Decembeard

Life with bowel cancer

HH

Stoma

thank you so much for all the advice and support. I need your help today. We have a colostomy and it may not be reversible so we need to make the best of it. Can you advise me
1) best products
2)Adhesives
3)preventing leaks
4)minimising gas
5)Tips and tricks for bag changes
6)what extras have been useful in your kit
7) what effect foods and drinks have on it

thank you :x::x:

Mrs2017

Hi, @HH my husband also unexpectedly ended up with a colostomy which may not be reversible which he has had for a year now. He uses Dansac drainable bags which were the original brand given to him by the stoma nurses, I just went on supplier web sites and ordered lots of different samples but in the end he had stuck with the original bags he was given. Luckily his stoma area is quite even so he has not had to use any of the fillers or tapes available. I guess he has also been lucky never to have any leaks or accidents but gas is always a problem but then he has never really changed his diet to minimise this, he just lets out the gas if the bag fills up. I did get some deodorising drops to put in the bag if we are going out to try and reduce the smell which to be honest is the worst thing for him. Another thing is originally you will need to cut the holes but once the stoma has settled you can get pre cut bags which makes life easier. Another thing I got him were some colostomy wraps which he wore as a cover up for swimming but more importantly are support wraps to wear for manual work which the nurses sorted for him. If he can’t have a reversal he will then look into irrigation. All the best Chris :x:

Lirio345

Hi @HH, Tim should see a specialist nurse who will go all through this, including ordering of stoma bags etc. If he doesn’t see her today I would ask, Kim :x::x::x:

HH

Hi Kim he has seen them but they literally come and do a quick change then go. I think if we had people who have experience of the day to day management it would help us a lot :x:

charleyb

Charlie had a fab stoma nurse, she ordered different bags for him to try, as there are so many different ones. I also went online, and some companies do free samples, so you can see what works for you.
Charlies was an ileostomy so slightly different, but he changed his bag daily, choosing to shower with it off and then attach a new bag after the shower. He needed the sensitive bags as the skin around his became really sore, he also used an aloe powder before applying the bag and that seemed to help.
In terms of foods its trial and error, we were always told no pips, seeds, or skins, but to be honest after about 3 months he ate everything and anything. Some foods are very windy, currys esp and fish is really stinky!!! But to be fair unless he emptied the bag i did not smell it at all. As a warning the bags are very noisey to start with, do not panic it settles down, TH will have no control over this, and at first it really caught Charlie off guard, but after a couple of weeks it barely made any noise (unless he had a curry!!!)
Charlie was also given a stoma guard, really useful for going to the gym etc.. so would be worth getting one of those.
I`m sure there will be lots along with excellent advice , but you could also use the search option as there will be loads of posts about it :x::x::x:

Lirio345

Hi @HH, I am so surprised and disappointed that they haven’t spent time with Tim, I just wonder if they might leave it to his discharge day but that might be wishful thinking. I would encourage Tim to ask tomorrow what support will be receiving and insist on some training.
I had daily visits and training. On discharge I had home visits for the first week or two, and then hospital check up after 3 months. She is on the end of the phone. Although I have a stoma I hardly know where to start. My nurse set up an order with Charter for stoma bags (these have to be cut to size using a template, and the size and shape is likely to change over the coming months), spray adhesive remover, skin barrier wipes, rubbish bags, and dry wipes.
I only experienced one short period of leakage and it was sorted by my nurse who suggested convex bags. I eat virtually anything, but kept a food diary and discovered cooked mushrooms are the main taboo food!
PLEASE though work really hard to get Tim the support he must have from the stoma nurses, this is not a DIY procedure and really needs to be taught.
Having said all of the above my stoma is absolutely fine providing it does what I say, - I do not let it dictate to me, Good luck, Kim :x::x:

Salgal

Hi @HH I have a permanent colostomy, I’ve had it for 6 months. I really cannot add much more than what has already been said. My stoma nurse visited me daily while in hospital, and I wasn’t allowed to be discharged until she could see for herself that I was able and capable of cleaning and changing my stoma. She did it for a couple of days explaining exactly how to do it, and then she watched me do it on several occasions. She also supplied me with a Radar Key, and a bag full of essentials and explained she would do my first order and how I then went about it. PLEASE make a nuisance of yourself and get her to Tim, daily. Gentle hugs :x::x::x:

michael

Hi, not sure if this helps much, but I changed my (small private) loo washbasin for a Belfast sink with a high looped mixer tap. That way I can easilly adjust the water temperature and wash out the bag several times a day so it never fills up.

You can regulate gas by using the little stickers over the vent that are supplied in the pack.

My bags last 2 days apiece unless I want a change.

For garments you might like to try Vanilla Blush in Glasgow.

Cheers
Michael

kitti

Hi @HH vanilla blush as said above are excellent and their products have given me confidence, infact you may be able to get a couple of their products via your stoma nurses free as I did. Also fizzy drinks are a no no for me however mines a illeostomy so not sure if thats a bit different. I cant tell you how much difference a good support belt or stoma underwear makes, they are well worth getting. Hugs :x::x::x:

Chelts

1) best products- I've used Dansac for over a year now -12 months as a disposable colostomy with no real issues except that on occasions I have found the adhesive on them to be dry and the bag unuseable. I have had an ileostomy now for 3 months and have nothing but problems with leaks, especially overnight. The reason being that as the output does not go through the large intestine, it is still very liquid and looks for any weak point to leak out of. Worked with the stoma nurses adding wafers and wings which seemed to solve the issue but now i'm back on Filofax chemo my dairrohea has incresed and I've had 3 leaking bags just today!!
2)Adhesives- never used any
3)preventing leaks- Don't lie flat allowing the output to 'pancake' around the stoma.
4)minimising gas- avoid fizzy drinks or allow them to go flat.
5)Tips and tricks for bag changes- Sit up to prevent leaks out of the side.
6)what extras have been useful in your kit- wafers
7) what effect foods and drinks have on it- Don't really bother with what I eat. Have noticed that grapes and beansprouts come out the same as they went in!!