Colostomy Advice Please

Wishing you the very very best

A friend of mine has one. She had a temporary one after cancer surgery some years ago, and had it reversed as soon as she could.
After some years, she had a lot of problems with needing to be near a toilet at all times, despite a restricted diet, and it was affecting ability to lead a normal life. She had stoma surgery last year. Recovery time after surgery was quite short and now she can eat a much wider diet and can go out without worrying about being near a toilet.

This operation can't come soon enough for me. I'm suffering badly with diarrhoea and trapped wind which is really painful. Unable to eat and not getting much sleep due to pain.
Living on liquids - ggggrrrrr.

I had a friend who had those issues for years, and she said her 'ostomy was a relief, after years of her not wanting one.
Good luck with yours, it sounds much the same situation.

Thanks so much MissAdventure, that's good to know. I want to be rid of the pain, be able to eat, and leave the house.

You're very welcome.
I also wanted to recommend this youtube channel to you, as there is nothing this woman doesn't cover - intimacy, accidents, brands, strategies, knickers, days out, flare ups.

Perhaps if you're at home for the first weeks, you can find help on her channel.
She's very down to earth, too.
youtube.com/@letstalkibd?si=qtR8WESaEyKqzY_P

The link works, I just checked.
She also has hacks and little modifications she passes on.

She's so watchable, I was hooked for sone time, and I don't have an 'ostomy! She has had the "barbie butt" op, too, which means her rectum is sewn shut, too.

MissAdventure

The link works, I just checked.
She also has hacks and little modifications she passes on.

She's so watchable, I was hooked for sone time, and I don't have an 'ostomy! She has had the "barbie butt" op, too, which means her rectum is sewn shut, too.

Thanks. I will take a look. Was wondering about the 'Barbie Butt' as many people in the online support group mention it with regard to mucus.

When I had my op back in 1990, yes I had what is now called the 'Barbie Butt'. Took a long time for that area to heal, but have never, in all these years, ever had any further problems of any sort in that area.
Don't look for problems - go along with whatever the medics advice and stay positive.
It is a life-saving and life changing (for the good) operation.

I have a permanent colostomy, diagnosed with bowel cancer in 2015 and had my operation in January 2016.
Reversal was not an option for me because of the area the tumour was in.
I cope very well and never had any problems with my stoma, no skin breakdowns or soreness.
After care where I live is as rare as hen's teeth so I have just put on my big girl's knickers and got on with it.
If you need to talk to someone you can message me.
Stay positive.

harrigran

I have a permanent colostomy, diagnosed with bowel cancer in 2015 and had my operation in January 2016.
Reversal was not an option for me because of the area the tumour was in.
I cope very well and never had any problems with my stoma, no skin breakdowns or soreness.
After care where I live is as rare as hen's teeth so I have just put on my big girl's knickers and got on with it.
If you need to talk to someone you can message me.
Stay positive.

Thank you. Good to hear someone so positive after reading lots of negatives.

As I said before, I have had a stoma for 25 years, of course it was hard to come to terms with as I was only 56 at the time. But it did literally save my life, my surgeon was incredible. The care that I had from the stoma nurses was very good. I think what sums it up is that if you have no option with these decisions made for you, you have to trust those decisions and just go with them as I'm sure you will. I hope everything goes well and you have a much better, pain free way of life.

Marg75

As I said before, I have had a stoma for 25 years, of course it was hard to come to terms with as I was only 56 at the time. But it did literally save my life, my surgeon was incredible. The care that I had from the stoma nurses was very good. I think what sums it up is that if you have no option with these decisions made for you, you have to trust those decisions and just go with them as I'm sure you will. I hope everything goes well and you have a much better, pain free way of life.

What I have learnt from the replies I've had is that (mostly) the stoma nurses seem to be very good and helpful. I'm sure they have heard and seen it all and know all the answers.
I really don't have a choice if I want any quality of life back and get rid of the almost constant pain.
I want to be able to plan to go out and not worry about accidents. Not be up half the night with pain and diarrhoea.
This operation can't come soon enough for me.

Thanks everyone for the support. If anyone had told me a year ago that I would welcome a stoma, I would have been horrified, but it's all relative isn't it?

It is all relative, a neighbour of my Mum's all those years ago had a stoma and I used to think it must be an awful thing to happen to you, but it isn't, life goes on and you do more than just cope. You can live life to the full. We are all a lot stronger than we think!

Had a bad couple of days with terrible wind and diarrhoea. So painful, and I cannot leave the house. Feel totally drained and frightened to eat, so back to fluids only.
Can't get any proper sleep, so only short naps between bathroom trips.
This damned disease does rob you of any normality in your life. I can't wait for this to be over.
I have just ordered some new nightwear for my hospital stay.
I'm assuming nighties will be more comfortable than pyjamas?
Did you ladies buy stoma pants with pockets to hold your bag? If so, which ones? My stomach is permanently swollen, so not sure on size??
Also wondering about a hernia belt?
Any advice appreciated.

Can you phone your consultant"s secretary and say you are in a lot of discomfort and will he please consider you for any cancellation slots please?

There are always people who have to cancel and it's actually useful for the secretaries to know who can come in quickly.
🤞

NotSpaghetti

Can you phone your consultant"s secretary and say you are in a lot of discomfort and will he please consider you for any cancellation slots please?

There are always people who have to cancel and it's actually useful for the secretaries to know who can come in quickly.
🤞

I have already said I will take a cancellation, so hoping that will happen. That's why I'm asking lots of questions and trying to get organised as much as possible.

I have an old school friend visiting from OZ next week so hoping it doesn't happen in the next few day s though!

When I had my operation I wore nightdresses for the first few days because I was catheterisation and it was easier to manage. Once the catheter was removed pyjamas were comfortable.
May I suggest slippers that you can just slide your feet into because you won't be able to bend to adjust footwear initially.

To those who mentioned the Barbie Butt, my Mum had one of those and would have loved and laughed at that description.

Mum had bowel cancer twice (different types) and surgery twice but lived very happily and healthily to nearly 97. She called her colostomy her friend and once she got used to it found it to be very hygienic and straightforward.

The firm that supplied her stoma bags, wipes, air freshener, disposal bags etc were fantastic for all those years. Her stoma bag holes had to be cut by hand as they were an unusual shape.
They never let her down and such friendly staff.

I have a friend who had hers reversed but she often says she wishes she didn’t as she now has accidents.

Hope all goes well Zacsgranny.

I met my old school friend yesterday and had a great trip down memory lane. She was a nurse, so gave me a few tips about being in hospital.
Arrived home to find that my new nightwear had arrived, so that's good. I'm now deliberating whether to buy a V shaped cushion as a few people have recommended one. I always sleep on my side, so this might help me stay on my back.
Any thoughts?

For what they cost, I'd buy one anyway.
Even if it doesn't particularly help with the sleep position, they're quite nice for propping you up in bed to relax.

I used to wake up on my side, cuddling the pillow, rather than staying on my back.

If you get one now, you may have time to adjust to becoming a "back sleeper".

I have been for my pre - op assessment today. Met a lovely Nurse who has a stoma and was happy to chat.
Just waiting for a date now.
She did warn me that I may need a blood transfusion, a Morphine Driver and a pain injection in my spine and that it was major surgery, even if gone robotically.
Mmmmmm

Of course this is major surgery. No doubt about it. But, often carried out keyhole these days, so no lots and lots of stitches.

Try not to overthink this. Ostomy Nurses will be there to advise and help for the future.

Once you have recovered from the trauma of a major operation and got used to dealing with this stoma, you will get your life back.