Bowel (colon and rectum) cancer

A support group for anyone affected by colon, rectal or small bowel cancer to come together, share experiences and ask questions.

Post bowel cancer op

Anon100
Posted by

My Mum has colorectal (bowel) cancer, stage T3. She has had both chemotherapy and radiotherapy which went well but she needed an operation to remove the tumour. Throughout the whole journey my mum has been so open minded and positive. However, when my Mum came around after surgery she was not herself and has not been since. Prior to her operation my mum had no mental illnesses however after the operation she was extremely psychotic; believing the nurses were trying to kill her and us, seeing things and hearing voices. She refused to drink hospital water, became violent (which has never happened before), didn’t sleep for days on end and would have conversations with people who weren’t there. The people would tell her what to do and at one point she did something which she thought would kill her self. It was so bad that a family member had to stay every night in hospital with my mum for a whole month as opposed to 4 days due to her mental state (she was physically fit to go home). It has now been 2 months since my Mums operation and although she has progressed significantly she is still constantly hearing voices in her head. The only way I can describe it is having my Mum come home with a new personality. She is now home and receiving psychiatrist visits and on anti- psychotic drugs aswell as just starting a new 6 month round of chemotherapy. I really appreciate your time taken to read this, it honestly means so much to me. Has anyone got any similar stories or anything? I feel so helpless.

court
Posted by

I am shocked to read about your mum . What a difficult situation for you all to handle . Has the mental health services experienced it before ? I can imagine just how frightening this has been for you all. Someone I know had psychotic episodes brought on by pregnancy. Took a while to get the right medicine . It was a case of careful balance but she got there in the end and the situation was resolved .  I can totally relate to feeling as though a different person has turned up , the only thing I can reassure you with time it changed again . 
Even seeing my mum react to morphine threw me so you have endured so much . We are most definitely here for you to support you . 

Macmillan has a helpline if you would like to chat it through with them . They may be able to offer some insight . 0808 808 0000.

How has the surgical aspects been after the operation . Hope she is coping with them .

take care ,

 Court 

Jools63
Posted by

My heart goes out to you. I can’t imagine how difficult that must be. I have heard of this happening to people in a few instances, but thankfully I don’t have any experience myself. My mum is a manic depressive and prior to every nervous breakdown used to change personality. She would go from harmless rambling nonsense, to becoming agitated and violent. I hope your mum gets the help she needs. Is anyone looking after you?

superfly
Posted by

Hi. I had a big operation just before Christmas- 10 hours- and was taken to a High Dependency Unit (HDU) to recover. I had a horrendous 3 day psychotic episode where I was hallucinating and behaving in a paranoid manner and thinking all of the staff were conspiring against me. It was one of the worst and most frightening experiences of my life, and I can fully understand the problems it has caused your Mum and your family. The consensus from my surgical team was it was caused by the strong medication, being in the HDU and physical stress on my body caused by the operation. I have done quite a bit of online research to try and find out more and there is a medical term for this - its called ICU psychosis- so try googling that as a start point, and maybe see if your MUm can get some treatment?. It apparently happens in about 25% of cases but there is not much that can be done to counter it in advance of an operation as its so random. For me, it was at its height on day 1 and then gradually got better and I would say I was back to normal on day 4, but I was lucky by the sounds of things. regards Sean 

Anon100
Posted by

Lovely to hear from you Court! 

The mental health services do appear to know of somewhat similar circumstances however the psychiatrist said it would take up to 2 weeks for her to be herself and obviously that didn’t happen. Since then they have said it could take up to 2 years for her to become herself again! All the surgical aspects have been good thankfully! 

Anon100
Posted by

Hi Sean, 

It’s quite comforting to hear from someone who has experienced it and come out the other side! I hope your operation went well? I actually did come across ICU psychosis but all the cases seemed to be for a much shorter period of time than my mum! Do you have any advice for what you would’ve like to hear whilst you were experiencing it? Also did you find that any of the paranoia you experienced related to any real life issues you have experienced? For example my mum believed she had been diagnosed with blood cancer which relates as in real life she has bowel cancer - hope that makes sense! 

best wishes x

Anon100
Posted by

Hi there, 

It has been so hard but thankfully she is slowly getting better. The mental health team actually did see family mental health issues as an underlying factor to her psychotic state. I do have my family around me but I’m just finding it really hard; getting on with ordinary life. A friend of mine whose mum had cancer suggested I have counselling as it helped her. But I’m worried that my parents would just see it as a sign that I’m not coping and I wouldn’t know where to begin in finding one.

Best wishes x

superfly
Posted by

Hi again

I don't think anyone could communicate with me whilst I was at the height of the experience, but I would have liked a more detailed account of what happened to me when I was coming down. Yes, the paranoia was directly related to a bad medical  experience I had suffered at the same hospital- too long a story to tell here! Sean