General Discussion

ElaineG

Feeling Sad

My husband Chris had surgery & permanent Stoma in August 2018. He is struggling with the Stoma output pancaking. He has tried everything he has been offered to solve the problem but nothing seems to help. The output is also so erratic he never knows what to expect from one day to the next. For example he has had to change the bag twice in the last hour. I feel so sad for him, he’s not the confident man he used to be. Any tips or advice please?
We’ve had another scare this evening, our 5 year old grandson was blue lighted to hospital with breathing difficulties and abdominal pains. My daughter just called from hospital and thankfully he’s stable and feeling much better but they are admitting him overnight for observation . My family seem to have had our share of health problems in the past 2.5 years.
Love & Happy New Year to all :x::x:

Mrs2017

Sorry to hear about your grandson and glad to hear he is feeling better. Has your husband tried using drainable bags ? My husbands stoma is also very erratic and sat watching a film tonight it has filled two bags but with the drainable ones it just takes a couple of minutes to empty and saves having to change it. He does a change just once a day and then drains as and when needed.
All the best Chris :x: :x:

ElaineG

Hi @Mrs2017 Drainable bags have not been offered or mentioned to him. Are they not messy? Chris says that when he has to change often it gets quite sore so maybe drainable bags are the way to go. Thanks so much for your advice :x::x:

Mrs2017

Hi @ElaineG , my husband was given the drainable bags from when he had his operation and has been using them for a year now, as you say it helps with the soreness as he only changes once a day, when he drains the bag he kneels down in front of the toilet and uses a gardening kneeling pad for his knees, he says he has it down to a fine art now! He also finds them useful if there is a lot of gas in the bag because it can just be let out of the bottom of the bag. He uses the Dansac brand, your supplier should be able to give you some to try, regards Chris :x: :x:

KatieR

Yes We much prefer bags you can empty ..The skin does not get as sore ...
For Pancaking we used a squirt of low fat cooking spray into the bag so that the poo slips down away from the actual stoma
John also prefers his stools to be a bit runny so he has fresh orange and plenty fruit Then he just kneels on a Puppy Pad and empties his bag into the loo ....WD40 stops the poo sticking to the loo ! Then he has a wet wipe and or/ a tissue to clean the bag if needed ...its no messier than wiping the original exit and easier as you can see what you are doing We think the location of the old exit was actually a design fault and stomas are easier !
You can also tell if you are well hydrated by the colour of your urine It should be very pale yellow and not smell bad If its dark yellowy brown you need to drink more water John also prefers tepid water as its easier to drink
I have got to go to bed
Keep in touch
Cath :x::x:
Sorry just overlapped with Mrs2017 John changes his bag when he has a shower ...not every day :x:

pippajane

Hi Elaine
As you know I’m about six weeks behind Chris
I’ve stayed on the drainable bags as I find them easy to manage , my output is really very erratic and it’s kinder to my skin. I Change every day after a bagless shower.
I just stand at the loo to empty and it’s so easy also means that I’m never carrying the weight of a full bag and if it’s a gassy day it’s easy to get rid of it without constant changes
Hope things improve for you both soon :x::x:

Baxter2

Oh @ElaineG I'm sorry to read about the difficulties you're both experiencing but heartened to read all the suggestions and words of encouragement from our lovely forum friends! I've never had a stoma so can't comment.

I hope things improve and soon!

Lots of love,

Karen💛💜💙❤️💚

abergirl

Hello @ElaineG ...like the others my hubby had drainage bags...he stood at the loo to empty. Toilet paper in the loo helps prevent splashing.
The stoma nurses ordered the bags and kept a check as the stoma changed size as time went on.
He changed the bags every other day....we were meticulous in caring for the skin on his tummy and only occasionally had a sore patch...used the stoma powder for that.
I do hope you can chat with his stoma nurses..ours were so helpful and kind. Very best wishes.:x::x::x:

sweetcheeks

@ElaineG , poor you , I wish your grandson a speedy recovery,
I used stoma lubricant whenever I changed Geoff’s bag, Geoff really struggled with his bag , as well , for him he never excepted it a refused to even try changing it , hence my job for 6 months!!
Good luck :x::x::x:

Stillme

Hi @Elaine I have just messaged you but also to say I hope your grandson is ok now, such a terrible worry :x::x:

lilmil

Hello @ElaineG if i get sore i use the mamuka honey bags which helps to heal the skin around the stoma It works for me. I use to different typs of bages that are domed in shape and drainable. The other i use is sensursa mio as i find the honey ones dont do will in water! This one does. Both are domed in shape. Ask your stoma nurse for some samples. Ask for ileostomy bads (drainable).
Hope this is helpful.
Lots of love
Laura. 💖💖

DianeS

Hi @ElaineG so sorry I can’t help with the bag, but just wanted to say how sorry to read about your Grandson, and I hope he recovers soon. Stay strong, life can be so hard sometimes. Sending love Diane :x::x:

ElaineG

Thanks to you all so much for your advice and suggestions. We will speak with the Stoma nurses tomorrow.
What would we do without all the lovely people on this forum? :x::x:

KatieR

Hello @ElaineG How did the meeting with the stoma nurse go ? Did you get some different bags to try out ?
Please let us know how your Grandson is getting on ... we are all worried about him now ❣️
Cath :x::x:

ElaineG

Hi Cath thanks for your concern. Chris has requested some samples to try so hopefully they will arrive soon.. I’m glad to say that Arthur came out of hospital on Sunday night but the community nurse visited him today and will be back tomorrow. He is much better thankfully but it has been a worrying time. To complicate matters he was diagnosed with a peanut allergy recently which is just one more thing to stress about. Recent times have hilighted that the most precious thing you can have is good health. Riches and possessions are just not important by comparison. Sermon over 😂 😂
Love Elaine :x::x:

george1960

If he is getting sore around the stoma then the cutting out part is too big cos the poo will irritate the skin. Also to try and stop pancaking rub a little baby oil just inside the bag, this should help with it going down the bag.
Please don't get downhearted once you have the correct bags and the stoma starts behaving your be fine. Try eating some dry food no spicy, gravey, peas, beans etc, crackers, toast etc, or could it be too dry if that's the case take a teaspoon of lactulose every time you eat a meal.
Good luck :x:

ElaineG

Thanks for the tips @george1960 I will tell Chris what you've advised. He actually went to a Stoma drop-in yesterday and came away with some more different things to try.
Elaine :x: