Bowel cancer

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Hello I'm new. Got diagnosed with bowel cancer in January had my surgery in February I have now got a permanent stoma irreversible has I had to have my bum stitch up.  I had to have 4 cycles of chemotherapy which finished in July. I'm just really struggling now coming to terms with everything. Everything happened so fast and now I'm left feeling very scared and anxious I don't like going out on my own are to far I'm always worried about if there's a toilet especially a disabled toilet 

  • FormerMember
    FormerMember

    Hi Nanny2 - I know exactly how you feel, as I had a non reversible ILEOSTOMY 4 months ago and also have that vile STOMA thing. I have not had chemo yet, as my large bowel was removed. I had a CT scan last week and there is something going on in the liver area, so I now have to have a PET scan!

    I'm so concerned as to why so many people are getting cancer.

    Anyway, do keep in touch with your STOMA nurses, mine are amazing, they have helped me more than anyone else.

    How are you coping with the bags etc.?

    fatz x

  • Hi  

    You may also like to check out and join this group

    Stoma Support Group

    I have a permanent colostomy, although I had different surgery to you, but there are lots of us who can offer help and advice on all sorts of aspects of living with any kind of stoma-from bags and products, to travelling abroad.

    If you’d like to join the group you’d be able to make a new post there in the same way you’ve done in this group.

    Sarah xx


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    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you I will do xx

  • I should have noticed that you’re a new member  so my apologies, and welcome to the group!

    You've been through a lot this year already, but there is lots of support here in the group who have been through surgery and chemo, so please feel free to ask any questions here and in the stoma group.

    It can take a while to process everything after a cancer diagnosis, especially when things have happened quickly so I think many of us will relate to your feelings of anxiety now.

    There is another group I would recommend joining-

    Life After Cancer Forum

    A paper which is often mentioned in the community discusses a lot about how we can feel when we have finished treatment, and I’d like to recommend this for you too: the link is here-

    After Treatment Finishes, Then What?

    How are you feeling in yourself now? I hope your recovery is going well, but don’t hesitate to reach out for support whenever you need it.

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi I'm sorry about what you are going through hope your scan goes OK. Yeh I'm intouch with My stoma nurses seen her today as my skin as been really itchy. I've been OK with the bags she thinks it's the sticky stuff staying on my skin so she's said to try and get in shower without my bag to try and clean all the resdule of it that staying on my skin. I have my 1st ct scan next year a year after surgery and have my bloods done every 3 months so u always worrying. But I know what u mean about everyone seems to have got cancer. Thank you for the message xx

  • It's OK thank you xx

  • FormerMember
    FormerMember in reply to Nanny 2

    Hello Nanny2

    Ask your STOMA nurses for CAVILON - it's to stop irritation from adhesive on bags.

    It works for me, as I had really nasty red rash - now so comfortable!

    They will add it to your prescription.

    Take care

    fatz x

  • Hello Nanny2

    You are not alone! I was diagnosed in Feb, had an emergency Stoma straight away. My bowel cancer is currently inoperable, I’m having immunotherapy (I’m 4 cycles in) with the hope it will become operable.

    Like you it has all been a whirlwind, and I understand it’s hard to process how you feel when everything has happened so quickly. It takes time to learn to love your stoma - I’m still not there yet. My stoma nurses have been brilliant though and have been so kind and helpful. No problem is too small.

    I had a rash and they gave me lots of different brands to try and I now have bags that agree with my skin. I’ve also discovered some handy deodorising drops I can add to the bag which has made emptying far less embarrassing. I’ve even started to empty my bag when I’m out sometimes which is a big step….. you will get there too!

    just take each day one at a time and think how far you’ve come already. You’re doing a great job, and we’re all on this difficult journey together x

  • Thank you I will do they have orderd me some adhesive wipes x

  • I'm sorry to hear that I had my surgery in Feb but everything went wrong I got rushed back in to theatre 3 days later as I had a hole in my small bowel so they had to cut me open. Then that got infected so they had to open some of it back up to let the infection out so I had a large open wound which I ended up with neunmonia aswell while in hospital.they was hoping I wasn't going to have to have chemotherapy but when they did the surgery and the biopsy results come back it had reached 2 of my lymph nodes so I had to have chemotherapy.but that got put on hold with me having this open wound they had to wait for it to heal. It was alot to deal with everything happening so fast and had that much going on I was in hospital 3 weeks then had nurses coming out twice a day then starting chemotherapy I finished in July and now it's all stopped its all hit me and finding it hard x