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Anybody know much about stoma care, after bowel surgery?

(104 Posts)
triplets Mon 28-Apr-08 09:17:04

My Dh is coming home today after his big op, trying to trawl thru the net mainly looking for more info on diet for him, seems abit confusing, just wonder if anyone can help lease?

Bluestocking Mon 28-Apr-08 09:29:43

Has he got a colostomy or an ileostomy?

triplets Mon 28-Apr-08 22:51:46

An ileostomy, they have now said today it will not be reversed until all the treatment is over, which is a long road, poss 12 months. He came home today but has felt sick all day, and is in the loo now poor thing as the bag is filling quickly as he is only really drinking, doesn`t want to eat. Its all so new and scary, so be glad of any help, booklet given by stoma nurse is really not informative enough and I haven`t got time to trawl!

shabster Mon 28-Apr-08 22:59:47

Cant help with medical advice that I think you need but just wanted to leave my love and thoughts with you. xxxxx

ChasingSquirrels Mon 28-Apr-08 23:10:42

no practical help - but just wanted to say my dad had a colostomy 20 yrs ago (OMG how can it be that long!!!). I don't know how he coped with it at the time - I was just a teen - but it doesn't seem to have restricted his life.
Hope your DH is ok.

triplets Mon 28-Apr-08 23:12:37

Hi, thank you for posting, Dh has a long road ahead of him, bowel and liver cancer

ChasingSquirrels Mon 28-Apr-08 23:14:01

ah, sorry to hear that, hope that things work out.

sallystrawberry Mon 28-Apr-08 23:31:08

Message withdrawn at poster's request.

triplets Tue 29-Apr-08 12:28:02

Thanks Sally that is really good info, have already been on there, a huge help!

Sidge Tue 29-Apr-08 12:34:39

New stomas can take a while to settle down, so he may find his bowels are a bit all over the place at first. If he has the runs, it's probably best to avoid eating too much fruit and veg at first whilst things settle down. Some fruits can stimulate the bowel.

I found this webpage here, it's an American site but the info is good in my opinion (I used to work on a surgical ward where we did loads of bowel surgery, resections, stomas etc.)

I hope you've got the number for the stoma nurse, you should be able to call them for advice during working hours.

trulymadlydeeply Tue 29-Apr-08 13:24:30

Nothing to add, Trips; jst posting love and virtual support. Hope you're looking after yourself as well!


triplets Tue 29-Apr-08 13:50:36

Sidge, that is very helpful, will print it off when H wakes up, it has given me some good ideas, thank you, I have alot to learn!

triplets Tue 29-Apr-08 13:51:06

Thanks Truly xx

ThingOne Tue 29-Apr-08 18:36:00

I have a permanent colostomy after surgery for bowel cancer. I had the surgery in December and all works well now. I can eat pretty much a normal diet.

You do have to be more careful about what you eat with an ileostomy. As well as the IA there are several boards for ostomates of all sorts.I found links from the colostomy association website. I'm sure there will be similar on the IA site.

He should have a stoma nurse who can help him with all the things he needs to know. Mine is great. They will come and visit you at home if you really need it. I've also found the district nurses quite clued up as they look after a lot of older people who can't quite manage their own bags.

From talking to other ostomates and people on boards it can be harder to deal with a temporary job as you don't have to. I would advise him to chat away with people and get lots of tips and he can work out what suits him. If you can't find any good boards I'll have a root around for you later.

He must take great care to look after his skin right from the start. Don't hesitate to ask for help with the skin f it starts getting sore as it is easier to make it better earlier on than if you get to the stage of ulcers.

Good luck. It takes adjustment but it will be fine.

moshiecat Tue 29-Apr-08 18:52:41

'Stodgy' food is good for thickening output, mash, pasta, white bread, marshmallows.

onlyjoking9329 Tue 29-Apr-08 19:12:09

good to see Harry is home.
sending good wishes your way sorry i can't help with the stoma stuff.

ThingOne Tue 29-Apr-08 20:27:00

This website is good.

triplets Tue 29-Apr-08 22:24:55

Thank you everyone, and hi Oj. He is still feeling sick so cannot eat and that is making things worse, an awful lot of gurgling going on, the kids understand to a certain extent, and tonight we all had to laugh as we have named the bag "GLADYS". Poor Harry, I have never seen him look so tired and fed up, I am sure I wouldn`t be coping half as well. So hurts to see him like this, Rebecca is fine, but the boys way of dealing with it is to keep away from him, they will come round in time, its all beeen such a shock in a short space of time.

shabster Tue 29-Apr-08 22:57:28

Sending all my love and thoughts to you my darling friend smile

shouldbeworking Tue 29-Apr-08 23:33:00

Triplets my dh had an ileostomy 2 years ago after surgery for bowel cancer. Like your dh he had a lot of problems early on with large volumes of very watery output. In fact he was in hospital for 4 weeeks post surgery because he couldn't drink enough to maintain fluid balance. He also found it very difficult to eat to appetite. Sadly we found no miracle cure but with time and trial and error he learnt what he could and couldn't eat. he was recommended gelatine based sweets such as marshmallows, jelly babies etc to help 'thicken' output - not the best things if your feeling sick though. He was also recommended peanut butter (smooth not crunchy) and bananas. He was told to avoid mushrooms and whole nuts and the skins on fruit and veg always upset him. Dh's output was always quite watery but after time he managed with it very well.
I echo what ThingOne said about taking good care of the skin around the stoma especially as the output is watery.
My dh's was reversed after six months which was to give the join in his bowel chance to heal properly.
I hope everything goes well for your Dh and things settle for him soon. What other treatment is he going to be having? It's been 18 months since my dh's reversal so memory may be a bit rusty. If I think of anything else I will post again.

shabster Wed 30-Apr-08 06:58:11

shouldbeworking - I could jump right into the monitor and hug you grin

Trips and I are friends in RL and I just flounder around trying to sound like I know what I am talking about. You will really, really be able to help her. Please keep in touch with her.

I know that she has felt they are in a hopless situation and you can show her there is great hope.

Thank you so much. Sending much appreciation from Bolton, Lancashire. smile

shouldbeworking Wed 30-Apr-08 09:16:41

Shabster....All hugs greatfully received grin. Thankyou!!
Triplets just thought I'd mention how my dcs reacted to dh's illness. I have 3 dcs two teenage boys and an 11 year old dd. My middle son in particular found it very difficult to deal with. He refused to visit his dad in hospital...he only went once during the whole time dh was in (6 weeks in total) and that was only because he had no choice. It was during ds's gcse years at school so that didn't help either. Ds is quite bright and had been set high targets by his school and was feeling pressured to achieve them. He was at times quite horrible to his dad. This came to a head when he told him if he was going to die to get on with it. Obviously dh was very hurt by this...him and dh are so alike it's scary and had been close. I had a long talk with ds and it turned out he had decided that if he made his dad hate him and he could hate his dad it wouldn't hurt if he did die. As the months have passed things have got better between we just have the usual parent/teenager disagreements!!!
My eldest son has always coped much better. He has a disability and I suppose it could be because he is more used to medical treatments and hospitals so found it less daunting. He quite often went to visit his dad in hospital with his mates on evenings when I was at work so couldn't.
Dd was 8 when dh was diagnosed, has always been a daddy's girl. We told her as much as we felt she could understand and answered her questions as honestly as possible.

Oh also remembered that, much to dh's dismay, real ale type beers had very undesirable effects on his bag. We like walking and country pubs were always planned in to the route. Only time his bag ever burst was after an encounter with a pint of beer!! Now we plan walks around tea rooms instead as although his ileostomy has now been reversed beer still doesn't agree with him.
I can remember some very dark days just after my dh's surgery. I seemed to be spending my days in the car driving to and from the hospital and trying vainly to fit everything else in around this. Also had my mil staying who came over to 'help' but actually didn't cope at all well with dh's illness so I was supporting her too. But we are living proof that there is light at the end of the tunnel. There is hope and, although I know how hard it is, try to stay positive. I have to say that I have coped by refusing to accept that there was ever going to be anything but a good outcome for my dh and, when he was at his lowest after surgery, I just used to keep telling myself that it was better than the alternative iyswim.

triplets Wed 30-Apr-08 09:19:20

Shabster, could you be my social worker please?
That info is great. Harry has had a large tumour removed from the large bowel, He was told just ver a month ago he has bowel cancer which has spread to his liver, we have 10 yr old triplets after losing our 14yr old son in 94. So bloody unfair. He is having chemo in 6 weeks time, for 3 months, then the plan is up to Kings in London for liver resection as the lesions are all in an area suitable for that. This will be backed up by three more months chemo, a long road.We are coping, the kids are coping, lucky we have such tremendous support from family(except my Mum) and friends. Mumsnet is a godsend, everyone like yourself instantly jumps in to offer help and support, you are all amazing ! xx

triplets Wed 30-Apr-08 09:27:18 too! You sound so positive, what stage is your DH now, does he have secondaries? He must be alot younger than Harry, Harry is 67 and I am 56! With 10 yr old triplets! You never think when you start out that life is going to throw things like this at you, it is hard isn`t it. My James sounds so like your son, he went to the hospital once and couldn`t hack it, then wouldn`t even speak to his Dad on the phone. When he came in from school yesterday he ran straight upstairs, wouldn`t say hello, poor little thing. Thomas is different he is very medically minded so is interested and just knows Dad is going to get better. Rebecca is a worrier, closest to him, but goes into nurse mode and fusses around him brilliantly, so all different. We are in Kent, where are you if you don`t mind me asking?

shouldbeworking Wed 30-Apr-08 09:38:10

Stoke on Trent. Got to take ds to college now but will be back on later...He's 45 btw

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