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

mum2one · 7 September 2014 at 12:54AM

I appriciate that bodily functions may not be the best topic to bring out in the open, but I really could do with some experiences.

The reason I ask - its on behalf of my father, - he went into hospital with a blockage in the bowel, but when they opened him up to remove the blockage they found cancer, and as such they have removed over 90% of the bowel and (hopefully) all the cancer... and ended up with a stoma and the bag,,,

The issues were having is the bags seem to be splitting on the side, whether he has a dodgy batch I dont know, he is suppose to only change the bag once a day - but with the bursts the last couple of days its been 6 to 10 bags a day.

Also there filling very quickly, whether that is because he only had the bag for 3 1/2weeks, and been home days...

What we were wondering about others experiences..
Did you have any problems and how did you solve it
Did you find it took time to settle down

Any experience we would be very grateful for,

Many thanks in advance xxxx

Since I started this diary, a lot has happened, what started off as a help, we have no support from anywhere, without sounding daft, he was wheeled to the car, left to drive his home 80miles.

During this time we have had an up and down journey, from recovery of the cancer, to the ups and downs of the bag, secondary cancer, to Dad losing his battle with cancer.

During this time we have had so much support, I can never thank everyone enough for all the help, support, good wishes, and whilst this thread was related to dads journey, I only thought it would be fitting to continue whilst sorting everything and arranging the funeral. xxx

Torry_Quine · 7 September 2014 at 1:02AM

He should have been given contact details for the local stoma nurse who deals with these issues. If not his GP will be able to find out or even the practice nurse should be able to help. It is early days and should settle down. Also has he been given dietary advice as this is very important too.

mum2one · 7 September 2014 at 1:21AM

Hi TQ,
It has been a farce to say the word, he's seen a district nurse, they came out Thursday, as for a stoma nurse I had to arrange that (as well as the district nurse), they dont see him till friday.
As for the GP they have been brilliant, but they have said there working in the dark, as the hospital should have sent discharge information, arranged district nurse, stoma nurse and supplies, they didn'tt any.

As for dietary advice, all he's been given (I was at the hospital with him), was to eat as much as possible any foods he wants, (he's lost a lot of weight in the last mth), the only specification was that he has to drink a minimum of 1 litre of blue top (full fat) milk a day. The dietician rang on Friday we told her what he had eat

fri
Breakfast - Porridge
Lunch - toms, bacon, mushrooms, rice pudding
Dinner, - beef in red wine, potatoes

Sat (planned at the time)
B - porridge
L-soup rice pudding
D - Pork chop, veg, potatoes - ice cream.

In was hospital 70 miles away as it happened when we were on holiday, so back home hes under a different health care, - theres a complete lack of communication.

As for his GP I spoke to them Fri evening and they said see how he goes and ring Monday...

We're on Pjs no 6, 5 sets of bedding - the washing machine just ready for a rest x

Torry_Quine · 7 September 2014 at 1:43AM

mum2one wrote: »

Hi TQ,
It has been a farce to say the word, he's seen a district nurse, they came out Thursday, as for a stoma nurse I had to arrange that (as well as the district nurse), they dont see him till friday.
As for the GP they have been brilliant, but they have said there working in the dark, as the hospital should have sent discharge information, arranged district nurse, stoma nurse and supplies, they didn'tt any.

As for dietary advice, all he's been given (I was at the hospital with him), was to eat as much as possible any foods he wants, (he's lost a lot of weight in the last mth), the only specification was that he has to drink a minimum of 1 litre of blue top (full fat) milk a day. The dietician rang on Friday we told her what he had eat

fri
Breakfast - Porridge
Lunch - toms, bacon, mushrooms, rice pudding
Dinner, - beef in red wine, potatoes

Sat (planned at the time)
B - porridge
L-soup rice pudding
D - Pork chop, veg, potatoes - ice cream.

In was hospital 70 miles away as it happened when we were on holiday, so back home hes under a different health care, - theres a complete lack of communication.

As for his GP I spoke to them Fri evening and they said see how he goes and ring Monday...

We're on Pjs no 6, 5 sets of bedding - the washing machine just ready for a rest x

https://www.colostomyassociation.org.uk should bea ble to help you.

I would contact he ward he was in and explain the situation and he needs better dieteray advice as you cn't just eat anything with so much large bowel gone.

Ric87 · 7 September 2014 at 9:57AM

Hi mum2one, I've just recently had a stoma bag removed but had real problems in the beginning. First thing to do is speak with the stoma nurse/ company who provide your dad's bags about convex bags. I was going through 5 bags a day until I had the convex and then managed 2 days per bag. Also ask for a product to remove the bags, it's a spray (can't remember the name). It's important to clean around the stoma well and keep any skin the bag is sticking to dry before putting a new bag on. I used kitchen towels. I'd shower, then kitchen towel dry the area in the shower and then put the bag on still in the shower. Everyone's different but white bread/rice/pasta, cheese, marshmallows, jelly, bananas, flapjacks, pastry & meats all helped me to bulk up output which helps stop leaking. He should also get a prescription for Imodium and possibly iron/ folic acid if he's getting tired. Another helpful thing was support belts, I used 2 together, one that clipped on the bag and another that covered the bag and wrapped around me. I know it's tough but honestly it does get better and it will become manageable. Good luck!

mum2one · 7 September 2014 at 10:30AM

Thank you both, I'll have a good look at the link and also contact the ward. I really of appriciate you both taking the time to reply means a lot xx

ukmaggie45 · 7 September 2014 at 2:08PM

mum2one wrote: »

What we were wondering about others experiences..
Did you have any problems and how did you solve it
Did you find it took time to settle down

Any experience we would be very grateful for,

Many thanks in advance xxxx

Hi there mum2one, I've been reading a blog called My Baglady Life. She has a bag for different reasons (Crohns), but goes into quite a lot of detail about how she deals with it. I can't point you to any specific posts, but her blog is worth reading - I think she writes very well, and doesn't pull any punches.

Very sorry to hear your Dad is having so many difficulties. I hope that he gets some more help SOON! Awful to discharge without arranging follow up care after such a big and life-changing op! :mad:

Best wishes from sunny Bwlchtocyn (though more usually from Liverpool

)

faerielight · 7 September 2014 at 5:46PM

hi, I had a colostomy for 3 years and had it reversed 8 mo9nths ago. You should be able to speak to a stoma nurse during the day mon to fri, just ring the hospital and ask the receptionist to 'beep' the stoma nurse. I had problmes with leaking bags. There are many different types of bags, he needs to be given a selection to try. if his stoma is flat against the body, he might need a convex one.. I had to wear those myself.Also, try emptying the bag after every bowel movement. don't let the bag get too full. I found dairy made me more windy and the bags blew apart.. double check the dairy as it may be causing too much gas. I drank soya mik and found the gas settled down. Can I point you to a great group .. the colostomy association facebook page .. you can post questions 24 7 and there are so many lovely helpful people , plus the colostomy association has a 24 hour helpline and you can apply for a free magazine. http://www.colostomyassociation.org.uk/
there is a link to the facebook page at the bottom of their home page.

faerielight · 7 September 2014 at 5:48PM

also, please ask the dr or nurse to arrange for him to get measured for a hernia belt,.. he is more at risk after his surgery.. I'm on my 3rd hernia. Get him an incontinence sheet for the bed too.. It will save the mattress.. you can get a free one but they are very plasticky and sweaty, I got this one, it's not cheap but it doesn't feel sweaty at all..http://www.amazon.co.uk/Hippychick-Tencel-Mattress-Protector-140x200cm/dp/B001CM8TVC/ref=sr_1_10?ie=UTF8&qid=1410108732&sr=8-10&keywords=hippychick+mattress+protector

another point.. don't be bullied into only having one bag a day , everyone is different, I changed the bag 4 times a day. I know they are trying to cut down on the amount of bags people need, but it is ridiculous, change as ,many times as you need!

mum2one · 7 September 2014 at 11:41PM

ukmaggie45 - massive thank you book marked the blog, have a good read tomorrow, xx

faerielight a massive thank yas well, just ordered the sheet for the bed, work out well as they were in the process of getting a new bed but we had to cancel the original one as it was due to be delievered when he was in hospital - think its going to be postponed for a few mths, but the posh sheet will go asap.

def ask for a change of bags - it looks like his stoma is a sticky out one, been a ngtmare again the last 2 days - hes leaking even when he has just changed a bag, ring the stoma nurse 2mor.

Also have a look at the link

Thank you to everyone for being so helpful and supportive at this time xx

ERICS_MUM · 8 September 2014 at 1:07AM

what a lovely supportive thread, putting the OP at ease with a difficult issue and giving such helpful replies. I hope OP and Dad can sort things out.

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

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