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.

Parents
  • 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

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  • 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

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