Worried

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Hi guys 

Know it's been a while since I have updated you on everything, 

I had my operation on the 6th January, I have ended up with a permanent ileostomy stoma, got out on 12th January, they told me to eat and drink clear fluids, like jelly, ice cream anything soft, does that include Ready break? As I'm getting sick of jelly, yogurt, ice cream and clear soups.

They never really told me what I can eat and starting to feel hungry and also at a point that I'm scared to eat Incase my stoma not on properly.

Also when I put my stoma on today there is a little bit if skin showing at the top is that ok? I also find it better to do my stoma laying down because of my flabby belly bit at the top of my bag, Which is how I did it in hospital, but only really change my bag once myself. 

Can the hole be snug around the stoma I'm stressing myself out about it all and over thinking everything and my nurse not coming until Thursday, I need all the help I can get as so scared right now 

Much love bigbird xx

  • I think that your Stoma nurses need to help you with changing your bag. They should have advised you on different ways to change before you were discharged

    Though I found it challenging to do to begin with and it used to take ages. It wasn’t long before I had a system that worked for me. I found it was all about my prep and putting everything close at hand 
    I would stand in front of the sink with a small make up magnified mirror close to me  I could see and clean all around my stoma and make sure I put the bag on correctly by lining it up 

    Ileostomy’s can be fast and furious so I always tried to change when my stoma was finished. Like before breakfast or an hour after breakfast 

    Your stoma will take a while to form its shape and once it does you can have your bags cut to your size. I tried that but preferred to cut my own When the stoma nurse comes she will probably measure and cut you a new template  

    Hope you have a good day 

    It does get easier honestly. Don’t worry about it. 
    Any more worries pop them up 

    Ann
     ‍Art

  • We have moved my bedroom downstairs at the minute because physio said that they would of have to stairs assess me I was like nope I'll get my bedroom downstairs lol, 

    Thanks for the advice means alot honestly never had so many melt downs at the minute my daughter is helping me getting the stoma bag right  as we haven't got a long mirror downstairs 

    Paula x

  • I feel for you. I had a melt down two weeks after my op. I had a leak my skin around my stoma was so sore. The output didn’t get in the bag most of the time and I was having a  major head explosion. I phoned the nurses and the receptionist said two weeks. 
    I said oh no. “My stoma is bleeding I need to see someone now! “

    Yes I was a pure Drama Queen but the nurses gave me Convex bags with a belt, Eakin slims for my poor skin I came out of there a different person.

    Then I joined here an asked for advice about anything from underwear to flying abroad. This is a great place 

    The mirror thing I used to use a long mirror but found the magnifying makeup mirror on a stand better. My glasses used to steam up or slip off my nose. Hence magnifying mirror. Perfect 

    xx

    Ann
     ‍Art

  • Bless ya heart I'm glad I came on here late last night as now I know roughly what I can eat for now, I did my second stoma bag today by myself, my daughter said it looks snug I was like needs to be I watched a video on coloplast last night as couldn't sleep then, I watched it over and over again this morning got a little bit of blood around my stoma when I take bag off but but I think that's where my stiches are coming out as it's not pouring with blood. 

    My stoma nurse will ring me tomorrow I should as left a meltdown message yesterday haha 

    Paula

  • Did the physios not check you on stairs before you were discharged ?

    Kath

  • Are you using adhesive remover when taking the bag off ?.saves pulling the skin

    You can get a spray or if you prefer wipes.

    Kath

  • Yeah I am but I think I spray once and pull to much so my daughter says spray a few times or as much as I need so it doesn't pull so much, so I think that's why, and no as my consaltant wasn't happy that they had left me in bed all day on the Tuesday with everything still in and physio hadn't even come see me that day and the chair I had was to small for me to sit in so waited for a new chair which didn't come till Wednesday, he wanted me to be home Wednesday, so when physio said they would stairs assess me I was like not having it I want to go home, so she said it could take 2 days to get a commode.

    I was like I have a downstairs toilet outside and I can get my bedroom downstairs I'm going home, so she said that would be ok and someone will come out to assess me within 4 weeks, but I got a commode for through the night as it to cold outside and everyone would be upstairs that help me.

    I did have a commode on the Thursday as my mum's little old lady next had an old one, until mine came. They treated me very poorly my consaltant was very angry about it all 

    He has put a professional complaint in as he was not happy

    Paula x

  • Yes spray as much as needed as you gently peel back the base plate.no pulling and no soreness.job done

    Kath

  • Hi there 

    Im glad you’re feeling supported here. I know I did and it really helped me. A little blood is normal but let the stoma nurse check alls okay. 
    Is the skin sore around the stoma 

    I’m sorry that you had such bad treatment in hospital it’s really great that you have such an understanding consultant. 

    Take care xx

    Ann
     ‍Art

  • He was that angry it made me laugh as he went down the ward shouting sister, sister 

    I said to him the next day never seen anyone so angry, he said I wasn't angry.

    I was thinking if you, as your a higher risk and I wanted you to be home to recover in your own germs and to stop any infection x