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.

Sorry to hear things aren't going too well at the moment. Try to keep as positive as you can for your hubby. We are here on the forum to support you

take care

hugs and good vibes

stef x

Oh crickey, what mixed news that was.  The lymph gland fluid thing sounds gross and completely unexpected eh?  I don't think any amount of research would have shown that as a potential New Normal.  The right call indeed - this is a fearsome enemy and you and Phil have done right to take it on head-first.  Our men and their brave faces eh???  I think it's great that he showed you handling the bag - to me it would have been a bit worrying if he was furtive - to me it kind of shows he's dealing with it as a sort of normal body function already.  You two are doing really well it seems to me.  Give each other a hug and a pat on the back

Lorraine 

Sorry to hear things aren't going too well at the moment. Try to keep as positive as you can for your hubby. We are here on the forum to support you

take care

hugs and good vibes

stef x