Colostomy Advice Please

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!

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.
🤞

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.

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!

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?

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

Wishing you the very very best

My friend had one over 20 years ago because she had a large tumour (thankfully benign) and although there are a few foods she can't eat, she manages very well.

Franbern what a positive post.

One way or another a lot of us have modern medical interventions which help us to live long enough and well enough to see our children and grandchildren grow.


Truly wishing you all the very best ZACSGRANNY

ZACSGRANNY - I am sorry you have had a bad 24 hours. Hopefully after the surgery this sort of bad day will ease.

I can understand how daunting this must feel - but surgical procedures have moved on so much and thankfully there are support nurses and voluntary groups too.

I hope very much that it will all be a great success for you and give you a new lease of life.

I had an permament ileostomy back in 1990 due to Ulcerative Colitus. For some years I was on my local Ileostomy Association cttee, giving support to those with these and those people in hospital having one.

It is life changing, and in so many cases totally live saving. I put my off for nearly ten years, frightened at the idea of 'a bag'. Back then so often the subject for comedians. Afterwards I felt really angry with myself, as I virtually lost those ten years of my life as I was so unwell for so much of the time.

Back then it was a very major operation and I was cut from between breasts right downwards (one of my daughters saw the dressings being changed once when i was in hospital and called it my 'teddy bear' stitches!!!

I was in hospital nearly two months and then many months afterwards to get recovery. BUT.....it did give me a proper life back and as I experimented with different foods I could now eat and enjoy, I was able to pick up all the activities I had given up during those long illness years.

So, 36 years later having that bag on my stomach is all I can really remember. Obviously, I would prefer NOT to have this, but without it I would have been long dead and not seen my children go into adulthood and my grandchildren growing up.

I believe many of these ops these days are keyhole, so not all those very many stitches and a great reduction in recovery time.

Anybody having or due to having such operations, should contact (in advance) the National Associations, any of them have trained 'supporters' who will visit and talk of their own experiences and give welcome help and advice.

Yes, there can be problems, but for a good 95% of the time, absolutely normal life can be followed. Few of my friends and aquaintences know about my bag, I do not feel the need to talk about this anymore they feel the need to discuss their own toilet behaviors.

Good Luck

Thanks to everyone who replied. Sorry for the late reply. I haven't been well and spent 24 hours in the bathroom.

Yes, I did mean a Colostomy and a Stoma bag. Just waiting for a date for my operation. Been suffering badly and in and out of hospital for months and my Consultant has decided to remove a large part of my bowel. Also been told thar my pelvic floor has collapsed, so he isn't sure what else he will find when he operates.
He is hoping to do this robotically, but even so the time in hospital is around 10 days and recovery can be up to three months.

I have joined an online support group and the main warnings seems to be around mucous and hernias.
Level of care and support seems to vary, and be a bit of a postcode lottery.
What I have learned, is that being positive helps. Which is why I'm trying to learn all I can before my surgery.
I have already beaten a Brain Tumour so I won't let this get me. I'm determined this will improve my life, not make things worse!
{wink}

petra

I’ve had so many I’m practically on first name terms with the Dr doing the procedure.
Honestly, there is absolutely nothing to worried about.

Of course I read the word wrong 😂
My Nan had a colostomy for years ( thanks to her surgery refusing to come out and see her) but generally speaking everything was fine for years.

I’ve had so many I’m practically on first name terms with the Dr doing the procedure.
Honestly, there is absolutely nothing to worried about.

Apparently Frank Sinatra had one - so - in good company!

I am sure that surgical procedures and after care have moved on considerably since then. My friend had one and had no problems with it. Another friend had his recently and is doing very well indeed - out and about managing his smallholding.

I send you good wishes for this. There is always a recovery period then a need to adapt to new routines and sorting what diet suits you, but for so many it has been life-saving and given a whole new lease of life.