We are pushed through life to think about what matters, about how much money we have, how much stuff. We ask kids what job they want to do from being so young and as adults, its the question you ask of a stranger when you meet. We live in a very materialistic world where our worth is based on how much we have.
But today as I lay in bed feeling ill and sorry for myself, I was thinking about what actually matters. It is, of course, people. Our relationships with others. Our family and friends. We all know this but sometimes it feels like we forget it in our busy lives.
Today, my hair is matted and greasy. I’ve had a tough few days with what I think is a partial blockage of my stoma. This is on top of the daily pain I have had every day since my surgery in February. And I was thinking back to my recovery from that last operation.
At my lowest when I had nothing left, no energy, pain, failing kidneys, the thing I had that mattered the most was an incredible team of friends and family around me. It didn’t matter what clothes I wore, what car I drove or how much money was in my bank. What mattered was the kindness and love of my tribe.
My friend Hannah heard from Timm that I had been upset about my hair. After three weeks in HDU and on the wards unable to wash it, it was greasy and knotted. I’d had it tied on top of my head and it was matted and dirty. She came in to visit me and brought supplies! Shampoo, detangler, the works. And she helped me into the bath in hospital, and washed and brushed my hair. She wasn’t embarrassed or put off by my bruised, swollen and bleeding body. She didn’t judge me or look away.
She helped me undress, get in the bath and was so gentle and loving. I cried as she took my bobble out and my hair was so matted it barely moved. But it was OK, she said it was going to be fine.
In that moment, and now looking back on it, I knew how lucky I was to have her and other friends who were there for me.
There was so much love and support. Friends who just came and sat by my bed, those who did laundry, who cooked for my kids and took them out for days to take their minds of things. My aunty who trawled shops to bring me several types of yoghurt because after 3 weeks of not eating, it was the first thing I fancied! My husband and friends who found stocks of long ice pops in February so I could suck on something to soothe my mouth when I couldn’t eat. More people than I can name here came to me in my time of need and were just ‘there’.
My friend Tania who came and massaged my hands and arms because she instinctively knew I just needed some human touch.
My friend Caroline who listened to me weep and tell her I couldn’t get through this. Who just cried along with me, told me it was all shitty but we’d get through it.
My friend Sarah who stuck sweety red laces up her nose so she looked like she had an NG tube too and made me laugh. Then went home and looked after my family.
My kids who were terrified. I will never be able to make it up to them. They visited and were scared. Scared to touch me, scared of the tubes and wires. They were and are troopers who have seen more hospital wards than any child should.
My husband. Who I dont even have the words for. He is everything. He never gives up on me, never loses his patience, and is always there. 12 hours a day he sat by my bed. He’s seen it all and been through more than I have as I don’t remember half of it.
I suppose my point today is, that I am incredibly grateful to my squad, but also that people matter.
Be the kindness you want to see in the world. Cherish the ones closest to you. Nurture your relationships and love hard. Say ‘I love you’ to the people you love. Pick up the phone and call your friends. Give love out into the world and it does come back to you.
Life is tough this year, we are all suddenly faced with illness and death in our day to day lives. But as we head into Christmas and all the pressures of spending and buying expensive things, remember that the most important thing, the thing that matters the most are the people you love.
2020 has been a ridiculous year, unprecedented as so many people have said, and I think it has changed how so many of us feel about ourselves and our lives. And we are no different here in the Cleasby household. I said a couple of months ago that my big news was that I was going to University this year at the grand old age of 39. But also my husband Timm has decided to do it too! He is 48 and will be heading to do a degree in film.
We don’t do things by halves do we?
A series of unfortunate events
Lockdown was a bizarre experience for everyone. For us, it was another trauma in a series of tough events. In December, our beautiful 12 year old dog Lola got cancer and died, just a week before we moved house. So Christmas was two weeks later amidst boxes and the confusion of not quite knowing where everything was. I then ended up leaving my job that I absolutely loved, but had gone totally awry. I was incredibly poorly, awaiting another major surgery which happened at the beginning of February.
The recovery from this surgery was a nightmare, I had complete Ileus where my bowel stopped working for three weeks and ended up with an NG tube (Nasogastric tube) and on Total parenteral nutrition (TPN). My kidneys began to fail and I nearly died. It was a very difficult time for us all as a family. For weeks I was unable to do anything, the muscles in my arms and legs are wasted and I was left weak and exhausted from the kidney issues.
So 7 weeks later as I was just starting to feel a little bit human, it was a total shock to find the whole country going into lockdown! I hadn’t been able to leave the house for a couple of months and then suddenly we weren’t aloud to leave the house and thousands of people in the UK were dying. I was terrified. Due to Covid, I also lost my radio presenting job and our photography business was severely affected as we couldn’t shoot anything. All just as we had taken on a bigger mortgage.
Too much to bear
To be honest, it all just felt too much to bear. It was like everything was going wrong for us and it hit us both hard. My husband is a total workaholic, and all of a sudden, he had no work at all. At first we struggled with knowing what on earth to do with ourselves. We both felt very down and like we had lost part of who we were with the loss of work.
But there was nothing we could do about it and so as we have had to do so many times before, we tried to find the positives in the situation. We were both healthy (ISH!), we had our kids with us safe and well, we had a beautiful new home and though we desperately were grieving the loss of Lola, we had our chihuahua Lemmy to hug and keep us going. We also talked about how many times after surgery, I get back to things too quickly and don’t give myself enough time to heal, so this enforced rest and downtime could be a blessing in disguise.
We walked a lot in the park, we learnt to bake bread, we bought a blow up hot tub and spent a lot of time chilling in the garden. We played games with the kids, read a lot, watched a lot of movies. There were things that needed sorting in the house that we wouldn’t usually have had time to do, so we decorated and sorted the bathroom and fixed up our camper van. We also started plotting.
If I won the lottery…
One day I said to Timm “If we won the lottery, I would go to university. I never got to go as a youngster and I feel I missed out”. He questioned why I would need a lotto win to do this, and I said that it would mean I couldn’t work full time and study. But as we talked about it, it started to feel more and more possible. I looked into it and saw that as I didn’t have Alevels, the uni would consider my life experience as part of my application.
I began putting together a portfolio which was scary but fun, the worry of others seeing my work nearly got too much. I thought about the experience I had and realised it was more than I had first thought. I knew that I wanted to do art, but I also knew I wanted it to lead somewhere where I could help people. I read up on Art Therapy and just felt that I had found what I was looking for.
During this time, Timm told me how excited he was for me, but that he did feel a little jealous! So I suggested that he do the same! He is a really creative person and has run an arts collective and a photography company for the past ten years. But he wanted to know more about film and have the time to gain new skills. And so he did!
Next week we both start university at the ages of 39 and 48. Something neither of us ever thought would happen and if I am honest probably wouldn’t have happened without the pandemic.
Often we get so caught up in the daily grind of life, in habits and fall into a groove of just plodding on. And when something happens to blow life apart it can shake you free of those binds to rise up and look at what you actually want from life.
We were happy before. Last year he was running the photography business and ran a music festival in Sheffield and I was working for a charity supporting disabled people as well as having my own radio show on Saturday mornings. Life was good. But that series of events from December through till July just changed everything.
We have had so many ups and downs, nine surgeries in the past 7 years and so much uncertainty around my health and there were moments where I felt like this pandemic was going to push us over the edge. But in true Cleasby style, we have picked ourselves up, dusted ourselves off and tried a new path.
We are both nervous about taking on uni later in life and carrying on running businesses and bringing home the bacon but we have always said that we would rather regret the things we have done than regret not doing them. Who knows where our new paths may take us, but I couldn’t be happier to be facing it with my husband together.
Thinking of others
I know I am super lucky to be in this position, I don’t take it for granted that I have this opportunity when so many do not. It is easy to say we should all look for the bright side, seeking out a positive even when everything is shit but not so easy to do. But what a life with chronic illness has taught me is that nothing is guaranteed, we never know when this life we have could be taken away from us. I have learnt that I need to say yes, to be brave, to try the things I dream of even if I may fail.
The pandemic is simply awful and my heart goes out to everyone who has lost a loved one, has been ill themselves and everyone who has missed time with family and friends, who has had their care cut, who is lonely and struggling.
There is a quote that I often use and it feels apt today.
Happiness can be found even in the darkest of times if one only remembers to turn on the light.
I hope you can find the light switch, peace and love,
https://www.sobadass.me/wp-content/uploads/2020/09/pandemic.jpg6281200samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2020-09-16 20:47:542020-09-16 20:48:00How the pandemic has changed my life
I don’t want this to sound twee, but today I am writing about gratitude. Finding the things in your life to feel grateful for even when everything feels rubbish.
Now don’t get me wrong, there are times when we all need to wallow in that swamp of woe. We need time to feel those feelings and accept them. It is healthy for us to look at the negative stuff going on around us. Sometimes we all just need to have a big cry/scream/shout/snotty tantrum.
Also there are times when we just can’t ‘pull ourselves together’. I have been in that pit of depression where I could barely hold my head up, let alone start searching for the things in my life to be grateful for.
But sometimes, it can really help when we are feeling down and in the shit, to think about the good things in our life.
At the minute, I am still trying to come to terms with the traumatic experience I had during and after my last surgery in February. And it is easy for me to slide further and further into the quicksand of despair. I find myself instantly taken back to certain moments around my recovery and the panic hits me. I put on a nightie and all of a sudden I was in the moment of wearing that nightie and having an NG tube pushed down my nose and throat. I swear I could feel it and my chest tightened and I couldn’t breathe. I burst into tears. All because of that nightie.
I sat up in bed in the middle of the night last night and I just was back in the moment where I was vomiting litres of bile and my kidneys were shutting down. I thought I was going to die and all I could think was about the kids not having to see my dead body in the house. And I am there. I have time travelled back to that point. It is terrifying.
So I have been trying to avoid thinking about it. To not remember being in hospital. Because it is scary and it hurts. I mean, it’s not working! I have no control over these memories that pop into my head just to scare the pants off me.
So instead I am trying to remember the good bits. As small as those bits were, they were there. And it was all about the people around me.
My friend Hannah came to visit me in hospital, we have been friends for almost 30 years. She had heard that I was upset that my hair was dirty. I’d not really been able to wash properly, I had bed baths but couldn’t wash my hair. She came to see me and helped me to have a bath. She washed my hair like I was a child. I was so vulnerable and weak, I couldn’t do anything for myself. Weirdly, now I think about how laid bare I was, but she didn’t make me feel embarrassed. It was so loving and sensitive. I am truly grateful to her for being there for me in such a time of need.
I am grateful to my friend Caroline who visited me at my lowest and my worst. Who allowed me to cry and tell her my fears without judgement. She held my hand and let me be. She has been there through every surgery, every recovery and every time has kept me going. She has seen the worst of me and still loves me. She is my soul mate.
I am grateful to Sarah who not only has looked after me, but after my family. She cleaned the house, cooked meals for the family and took the kids out to take their minds of it. She visited me in hospital and at home and has been so kind, patient and hilarious. It meant the world for her to be thinking of Timm and the kids in a time where I didn’t have the energy to. She came and just laid in bed with me when I came home. No expectations, not a guest just a friend to be there.
I am grateful to Tania who came to see me in hospital and remembered that what we all need the most is human touch. She came and massaged my hands and arms, not put off by the tubes and wires that were everywhere. She reconnected me to life, to the world by massaging my skin and holding my hands. She went through meditations and breathing with me, teaching me to visualise my pain and fear.
I am grateful to my sister Lisa who lives in Australia and called me, messaged me every day. She had to deal with the stress of knowing how unwell I was and being so far away. There were so many days where I was so ill, so out of it that I couldn’t speak to her or reply and I know how tough that must have been. But knowing she was there and her constant love made all the difference.
I am grateful to all my WhatsApp crew, there was a WhatsApp group of loved ones who sent messages from all over the world. Who made me laugh, who cared, who were really inappropriate (!) and who made a network of support that I am truly grateful for. I feel lucky to have so many amazing people around me, thank you to every person who visited me, who sent me a message, a phone call, a card. Thanks to my aunties and uncle who came to see me in hospital.
I can’t name every person, but there are so many loving friends and family members who visited, called me or sent messages. And to each and every one, I thank you more than you’ll ever know.
And of course to my husband Timm. I don’t even know what to write. I had nothing and he was there. I was at the bottom, I had nothing left to give and I clung to him, begging him not to leave my side. He sat for hours every day next to my bed. Arriving at 8am and leaving at 8pm. Most of the time I was asleep or crying. He took it all in his stride.
He was there for the tubes going in and out, held my hand through scans and cannulas. He wasn’t put out by the tubes in my nose, the bags of bile, the vomiting, the poo, the central lines. He just quietly held my hand, kissed my head and told me it was all going to be ok.
When I was so weak, when my kidneys were failing and I couldn’t sit up, let alone stand. When I was barely conscious. When they told us it was serious. When I thought I was going to die. He was there. Every moment.
It has been so hard to write all this down. To go back over scary and traumatic memories. But in each moment, I am concentrating not on the horror. But on the person who was there with me.
They say in the toughest of times, you find out who is on your side. And man, I have the best side going.
So I will focus on my gratitude. On the people around me who have held me up, kept me going and loved me. To my friends who have been there at the worst of times. I have had a tough time but my god, I am so lucky.
Sometimes, people ask me how I cope. How do I deal with having been ill for so long, with having so many surgeries. And to them I say it is because I have the best support system in the world. And for that, I am truly grateful.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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!!!
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.
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.
https://www.sobadass.me/wp-content/uploads/2020/03/Screenshot-2020-03-10-at-15.02.39-1.png1052946samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2020-03-10 16:54:062020-03-10 16:54:08Surgery and complications - the month from hell
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.
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.
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!
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.
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.
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.
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.
https://www.sobadass.me/wp-content/uploads/2020/02/Floral-Illustration-CD-Cover-Album-Cover.jpg14001400samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2020-02-05 06:00:162020-02-05 00:23:38You knock me down, I get the f**k back up again
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.
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.
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.
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.
https://www.sobadass.me/wp-content/uploads/2019/12/update-4223736_640.jpg320640samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2019-12-02 14:40:342019-12-08 22:15:02Hello my old friends - surgery update
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!
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.
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 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.
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.
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.
https://www.sobadass.me/wp-content/uploads/2019/06/IMG_20190617_092613_088-e1560853652303.jpg450600samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2019-06-18 11:42:382019-06-18 11:42:43My 6 week post surgery check up
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.
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.
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.
https://www.sobadass.me/wp-content/uploads/2019/05/803008F1-B7F6-4187-B2A4-4D211E4163A4.png788940samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2019-05-22 02:20:112019-05-30 13:36:37What they don’t show you on TV
Here are some interesting links for you! Enjoy your stay :)