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

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

Sheffield Scope Shop opening

This year, Scope opened a charity shop in Sheffield, their first one in the city. It was an honour to be asked to open the store and to get to go in early and have a scout around the clothes. I got to pick a few outfits and then modelled them to promote the shop.

You can find the shop on Division Street in Sheffield and I have to say I went back and bought a few of the items that I modelled for them. There are some great vintage finds and at a brilliant price as well as loads of books and household things. It’s worth a look if you are in Sheffield.

Sam Cleasby opening a charity shop in Sheffield

You can keep in touch with them by following them on Instagram or just popping in. The manager is friendly and welcoming as are the volunteers working in the shop.

Sam Cleasby opening a charity shop in Sheffield

If you are looking for a volunteering experience, get in touch with them at ku.gr1586138145o.epo1586138145cs@po1586138145hs.dl1586138145eiffe1586138145hs1586138145. They are currently at the time of writing this looking for sorters, shop and till assistants, take a look here.

Sam Cleasby opening a charity shop in Sheffield

It’s the first time I have been invited to cut a ribbon and I absolutely loved it! I also do talks around the UK and Europe about Inflammatory Bowel Disease, life with an ostomy, self esteem, body confidence, disability, parenting and more. If you are looking for someone for your event then take a look through my past events here or get in touch.

Peace and love

Sam xx

Charly Cox – Validate Me at Off the Shelf festival

On 10th October, I was honoured to interview Charly Cox in front of a live audience for Off the Shelf festival in Sheffield. She is a poet whose work has inspired many on instagram and through her books.

Text: Hello my name is Charly Cox and I am code dependent. Will you please, please validate me?

Charly Cox

“Charly Cox’s writing focuses on destigmatising mental health and young women surviving the modern world. she must be mad was the best-selling poetry debut of 2018. Her latest Validate Me explores the havoc the digital hemisphere plays on relationships and mental health and how a life lived online is both liberating and screwing us all up. Funny, heartbreaking and achingly relatable, Charly’s writing has the power to make us all feel less alone.”

Charly Cox poet and Sam Cleasby presenter for Off the Shelf festival Sheffield

Though I interview people every week on my BBC Sheffield radio show, it was a very different beast to do it live on a stage in front of an audience. But I absolutely loved it. Charly Cox was such a great guest and was generous in her answers and in giving a lot of herself. It was an absolute pleasure to chat with her. She also read some of her poetry for the audience and hearing it read out loud was just beautiful.

Charly Cox poet and Sam Cleasby presenter for Off the Shelf festival Sheffield

Validate Me

You can find Charly’s book Validate Me here, it is a collection of poetry that is so relatable to women living in a modern, social media obsessed world.

“This is an account of a life lived online. Swiping for approval. Scrolling for gratification. Searching for connection. From the glow of a screen in the middle of the night, to the harsh glare of the hospital waiting room, Validate Me is a raw and honest look at the highs and the lows of a digital life. The new voice of a generation, Charly’s words have the power to make us all feel less alone.”

Head over and follow Charly on instagram today. You can find out more about events and talks I am part of here.

Peace and Love

Sam xx

Henderson’s Relish – Strong and Northern

Henderson’s Relish is a Sheffield staple. It is a vinegary relish that goes on pretty much any foodstuff and beloved to the Steel City. They have just released their second cookbook – Strong and Northern and they asked lots of people who love Sheffield to be a part of it by sharing a little anecdote about Hendo’s. And I was proper chuffed that they asked me!

strong and northern cookbook Hendersons relish

The launch was last night and it was great to meet some of the Sheffield heroes in the book and hear speeches by Steve Edwards and Joe Scarborough.

Hendersons relish strong and northern cookbook

Sheffield is my birthplace and home and I am immensely proud of my city. To be a part of this book with so many amazing people is truly brilliant and I feel really honoured.

You can buy the Strong and Northern cookbook here from the Henderson’s Relish website.

Peace, love and Hendo’s

Sam xx

Sheffield Makes Music

On Thursday 26th September, it was Sheffield Makes Music, an event by the University of Sheffield and BBC Music Day. I was invited to host the main stage and help celebrate the amazingly talented and passionate artists of Sheffield.

They say “The reasons we participate in music are endless, varied, sometimes mysterious, often confusing, always rewarding. But we do it. We love it. We are it. And once again we celebrate it on BBC Music Day.”

Sam Cleasby hosting BBC Music Day Sheffield Makes Music 2019

There were some wonderful artists performing all over Sheffield. It was an honour to be a small part of the day. Sheffield’s poet laureate Otis Mensah also hosted his hand picked artists in his Mash Up House in Orchard Square. Seeing him perform with Sheffield’s finest Steve Edwards was the highlight of my summer.

Though I present on the radio and have done talks all over the UK and Europe, it was very different to be on a stage all day introducing the acts. But I loved it and was so chuffed to be asked to be part of the day.

It was tons of fun and though I was pretty scared beforehand, it was a great day and I would love to do more stuff like this!

Sam Cleasby hosting BBC Music Day Sheffield Makes Music 2019

I have done talks all over the UK and Europe and it was great to do some live stage work, I have really pulled back on doing talks over the past year due to my health. But I hope I will be able to pick up a little more in 2020. You can take a look at some the past events and talks I have done here.

Sam Cleasby hosting BBC Music Day Sheffield Makes Music 2019

Sam xx

Lola’s last walk

Thank you so much for all the kind messages after I shared that we may be losing our darling dog Lola. On Tuesday, we took her to the vets and made the heartbreaking decision to have her put to sleep.

Lola was our dog for 12 years since being a tiny pup. She gave us the most amazing life, filled with joy and love. And in her final days, we made sure we repaid her kindness. We tried to give her the gentlest time and all our love and respect.

Saying goodbye

Our son left for Uni this year and we knew we needed to give him a chance to say goodbye to her. So we drove her up to his Uni house and we all had a bit of time together.

We bought her a McDonalds on the way home!

dog eating burger

We made sure the kids had time to say goodbye to our gorgeous girl.

girl and dog
boy and dog

Lola’s last walk

On Tuesday morning Timm and I took Lola for her last walk. It was a beautiful sunny, winter day. She slowly trotted around the park with us and we took in the last precious time with her. We then took her to the vets who confirmed that her blood tests were very bad and she didn’t think she would have long. She talked to us about options and her fears of Lola going downhill very quickly. She was bleeding in her tummy. We agreed with the heaviest of hearts that putting her to sleep was the kindest option. It was devastating but it was incredibly peaceful and she passed away laid in our laps, looking in our eyes and being told how much we love her.

dog walking in the sun

Then we had to make the decision of what to do with her. I am thankful a friend had recommended a Pet Crematorium who had looked after her pet when they died. She said ‘his name is Chris, just give him a call and have a chat’. We did and he was so caring and kind that we decided to take Lola to him at Old Flatts Farm.

Old Flatts Farm Pet Cremation

We pulled up to a beautiful farmhouse that Lola would have adored, and took her into the chapel of rest where she was placed in a basket. The room was lit with candles and was peaceful, we were given as much time as we needed with her. It was a lovely room and it was so nice to have the space and time to say goodbye away from the vets.

Then we went into Chris’ office where he encouraged us to talk about Lola and our relationship. How we got her, our favourite memories, the times we had together. He told us about how he started the business after his own dog died and he just wanted to make somewhere that gave pets the service, respect and goodbyes that they deserved.

We weren’t rushed, there was no hard sell, there was no pressure. It almost felt like speaking to a therapist! We both cried and were upset but Chris was warm, caring and professional and we left an awful event with some peace and the knowledge we had done the best for her.

I received Lola’s ashes back in a beautiful cardboard tube wrapped in dried flowers. We also got a condolences card with some forget-me-not seeds and chose to have Lola’s paw print in clay framed.

dog cremation South Yorkshire
dog memorial

What next?

I can’t recommend Old Flatts Farm Pet Crematorium enough. This isn’t about me trying to advertise them (and it was of course fully paid for by me, this isn’t some some of blog gifting) but I am just so grateful that we were told about this service and I want to pass that on. I had no idea what the process was after death with pets. We have had a cat and a chihuahua die before. But due to their size, and where we lived, we buried them ourselves. But Lola was a larger dog and we are moving house next week. So the idea of burying her seemed difficult due to size and also we didn’t want to bury her in a house we were leaving!

It was such a beautiful way to deal with her after her death. Chris has so much compassion and care and is very easy to talk to. He made an awful situation just a little easier. And I do have to say that his service (including the paw in the frame) was cheaper than the vet service.

After

The house is now very quiet. We have another dog, Lemmy, and he seems confused and unsettled. We all keep crying over small things, noticing her dog bowl being moved, finding an old toy, seeing her lead. But we are talking about her and we will never forget her.

Some people say “it’s only a dog”. They are wrong. Lola was our family, she made us laugh, was there when we were celebrating, she was there when we cried. I told Lola things that Ive never told anyone else. I have cried into her fur after surgeries when it all seemed to much, I have whispered my pain to her, told her my secrets. She has forced me to get out of the house when I was depressed to walk her. And I know she has had a similar relationship with Timm and all three bambinos.

Lola was the best dog in the world. And we will never forget her.

Sam xx