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 

  • I dont know about others as everyone is different,but sometimes I feel a slight tickling sensation.however that doesnt mean the bag needs emptying.I check when I visit the loo,otherwise you just know from the feel of the bag.you will soon get used to your body and all its quirks.

    Kath

  • Well apparently there are no nerve endings on the Stoma and you can't control the output. But often I felt the output arriving (depending on its consistency). And you can sense it. If the output isPooplight and liquidy you don't even notice it but the occasional protective pat on your bag will tell you if there is something worth emptying. I had a two part bag - support basw you change once ever3 days + bag you can empty or change. I emptied at every output, changed every morning, before going out and in the evening when we had a good freshen ip before changing him into his pyjamas! Like the moment you change yoir baby's nappy - a little ceremony, peaceful (mostly!) and gentle. And you get soooo unphased by poop etc! Poop Let's see where your journey takes you - I'll be here - and you can literally ask me ANYTHING! I also found Instagramme a great source of support and info - so many young girls with Crohn'a sharing videos of how they change their bags and keep their Stoma healthy and happy. My hubbie used to joke that I took better care of my Stoma than I did of him!!

  • Hi and a warm welcome to the site from me. What a lovely positive post and I’m sure lots of people who may have worries about a stoma will appreciate your reassurance? Have you also had a look at the colostomy, Ileostomy and stoma board?

    https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum

  • I have had a stoma - colostomy for 10 years due to rectal cancer. Surgery saved my life. Modern bags/pouches are well designed and do not smell. They can also be concealed well so unless you told someone they wouldn't know you had a stoma. I live my life very similar to how i was prior, You adapt and get used to it. I play sports and cycle, swim, holiday, and eat normal stuff without a problem. 

  • Will do! I am just coming out the othee end (no pun intended!) and would so love to help others in the middle of their Challenge.

  • Hi Bolero,

    Im a reversible loop ileostomy and like you I thought that I would smell and everyone would see it.  
    That was August 
    I hadn’t imagined that I’d drop two stone of weight after the op because the cancer caused bloating and fluid retention.
    An ileostomy is more to manage as it needs emptying two to three hourly and foods need to be slowly introduced.  But I could not eat properly before the LAR  I’m eating basically most things I like fish and chips included

    All in all I am so much better off with my stoma. It only smells when I empty it, and I’ve even found fast ways of sorting that a squeeze of baby oil in the opening each time when out put is thicker it flies out rapid speed. I wear full briefs I actually treated myself to some really classy M&S pants and bras matching. It just made me feel better. The pouch really does not stand out that much. I’ wear skinny jeans and a top and it doesn’t notice. In fact everyone that sees me says how well I look  

    I have gained so many tips for managing my stoma here it’s a great place for support and advice .

    Best wishes with your treatment 

    Artsie Ann

    Best Wishes

    Artsie Ann 

  • Hello Bolero, 

    I had typed all the below out and was just about to post it when I thought to ask you a question I never asked myself pre-stoma.  Have you ever detected a stoma bag by sight or smell iif you haven't been told it was there?  I never have - and in fact I couldn't detect one that I knew to be there - I'd have had to stare rudely (and I suspect without result) and there was no odour at all.   

    I had a stoma made last March during a quickly arranged operation for a blocked bowel.  CT and MRI indicated that the stoma would be permanent.  I am male and over seventy - perhaps not too fashion-aware!  If you are a lady Saltheart and Artsie have already helped you, I'm sure.

    You will feel the ocasional contribution - particularly if there is bit of wind, but if you are lucky like me you'll forget you have it 95% of the time.  Oddly the only thing that can be a give-away is the occasional gurgle from the 'wrong' place, but it's no more than an abrupt tummy-rumble.  I mentioned fashion because in my case the stoma is below the waistband and old mens' trousers don't fit too closely - nothing can be seen even when the bag is full.  The bags have a filter system to deal with wind and you, yourself, may detect an atmosphere from time to time.  But then that's just like a fart, so we're still like everybody else.  I say atmosphere because the output is not the finished item - neither formed into stools nor typically malodiferous, though still not great smelling and somewhat lingering.

    Depending on the appropriate style of bag advised by your team your stoma nurse - they are very good. - will show and rehearse you on changing and,or emptying your bag.

    The bags I use are disposable.  They are flesh-coloured and lie flat when empty, held by an adhesive ring which sticks straight to the skin.   To remove them I dangle the bag into a little sack the NHS provide, then spray a releasing agent that they also provide, working down as the adhesive ring peels back and eventually allows the full bag to drop into the sack, which can then be knotted and set aside.  I then clean around the stoma with warm water (no soap!) and set the fresh bag round the stoma. I have a larger waste-paper-bin liner ready and put the sack and clean-up wipes into that - two or three changes then that is knotted and hung outside until rubbish-bin day when the fortnight's accumulation is put into a black sack and into the wheelie-bin.  That's just me - you'll quickly work out an appropriate regime, advised by your stoma nurse.. 

    Like you I had always dreaded the thought of having to live with a bag - then when it happened without time to dwell on it I found that it was much better than I expected, and frankly (to be Job's comforter) the least of the things I had to deal with.  Believe it or not there are also upsides - the best being that you can see what you're doing!

    I hope that you don't need a stoma after all, but I also hope that the things that the others have said will help you should it be necessary.    

  • Sorry for the delay in responding. I haven't been in a good place of late following further developments where I may have to both bags. I'm truly horrified with this news. 

    Thank you so much for responding to my post.. it truly appreciate it.

  • Sorry for the delay in responding. I truly appreciate your reply.

    I had since been told I could have my prostate removed also. I'm truly not in a good place at the moment. 

    I'm not altogether sure how life will feel after all this tbh.

    Thank you again for responding. 

    Bolero

  • Sorry for the delay in responding. I truly appreciate your reply.

    I had since been told I could have my prostate removed also. I'm truly not in a good place at the moment. 

    I'm not altogether sure how life will feel after all this tbh.

    Thank you again for responding. 

    Bolero