Bowel cancer, stoma, illestomy bags, my journey with my fathers illness

faerielight

does he use the round seals? they make a huge difference to leaking.. you put one either on the bag around the hole or directly around the stoma. They also protect the skin . I also used a spray called cavilon onto the skin before applying the seal. most bag companies do the seals, colopast etc. I feel for him, leaks are demoralizing.

mum2one

thank you faerielight - he uses a plastic seal that is on the stoma bag as I have had to cut this to size based oon one of his clean one

he's got some spray - but the only one he has is the one for adhesive removal, when he was in hospital he had some half moon type plaster/stickies he said he used this but they didnt put any in the take home bag, - we spoke to the gp who doesn't know what they are, but suggested if the pharmasist could trace them there order me some - but alsa the pharmacy knew what I meant, but without a product name or code were stuck.

I know a belt has been mentioned - he had one in the hospital but he couldn't get on with it...

Weve had a small delievery box this morning, haven't had chance to check it, i'll do it tonight when he is in bed

Weve got the stoma nurse on friday - so been adding to the list, from the help of everyone on here.

We've had 3 bursts today - but they think he has a bowel infection, so taken a sample for the gp to be checked out xx

mum2one

quick update - got conformation from amazon the sheet is en-route, dads really pleased.

He's had a tiring day, we had some visitors this afternoon, tired him out, and with the stairlift out of action - not helped matters, the company who maintain it have ordered parts hoping 2 days... (fingers crossed)

Another positive spoke to the OT tonight, there doing an emergency assesment on him that be the next couple of days, inbetween there arranging for a perching stool to be delievered for the bathroom, that will give him some more independance.

I have to say our doctors surgery have been absolutely brilliant, you never know till something happens, - they rang tonight to how he was this afternoon and if there we anything we need home visit etc just ring and theres no probs.

Thou I have a "disussion" with the hospital, had to ring to chase up his discharge notes, rang the ward - the nurse says need to put you on hold while speak to the ward clark....
OK...
They left the handset on (no mute)
Heard the full conversation- basically they dont know where the notes are, the nurse says to the clark I need to tell Miss X something we can't tell her the truth, ward clark says I know - lie and tell her the notes are with the consultants secetary being typed up, and Miss X will have to understand there not a local welsh person so its not my fault...

need you guess there was a few choice words.... never had someone so shocked in their life.... that mistake has held up his care plan at home.....

So I then rang the secetary to clarify has she got the notes - she says she hasn't they had them for the consultants/docs meeting last Monday - they went back to the ward......

hence my next call was to the docs to say - I've rang as asked by the way the notes have grown legs - there now sorting it out!!

faerielight

gosh, that's shocking about the notes. re the seals, they are separate to the base plate that you cut to size.. here's a link to what they look like :http://www.coloplast.co.uk/stoma/people-with-a-stoma/living-with-a-stoma/brava-accessory-guide/ and here : http://www.eakincohesiveseals.com/ they are soft mouldable sticky rings thast give an extra layer of protection around leakage.. you can order free samples. he should also ask for Cavilon spray of the skin gets sore from leaks ; http://solutions.3m.co.uk/wps/portal/3M/en_GB/Cavilon/skin-care/patients/guide/ re your dad's recovery, he will be tired, it was a major surgery and it does take time to recover. I'm glad the sheet is coming.. it's a good one, it's breathable, not at all like a plastic sheet!

mum2one

good news the sheet came yesterday, now on the bed looks amazing...

Fl.. thank you so much, never knew about the sizing guide - been trying to cut them by guess of the one that he used.

getting all questions etc ready for friday xx

faerielight

you are so welcome.. the bed sheet is a mattress lifesaver and the rings are a leak preventer! I got left to deal with it too. mine was due to medical negligence. I got misdiagnosed as IBS but my bowel had perforated. I woke up in ICU from a coma with a colostomy and I didn't even know what one was. when I got discharged, I got left to figure it all out.. thank god for the internet! after a few weeks, the stoma hole that you cut for the bags will get smaller and stabilize, then you can send a template of the size to the people who provide the bgs and they will cut them all to size.

cattermole

Do hope things settle down for your Dad soon. And lovely all the advice you have been given from everyone.

It's such a shame the NHS is so bad at passing on information particularly between areas, this would have saved your Dad, you and your family such a lot of heartache and probably a lot and time and money for the NHS as well!!

All the best and hope things start to improve for him soon. xx

mum2one

We had the first visit to the clinic today, and it went ok.... big relief.

The nurse was so lovely, she put us both as ease, (should been my mum that went, but she has difficulty out and about), but once we explained why I was there everything was ok.

There now trying a new bag - the convex design, wow after she swopped it for him, he said it felt a lot better.

he's got an infection under the stoma, so he's been given a cream on a stick, reminds me of an icecream stick that comes in the tub.

We've found why he keeps having leeks, it appears theres an additional hole just under the stoma, (there was a posh name beginning with f, think fiscal), and when the stoma works that hole works, so he's been shown how to line the bag up to get this hole in as well.

She's given us a wack of reading material, including an a5 size folder full of info, apparently its what they give all the patients - (different healthcare), and a big surprise (not), they havent got any notes from the hospital, so there working blind.

We go again next week, have an hr appointment, and there going to discuss the treatment and plans etc - long road but were at the start, may be a few bends, hill starts, even a stall or 2.... we're get to the finish line eventually.

On a 2nd positive note, we have had the cushion and mattress delievered - glad the container turned into a pump, had visions of trying to pump it up!

A massive thank you again, - going to keep this thread going as think be good to be able to vent, document the good, the bad and inbetween times and if there is anyone else who maybe is going through this, then there not alone.

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(A bit of an add on)

- Diet - we've been given a diet sheet, it is amazing, what to avoid, (porridge, anything wholemeal, fibre, lots of fruit and veg), what he can eat (a lot) and a suggestion of diet plan, so were going to look at meal plan for next week, not a rigid one, but a base idea of what we have in and shop accordingly. The first change is no to porridge and yes to rice crispies, cornflakes etc.

-care etc-
We've had calls galore today, including social services - although were managing at a push, its the fact that our stair lift has conked out, its owned by the disability side of things who dont move to fast to fix them, so we need some clout, and again our fav 2 words "bad discharge" (relating to the service from the hospital).

They're also contacting Red Cross for us, with a view to borrowing a wheelchair for him, DD has already voluntered to wheel him down to the local corner shop for his weekend papers and a alarm pendant - as having to run mum around to her appointments, and theres no one who can sit with him, so feel safe knowing god forbid anything happens he will get some assistance.

Overall in himself
Day-Been a good day, positive from the hospital, although it tired him out.
Food - eat well
Bursts - ZERO
Additions- Now has his blow up mattress for the bed and a blow up cushion for the settee

ERICS_MUM

is the "f" word a fistula ?

glad to hear you and dad had a positive day, long may it continue.

mum2one

Erics Mum - thank you, thats the word. xx