woman with NG tube

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

9 replies
  1. Pat Chirgwin
    Pat Chirgwin says:

    Hi Sam! Boy, have you been through the wars! You are such a strong person to have survived so much, and we all appreciate that you put it all on paper for us to read. You make us feel that we are not alone, and I hope you know that we are supporting and wishing you well. As the song went, “the only way is up“ and I’m sure it will be that way for you. Get well soon. You’re in my thoughts and prayers. take care.

    Reply
  2. Tariq
    Tariq says:

    Hi Sam,

    I’m so glad I found your website!

    I’m really sorry you had all these very serious complications post-surgery, but very glad you pulled through.

    I am considering asking for my pouch to be removed after 12 years (I’m 32) and it’s been really helpful to read through your very recent experiences.

    Here’s my background, and don’t worry, I don’t expect a reply at all, especially after the month you’ve had!

    I had a temporary post-surgery stoma in 2007-8, which I really enjoyed after years of acute colitis. I felt like the pre-colitis me again and it was wonderful!

    My pouch (2008) has always been bad – I consider 10-12 times an average day. In 2016 my pouch was exceptionally bad and I begged the surgeons to remove it.

    They persuaded me to make dietary and medication changes. I have cut out Gluten, Dairy, Sugar, Eggs, and am on FodMap. I’m also on immunosuppressants. The restricted diet can be quite challenging and adds yet another source of issues whenever I go out..

    My pouch is a lot better now than it was in 2016 and I’m the wellest I have been since 2006, but I’m still ’emptying’ 10-12 times a day sadly. I am tired of fighting it / being ruled by it and wish I never had it. I want to enjoy life and I want to be able to fully focus on my loved ones, my work and the joys the world/life has to offer without constantly having to devote energies to my pouch.

    I’m at the very beginning of this decision process. I will speak with my family soon and will e-mail the Gastro Team tonight to get the ball rolling.

    Thanks,
    Tariq

    Reply
  3. Derek Horton
    Derek Horton says:

    Sam, thank you so much for writing this. I’m so sorry you’ve been through all this but I really admire the courage you’ve faced it with and the courage involved in reliving the experience again by writing about it so clearly in your blog. It’s great to hear that you’re so well on the road to recovery now, and I hope the writing process is therapeutic for you as well as massively helpful to others in facing up to things. As I’ve told you before here, so much of your experience with hernias, re sited stoma, repair surgery, etc is uncannily similar to mine so I can really relate to it (and sometimes “feel your pain”!). You are such an inspiration and encouragement—thank you so much for all the help you give to others just by telling your story so unflinchingly and honestly. Wishing you well and an end to your pain, and lots of future happiness!

    Reply
  4. Lee
    Lee says:

    I find it very hard to stay positive when things are not working as they should. I need pn every night (3500) mls which is a lot and I’ve only got half a bladder due to surgeon accidentally cutting my urethra whilst operating on removing 7 fistulas. I now have a jujanostomy and another smaller ileostomy. Think it was buy one get one free at the time. I have only 15 cm of bowel left so it’s constantly working. Ice lollies are my saviour alongside a hot water bottle. I don’t eat the water bottle!
    My back has fractured due to osteoporosis and laying in bed so long. In my teenage years that would have been heaven for me but now, it’s a real bind! The pain is unbearable and many times I’ve thought I just want to close my eyes and not wake up but then I wouldn’t know how it ends in coronation st. Seriously, I can’t live like this much longer. I feel abandoned by the nhs as nobody knows who’s doing what because of the complexity of this bloody awful disease. I’ve had uc since I was 13 and now they say it’s crohns. Like the song says, tomayto….. tomatoe, what difference does it make after all these years. Unless your playing scrabble!
    Anyway, sending warm wishes ( from my hot water bottle) to everyone dealing with this god awful disease! Take care!

    Reply
  5. Kathleen Casey
    Kathleen Casey says:

    I’m so sorry you had to go through all of this, and amazed that you are already able to share the story. I am relieved that you are on the mend and hope that you continue to be patient with your healing process. Prayers to you and your family, and thanks so much for your generous openness.

    Reply

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