New here, having permanent stoma op soon

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Hi, I'm due to have my op soon, which will result in a permanent stoma and a barbie bum. I know I will be able to live a perfectly normal life once I've recovered and got the hang of the stoma, but there is so much information to take in, and I'm trying to get my head around it all. I'm seeing the stoma nurse before the op and will be given more information then but I would like to ask those of you who have been through it already - tips of do's and don't? I've ordered a waterproof mattress protector and pads and I'm currently browsing stoma underwear. So much to take in!! Any advice?

  • Hi

    I got my permanent stoma 4 months ago and I’m pleased to tell you that it’s a learning process but I’m back to Pilates and playing golf and have been abroad on a cruise already .
    I think from your name that you are female so go onto M&S website on you’ll find excellent stoma knockers - with a choice of styles for about£15 for 3 pairs. I didn’t have them immediately post op and would have found them really good as the bag( and they give you very plastic ones to start off!) rub on any wounds you have and the internal pouch would help that.

    Good luck - stay positive and I’m sure you’ll be fine. X

  • Thanks for that, yes I'm female and I've had a look at M&S. Will perhaps order some in once I've had a chat with the stoma nurse.

    1. Hi my name is Dave i had a permanent stoma on 14th March 2023 my wife also had a stoma fitted on same day by same surgeon for non cancerous reasons. I also had my Anus/rectum removed and sewn over with pigskin. .im a little bemused that you have brought waterproof mattress and pads etc before you have even seen the Stoma nurse. We have never had any need for those we used a large towel under us for the first few weeks as a precaution but very soon realised they were not necessary . We did both have minor leaks a cople of times but nothing very drastic. Any leaks tend to be one small area of bag coming unstuck due to "balloning" which is basically breaking wind into the bag which has nowhere to go i personally use a sewing pin to make pinhole at very top of bag when this occurs and squeeze air out or if lying in bed and feeling ballooning or realising that bag needs emptying dont be tempted to lie in a bit longer or even stay there because its early just get up and change the bag. Incidentally changing your bag is just removing old bag cleaning up with some tissue and putting up with smell as you do it. So really not much difference to what you do now. You're life will carry on more or less as usual. Most people who arent told will never know you have it. It really is quite a positive thing once you get used to it which really doesn't take long. You will need to carry some bags and sprays when you go out socially  i keep a  small bag of bits in car boot . Good luck . Dave 
  • Hi, my husband had the surgery two weeks ago.  I was like you I bought a couple of new mattress protectors and a seating pad.  We haven’t used them yet… but they won’t go wrong.   I think it’s was my way of coping trying to be prepared for the new norm.  We are still learning but if you have any questions feel free to message.  Only advice I would give is don’t go by what you read .. listen to your body.  My husband had surgery on the Monday and came home on the Friday.. hes sore but is managing to go walks daily.  He’s adding new foods to his diet daily.Big hugs you got this!! X

  • Yes I'm trying to be as prepared as possible, reading other people's posts and trying to pick up practical tips. I'm officially booked for 5/12, but there is a good chance I'll be taken 25/11 which is only 2 weeks away. Thanks

  • Hi first of all ,all the best for operation.

    I had mine 5 yrs ago and have never bought special undies.I find sloggi great as they hold my bag nice and flat and secure.personally I would wait before spending loads on special garments.but Im sure your stoma nurse will have lots of good advice.

    I too have a barbie bum and because it took a while to heal needed bed protection and was advised to buy disposable puppy pads from the petshop.cheaper and just as effective

    One thing that my stoma nurse offered before my op was a trial false stoma and bags so that I could get used to the idea.I found it very usefull and gave me confidence that no one would notice the bag and I would be able to wear my normal clothing.not many on here seem to have been offered this but I found it very useful.it also enables you to work out a good site for your stoma depending on your waistband etc

    Kath

  • Hi  and welcome to our group.

    I have had stomas for 4.5 years-a permanent colostomy and a urostomy and found a mattress protector absolutely necessary for me, particularly because of the urostomy. 

    I have never used special underwear-just my normal ones, but that’s a personal choice. However you can get these on prescription-a limited number of pairs which you don’t need to pay for. I just never felt I needed them, and even wearing 2 bags, they are perfectly fine in normal knickers. Stoma underwear to buy, and swimwear tends to be very expensive so with swimming I don’t buy special swimwear-I found it easier just to wear tankinis where the bottoms give good support. There’s no need to spend lots of money on special things until you get a feel for living with any stoma. 

    I use puppy pads, rather than more expensive incontinence pads when I’m away staying elsewhere. For example I’m away for the weekend and been staying in a hotel and with friends. I didn’t have any accidents, but it gives me a feeling of extra security to when lying on pristine white sheets to be on a puppy pad! 

    What I will say is that you will learn a lot as you go along and find things which suit you. We all learn hints and tips along the way and do things our own way which work for us. I didn’t have any help in hospital from stoma nurses, which I understand from others is very unusual and not the norm, but got lots of help from my stoma nurse in the community on discharge. 

    I found it easy to get used to 2 stomas-you soon become adept at managing changing the bag and cleaning up, and it just becomes a new way of life! Good luck with your surgery and take things very easy as yo7 recover-don’t expect too much too soon.

    Sarah xx


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    • I did exactly the same… one tip I found useful was a little baby oil in the bag to help it not sticking. Lemon oil or peppermint oil makes the smell better when changing.  We have an appointment on Friday with the stoma nurse.  It will be over before you know it and you will be at home recovering. When u do get home my hubby was on a simple diet so u could get foods for the cupboard to help.  Corn flakes, rice crispies,  Chicken / tomato soup, Potato's, white bread, Chicken, fish … lean mince, smooth yogurts. Take care x 
  • Plant fairy  if you do put oil in the bag make sure it doesnt get on the adhesive ring or it wont stick and will leak

    Personally Ive never had any problems with odour so see how you go before adding anything

    Kath