Rather die than have a stoma

My mother has had one since being treated for bowel cancer, she's had it for I think 15 years and has never been able to accept it. As a result she's become agoraphobic.

Your post moved me to tears Bluecat. My mum went through major surgery and months of chemo but despite being cured of cancer sees in her mind that her life is over.

Despite our support and telling her that her stoma had allowed her to live, she has given up on life.

An honest and courageous post from a courageous lady.

Bluecat, I agree with you; my closest friend had to have one about twenty years ago; obviously she didn't like it but has coped wonderfully well and leads a full, active life. One would never know if she didn't say.
It does seem a tragic waste of life.

Well done Bluecat You have coped so well with your health problems, the support of your family must have been invaluable.
Not everyone can deal with such life changing issues and the young man concerned felt this was the best way for him. I don't think we should judge the decision he made, most of us thankfully will not be in his position.

My husband has 2 stoma. He sometimes refers to them as Bill and Ben. Also because if a permanent abscess, he has a drain coming out of his bottom into a third bag attached to his leg. And 2 hernias. It has impacted on every area of his life, and mine to a great extent, for the last 15 years. We think we are lucky. The alternative would be unbearable. But he had 59 years of normal living. Perhaps if this young man had a wife and family to live for he would have felt differently.

I agree pension it almost certainly would have been different if he already had a loving partner. His parents are supporting him whilst their hearts must be breaking. I think that is real love.

My beautiful DiL has (had) Crohn’s disease and had all her large intestine removed when she was 17. She now has a permanent ileostomy, but it was a temporary one for too many years and meant a serious operation. She’s so healthy now and they have a DS.

It’s such a shame as there’s a lot of support out there and no reason why he shouldn’t have a successful life. But some people just can’t cope with them.

I should add that she’s 39 now and met my DS when she was 26.

I know somebody who had one at the age of 80 (following bowel op), a very fastidious and fashion-conscious lady. She seemed completely ok with it, used to come and stay with us and it really wasn't an issue.

Quite different for a young man of course, who believes his chances of a career and a relationship are ruined. I feel so sad that he should have such negative thoughts... entirely understandable but possibly an attitude that would change dramatically as he grew older and was given appropriate support.

Having a loving, supportive partner makes all the difference to coping with life-changing circumstances like yours. It sounds as though this young man is alone, apart from his parents. If he doesn't feel he can face life with this condition, his wishes should be respected.

My D ( in Oz ) MiL had one in her late 70's but couldn't cope with it and sadly gave up eating. Nothing I could do or say helped her in any way and she just faded away. So sad to see a once jolly person end up in such a way.

I often wondered how I'd get along if I'd been in the same boat. It's something which is debateable in advancing years, especially on your own as she was.

I can't say for sure whether the young man in question is right or wrong in his decision, but I'm so sorry for him.

Perhaps it’s his decade of ill health, the sepsis and being so dreadfully ill that has made him wish to not live as much as the fact of having a stoma, poor lad and poor family he has been handed a bad hand
I can see where he’s coming from perhaps if he was healthy and having a stoma he would handle it better
You ve done wonderfully Bluecat I d like to think I would have done the same and learnt to live with it but maybe there’s no hope left after such a long term illness for this young chap

That’s very sad. A friends daughter had a stoma when she was just 12yo. It seemed like the end of the world then, but she eventually had a what-was-then revolutionary pouch operation and is now in her 40’s, married with two children.

I wonder whether it’s truly possible to make a logical decision when one is in the midst of illness? Things always seem worse in the darkness of the night. I would also hope that he has spoken to others who live with this condition and seen how they manage.

Poor young man - clearly finding it hard to see a future for himself. So sad.

My friend has a stoma, necessitated by an invasive ovarian tumour. She has had it for years now and seems to tick along really well with it - it has not stopped her being out and about and going on holidays.

Thank you, everyone, for your supportive words and also for the support you have given to people you know who are in the same situation. I do think that most people - not everyone, of course - come to accept their stoma and live with it but it does take time. That's why I feel so sad about this young man. He did not give himself that time.

I think about how it would have been if I had chosen that path at 25. I would have missed out on so much. I believe most "ostomates" feel the same. This man felt he would never get a job or a wife, but people have gone on to find love, have families, have careers, climb mountains, write poems, run marathons...

I also think about his parents. My dad died 5 years before I had my operation, and I think it would have killed my mum if she had lost me too. They must be going through hell.

I am sorry to hear about people here whose relatives couldn't accept that they had a stoma. As a very rough rule of thumb, younger people tend to have ileostomies (due to ulcerative colitis or Crohn's) and older people tend to have colostomies (due to cancer.) There tends to be an assumption that it's more devastating for the young, who must cope with it in their prime and for longer. However, it seems that older ones often struggle more, as they are less adaptable than the young. That's a very broad generalisation, obviously, and many older people learn to cope very well.

I do think that the court was right to uphold the young man's wishes. I just regret that he made that choice.

At the age of 38 yrs I developed Ulcerative Colitus. This got worse and worse despite hosital in-treatment, use of steroids both internally and by mouth. Totally debillitating. I kept refusing the next step (iliostomy) as I had several small children, and felt that would prevent me being able to accompany them swimming and other activiries.

Completely lost most of a decade of my life with this dreadful illness. Did have some better spells, but they never lasted long. Ten years later I gave in - I was so ill, and had the permanent iliostomy. Unfortantely, there were severe complications resulting me in having three further ops over the following five days, and a week in Intensive Care.

But I survived, and after two months returned home. Took a time, but I gradually began to lead a normal type of life. When I had totally recovered (took about a year), I realised how ill I had been over that decade, and really wished I had given in to the medical advice many years earlier.

Have lived with this stoma for some 30 years now. Yes, there are occasional problems, but on the whole it is just a normal part of my life. Only my closest friends know that I have this, and I go happily to stay in peoples homes and hotels. Have led a very active and good life over those years. Hard moment was when I first returned to being an official for ASA, and was in pool side in totally white uniform!!!

The Ileostomy Association has trained 'visitors' - all have a stoma and they will go to visit someone in hospital to talk to them about living with a stoma. So many people having them when they are young have gone on to fall in love, have partnerships and children and can lead absolutely normal lives. Others (adventurous types) have gone deep sea diving, climbed mountains, etc.

Without this stoma I would have died many years ago -painful death. Due to it, I have lived to see my children grow up, do well in their careers, have children, etc.

I live by myself and do not need any sort of special care - totally look after myself in every way. For many years I was a gymnastic coach and was able to continue with this with this stoma.

So grateful that modern medicine gave me this long life.

I can relate to these posts as my DH had an ileostomy that saved his life (the first time) almost 30 years ago . He has had no bother with it at all until last year when it just stopped working due to a blockage . Ended up having another major operation which was followed by a very long stay in ICU and being placed on life support, where his life was saved for the second time.

I agree the young man has the moral right to choose to die.

I do hope he has had proper psychological treatment for dysmorphia. If he had a stoma and lived he might have traits so he would have a happy enough and successful life despite the stoma.

Franbern, you would not have had a painful death. Pain control methods work well.

I feel very sorry for this young man. I've always said that it isn't what happens to you, it's your perception of those events and how you deal with them that makes all the difference.

He feels that it would be the end of the world for him and it's so sad, who are we to persuade him otherwise? If he's had lots of advice and counselling then I expect he just can't see a way forward. Whose life is it anyway?

Like others it seems so sad but he has obviously had a temporary stoma and found it too much.
I do hope he's had young visitors who are living with a stoma to talk to.
So so sad for his family too - but he obviously feels he needs release. What a terrible thing to face for those who love him. They will want him alive but won't want him to live in a terrible depression.

No winners here.

Franbern, you would not have had a painful death. Pain control methods work well

I disagree Alexa . I think Franbern is right . You cannot live a normal life on the kinds of painkillers you you need to deal with acute pain.

Bluecat You've coped extremely well in difficult circumstances, but not everyone feels able to.

You say you already had a husband, and that he's been supportive. The young man in the media hasn't already got a partner, and he feels nobody would find him attractive.

Pinkcakes, I agree, that's why I said I was lucky. The sad thing is that he was very probably wrong. Many people with stomas do date, fall in love and get married. I am not underestimating the difficulties, as it is a hidden disability and you have to decide when to tell someone. They might reject you. Nevertheless, there is a very good chance that this young man, like many others, would have found someone who loved him for himself and not bothered about his intestines, or lack thereof.

I wonder if having a temporary stoma made things worse, psychologically. From the people I know online who have temporary ones, their whole being is focused on getting a reversal. When it's permanent, you have to get your head around the fact that this is the way it is. It is the same, of course, for any permanent disability.

The big problem is the social stigma, and maybe we ostomates make it worse by keeping quiet about it. I have smiled awkwardly and said nothing when people, not knowing my condition, have made stupid joking remarks about colostomy bags. It's not a subject you're keen to discuss, and only my nearest and dearest know. Maybe this silence makes people think it's more awful than it is.

Many years ago, I read an article in a women's magazine, the first I had seen that addressed the subject. I thought it was a step forward, but regretted that the title was "It's not a fate worse than death." Gee, thanks, is that the best thing you can say!

That young man is very much in my thoughts. I hope he passes without suffering.

Alexa - As I suffered from UC for ten years, I can know how painful it was. None of the many drugs I took helped very much with the considerable pain which often had me in tears, and so often prevented me leaving the house at all. And, without the ileostomy that would have got progressively worse.