My Dad Thinks He Will Be Better Off Dead

[SoSadAboutMyDad]

My dad was diagnosed with advanced Stage 3, almost Stage 4 rectal cancer before Christmas. It was a shock as, although he is 70, he still runs multiple businesses and is very fit and healthy. My mum and him live on a smallholding so he does a lot of farm type work.

He had Chemo tablets and radiotherapy with no side effects whatsoever. The tumour has shrunk but unfortunately it is very close to the sphincter - about 1cm away, so to get clear margins they have to remove the sphincter. This means he has to have a permanent colostomy.

Right at the start he said that there is no way he wanted a colostomy. A friend of his had bowel cancer about 5 years ago, had a resection which failed, he nearly died of sepsis and ended up with a permanent colostomy. He was in hospital for 4 months and nearly committed suicide. He has told everyone how the colostomy has ruined his life, that you can’t do any lifting of anything else you get a stoma hernia like he has, it smells, makes noises, stops him going out anywhere as it fills all of a sudden and he has to go home and that he would rather be dead.

Obviously dad has taken all this in. At first he seemed to accept that there was no choice but his operation is on Saturday. It’s at least 5 hours and he will be in HDU. He will be in for at least 2 weeks, can have no visitors and my poor mum has to just drop him off at the hospital door to face all that alone.

I don’t know if I could face it, I honestly don’t and now he is talking about letting nature take its course instead of going for the op. As much as I don’t want to lose him I can’t help feeling that he will be so unhappy with his life afterwards if he can’t do anything that maybe it would be for the best. This is so so painful.

What an awful situation to be in

All I can say is that it sounds like your dad's decision will be an informed one, whatever he ultimately decides. If there's only so much disability that he's willing to accept for himself, then it's a grim - but valid, and very brave - choice he's making.

It might be worth getting in contact with a charity like stomauk.org who can give him a different perspective, I know a lot of people with stomas due to IBD, and most live perfectly normal active lives.

I’m so sorry you’re going through this OP.

I agree with @OwlBeThere - it might help for him to see other perspectives. I have a friend who got a colostomy bag aged 29 because of colitis and she lives a totally normal, fulfilling life. She’s had a baby, beach holidays, dinner parties, days out, etc since she got hers without any trouble at all.

It’s a big change, and totally understandable that he is really struggling with that. But many people with stomas live totally fulfilling and happy lives despite them (or even because of them).

This is just based on one persons say so!

The only person I know with a bag is a marathon runner.....

He will be in for at least 2 weeks, can have no visitors and my poor mum has to just drop him off at the hospital door to face all that alone.

Visiting should be allowed now, but the process has changed, at my trust visitors must be covid-19 negative and are allowed to book for 1hr per day. Check the hospital website for guidance.

Your dad has done really well so far I understand his trepidation about the stoma, but lots of people are living with one that doesn't have a negatively hinder their lifestyle. This article is really helpful

www.cosmopolitan.com/uk/body/health/a9528270/colostomy-bag-living-with-crohns-disease/

End of the day it is about your dad and his quality of life. I wouldn’t want my relative to suffer or be in pain. I would respect whatever decision they make.

I agree your Dad needs to talk to a few people, supporting organisations etc., rather than take the word of one "friend". Lots of people have stomas and live normal lives - in fact we probably all know someone who does without actually knowing about it IYSWIM.

My mother had a friend in her 80s with one - I wouldn't have known if she hadn't mentioned it one day, and she has a very social and busy life.

A friend has a colostomy bag and has a very physical outdoor job, you wouldn't know he had one. A relative has one but she and her home do smell bad quite often and can't be far from a bathroom at all time. But in the twenty years she has had it she has refused all the support meetings where she could get advice and help from others in the same situation.

I suppose for me given his diagnosis what a the colostomy going to do? Are they trying to cure as looking at your OP it is advances so sounds like there slowing the spread. How long have they given him? My DH is terminal and we made decisions around his treatment we regret now as my DH is a physical mess. The doctors getting excited about using robotic surgery and how it might improve prognosis. However it made no difference and it still spread.

I guess it depends on his overall prognosis. My dad had bowel cancer three times and they are big operations. If your dad isn't going to be cured, he may prefer a shorter time in better health which is absolutely fair enough.

If there's a decent chance that the stoma is part of treatment that may cure him, then yes he should get more varied info. I know a young man who's gone scuba diving and parachuting with his and doesn't find it an obstacle at all.

Best of luck to you and your dad.

I'm sorry. That's a big, scary thing to face.

I did know, when I was younger, a couple who met at the stoma clinic after their colostomies, and fell in love and married. Lived active lives for years.

My uncle was told he needed a triple by-pass, aged 55. He turned down that opportunity and is still here at 87. Not directly comparable, but an example suggesting we do have the right to refuse treatment that we don't want.

It is a hell of a situation to be in & for some people the treatment is brutal, I personally wouldn't put myself through it if I was terminal. However, people can be ignorant about cancer & believe that it's always a death sentence, when in reality it ain't easy but for your own sanity you learn to live with it & can live a good full life. Have a look at this rocking2stomas.co.uk, & on the Macmillan site. Right now your dad's probably terrified, he may change his mind, but only he can make that choice.

They are hopeful that a colostomy will cure the cancer as it hasn’t spread beyond the bowel wall and muscle. He is just adamant he doesn’t want one

The problem with that is we had excited surgeons tell us they were aiming for cure, had to take out part of the lung and a clear margin. My DH suffered serious post op side effects, hopsital for 6 weeks and 3 more procedures. We still found it it had spread a few months later. Just because it cant be seen doesnt mean it isnt there. He should be asking them what are the risk or recurrence is based on his cancer. He should use that as a basis for his decision.

He has had bad experiences of colostomies from an acquaintance. He really needs to talk to those who manage theirs with no problem. There are thousands.

He is carrying around a very negative view. Can he talk with the specialist stoma nurse to get a more balanced picture?

He needs to weigh up the options and the prognosis associated with each, both in terms of length of life and quality. But he needs to di that with a balanced picture of what a colostomy entails.

Oh bless him. It’s a hard situation to be in. I understand his feelings if I’m honest. I don’t have Bowel cancer but I have ulcerative colitis and have been told in the near future I’ll need a colostomy. It’s a major change to have and the stigma is real. For me I’ve seen both sides to having one , friends that got their life back and can do absolutely anything and friends that it’s not worked and actually made them worse. For me I’ve always said I do not want one and I’m 31 currently . I think your dad needs to do research and decide 100%. If having one will not cure him then I would listen to him sorry. Yes they do smell, they make noises and you do get pain from them of course you will. Tell your dad to research and speak to a stoma nurse Aswell as the colorectal surgeon who can advise him.

Presumably his friend hasn't yet committed suicide in which case said friend was venting and has very much decided his life is worth living?

Honestly, my mum died six years ago and by the end death was the better option. Cancer obstructed her bowel so she couldn’t eat. She basically starved to death. Treatment seemed to mainly prolong her suffering. Having seen what she went through I’m not sure I would opt for treatment in the same situation. They refused to operate near the end but it made things very tough for her.

If he has this surgery, is there a chance of recovery / remission?

Does he fully understand what his last months will be like without the surgery? Without being too horrible, even when she couldn’t eat her body still produced faecal matter and made her very sick. It was really unpleasant for her obviously. So I would be concerned about the impact of not having the surgery on the rest of his time and i would make sure he’s sought advice on this before making a decision.

I know this is so painful - sending huge hugs

Hi OP so sorry to hear this. My experience is different but I had a stoma created following IBD which couldn’t be managed when I was 13 years old and was in hospital for 1 month after. I think I experienced all the things your dad’s friend went through except hernia. But things did get better and I was soon back at school doing all the regular teenage things and I adjusted fine. This was in the 90s and I’m sure there is loads more information than was available back then.

It was such a shock to the system to have it, we are used to going to the loo one way our whole life that to adapt to using a bag is just surreal. I used to have a stoma nurse visit multiple times per week to help me.

I echo anyone who says get in touch with the numerous charities/organisations and stoma nurses who help people going through this - what support would he have afterwards?

Obviously only your dad can make the decision, and you will hear as many stories of incredibly active people with them as much as people who absolutely hate it.