Anyone else got an ileostomy poo bag?

I’m so scared in 2 weeks I get my large bowel removed and ileostomy due to paralysed bowel from the ms I feel so alone please if anyone has or knows someone with one please contact me X

Qeiane, I personally have not had this, but my sister had the operation last year, and what an improvement she has noticed and so much more comfortable for her. Hope it goes well for you. Good luck.


H Qeine, I haven’t had it either… but have also heard that it’s a huge improvement. Makes life so much easier.

It’s very scary for you & I can understand that. Such as shame you can’t just have it done right now so you wouldn’t have the 2 weeks to think about it!

Have you posted on Everyday Living? You might find someone on there who’s had it done.

Are your fears about the operation itself, or about living with the poo bag?

Qeiane… even though I’ve not had it done… or others on here… please come back here to chat about your fears. I know I’m not the only one who will be very happy to support you through this… hold your hand in cyberspace… nothing is taboo on here… tell us anything.

Thinking of you and really hoping you’ll post again.

Pat xx

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Hello qeiane

I don’t have personal experience of having a stoma but I have nursed a few people with them.

I can understand why you feel lonely. You will get excellent support from the stoma nurses and before you know it, you will be fully indpendent in looking after your own cares…that’s a pomise

Take care, Noreen xx

Ps; sorry to use the quote facility but it’s the only I can repy at the moment.



I am so sorry you have to go through this. Like the others I haven’t had this either, but I have also read that most people that do have it find it a huge relief in the long run.

As Pat has said to you Every Day Living might get you more results from people that have had the same procedure

I do hope you will come back and let us know how things are going for you.

Take care and good luck,

Nina x

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Qeiane, I had a temporary colostomy some years ago and I found the Ostomyland forum very supportive:

(edited: I hadn’t noticed I’d pasted the wrong link - apologies, especially to Qeiane.)

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Qeiane as the others have said, we’ll support you where we can. The stoma nurses are fantastic and the products have come on a long way, many people I’ve nursed are so much happier than they were. Good luck

Cath xx

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Thankyou I just wish I could find someone similar to talk to…but thank you for the kind replies X

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No personal experience but had one of those 3 minute conversations that covered soooooo much, I was buying gluten free stuff and we talked Crohns briefly, she patted her tummy and winked with a “that’s all sorted now”. I get the distinct impression that it really can give some freedom! Sorry I can’t help but good luck

Sonia x

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Have a chat with one of the stoma nurses. I am sure there will be a pevious patient who will be happy to chat with you about life with a stoma and hopefully one day you can pay back the favour.

Noreen x

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Hi Quiane

Sorry I have not managed to post earlier, but whilst I have no experience with your question, but sending you very best wishes for your appointment.

Pam x

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I echo Blossom’s comments: the stoma nurses are there for moral support as well as practical support. They won’t let you out of hospital until they are happy you know how to manage your ileostomy and can do all the daily care yourself. And once you go home, the stoma nurses are still there to support you - you should be given details of how to contact them if any concerns arise in future.

Also, that forum I recommended is worth a look - there are plenty of people with ileostomies on there and there may be someone who has had one for similar reasons to you. I got so much support from them, I found them warm and welcoming and extremely helpful.

It is scary, it is worrying but you’ll get through and you’ll cope. And you may find that it improves your quality of life.

I’ll be keeping you in my thoughts over the next few weeks.


Hi Quiane

My wife has just gone shopping with her best mate, who’s dad has just had one fitted if that is the correct term. He was up and about no probs after a week but he did become cantancerous (spelling) due to infection because the stoma nurse has said dehydration. So keep hydrated


PS I am cantanckerous without an infection I get double cantankerous with an infection theres three different spelling for ya


Hi Quiane,

I haven’t got one myself but I know someone who has had one. She had ulcerated colitis for years and was in and out of hospital.

it gave her a far better quality of life. You would never know she has one and she wears itsy bitsy mini skirts. She now talks to other people who are due to have one so please speak to your stoma nurse who will put you in touch with someone.

I will be thinking of you.

Mags xx

Quiane look on the blogs and Twitter I did post a young lady in a bikini with a bag she was raising attention on social media about them. Don. Found out tonight you need to be strict with diet friend dad was playing up demanding stuff shouldn’t have. Atoms nurse gave him see here talking to were as his daughters couldn’t tell him off. Bless him he is 84

Hi Qeiane

I have a friend who has a stoma and a bag, following treatment for bowel cancer, and he is positively glowing with praise about it. He says that it is easy to manage and he finds it very liberating. Mind you, he is one of the most amazingly positive and active people I have ever come across, and is still working on all sorts of community projects all over the place.

qeiane your not alone I read this and posted it on one of my blogs find it here


hope your OK

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