hi I'm Kath

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I was diagnosed with Rectal cancer 11 years ago. I had Chemo and radiotherapy- then three major ops. A colonostomy, an illiostomy  then back to a colostomy.I was also diagnosed with chronic kidney disease.

I want to reach out to other ostimates as it can be a lonely scary place when you have to live with a stoma.

I've lots of experience both good and not so good. I want to share/help anybody with a stoma experiencing problems or who just want to chat.

  • Fantastic . Stoma advise is much better coming from someone with direct experience so I will bookmark this and tag you in as required !

    Glad you are doing well ! 
    Court 

    Helpline Number 0808 808 0000

  • I'm still struggling to find on my mobile (don't have a laptop) where and how to blog. IT and me don't mix. Apologise if I'm posting in the wrong areas.

    Kath
    "don't think about tomorrow"

  • Hello KathH2, 

    yes, it’s a different life with a stoma. I resisted for a few years, taking extra chemo. But back thr cancer came then got my stoma. . Finished my last round of chemo last week as they suggested there might be cancer cells roaming around,  and my first scan tomorrow. Now being unhealthy eating chocolate digestives. 
    chemo and stomas don’t mix. Just hope this scan is clear so I can take that each day at a time. 

  • hi Helen BK,  - fingers crossed for that scan to be clear. B**tard cancer. It's nasty, sly and insidious. Hopefully these last rounds of treatment will mop up any stray bad calls.

    Having a stoma is no walk in the park but you will get used to it. It will get easier. I hope you find some treats that don't upset your system. In the early days Wotsits was the answer.

    Taking one day at a time may sound trite but hang on in there.

    Kath
    "don't think about tomorrow"

  • Thank you so much Kath. Yes the waiting for results is a tough one. Thr stoma is a strange one indeed. Someday days it seems I have a balloon attached to me. Trying to teach myself to eat slowly and in a calm manner.  Bought peppermint capsules in boots. They are great. I think I’m becoming a recluse. Covid kicked it off but I feel safer at home 

  • with so much going on it might be just what you need at the moment - home - a safe haven. Sanctuary.

    The bag filling with wind can be a nuisance. Speak to your Stoma Nurse they'll offer good advice.

    Kath
    "don't think about tomorrow"

  • Thank you Kath. I forgot about the nurse. I’m an airhead, made a Christmas cake, can’t beat good housekeeping magazine for their recipes.  Yes I like being home. Your right it’s my safe place now. I look at positive images of people with stomas. They are to admire. I’m hiding. Delighted autumn is here, big coats. I’m hiding.

  • hi Helen BK, you are NOT an aurhead - with all that's going on for you and you still managed to make a Christmas cake!  Impressed. You won't always want to hide. Psychologically, mentally and emotionally you're bound to feel fragile. Give yourself permission, it's allowed.

    Kath
    "don't think about tomorrow"

  • Thank you so much Kath. Today I thought  I’d get my results, weird all day. Then decided to ring the oncologist office.  They are on holiday for a few days.  All stress for nothing. You are right, don’t think about tomorrow  xxx

  • FormerMember
    FormerMember in reply to HelenBK

    Hi Helen 

    I've had my stoma for 8 weeks and it was really tough at the start.  Like you I didn't want to go out and felt so conscious of it, but I've started going out and about a bit now, I've even been out for a few meals with my family.  I have an Ileostomy so have to follow a low residue diet which is really annoying as I love veg and spicy food, but as a straight talking nurse said to me ' it's better than the alternative love!' 

    Have you tried some of the support garments and belts under your clothes? There's some great stuff out there that really help and many are available on prescription.  Your stoma nurse should be able to help.

    Ive just ordered some pants off the Comfizz website apparently they're very good!

    Take things at your own pace but dont hide away! Take baby steps - maybe a short walk or a drive out in the car with family or friends. 

    I know what you mean about the inspirational stories in 'Ostomate' magazines and leaflets they are so helpful but I often joke that some of the images of the 'cute' little stomas are photo shopped Laughing ; mine, especially in the beginning, looked like i'd been shot! It looks better now it's settled down and after trying several different products I am now leak and pain free!

    I really hope you can muster up the confidence to start going out and about and eventually feel proud of yourself and think of your scars as trophies!

    Take care

    Melly x