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

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

I add my good wishes!!  The Rollercoaster Ride continues eh??  I know the moment Ian woke from his colon cancer operation his hand went for a feel to see if he had a bag - as I guess most people's would.  A friend in the motor trade who had Stage 2 colon cancer (with no spread) 11 years ago had a bag for a few months while all his "bits" healed.  He quite often called into our workshop during the summer with the briefest of shorts on.  I knew he had a bag but was completely flumoxed as to where it was    And Newbie's Jan is taking her bag on a trip to Africa soon - and I'm not talking luggage type bag!!  So a "bag" does not define your life.  Easy for me to say, though, with all my bits and pieces where they should be.

Keep us posted won't you.  Hold on tight to that Rollercoaster!!!

Lorraine

Hello and thanks for your letter. Tom our eldest wanted to know why his Dad needs to have this drastic surgery if the cancer looks nuked on the scan. Phil had an appointment with the surgeon on Monday so I asked him Tom's question first. Surprisingly he alerted us to a clinical trial that is being conducted from the Royal Marsden hospital London. It's called 'Watch and Wait' deferring surgery and scanning regularly and doing a sigmoidoscopy. It lasts for ten years and surgery is given if there is any evidence of cancer activity. The surgeon says it is not policy to suggest a patient for a trial but he would be happy to refer Phil if he wants to go on it. Its a few years in and there is a good percentage of participants who are remaining well! Today Phil is going to see if he is suitable for it. I really hope he is because we are all dreading this operation for the physical mental and financial hardship it's going to bring. (no matter how positive and upbeat we are) I do wonder why nobody who works for Cancer Research didn't comment on my original post and alert me to the trial?