Post-operative delirium/psychosis

[silverbadger]

I am new to this group. The following is something that lately I find is constantly on my mind and would welcome some comments on.

Over the last 9 years I have had many major open stomach, not keyhole, lengthy operations. eg cut open from rib to pubic area

During the next few days after these operations, on 3 separate occasions I have had an episode of post-operative delirium/psychosis. I have no history of such a thing or does anyone in my family. I have since spoken to many other patients, while in hospital and have been surprised at the amount who have also had similar episodes.

These episodes of post-operative delirium/psychosis are not of just being a little confused but of such things as in complete terror, hallucinating and paranoia, trying to escape from the hospital.

One person spoke of crawling across the floor, due to the severity of the surgery they were unable to walk. They were pulling out their tubes and monitors and throwing anything within their reach, including their stoma bag, at the hospital staff. They said they truly believed everyone to be an alien and were terrified that they were going to be taken away.

I myself on one occasion truly believed that the staff were trying to harm me and the only chance I had of being safe was to get away from the hospital. I had to be restrained from getting out of bed and to stop me pulling out the tubes and monitors. I believed all including my family to be part of it. The only person I trusted was a friend who lived 60 miles away. The hospital had to ring them and ask them to come to the hospital!

These episodes have not happened after every operation and seem to materialise after ones operation.

I can’t recall ever once being advised before an operation of the possibility of one suffering from such a episode!

Has anyone else had an episode of such a thing or been advised that this is a possibility. Could it be linked to the patient controlled pain control that one is given after a major operation, the one that you push a button when one is in pain?

It is such that I am at the moment refusing to have any more surgery. This is not because I’m frightened of the surgery but the thought of another such episode is truly terrifying?

[VickyC1982]

Most of us here have experienced ICU delusion which is the probably one of the most scary and horrific things I have experienced on my 37 years! It involves vivid dreams and nightmares whilst in the coma and horrendous confusion and hallucinations once awake. I have discussed this with my psychiatrist and it is down to a combination of various factors, the drugs, the illness, lack of oxygen, the ventilator, having you level of consciousness changed regularly. The reason the dreams are so horrific is apparently down to the fact that your body and brain know that you are fighting for your life and as a consequence, you are full of adrenaline and cortisol. Your brain keeps putting you in horrid life threatening situations where you are required to escape to save your life.

It sounds like you have had some horrible experiences and sometimes sharing them with others takes the horror out of them. Some of the dreams and hallucinations I had were horrific but there are also some that are hilarious on reflection. Feel free to share them here, no one will think you are strange! The good news about this type of delirium is that it is no way related to your long term mental health. You haven’t permanently gone mad and your brain is essentially having a normal reaction to a traumatic event. It is important though that you realise that you have been through trauma and that this could result in Post Traumatic Stress Disorder, so it’s good to know the signs.

Vicky xx

[zsmith76 in reply to VickyC1982]

My Dad is currently going through this an your explanation is excellent. Not only your resonse at the time but the reasons for it are illuminating. Thank you so much.

[VickyC1982 in reply to zsmith76]

🙂 It is very distressing for relatives but it is completely temporary and will pass. I didn’t fully come out of it until I got home x

[Flossieb in reply to VickyC1982]

Thankyou that’s an excellent explanation answered quite a few issues ..

[Sepsur]

You don’t mention whether the surgery leads to you being placed in ICU - I can only assert that I suffered delirium as a result of ICU & here is a great pdf on the causes

icusteps.org/assets/files/b...

[J7580]

Hi Silverbadger. I think I can empathise with how you’re feeling about the delirium.

I was sedated and intubated for about 2 weeks. During this time I was hooked up to every machine going, pumped full of so many drugs (I still haven’t got the feeling back in my fingers since removing the canulars) and received every scan/test going. I was in the same bed, in the same ward in ICU, the whole time. I only know this because I was told afterwards.

The reality and my memories or experiences definitely don’t match. To my mind I was in several places, people who I knew through sight but not personally appeared, I was convinced the hospital were keeping me hostage, I’m told at one point I became paranoid and only trusted two of the nurses, same as you I pulled at the wires and tubes connected to me. There is more but my memories of what’s real and what’s not are hazy to say the least.

I think for me, that’s the thing that unsettles me most - doubting, being unsure, scared of my own mind. I know it’s a combination of many factors which literally induced these experiences. Such as major trauma both physically and mentally, sleep deprivation, the doctors told me they intentionally give you drugs to make you forget when they intubate you, along with the rest of the cocktail of antibiotics and drugs given. It all makes sense that my mind, my memories and emotions would be a bit skewed after that, I know this.

It doesn’t change how I feel about it, instead it helps me come to terms with the what happened, why and how I had these strange and surreal experiences.

[anne16hall]

I agree with others who have commented - I experienced similar delusions to you and I think it is very common and it is so frightening at the time. I was sedated in ICU and understand it was all probably caused by the drugs - don't think I had pain control as I was there on a ventilator due to Guillain Barre Syndrome and hadn't had an op. With time - 3 years now - I do feel more rational about it. One of my neighbours who is a child psychiatrist has chatted as a friend with me about it and I found that hugely helpful; also my children who had to deal with the situation at the time have discussed it with me. I hope somehow you are receiving the help you need too .

[bmwr]

Hello, just to let you know that there is delirium supplement on the ICUsteps web site under information. Delirium is very common and can be caused by many things including infection, sleep deprivation, critical illness and some of the drugs that need to be used. Morphine can cause delirium so if used as a pain relief it may be worth explaining your fears and to have something different. It's a frightening experience but is certainly not uncommon and you are not alone. There are many studies and research articles around thus subject.

[Alevia]

I've had several major surgeries, liver etc but the only time I experienced the ICU psychosis like you was when I had a major stomach surgery after a hernia strangulated my colon. I've been told this is common after a stomach surgery due to the stomach containing cell similar to the brain and it's often referred to as a second brain. It is the most horrific experience I have ever had but the memories do eventually fade so they're not so terrifying. Best of luck to you.

[totallydonny]

Hi, yes as already said unfortunately it is a common thing and only someone who's experienced it can sympathise with how terrifying it can be. Most of what you have talked about I experienced too 9 years ago now but I have never forgotten them. Recently I came across a self help/support group in my area in the UK for patients who have been in ICU to help and be able talk to others who have been through the same sort of thing, have you looked for any groups like this where you live? Also these deliriums will not harm you or your mental health as it's all normal, whether it would happen again to you I can't say but hopefully these comments will help you come to a decision about any further surgery good luck.

[Flossieb]

Hi like some of the above I thought I had been arrested and committed but as my eldest boy is a policeman it makes sense I thought I was in a mental institution on an island in Newfoundland fgs and also there were Monkeys and birds and animals all I’ve around ward like billy smarts circus 🎪 everynight so it seemed good funny a hallucinations delirium and scary ones where 8 thought I was being poisoned 🤢 pulling out all the drips and oxygen stuff so sedated even more still think Newfoundland was real and Antarctic war planes different wars ..x

[Maithalouni]

How long does delirium typically last? My mom had it for 2 weeks at the hospital after a cardiac arrest. We were relieved at first with all the reading that this is temporary and will pass but 2 weeks is a lot and we also started to read things online that are not so great... we have to google since she has been 3 weeks without a neurologist at the hospital she is at and cant transfer because of covid... she been yelling all last night trying to get her peg tube out and appears to be in pain.