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Finally, an update!

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

Where to begin?

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

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

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

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

The news hit me hard

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

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

But now here we are. And I am ready.

What happened next

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

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

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

Positives

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

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

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

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

Visualisations and reality

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

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

Kayak on lake

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

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

Peace and love

Sam xx

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

Smoking and Hernias – do you know the connection?

I know this isn’t a popular thing to say, but I do love smoking. I know how bad it is, I know it’s stinks and is dangerous, expensive, stupid etc etc etc. But I love a good old ciggie! I have smoked since I was about 14. I’ve stopped several times, didn’t touch them whilst pregnant, breastfeeding and after surgeries. But every time I go back to it because I thoroughly enjoy smoking. But learning about the connection between smoking and hernias has shocked me into giving up the fags.

I saw my new surgeon Mr Adam in February. He told me I have a very high risk of complications during the surgery, around 75%! Mr Adam said I could drop that risk by 10% if I stopped smoking, even just changing to the e-cigarettes. Also he told me that there is a very real link between smoking and recurrent hernias. I was devastated to find this out.

On the 6th of February I had my last ever cigarette! I bought an e-cig and that was really useful to get me through the cravings of nicotine. Then I stopped using that in April and now I am officially a non-smoker.

Missing the smoke

I have to say that it’s still not easy. It’s been four months since I had a cigarette and 6 weeks since I used the e-cigarette. I still think about it all the time. I would say around twice a day I really crave a cigarette. If it weren’t for what I have learnt about the connection between smoking and hernias I would have started again.

Sam Cleasby ostomy bag stopping smoking hernia

Smoking and hernias

So smoking and hernias, what is the connection? After getting numerous hernias over the past five years since I started on this surgery journey for the Ulcerative Colitis and having multiple hernia surgeries I am so disappointed that the link between smoking and getting an hernia has never been pointed out.

Smokers develop hernias at a higher rate than nonsmokers. Smoking causes a decreased rate of collagen formation. This is due to the effect of nicotine, which weakens the abdominal wall. Patients who smoke are four times more likely to develop a recurrent hernia as a result of the effect smoking has on wound healing. This information comes from the Hernia Centre.

Cigerette smoking and risk of hernias

I think this is something that should be told to every single smoker who has abdominal surgery. Getting my stoma and ridding myself of the effects of Ulcerative Colitis saved my life. It made it so much better. But then having 6 hernias over the past five and a half years has ruined it all. The hernias have stopped me from doing so much, I’ve had repair after repair. Months of pain, so many tears and honestly, I feel devastated. I could have been doing something that has caused the recurrent hernias.

The cost to the NHS

It’s not even just the personal effects, I have had multiple surgeries to repair these hernias. The past two surgeries have been high risk, long, complicated surgeries. I’ve spent time on the HDU and weeks in hospital. How much does that all cost?

I have had to have so much time off work, my kids have suffered. My whole family has had to struggle through having a mum who is in constant pain and then having operations and then months of recovery. And maybe, just maybe, I wouldn’t have got these hernias if I had stopped smoking earlier. And I would have done, if I had been told.

I accept my own responsibility in this. Of course I knew smoking was bad for me. But it was in that general way that we all do things that aren’t good for us. Some smoke, some drink alcohol, take recreational drugs, eat too much red meat and sugar etc. If I had been told that skoming has a direct link to the recurrent hernias that have ruined the past five years of my life, I would have stopped.

I am not preaching, I’m not trying to tell anyone what they should do, but I wish someone had told me about this after my first surgery in 2013. So I just want to pass the favour on so everyone has the information and can then make their own educated decisions.

Sam x