He says he'd rather die than endure a colostomy.

My husband's tumour has responded brilliantly to the oral chemo and the radiotherapy, we viewed the 'before and after' scans showing a huge tumour then no visible tumour. Yesterday the surgeon explained in graphic detail what is going to happen next: The remains of the tumour and a degree of healthy tissue will be surgically removed along with the lymph glands in that proximity. they will use keyhole procedures. There is a small margin of rectum that could be rejoined to give him normality eventually, having a reversable Ileostomy for a few months. If during the procedure they find it too difficult to rejoin or it doesn't heal properly then he must have a permenant colostomy. Philip says he would rather die than end up with a permenant bag. He says he would lose any confidence, he'd lose all his dignity, he says he wouldn't feel up to going out of the house and he wouldn't want to work in peoples kitchens and bathrooms any more. He says I would not fancy him any more. The surgeon did say that the radiation will carry on working but they have no evidence that shows the long term results because they are still learning about these new combinations of attacks on cancer cells. We didn't ask if Phil could forgo the surgery, I'm wondering if you can share any thoughts.

  • I forgot to mention that following the surgery he also has to have a course of intravenous chemotherapy for six months, once a week or fortnight.

  • Hi there , should the worst happen and your husband ends up with a permanent colostomy, there is a possibility that he could use the irrigation method to manage it. I use the method very successfully and only need to wear a bag the size a a large sticking plaster - i can swim etc with no sign of the bag. I irrigate every 2 days and it takes me about 40mins in total. If you want more info send me a message or ask your husbands stoma nurse. Good luck with everything


    stef xx

  • Thanks for your reply.

    I think he's contemplating saying no to surgical intervention, he slept badly last night. He says it's not fear it's the wish not to lose normal bowel function. His tumour was growing for up to two years and was huge at the start now it's not detectable. The consultant surgeon said the radiation could carry on working, however it's early days with this combination of treatment so there's no data yet and no comparisons I suppose because surgery has so far interrupted things for all those prescribed it. Nobody can say what will happen if he doesn't have the debris and a margin of healthy bowel removed, it could be that it's all dead and will never pose a threat. The scans all show no other hot spots, no sign of spread to anywhere. Maybe it's a benign malignancy, one with no strength to regrow even if what's left are a few cells that have been filtered into his lymph glands.

    So far his cancer has not made him feel unwell, he did suffer the constipating effects of an increasing obstruction. The proposed surgery is complicated and will involve up to 8 hours of anaesthesia, of lying still. There are risks of leakage and infections, stuff he knows will make him unwell. What to do for the best, I dont know.

  • Plaese try to perusade him to have the op, I have said i would have it done if nessecary, noe the MDT have sain im not suitable for surgery im gutted at this outcome > I have heard that some people train their bowel so they dont need a bag all the time, please try to gert him to change his mind, I would if I had the choicexx

  • Hi I can only echo what has alreday been said - have the op , I would leave nothing to chance , basically its a bag and life or ? Your husbands proposed op sounds the same as mine - I was meant to be in hospital for 2 weeks but 'escaped' after just 5 nights. I won't pretend it was easy but I'm great now and back at work full time. As i said before the irrigation method might be a good option for your husband take care and get all the advice you can

    stef xx

  • Hi..... Colostomy.........I have nursed many people with colostomys, in their own home and within the wards.  Everyone is horrified at first to have such a thing....but it never takes long before the person comes to terms with dealing with a bag attached to your body... because thats what it is...and the only difference is its on the outside .  They can be managed very efficiently these days, there are different types , they can be changed regularly or when needed.  No one would know when clothed as long as one has good hygiene habits.   Its not the end of the world.  More people than you would ever realise have one.... believe me..   Give it a chance.

  • Thanks all for your responses, I think he's going to have the op but he's very upset knowing that once he has signed the consent form and been put under he wont know if he will have a redundant rectum or not, it's terrifying him. Today though he's going to talk to a chap he's heard of that had a temporary iliostomy that's recently been reversed. It's what he hopes for himself.

  • My dad has a permanent colostomy bag. I am sure he didn't tell me the full truth about how he felt about it. But from what my mum told me he did find it hard to cope in the beginning, and that is only natural.

    It would be better to agree to the op, and get the ball rolling sooner rather than later.

    I think the bags are discreet, when looking at him you can't tell he is wearing one. (Unless he has flipped up his shirt to have a look at it).

    I am pretty sure that my dad as offered counselling after the op, which he didn't take. But he always spoke up it openly with my mum (his wife). They have even laughed about it.

    I hope your husband learns to cope, and I wish you the best too because I know cancer has an impact on all family members.

  • Thank you for your reassuring reply, it is useful to hear about people surviving well and keeping a sense of humour.

  • I don't know how close your husband is to the op now - I wish him well.

    I was thinking about colostomies the other day (like you do); we can never guess that someone has a colostomy, can we?  When you consider the number of people who do have them... Any that I know of the person has actually told me for some reason.  But I would never have known otherwise.

    I hope meeting people who have learned how to cope or have had stoma reversals has helped him. Take care,

    Expat