Stoma

During my consultation on Thursday. I was told the if my Tumour shrinks they will operate to remove it. However,  due to its location, he said I might end up with a permanent stoma. I'm petrified of this. I keep reading that these are visible through clothes and they do smell quite bad. 

Has anyone on here had a stoma fitted and if so, what is your experience... are people able the smell them, and see them through clothes?

I understand that this procedure could be required to save my life. I will be truly grateful for that. I would just like some information if possible from real life experiences to help me come to terms with the prospect of a life changing operation and how to cope with it.

Many thanks for your experiences of a stoma.

Bolero 

  • No they really arnt visible and they dont smell.Ive had a permanent iliostomy for 2 yrs and unless I tell people they dont know I have one.they dont take long to get used to and are easy to manage.dont let doom mongers worry you.they really dont know what they are talking about.

    All the best.

    Have a look at my profile ìf you want and ask anything

    Kath

  • My husband has a temporary loop ileostomy stoma. I cannot smell the output. Only when he empties the bag into the loo which he does about 3 times a day. Most bags have a carbon filter to help with smells too. Honestly you wouldn’t know he had it - and he’s only had it less than 4 weeks. The placement of the stoma is quite high and he is finding it challenging to dress with a shirt tucked in, so far he doesn’t and opts for having shorts or jeans under the stoma and long shirts & tops. These help hide the bag really well. You can get belts to hold them in place but my husband didn’t get on with that. 

    I think the first few times you have to empty or change the bag it is overwhelming but you’ll be shown what to do by a nurse. Once you’ve done it a few times it all becomes so much easier. Speaking to people that have been through it will help, it helped us! The stoma doesn’t have to stop you living a full life, going swimming and doing sports, travelling, etc. It does take some getting used to but already we are in a routine with it. The stoma saved my husbands life and we have to try and view it in that way, that it’s a good thing. I hope this helps? Feel free to ask any questions. 

  • Before the op they mark you up as to the best spot to place the stoma.they take into account your shape,the clothing you usually wear,the level of your waistband etc.then try to place it asnear as possible.that is for a planned op,obviously an emergency op would be different.

    I was also given bags to practice with before the op to get used to wearing them.I found that really useful especially if I put some water in to get used to the feel.

    Kath

  • Pps.a tight plain coloured leotard might show the bag!!!!

    Then again if you had to wear one you could always pop a t shirt over and there are alternatives for in the gym

  • Hi Bolero.

    I have had a permanent colostomy since July 2019. Like you, I was really upset when my surgeon told me I was to have it. My colorectal nurse said that it was saving my life so I just decided to get on with it. As Kath said, the stoma nurse visits you at home to site your stoma depending on the clothes you wear. They also gave me quite a few booklets with loads of information, which was really useful. Nobody will know you have it unless you tell them. At first I didn't want people to know but now I don't care who knows. Everyone on here is really helpful and positive. You can ask anything. No question is too daft! Feel free to ask if you need any information.

    Kim x

    Blackstuff
  • Hi Bolero, 

    I hope you've felt some reassurance from the responses you've had so far. I would echo what has been said.

    I had a stoma 40 years ago when I was 19 and it was reversed a year later, thankfully. Then in March last year cancer cells were found and I was told that a permanent Ileostomy was inevitable. The surgery was going to be extensive but I focussed on the stoma news because that was what I understood at the time. That was the thing above all else that upset me. The thought of having a stoma again with no possibility of reversal was horrendous.

    I had the surgery 7 months ago and have recovered well overall. I had some initial problems with the stoma output and getting the right 'fixtures and fittings' but I had great support from the ward staff and stoma nurses. The latter are available on the phone as well as running clinics after discharge. 

    I lost a lot of weight following surgery so had to buy new clothes, especially trousers! I just bought ones that were comfortable and a bit looser fitting. There are plenty of fashionable clothes that work just fine and no one would know a thing! 

    As for the smell - I don't find this a problem at all. The bags are air tight and when you empty them it's no different from anyone else having a poo!! I've heard of people adding a little drop of lavender oil or some such to the bag just in case, but I've never found that necessary.

    I would say I'm still coming to terms with this being a lifelong situation, but I'm certainly getting more used to my stoma and one of these days I'll be able to thank it for saving my life (along with the surgical team, of course!).

    Keep in touch here - I've found it hugely helpful and supportive. There's a separate group for stoma users when you're ready for that.

    Just bear in mind -  a stoma will save your life, but it doesn't have to change it!

    I wish you well.

    Osboz x

  • Hi Bolero, 

    I am new in here but I have had a stoma now for 5 yrs when I first had it done I was told if all went well after the tumour was removed and the cancer had gone a reversal could be arranged , but this was not to be by the time it came around to have the reversal done unfortunately my Cancer had spread to my lungs so it was put off to a later date,  but had the op done they removed the nodes without taking too much of my lung and didn't have to have mop up treatment.  So once again I was hopeful of a reversal 

    But during a routine CT scan it had come back but this time it was in a few places so they booked me in for a Pet  scan ,the news from that was hard to take because my Cancer was now stage four so definitely no reversal and they couldn't not cure my cancer but managed it , so I was offered target treatment and pain management. 

    Getting back to the stoma I have got used to it now knowing things I can and can't eat so that's a good thing I suppose . 

    Please keep in touch and if you have any questions ask me and if I can help I will do or advise 

    Jimbobs

  • FormerMember
    FormerMember in reply to Osboz

    Hi Bolero,

    My husband had his operation  for a stage 3 tumour in his rectum last Tuesday he has had to have a permanent stoma fitted and wasn't looking forward to this at all! Hopefully he will get used to this as time goes on and it was good to read that you eventually got used to it and had no problem with smells or leakage. He is due to come home on Tuesday so fingers crossed he will be ok.

  • Dear Bolero - I loved my Stoma "Denis". Loved him like a new born baby! Cared for him, pampered him, laughed with him! He became part of the family and friends still make references to "my boy"! I Heartad him for a year but struggled with the idea of corrective surgery because living with a Stoma was really not a problem. It takes some getting used to to find your "Stoma funk" but I am here alongHeartwith hundreds of others to help your journey. I just joined this site for that very purpose because it makes me really sad when I heae people are living in dread or can't cope. Ask my ANYTHING, pleHeartse! Nobody can small or see your Stoma. There are great deodorising products to make you feel happier but nobody would know you have a Stoma. Except I likes to show mine off from timeto time becauaHeart I was proud of him ;). I used to empty my bag after every output and had very small bags to wear for sport and swimming etc. Once Chemo finished I had a fixed routine with no output before mid aftHeartenoon so life was very manageable. You've got this! We've got this!

    • Thank you for sharing your experience. 

    Can you feel the output happening, or do you feel nothing, so need to keep checking the bag so see if it needs emptying?

    Many thanks again

    Bolero