in.

Acute Kidney Injury

I was told I had a stage 3 acute kidney injury (AKI), that when my bowel woke up, it just went into overdrive and between that and the vomiting, I was extremely dehydrated and my kidneys were starting to fail. The renal team were on hand advising my doctors and they did everything they could. I had ultrasounds, CT scans and X-rays and a constant flow of fluids going through as fast as possible.

I couldn’t move, I was so weak and I just laid there thinking I was going to die. It was so scary. The doctors and nurses were amazing and they were very calm. But they said my kidney results had been great before I left the hospital, they had come back 5 x worse and they assumed there had been a mix up at the labs as it wasn’t usual to see that level getting worse so quickly. But then the third lot had worsened by another 5 x which is why they got me back in so quickly. We realised that there are “extremely high mortality rates with AKI, more than 20% of patients with AKI will die during hospital admission, rising to >35% in those with AKI stage 3”. This was when we realised just how bad it had been.

Sam Cleasby IBD and stoma blogger in hospital weight loss after surgery

After 2 days on fluids and medication, I felt 100% better. I was lucky to have got back into hospital and got treatment so quickly. My kidney results started to go back to normal and these need to be kept a close eye on over the next few weeks. After a terrifying time, I eventually came home again and fingers crossed I won’t be going back!!

Home time and recovery

So I am now home. I have lost a lot of weight and so much muscle, my legs are really thin and weak. I have zero energy, I am still spending most of my time in bed. But I am starting to feel back to myself. I can see the light now after so many weeks of feeling like I have no control and that I was never going to get better. They say you have to take things one day at a time, but there were many many days where I had to take it an hour at a time. Or even minutes at a time.

I can’t thank my husband Timm enough. He was there every step of the way and I genuinely don’t think I would have got through without him. Every time I needed him, he was there. Timm spent hours and hours every day by my side in the hospital. He dealt with every bodily fluid imaginable! He held my hand and told me everything was going to be ok, even when he was scared, he has been everything.

Also I am so lucky to have a group of friends who have been supporting me and my family all the way through this. Looking after my kids and Timm as much as me. I can’t thank them all enough, our friends, our family, both those who are local and have cooked, visited, held my hand, bathed me, took the kids out and so much more. And those further afield who have been on the end of the phone with love and support and concern. It has been the worst time in my life but it made me realise how lucky I am to have so many amazing people in my life. Special thanks to Caroline, Wrighty, Hannah and Tania who have been simply wonderful. But also thanks to every person who has called, messaged, send cards and gifts, visited and cared for me and my family, you are all awesome.

On the mend

I am now home. I’m definitely on the mend now though I can’t believe how weak and tired I am. I have had so my surgeries and I thought my recovery would be the same as the others. So it has been a bit of a shock to have faced these complications. It is 4 weeks today since the surgery and usually by this point I am feeling much better. I am actually a few weeks behind. I was in hospital for 3 weeks and though it is great to be home, I still have to remind myself that it is ok to take my time and I have to be patient.

It has been really hard to write this post, mainly because so much of the past month feels like a bit of a dream. It is weird to see photos and videos of myself where I don’t recognise myself. I can’t remember a lot. And some of it has been so distressing and upsetting that I can’t bear to think about it too much. It has felt like a real trauma and I think it will take time for me to come to terms with it all.

Thank you to everyone who reads my blog and follows me on social media for the lovely messages of support over the past few weeks. I haven’t had the energy to reply to everyone but I have read every one and they mean the world.

Thank you for your kindness. I will try and do a few more blogs about the specific bits I want to chat about soon. Till then, I am home and recovering slowly with the love and support of my family and friends.

Peace and love

Sam xx

Botox injections for abdominal reconstruction

This post is about having botox injections for abdominal reconstruction due to hernias. I would like to start this by saying that I have no medical training and this post is just a patient’s view of going through this procedure. If you have any questions, then you should speak to your doctor.

Botox injections

After having my large intestine removed in 2013 due to Ulcerative Colitis and having an ileostomy formed, I developed hernias. I also had other major open surgeries including a jpouch formation and subsequent removal. I have had multiple hernias as a result of these surgeries, both parastomal hernias, incisional and currently a large problematic hernia in my abdominal wall.

I’m due to have surgery tomorrow to fix these issues with an abdominal wall reconstruction and as part of the preparation for this, I have had botox injections into the abdominal muscles.

When I was told I was having this done, there was very little information and when I have spoke to other doctors and nurses, they have had no idea about it! So I turned to Dr Google (which generally is a bad idea but can be useful!!) I found a talk by a doctor called Talar Tejirian at the International Hernia Collaboration Symposium held during the 2017 SAGES Annual Meeting in Houston, TX on Thursday, March 23, 2017 on why she uses botox for abdominal reconstructions. Just a warning that this link includes a video and images of open surgery so please don’t click on it if you could find this upsetting. The video was ok but aimed at surgeons. I couldn’t find anything patient friendly by the NHS or other people who have been through this. Hence my reason for this post.

I can only describe my own experience of this, and I have no idea if this is typical or not, so please do chat with your doctor if you have questions and let me remind you again that I am not a medical professional. Also I will be honest with how it felt and talk about the size of needles. I do this because I wish I could have read a patient’s experience beforehand. But if you are nervous and don’t like this sort of thing, then you probably should skip the rest of this post.

hernias and botox for abdominal reconstruction

The procedure

The appointment was for 4 weeks before my surgery date, the doctors told me this is because the Botox is at it’s most effective 4-6 weeks before the surgery. They use the botox to paralyse the abdominal muscles. They do this because when muscles are working, they contract, by paralysing them, it makes them long and loose. And so when they do the surgery, they are easier to manipulate and stretch to cover the hole where the hernia was.

I went into hospital after being told not to eat after midnight and just drink water till 6.30am. We went to the day surgery unit in the hospital and saw the surgical team and then I went down to theatre. It was a weird feeling being in the surgical theatre awake! I have had 8 surgeries for my illness and so been in a few theatres but always knocked out!

I was in a hospital gown and had to remove all my clothes and laid on a bed. Then the surgeon used an ultrasound to find the muscles. There wasn’t local anaesthetic either, so I was a little scared. He injected into the muscle with possible the largest needle I have ever seen!! It kind of looked like a joke needle!

I will be honest, it did hurt. It was a very odd feeling as I felt the needle break the skin and then push through into the muscle. It was a long needle, but also quite thick. I could feel an odd burning sensation as he pushed the botox into the muscle and then removed the needle.

I really had my fists clenched and was trying not to swear as he then repeated this three more times on my left side, before moving onto four injections on my right side. The injections were on the front of my abdomen. If you rest your hand on your stomach with your thumb by your belly button, then the injections were about in line with the little finger.

It took probably 15 minutes in total and once it was done, I walked back to the ward. I felt the effects almost immediately. The muscles relaxed and my hernias extended pretty quickly. Back on the ward, I had a cup of tea and a slice of toast and then was able to return home.

After the procedure

It’s now been four weeks since the injections. My surgeon told me to expect for it to significantly worsen the hernias. He said “you will be cursing my name for the next month!” and he is right! Every day it feels looser. My hernias are sticking right out and I can feel so much movement inside my abdomen. I have spent most of the last three weeks resting, either sitting or laying down as it is incredible painful to be stood up.

I am using the hernia vests and support garments that I already had, but have found I need to wear two or three to feel secure. But when I do this, it squashed my ileostomy bag and I have leaks. So it is a difficult balance.

I am taking strong painkillers every day and struggling to sleep through the night. It is very uncomfortable even when I am laid down in bed. I feel like I can feel every movement inside my belly. When I lay on my side, it feels like my insides fall to that side! Very weird feelings!

It worsened every day, it isn’t the most painful experience ever, but it is very very uncomfortable even when sitting or laying, and when I am up and about walking or standing, it does feel like all my insides are going to fall out.

I just hope that the benefits during surgery will make all this discomfort and inability to do anything for the past month all worth it.

My next surgery is tomorrow and I am just hoping that it will resolve all my issues and this is the last time I will need to be dealing with hernias and the complications around them. Fingers crossed and I will update after the op.

I would love to hear from anyone who has also had the botox injections for an abdominal reconstruction so do get in touch!

Sam xx

You knock me down, I get the f**k back up again

Hello you lovely people,

Firstly, apologies for not being about for a while, it has been a tough couple of months and I just. haven’t been in the right head space to blog. We moved house on the 13th December which was manic just before Christmas, I left my job at Scope and I got my surgery date, this was all just after us losing our dog Lola at the beginning of December which hit us all hard.

Surgery number 9

So surgery. Number nine. FFS! I can’t bloody believe it. I am just devastated and it has taken me some time to get my head around it. It feels so unfair that this is happening again. I have two parastomal hernias and also then on my left hand side, the muscles have completely given up the ghost. There is a huge hole and it has been incredibly painful and difficult to manage.

Earlier this month I had botox injections into my abdominal muscles. They do this to paralyse the muscles. When muscles work they contract, for this surgery, they want my muscles to be as long and loose as possible. This technique is something I hadn’t heard of before and I couldn’t find out too much about it online. I’ll do a separate blog post to explain it in more detail.

Sam Cleasby blogger

I have to admit that the idea of yet another surgery has hit me hard. I’m angry. It has taken a while for me to even say those words out loud. The feeling of sinking back into a bad place, it all just felt too much. I decided to leave my job as I just felt unable to carry on being in so much pain all the time. I felt useless and worthless and just like a burden.

The bully

It feels like there is a bully standing over me who keeps pushing me down into the dirt. And every time I brush myself off and get up, there he is, pushing me down again. I really started to doubt myself, to doubt my worth in the world. This journey I am on, I started in 2004 when I was diagnosed with Ulcerative Colitis. When I had my first surgery in September 2013, I genuinely believed it would be the one and only and that it would fix everything. How wrong I was.

Now, don’t get me wrong, when I had my large intestine removed and a stoma formed, it cured me of the years of diarrhea and bleeding that had marred my life. My ileostomy bag gave me back so much and I was and am still happy to have it. The fact is that without it, I probably wouldn’t be here. But I really wasn’t ready or prepared for another 7 years of pain, operations and hernias that have made it all difficult but in a different way.

But surgery number 9, are you fucking kidding me?

This is going to be a big operation, I have a specialist who has brought in a specialist! The botox is meant to help as they are putting in a lot of synthetic mesh. It is going to be several hours of surgery and I am scared. Im scared of even stepping through the doors of the hospital. Nevermind going through the operation itself. I am terrified of the pain and the long recovery. I’m scared of it all. I don’t feel brave. I feel overwhelmed.

Sam Cleasby disability blogger

Hamilton

I love the musical Hamilton, and there is a line in one of the songs by Hercules Mulligan; it says “Hercules Mulligan, I need no introduction, when you knock me down, I get the fuck back up again” I must have listened to the soundtrack hundreds of times, but this week, that line really got to me.

I just suddenly thought ‘oh my god, that’s me!’ I have been knocked down time and time again, but every time I get the fuck back up again.

It’s not easy living with chronic illness and these ongoing complications of muscle problems and multiple hernias have certainly knocked me down a lot. And honestly, there have been times when I was down in the dirt when I thought I couldn’t get back up. That I was done in and had no more fight in me.

But you know what? As I sit there bloodied and battered, battle worn and exhausted, I use that time to sit back and look around me. I stop. I take a breath. And I see my cheerleaders, my support system, my friends, my kids, my husband, my family. All the amazing people in my life who love me. That time when I am down and flat on my arse, I use it to wallow, to heal, to re-centre. Sometimes I feel sorry for myself and sometimes I cry. Sometimes I am angry at the amount of time I seem to find myself sat in the dust.

But you know what I do then?

I get the fuck back up again.

Sam xx

Hello my old friends – surgery update

Well, it has been a while! I have had a break post surgery as things are not going too great for me and I just haven’t had the energy or headspace to write about it here. You may have caught up with me over facebook, instagram or twitter in the past couple of months. But now I am back and blogging.

Surgery update

So what has been going on with me and my health? Well after my last surgery in April this year, I really hoped that it would be the final one. I followed the rules, no lifting, no smoking, lots of rest. But unfortunately things didn’t go as planned. I had an abdominal reconstruction, they fixed two hernias and moved my stoma again.

The hernia on my left side has come back with a vengeance, my abdominal wall has completely opened up. From my hip bones to my ribs, it is all open and I have a large lump and swelling where my insides are pushing everything outwards.

I also now have two hernias either side of my stoma that cause a big swelling and blockages. The worst thing is the constant pain, it is incredibly painful and a huge struggle in day to day life. My stomach looks awful, it is so wonky and lumpy and the swelling is pulling my scars in all different directions.

I am having to wear 2 or 3 hernia supports all the time or else it feels like my insides will tumble out. I am taking a lot of pain killers, paracetamol, codeine, nefapam and naproxen. This is affecting me so much, it is hard to do very much when you are off your face on pain meds! If I have to do anything, then I have to skip meds, so I am either drugged up or in a lot of pain.

Self esteem

It is really getting me down, I am just devastated. I honestly thought last year would be the start of a new life and for it to be just another hurdle is shit. I can’t see a happy future now, just surgery after failed surgery, pain, inability to live the life I want and the burden on those around me.

My self esteem has taken a huge knock. It is hard to feel confident when my body looks so different. I don’t feel beautiful or sexy, I feel like an utter mess. My clothes don’t fit, you can see these big lumps through clothes. I have taken to wearing huge dresses to try and cover it all up. I keep trying to make an effort in my appearance, but it feels like a waste of time when I just feel horrible. It feels a bit silly to worry so much about appearance when everything has gone to shit, but it really has knocked my confidence.

What’s the plan?

So what’s the plan? Well I have had CT scans and seen Mr Adam, the abdominal specialist and even he feels a little stumped. He is taking my case to a group of surgeons to try and come up with a plan of action.

On the left side for the huge hole, he wants to put in a synthetic mesh. But it’s a big job, forgive me if this description isn’t very medical (or even fully accurate!) it was a lot to take in! He said I would need to go in for botox injections pre surgery to paralyse the muscles in my stomach. Then during surgery he will put a large mesh into the muscle and then wrap around my hip bones to keep it in place.

But on the right side where my stoma is, he is unsure on the best course of action. This is why he is meeting other surgeons and specialists to make a plan. What he has made clear is that it is a huge surgery and not to be taken lightly.

PTSD

I don’t know what to say about it. I have developed PTSD from the surgeries and the mere thought of being in hospital sends me into sheer panic. My chest hurts, I can’t breathe, I start sweating. Just writing about it here has made me cry.

But I am in so much pain. I have been signed off work and I am not living much of a life right now. I can’t carry on like this, so I have to go through with another op. But I am so afraid. Im scared of the pain, the hospital stay, of not making it through the op, of the recovery, the burden to others. Mostly of it not working and going through all of this and being in the same situation this time next year.

So there we are, the update I have been dreading. I am going to be back and blog regularly now so I won’t leave it so long next time.

Peace and love

Sam xx

My 6 week post surgery check up

This morning, I headed back to hospital for my 6 week post surgery check up. I had two hernias fixed in my last surgery, a parastomal hernia resolved, my stoma resited and abdominal reconstruction. It was a big operation and was my 8th surgery since 2013.

6 week post surgery check up

I’d been warned that it was going to be a very tough recovery. That I would need 2-3 months off work and to prepare for a lot of pain. Its been a tough 7 weeks but I am really pleased to say that everything has gone well and my recovery is right on track! I am still swollen and have some hard lumps of scarring but they are happy with the results.

The check up was with one of the surgeon’s team. The doctor examined my stomach and talked through all of my concerns. I felt very nervous that he was going to find some complications but he said I was doing better than expected. I am feeling really relieved. Thanks to Timm for driving me and being there . We talked through all the questions I wanted to ask before so that he could remind me if I forgot once I was in with the doc. If you don’t have someone with you at your appointment, I suggest writing a list as it’s easy to forget!

Timm and Sam Cleasby 6 week post surgery check up Sheffield northern general hospital

Back to work

I am signed off work till the end of June and they’ve suggested a phased return to work from July. I’m both nervous and excited about this. I work for the disability charity Scope and they have been so supportive to me during this time. They haven’t put any pressure on me and have supported me in taking the time I need to recover.

I also present a radio show on BBC Radio Sheffield on a Saturday morning from 10-12 called Nowt So Strange As Folk. I returned to that a couple of weeks ago thanks to Timm being my chauffeur. It’s only 2 hours a week but it’s mentally tiring. I have been coming home on a Saturday and spending the rest of the day in bed!

Exercise after surgery

We have discussed my recovery moving forward and at the 6 week post surgery check up. The doctor said they were happy for me to start an exercise regime. I am joining the gym and will be seeing a personal trainer as part of my physiotherapy.

I stopped smoking in February this year in preparation for the surgery and I’m happily now a non smoker. This is so important as there’s a link between smoking and recurrent hernias.

I am also aiming to lose weight and get much stronger. I’m currently classed as overweight and this can mean I’m more likely to get another hernia. It’s been an awful 6 years of recurrent hernias and so I need to do everything I can to reduce my risks. I’ll blog more about the exercises Ill be doing after I see my PT in July.

Mental health

I have been quite up and down mentally, it’s really tough to be stuck in bed unable to be independent. And even more so when it’s the 8th time in 6 years! I have slipped into depression before after surgery and so it’s at the forefront of my mind to take care of my mental health.

One thing that has been difficult is that I am reacting to certain things that make me feel right back in that hospital bed. The other night I was flipping through the TV channels and I happened upon a real life hospital show. .I paused and watched a patient in a bed writhing in pain. The doctors and nurses were rushing about, the machines bleeping, and I felt my chest tighten. I felt jittery and panicked and a fear washed over me. I was sweating and struggling to breathe.

A similar thing happened the other night. My ileostomy bag leaked in bed. It was only a slight leak onto my skin, I caught it before it went on my sheets. So I cleaned myself up and changed my bag and then saw a air freshner spray that had been in my hospital bag. I sprayed a couple of squirts to cover any poopy smells in my room. That smell of the spray immediately took me back to being in the hospital bed and I went into panic mode again. After talking to a friend I recognise that certain sights, sounds and smells are triggering me. This is common with people suffering from PTSD (Post Traumatic Stress Disorder).

So though I am feeling positive for the future, I am aware that my mental health has been affected by all of this. I have started back on my antidepressants and I am really focussed on looking after myself. From meditation to self care, planning to spend time and energy on myself is really important.

The future

How does the future look for me? I don’t know. I have to hope that it will be surgery and complication free. The thought of going through all this again and ending back in the same place is just too much to bear. I don’t think I could cope with more surgery and to be honest I don’t think they would consider another hernia repair as I have had so many now and my abdomen is such a mess.

But I cannot think about the worst as it would make me spiral. I need to think positively and plan for success. My goal is that by next year I will be strong enough to learn how to kayak. I want to spend the summer camping with Timm in our campervan, hiking, wild swimming and kayaking. It is a dream right now, but I am going to put all my effort into building as much core strength and muscle as I can. And all I can do is to try my best.

Peace and love

Sam x

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

Surgery number 8

On 30th April, I went into hospital for my eighth surgery related to IBD. It was a big operation to repair a parastomal hernia and an incisional hernia. Also to resite my stoma and to deal with all the adhesions in my abdomen.

I was terrified about it, believe me, it doesn’t get any easier with experience of surgery. If anything it is more scary to know what’s coming.

We headed in for 7am and checked in, after waiting for a couple of hours I had bloods checked. Then I met with the stoma nurse to mark me up for the new stoma. Next was meeting the anaesthetist and registrar and going through the consent forms. Finally it was time to go down to theatre.

I spoke at length to the anaesthetist about my fears about pain relief post op due to past experiences. She was wonderful and put me at ease. We went through her plan to leave me on epidural for longer and what would be put in place after that. It really helped to calm my nerves.

Sam Cleasby in Sheffield Northern General Hospital ready for parastomal hernia and bowel surgery

The surgery

Timm walked with me to the theatre doors, kissed me goodbye and left. I was so wary and fearful, I honestly thought this could be the one where my luck ran out. I told him I’d written a letter just in case I didn’t make it, that I loved him and to tell my babies how much I adored them.

Into the theatre, they set up my epidural (in on one attempt thank god! Last time it took 5 or 6 goes!) and off I went to the land of nod.

The surgery took almost 5 hours, the adhesions were terrible. It took a lot of time to pick everything apart. They repaired both hernias and moved my stoma back to my right side. Then put a lot of biological mesh into my abdomen to try and strengthen it all in place.

I woke up and felt very hot and sick, I vomited a few times and was quite out of it. Then I was taken to the High Dependency Unit (HDU). I was very dehydrated. They said they had to push 7 litres of fluids through me during the surgery and that my lactate levels weren’t right. They called Timm who came over and was with me though if I’m honest I don’t really remember too much.

In HDU you’re in a room alone and have a one to one nurse. There were tubes and wires everywhere and lots of machines, it was quite frightening! I had two cannulas in my hand and an arterial line, heart lines stuck all over my chest and back. Plus oxygen mask, drains in my tummy, the epidural and a catheter in my bladder. I could barely move for tubes and wires!

Arterial line in hand after surgery parastomal hernia

Everything went a bit wonky!

Throughout the night I was pretty out of it. But the HDU nurses were amazing and looked after me so well. I had a few tears through the night just from fear and feeling overwhelmed but got a couple of hours sleep and when I woke at 7am I actually felt ok! They got me out of bed and into a large chair a bit like a lazy boy. Timm came in first thing in the morning.

Then everything went a bit haywire. And I don’t remember a lot apart from being so scared.

I started shaking a lot, my muscles all cramping and my chest hurt and I felt like I couldn’t breathe. My mind was spinning out. I felt like everyone was against me and they were going to make me have another operation. Feeling frightened but totally out of it, not knowing what was real and what I was imagining.

At first I thought I was having panic attacks but I couldn’t gather my thoughts to figure anything out. I was wild and not myself.

The staff were so kind, patient and supportive though and Timm was there every second. He started panic googling and realised all my symptoms were potential side effects from Fentanyl which was in my epidural. He asked the nurses about this, they agreed I was probably reacting badly to this and they changed the epidural.

Sheffield Northern General hospital high dependency unit after surgery

Reactions

Once it was taken down I was still reacting badly but they said it takes hours to go out of your system. During this time I used meditation, mindfulness and visualisation to calm myself and get on top of it. I haven’t quite processed it all. One visualisation in particular had a profound effect on me that was physical as well as mental. But I’ll write about this in another post.

All the terrifying symptoms slowly stopped and I could get a hold of myself. All day had been so scary, I was just losing my mind and it was terrifying. I can’t thank Timm enough for being there every second even though he was as scared as I was! He was calm, loving, patient and thought outside the box. Playing gong sounds to help meditate, going through mindful body scans or just holding my hand and repeating positive mantras. I can’t recommend getting in touch with your mind body connection enough. It’s not airy fairy or hippyish, the science behind it is real and fascinating. Again, I’ll do another blog post about that.

Onto the ward after surgery

The following day I went onto a normal ward and the anaesthetist visited every day along with the pain team. They followed through with their plans keeping me comfortable at all times. I’ve had poor experiences of pain relief on the wards post surgery. All I can say is that being vocal and firm in my needs paid off. It’s certainly not about being rude. But you need to be a responsible participant in your health and recovery. Making your needs clear and insisting on proper care is vital to receive the best support.

In the past I wanted to be a “good patient” and not bother the nurses. I didn’t want to be demanding or complain but it meant I wasn’t giving them the opportunity to understand my needs. It’s so important to speak up and explain your needs, and if they aren’t being met, ask for explanations why.

You deserve proper care and if you are left in pain or your treatment isn’t being delivered then your recovery will be longer. You’re more likely to experience complications and it can have such a negative affect on your mental health.

Coming home early

After 6 days, I was off the epidural, my surgery drains and catheter were removed, stoma working and off all meds apart from pain relief and so they asked if I’d like to go home. I jumped at the chance! I hate being in hospital and I know I recover better in my own bed.

Coming home after surgery Sam Cleasby Sheffield hospitals

It’s been a tough week at home. Helped along by lots of pain killers and the love of Timm, the kids and the doggies. I’m so glad to be here. I’m still very emotional and tearful. It’s only been the past few days where I have felt more like myself and up to visitors. The new stoma is working well. My old stoma site is still open and being packed daily to heal from the inside out. And my 48(!) staples have been removed!

Thank you

We have been overwhelmed by the lovely messages of support. Though I haven’t replied to every one, I have read them all and thank you so much!

A huge thank you too to our amazing friends who have been so lovely. Cooking for us, helping out and just being there for all of us. And thank you to my aunty Jenni for the most amazing hamper!

It’s been tough as we havent got a lot of family support. My sister lives in Australia and though she is always there to chat, especially through the night when everyone here is asleep, she’s not here to hug or to visit. Timm’s sister and dad live in Lanzarote. But family doesn’t mean blood. Family are those who are there for you and love you and so in that case, we are very lucky.

My recovery is going well but I’m still very very tired. I’ve been told to try and walk a little every day. Yesterday we went to the shops for an hour, I then slept all afternoon! We also had a trip out at the weekend to collect our new campervan so I’m very excited for that!

As I said, I’m still quite fragile emotionally, very tearful and very tired. I’m really pleased with my progress but I still have a long way to go.

I just hope and pray that this will be the last ever surgery as I really don’t think I can go through this ever again!

✌🏽& ❤️

Sam xx

Post op resolutions

After feeling very scared and anxious about my op tomorrow I thought I’d try and think positively and make some plans about what I’ll do once I am fit, healthy, strong and recovered! So here are my post op resolutions.

1. Travel more!

We love to travel, but this year I want more camping with my boy, fires, outdoors, camper van cuddles and impromptu weekends around the uk.

2. More tattoos!

Just because I love tattoos and don’t have enough.

3. More friend time

Dinners and hang outs and lovely times with my favourite people.

4. Less stress

I have a tendency to take on too much and feel stressed out. Less of this please.

5. Say I love you more

I do it a lot, but I need to remember to tell the people I love often.

6. Spend more time in nature

It makes everything better.

7. Get strong

Walk, swim, yoga, garden, be strong. Oh and I want to learn to kayak!

8. Dance

I miss dancing, I’m a terrible dancer but I love it and I want to spend more time dancing in my kitchen with my favourite boy.

9. Date nights

Dates with my boy. As many as we can!

10. More So Bad Ass

Blogs, videos, reviews, merch. Maybe even write that book!

What would your resolutions be? We are all so different, what makes one person happy might be another’s idea of hell! So I would love to hear about the changes you would would make to improve your happiness.

✌🏽& ❤️

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