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I’m going to be a bag lady! Help me please.

(25 Posts)
mrsmopp Fri 24-Sep-21 10:25:04

Had a cancer check up the other day and had the shock of my life. I’ve had several operations for gynae cancer but now it’s gone one stage further and I’ve got to be fitted with a stoma.
Please if there is a gransnetter who can give me some advice and encouragement I would be very grateful.
I don’t know anyone at all who has one. I’m a bit scared! It’s a big operation! Please reply!

hollysteers Fri 24-Sep-21 10:39:19

I can’t help from a personal view mrsmopp, but I believe the Queen Mother had one after undisclosed cancer when she was in her 60s and she didn’t do too badly did she!
Wishing you all the very best.

Sparklefizz Fri 24-Sep-21 10:39:48

Hello mrsmopp - I can't offer any advice as I have no experience of your particular cancer, but I have had breast cancer twice and I didn't want to scroll past without giving you a virtual hug and my best wishes.

Obviously you're in shock at the moment, and it's only natural to feel scared about your op. You sound very brave and I hope you've got some friends and family who can support you through this. You've gone through a great deal already and now you will have more to come. My thoughts are with you. flowers

Sparklefizz Fri 24-Sep-21 10:43:01

PS. I forgot to say that it might help you to join a closed Facebook group for people with a stoma. These support groups are great .... a trouble shared is a trouble halved ... and you will learn lots of tips for coping. I belong to 3 FB support groups for my various health conditions and they have been invaluable. The medical groups are usually closed groups so whatever you share on there stays within the group.

MissAdventure Fri 24-Sep-21 10:50:38

I watch all kinds of things on youtube, and this young woman covers absolutely everything about having a stoma, as she wants it to be openly discussed.

It might be worth having a watch.

youtube.com/hannahwitton

MrsPickle Fri 24-Sep-21 11:03:44

My hub faces this if his treatment is not successful.
My aunt lived with it and i do know a few who have even chosen to not have it reversed. You will be assigned a stoma nurse, who will answer all your questions and support you.
Try to approach it with an air of positivity, grab the chance it brings and, has been said, join support groups.

There will always be the doom monger, but be guided by your professionals.

It's a frightening prospect, but you will not be in it alone x

sodapop Fri 24-Sep-21 12:33:20

I hope things work out well for you mrsmopp it is scary but stoma care has improved greatly now. Talk to your stoma nurse, she is the expert to help and guide you. There are support groups as well for people in your position.
Good luck, I'm thinking of you flowers

Wheniwasyourage Fri 24-Sep-21 13:27:41

Good luck, mrsmopp. I can't help from a personal point of view either, but my late DMIL had a stoma for over 25 years and coped with it brilliantly - we all forgot she had it. She had a solo trip to South Africa to visit a friend and had no problems while travelling. Eventually she died from something unrelated at the age of 90. Best wishes to you. 💐

Early Fri 24-Sep-21 13:46:01

mrsmopp. You may also like to take a look at the resources provided by Crohn's and Colitis UK about living with a stoma. They are a fantastic organisation with supportive helpline staff. They have a fifteen page leaflet you can download with lots of information.

www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/living-with-a-stoma

Shelflife Fri 24-Sep-21 13:56:40

I have no experience / advice about this . However I recognize your distress and send you good luck and good wishes . I hope you are able to communicate with someone who is managing with a stoma. Sending hugs 💐🌹

Nortsat Fri 24-Sep-21 14:07:01

My FiL had this operation and he coped very well.
He wasn’t the most practical of men, but he surprised us all by managing very well.

He coped well with the operation too and he was quite frail when he had it. This was a number of years ago.
The operating techniques and equipment seem to constantly improve and update ... so I am certain that will be the case here.

Wishing you all the very best. Do come back and keep us updated, when you feel like it.
Take care 💐

Franbern Fri 24-Sep-21 18:31:43

A stoma does take sometime to get used to, but is a life-saving procedure. Mine was done in 1990 and gave me back my life after struggling with UC for ten years.

Once you get used to yours, and get to know the type of foods that effect it or not, (and people are very different in this), you can just continue with your normal life. Except maybe for continuous heavy lifting, there is nothing that you cannot do with a stoma , that you did not do previously.

Do ask in hospital about local support groups, it is useful particularly in the early days to have other people to talk to. Your Stoma Nurse will be tremendous support and help and will be there for you - even if problems arise sometime later.

Problems.....yes of course there can be - do give yourself plenty of time to recover from the actual surgery - Take your time experimenting with different stoma flanges and bags etc. Some people prefer wearing their panties OVER their bag and stoma, others (myself included) prefer my panties to be under that. Do not wear anything too fitted and tight around your stomach area, at least until you are well used to having that stoma in place.

Do remember that you will probably need to increase your fluid intake each day. Beware medications which are sugar coated - these are often not any good for people with stomas as they just do straight through the body.

Most important of all is to be positive - remembering that the operation has saved your life and given you a normal life back.

Only my closest friends and family know I have this stoma - no need for most people to know - I do have a small make-up bag in my handbag, which contains a change of flange and bag, etc should I need it.

You will be entitled to a radar key for disabled loos, so that you can go into these where there is hot water, etc should you need to change things. Apart from that you are most definitely not disabled in any way.

Best wishes and Good Luck

ginny Fri 24-Sep-21 19:13:57

No personal experience but I have a friend who has had one for about 25 years and says they have improved greatly . I doubt anyone knows she has it unless the subject comes up
Also , the Granddaughter of another friend has has one for the last three years , since she was 15. She deals with is perfectly well.
I hope your mind will be put at rest and all goes well.

Luckygirl Fri 24-Sep-21 19:23:55

My dear friend had one for many years. She was, like you - and as is to be expected - pretty freaked out and anxious about it to start with. But it was amazing how quickly she adapted to it and did not give it a second thought - it just became part of her daily routine. And she was eating normally very quickly. Sadly she died earlier this year - of something totally unrelated.

Lots of luck with your surgery - I hope that you, like most, recover quickly and adapt to this change in your life.

butterfly1 Fri 24-Sep-21 19:28:04

I think Franbern has given a good account. I had bladder cancer and had bladder removed 6 years ago. I live and dress the same as before having the bag, and the only people who know are the ones i want to know. Its a big op and takes a while to recover but i was back driving after 6 weeks and i still have my life. You will be fine.

harrigran Fri 24-Sep-21 19:36:22

Another gran with a stoma here, feel free to PM if there are questions you would like answered.

mrsmopp Sat 25-Sep-21 13:51:49

Oh what a lovely lot of reassuring messages! Thank you so much. Still in a state of shock but coming to terms with it. Some concerns, but will see a nurse and get as much info as I can. Will I still be able to do long walks - up to ten miles? I like to be fit and keep my weight down. Will my diet be restricted as I’m vegetarian but have fish and vegan things.
Now it’s the weekend so have to wait till Monday for info from hospital. The gynae dept didn’t have any leaflets. We
You have all been so positive supportive and lovely. Huge appreciation and many thanks.

harrigran Sat 25-Sep-21 14:24:18

I don't see why you shouldn't be able to go on long walks but be wary of carrying anything heavy. I was ultra careful after my operation but still developed parastomal and incisional hernias.
You should be able to follow a normal diet after a few weeks but I find that a lot of vegetables are challenging for the gut, go easy on high fibre.

MissAdventure Sat 25-Sep-21 17:03:33

Can I just add, please make sure you actually have a stoma nurse assigned to you.
I met someone I know who has a new stoma, as she had problems with her previous one.
She said that this time she hasn't had the support she was given originally, and was struggling to get back "into the system" having been discharged without much input.

mrsmopp Sat 25-Sep-21 21:02:47

I don’t have a stoma nurse or anyone yet as I’ve only just been diagnosed that it has spread from gynae to the bowel. The gynae consultant who treated my cancer says it’s spread to the bowel which now needs to be removed and fit me with a stoma. Not much fun is it?

crazyH Sat 25-Sep-21 21:12:12

Wish you all the best mrsmopp flowers

hazel93 Sat 25-Sep-21 21:46:03

No, it certainly is not fun ! When I was told it was that or goodnight vienna it took a while to get my head around it to be honest.
I am still alive , enjoying life and looking forward.
PM anytime - I mean that and I totally understand .

Sweetpeasue Sat 25-Sep-21 22:04:09

My aunt has had a stoma for about 25 yrs. She's now 86 and is active and does lots of gardening. This latest news must have come as such a shock for you. So pleased there are lots of GNs on here that can give you advice and help. Wishing you the very best throughout your recovery. 💐

Franbern Sun 26-Sep-21 09:11:42

mrsmopp, maybe 'not much fun' but just take note that without this wonderful medical procedure you would die. So, just be very, very grateful that not only do you live in a time where this can be carried out, but also you do not have to worry about finding the large amount of money to pay for this operation.
You will not be allocated a Stoma Nurse, until you actually have stoma - you will probably met that person whilst you in hospital recovering from the operation. Amazingly this operation is now being done (in some cases) by keyhole surgery. Incredible - as removing largest organ in body. Where the op. can be carried out that way it brings down the time required for post-op recovering to just a few weeks instead of a few months.

Once you have recovered from the actual trauma of the operation, no reason for you not to be able to continue your usual activities, doctors will very much approve of your walking. Ileostomy Association (Ia), produced a quarterly magazine (well worth joining this Association), and people in that have written their stories of crossing deserts, deep-sea diving, climing mountains, etc. etc. after their ops.

For myself - the hardest thing I did was the first time after my my op., when I sat in front of a large audiance wearing the totally white uniform clothes of an ASA official!!!

I suppose that thirty plus years of having this bag on my tummy, it is just totally normal for me. Please do feel free to PM me anytime if you want to ask any specific questions.

Coming to terms with your illness is going to be the hardest part - the fact that it can be dealt with is just something to be thankful for.

mrsmopp Sun 26-Sep-21 15:05:53

Thank the Lord for these wonderful gransnetters who have taken the time to reply to my post and to pm me.
I was in such shock at the unexpected news from the gynae consultant that my head was reeling. How would I cope with this on top of the cancer? A Stoma??!
Without fail I have received so much support and encouragement from you all.
My heartfelt thanks to all who have been here for me.