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.

Well he's now in posession of two new pairs of John Lewis pyjamas so he has to have the op. Fancy you didn't have to have a bag 'Fourlegsgood', not even a temporary one. Phil has been told that he will definitely have an iliostomy for a few months. He was advised by a fellow golfer (with a bag) to get a protective cover for his mattress because he will have accidents in the beginning. It's not a great place to be.

Another New Normal looming for you both Sue.  But like Fourlegsgood says, rather a bag than a box.  And I guarantee you that Ian would opt for a bag rather than be where he is right now.  Phil's friend is right to mention precautions for "accidents."  Newbie's Jan had such an accident one night.  It wasn't nice and was I suspect really upsetting for her as well as Newbie, but with her bag and a good dollop of remission they have had a trip to Spain and have now got their eyes on The Gambia.  The remission or even better a cure are the only things that truly matter..........

Lorraine

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

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

Dear Lorraine, I have had a couple of the howling episodes, I may even have disturbed the neighbours, I've only made that noise once before and that was when my sister had her breast removed. Thank you for your warmth and loving messages I will be sure to hug Phil from you, you are very generous considering the awful time you are having. x

Thanks too Expat. x

Hi there , glad to hear the op is over and recovery can now begin. As for the permenant colostomy dont forgert the option of irrigation at a later stage - mail me if you want to chat about it

hugs

stef xx

Thanks Stef, I would really appreciate you enlightening me about irrigation, I know it's what Phil would prefer to aim for. Yesterday I went again for a few hours, Philip looked more lively, he'd had all tubes removed and he informed me that he had cleaned and changed the bag himself for the first time, I asked how it went and he earnestly said it was no problem at all. He has had very little in the way of solid food which I hope he will attempt soon as I need him home so the poor soul can get a goodnights sleep, he's had only a couple of hours each night so far. I asked him whether the colostomy is as awful as he'd been dreading and he said not at all. If only the staff had all been honest and told us there was only a slight chance he'd avoid a colostomy he would have been able to prepare, they all said there was a 75% chance of success. Never mind it's all over now. By the way one of our regular customers told me I could get a 7 day visitors pass for the car park for fifteen pounds so I purchased one. I had already spent twenty three quid! Do you agree that we should have been advised of this money saving pass on the day of admission?

Hi Swedes I'm glad your hubby is on the mend, although he will be tired when he gets home it will be another step towards normality. I am the same age as you and it sounds like my diagnosis and op was the same as your hubby so we have a lot in common . It is a year on the 14th of this month since I had my op. One thing i found useful when i first came home was some tena bed pads in case my bag burst - it never did but it gave me confidence , they are jsut a square of material that you lie on. My main problem when i came home was finding a comfotalbe sitting position and the nurse go me a special blow up cushion - its worth asking for one. I had to have my bottom wound dressed daily though after a while I only saw the nurse about twice a week and my husband did it twice a day with dressings the nurse gave us- i also found the best way to keep the wound clean was to rinse with the shower head before each dressing change so that I wasn't rubbing it. It did take about 4 months to heal fully but is fine now. I now always carry spare bags, wipes, disposal bags, clean undies and a pair of trousers with me - just in case. As for the irrigation I began that in January 6 weeks after my op, the stoma nurse ordered me all the equipment and came to the house to show me how to do it, it took me about 3 weeks to master it completly and a further 3 weeks for my body to get used to only working when I irrigate ( I still have moments when my bag fills - usually if i eat something i know i shouldn't! )

Basically it takes about 20 mins for the actual procedure. I irrigate every other morning and a typical morning goes like this:

6 am get out equipment and begin to irrigate

6.20am irrigation almost complete - seal up the irrigation sleeve and tidy away equipment. Potter around making bed etc. ( this movement usually gets the bowel working some more)

6.25 Empty sleeve again if necessary and shower.

6.30 with sleeve still in place go down for breakfast ( sometimes this is interupted with sleeve that needs emptying - but thats fine it means the irrigaton is going well.

6.45 do a bit of house work and feed dogs

7am back to bathroom remove sleeve and put on cap or very small bag (over the year I have become in tune with my body and how th eirrigation has gone and i know if it might work a little more in the next hour - hence a full bag sometimes)

And then hopefully thats it for 2 days

I use this method in the caravan  and have used in hotels with no problems. If you go on the colostomy website there is a leaflet on irrigation and I found a little video on u tube - a man from new zealand showing how he irrigates.

Basically theres nothing much i cant do that I did before op - I have been swimming etc.

If you want to chat privately send me a private message ( have you set up your cancer research account for this?

As for the car park we were told about the pass at the first visit.

Get your hubby to ask for a sleeping tablet whilst he is in hospital then he can get a good nights sleep - he needs his rest.

take care

keep in touch

stef xx

ps if you send me a private message i will send you my personal email address

I am thankful all seems to be going relatively well for you two.  Do you think Philip is telling you what you want to hear or does really, genuinely feel OK about the bag.  I sure hope he is coping with it for both your sakes. 

Yes, of course you should have been told about the parking pass.  Don't these people realise the financial toll we bear at times of illness and being unable to work/earn.

But more importantly you shouldn't have been lead to believe the bag was "only a slight chance."  Where do hospital staff get off giving one impression, whilst knowing full well they are going to kick the stool out from under our feet and leave us hanging by a noose??!!??  Sometimes I feel they set us up for failure for a perverse pleasure of showing us their power over us.      ............................Sorry!  I have "Issues" with hospital staff at present

The irrigation avenue certainly sounds do-able doesn't it.  Trust a Kiwi to have mastered it - we are the kings and queens of DIY and this is taking DIY to an extreme sport I think you'll agree!! And U-tube footage!!  Welcome to the 21st Century

If you are worried about Philip getting hooked on sleeping pills, can you try him on a homeopathic remedy like Rescue Remedy Sleep.  I am using a NZ product called Sleepdrops.  Even with the huge stress of the past couple of months (let alone the past few days) I squirt my drops under my tongue (three doses on very bad nights so my bottle's emptying real fast at present!!) and I sleep like a baby - not even waking when Ian's cellphone alarm goes off at 2am for more morphine.  Obviously you won't be able to get hold of a NZ product in the UK, but I would imagine Rescue Remedy Sleep would be on a par and homeopathic remedies have got to be better than chemical remedies any time....  Hope that helps.

And Mum123's hints on bed pad, spare bits and pieces sound like practical but wonderful advice.  Sounds like you'll have to buy Philip a Man Bag to keep his bits and bobs in

Keep your chin up my friend - The Newest Normal is underway!!!

Lorraine

Stef, thank you so much for writing all that, I'll show Phil and I'll get him to watch the video. Lorraine thanks for your letter too, everything would be much better if only Phil could sleep, he's just rung me (05.00) to say the ward was too noisy again with the man in the next bed in audible pain! I wonder if I can go and rescue him from yet another night? He cant sleep on his side yet and his back hurts to lie on too. At home it's quiet, dark and his bed comfortable so it would be better for his recovery. He didn't ask for night sedation and they didn't offer it. I'll see if I can get some of the remedy you recommend in Boots the chemist later. He says the five nights with no sleep is making him feel frail and vulnerable. Not good.

Aaahhhhh, Boots!  I've had some happy times pottering about in Boots the Chemist on trips to the UK      I hope such a remedy does the trick.  How can Philip possibly heal without sleep???  In the couple of months I have been using my homeopathic sleep remedy I've probably only had two nights of sleeplessness and I've followed the instructions and dosed up again during the night and drifted off again.  Even in the horrible three nights I've just had, my sleepdrops carried me off to lahlah land without fail and are probably the reason I have regained my sense of humor and my equilibrium - and my relationship with my man.  Good luck!! 

Philip wasn't allowed home yesterday, he has developed a rare condition following the interferrence of his lymph glands, it's called 'Chyle', it's a fluid that comes out of wound sites, it scared and upset him because it was pouring out onto the floor at one point. They've put a bag over to catch it. It has slowed down and will hopefully stop. The quack wasn't able to tell us in an understandable way what it is why it is and how long it will go on for but he cant come home whilst it's happening. He had to have another scan which showed nothing of note. His dangly bits became very swollen too but have gone down as the fluid has leaked. According to the doctor the lab report shows the removed tumour had cancer in it so did one of the nine lymph glands they took out, I guess they're not allowed to fib so the operation was the right call. Phil cried at last! He confessed that he knew exactly how serious it was the moment they put the camera up him way back in March and he's been wearing a brave face keeping his fear to himself. To make his worse night even more awful the old boy in the opposite bed died and Phil overheard his final words which were "I'm in terrible agony" How about that for an aid to restful sleep! On a lighter note I walked with him to the loo where he showed me how he changes his bag and cleans up. I was so impressed with the easy way he managed it. The bag is in the wrong place for his waist band at the moment, hopefully once all the swelling has subsided it will be more comfortable.