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.

Hi.

As elkay has said my wife Jan had a colostomy and it was very distressing for her. We are still unsure whether it will be reversed, and even if they decide to try, whether it will be reversible. She will meet with her Digestive Diseases Consultant on 21st November to discuss this. We know of one person who, like Jan, had an emergency colonoscopy, went for a reversal and woke up to find the bag still in place. (there was too much scar tissue for a reversal to work.

So we are on the journey of deciding whether/how a permanent bag is liveable with.

At first Jan wanted to conceal it from me entirely. People in couples have differing levels of intimacy. For a while we couldn't shower together. be in the same room whilst bathing or undressing, or sleep together. Occasionaly Jan's dealing with her stoma would leave little "messages" on the bathroom floor. I decided to always mention this, after I had cleaned up, because I wanted her both to know it was OK and to be aware that she was missing things that other guests to our house might find harder to cope with.

We often shared bathwater. On one occasion my bath was a little less relaxed than it might have been because of the deitrus fromm Janet's leaking Stoma. It wasn't a major issue but I shared the experience with Janet. She now runs me a fresh bath when she's finished.

On one occasion I woke at 4.00 am to find myself covered with leakage from Janet's stoma. By this time we had overcome the not sleeping together and the enforced celibacy that this involved. I took a shower, woke Janet who also took a shower, and we changed the sheets.

It's not the easiest thing in the world either for the person with the bag or for their partner.

I don't know if we're right but honesty between us has served us well. I don't pretend that Janet hasn't got a bag, and I don't pretend if it leaks or if she drops something when she changes it that it hasn't happened. I try to make it clear that it's OK but never try to pretend it hasn't happened.

I hope Janet gets a reversal. In some ways the presence of the bag makes her feel less attractive so less inclined to affectionate exchanges even when I'm not bothered by it.

I have to say that there are procedures I wouln't agree to for myself. so I maybe support your husband on this, but if you can reallistically reassure him about your ability to cope with his bag it may impact on his decision.

Best wishes and hoping it will be temporary,

Russ

Hi I have a urostomy and have had  it for about 6 years at times it is a pain in the bum but I walk my dog and feed the wild life in the drive ,make every day a good day. I like to cook so spend time in the kitchen .I keep in touch with the kids and take what god has given me .

He must take care of himself and live life to the full .I was in surgery for about 8 hours and ICCU for 8 days but came out OK . Regards george PS I am 79 years old .

Dear George, thank you for your letter. I have a regular customer in the cafe who is 78 and has a urostomy. I'm always amazed how well he seems and how he copes with his situation. He tells me I sell the best flap jack in Leamington! Philip and I are sitting in our lounge, bag packed waiting to go to the hospital for his operation tomorrow. My stomach is churning and I'm fighting back the tears. Philip shows no sign of anxiety at the moment, I think chaps are tougher! I'll keep you all informed on here of his progress. Gulp.

Hi Swedes,

Haven't talked in a while, so when I read your latest addition to this thread, I just wanted to wish you both well for the operation tomorrow. I'll tell you a secret, men aren't always tougher although we like to think we are, its just that we tend to hide our emotions better. I think women handle certain things better than us men at times.

Best wishes for tommorow and for the future too, kind regards Brian.

All the best to you and Phil.  I wish I could come and give you both a tight hug!!!!!!!!!!!!!!!!!!!

Lorraine

We arrived on the ward as requested at 12.00, we were sent to the dingy sparse day room as his bed was still occupied, we couldn't get the telly to work and the drink dispenser was turned off. Nobody checked on Phil so at 13.40 we went back to the nurses station to check if it was ok to wander down to the cafe. The staff nurse asked Phil if he'd like some soup, she said she would get him some soup and looked at me and said "You can do what you want"! (I dont like anything about her). Phil declined her offer so she said let her know when we are back. Philip's mood got blacker, we were eventually seen by a lovely stoma nurse who marked Phils abdomen with a cross on each side, I wept because I know how much he is dreading this. The bed was eventually vaccated at about 15.00hrs, his is the only bed in the ward without a tv/radio because it broke! The other occupants are all in their eighties and they all look quite poorly, I could smell faecal matter. He was questioned by a 26 year old trainee doctor, the questions were all asked previously but he was sweet. Phil was given Picolax and by 18.30 he was visiting the loo. The anaethetist came to talk at 19.15 he was also good although he gave another gruesome list of 'this may happen's'. I left my dear one at 20.00hrs and the cost to leave the car park was nine pounds!!! Today I spoke to Phil on his mobile, he told me he'd had only an hour's sleep. I rang the hospital later and was told he had been taken to theatre at 10.30. To be honest I think it would have been better if Phil had been asked to attend early this morning instead of the quite awful experience he had to endure. There was no need at all for him to be there overnight, he took Picolax at home before the colonoscopy and the other stuff could have been achieved just as easily in a short appointment. He had to face that massive operation feeling like poo. Not good. I am to ring the ward again at 18.30 and I'm going to tell you everything. x

I'm just up, getting Ian's breakfast.  I am in a dither because he needs fibre to combat the effects of morphine but the radiation today will probably cause diaorrhea and so fibre should be withheld...................?

But a quick word to say hello and give you a {{{{{{ ug }}}}}

Poor Phil!!  Ian's op seven years ago was done on the day of admission so we got to sleep together the night before in the peace and quiet of a motel.  Ian was grateful for that.  On the night of a blood transfusion to get his bloods up a fortnight before that he had endured one of the nights Phil's just endured - elderly men huffing, puffing and grunting their way through the night - even one who refused to allow the four-bed room's light to be turned off because he might die if it was dark!!!

You can actually see why people are discharged very early after their ops - they've got to be in a better environment at home in peace and quiet than in an Illness Factory!!!  Not that that isn't scary for us carers - presented with a massive wound and a list of drugs to deal with. 

We will leave home at NZ 9.30am here but should be home again early afternoon.  I will log in straight away to see how things are with you.

Meantime you know, without any doubt, don't you that I am thinking of you often and hoping for the very, very best for you both!!!!!!!!!!!!!!!!!!!

Lorraine

hello again, Philip is alive, uncomfortable and now has a permanent colostomy. He is disappointed but resigned. We only hope that the lab results show it was a life saving operation, it will take the sting out of it. x

Oh no, I am so sorry, I know I agree with the "bag not box" theory but that is One Huge New Normal for you both to get to grips with.

I have just had a **** of a day with Ian's first radiation and obnoxious staff and a wimpy Ian who didn't stand up for me but it pales into insignificance with your day.  I've had a good old howl out in the garden - chock full of self-pity and anger.  Can I recommend the same to you as well - a really good howl!!!!  It's your job now to show Philip that the bag doesn't make a jot of difference to how you see him or how you feel about him.  And like you say, let's just hope that this is a curative operation and Philip gets to be a crotchetly old 99year old, well and truly resigned to his bag....

Again, I am so sad.  Will you give him a big hug from me????

Lorraine

I hope the results will be what you want to hear - and I trust Philip will get used to the stoma before too very long.  I have no experience of this (my husband's colon cancer was very advanced when it was diagnosed; initially there was a hope that the first 12 rounds of chemo would shrink the metastasis enough to make colostomy and liver resection worthwhile but it was not to be).  The human spirit can adapt to so many things and adapting to this has to be better than the alternative. Take care, Expat

I hope the results will be what you want to hear - and I trust Philip will get used to the stoma before too very long.  I have no experience of this (my husband's colon cancer was very advanced when it was diagnosed; initially there was a hope that the first 12 rounds of chemo would shrink the metastasis enough to make colostomy and liver resection worthwhile but it was not to be).  The human spirit can adapt to so many things and adapting to this has to be better than the alternative. Take care, Expat