New to stoma

Hello Kris39

Welcome to the group I have found it an amazing place to have support when I was managing my stoma 

Does your mum have an Ileostomy or colostomy? 
Before my diagnosis I didn’t know there were different types and had a huge learning curve. So once you say what op your mums had there will be lots of advice from friends here that are further along the journey and can share their experiences 

Take care 

Hi Artsie,

Thanks for your response. 
My mum has a colostomy, it’s been about 12 days now since her Op. The stoma nurses have been in touch but there’s nothing better than first hand experience. 

Many thanks

Kris x

Thanks Kris39

The stoma nurses are wonderful and are so important early days to get the right product. I had a few issues after that I raised here and got so many tips. It’s worth typing any questions in where you see the magnifying glass and past posts come up instantly  Also you can click on names to read their journeys

I am an Ileostomy which has a very liquid output and needs emptying every two to three hours colostomy’s output is different however changing and the basics are the same 

So if there’s anything I can help with. Ask away 

Hello Kris and welcome to the group. 

I have a colostomy, and in my experience it took some time for things to settle down. Your mum is not long out of surgery, so it’s early days. It took me several weeks to get my appetite back, so very small portions was the way I went, because I really couldn’t eat much at all and my stoma took a week to “get going” after my op. Is your mum passing wind into the bag, and does she have some output? It really is a big adjustment to make and is tough at the start. Baby steps at this stage.

Sarah xx

Hi Kris

I had a colostomy 5 weeks ago and I am still struggling with some things. It's only 12 days since your mum's operation so I am not surprised she is finding things difficult.

I got lots of good advice from people on this site and from my stoma nurses too. Here are a few suggestions

i) How does your mum change her bag? I was getting really bad backache too until someone suggested that instead of bending over the loo to change my bag I do it standing up at the basin. Line the basin first. I still get some back ache but it is nothing like as bad since I changed to the basin method. A walking stick also might help, especially if your mum is an older lady (I am 72)

ii) ask your stoma nurse to try you on different types of bag. If she has an open-ended bag, your mum can gently let out the wind in the bag (if there is no other output). I tried several sorts and am now using the sort where you can cover the filter and open it up again when you want to let out wind.

iii) I am still very bloated. I had my follow up appointment with the oncologist on Tuesday and he said I can expect this to continue for up to six months. The only way to avoid more wind is for your mum to be really careful about what she eats. I am still on a low fibre diet and scrupulously avoid beans, cabbage, broccoli etc. Macmillan have some good dietary advice if you can navigate your way round the site.

iv) I didn't eat much for 2/3 weeks and lost over 3 kilo in that time (on top of about 12 kilo during chemo before surgery). Again, the oncologist told me that this was to be expected. But you might want to think about buying some nutritional supplements as a temporary measure. When I was in hospital they gave me Ensure twice daily and I have now  bought some myself on the internet. Did they give you mum anything like that? 

Above all, don't have unrealistic expectations. Once thing I learnt early on from responses to my posts on this site is that it's a long haul before I can expect to feel anything like back to my usual self.

Good luck to you and your mum.

Limassol 

Thanks Artsie, our local stoma nurse should be visiting mum soon so we will be sure to ask lots of questions. Thanks again for responding x 

Kris 

Hi Sarah,

Thanks for responding on my post. 
my mum is passing wind into the bag and it’s a small noise and she kind of clenches up when this happens, which I’m guessing is because she is getting used to this big change. I am not sure about the output part so will ask the stoma nurses about this. 
It really is a big adjustment, hopefully as time goes by it gets easier/more comfortable.

Kris x 

Hi Limassol,

Thanks for responding and the advice.

Mum changes her stoma bag sitting on the toilet, so I’ll suggest about standing up and doing at the basin. She’s 65 and always been actively fit but if we need to get her a stick we will. 

I will definitely speak to the nurse about the different bags, as not sure this is the right one for her. Mum is also bloated and has her follow up next week, but she is very much in the beginning of her healing process so I know this will all take time but I will check out dietary stuff to avoid eating  foods that will produce more gas. 

Mum is the same, it’s almost like going back to eating portions like a baby again, we still need to discuss when chemo will start & know this won’t be easy either but will get some of these drinks as doubt she will have much of an appetite. They haven’t given us any of these supplements but will enquire about this. 

Thanks very much there is definitely a long road ahead. This is a completely new world for us.

I wish you all the best in your recovery and thanks again for your suggestions. 

Kris x 

Hi Kris

When I say output, I mean poo. Is she passing poo into her bag? It does feel a bit odd passing wind at first, but it’s a good sign.

Sarah xx 

Hi Sarah,

Oh yes, she is passing stools, she changes her bag twice a day. 

I think once the stoma nurse has visited things will be much clearer on how it’s meant to work and hopefully we will worry less.

Many thanks

Kris