Waiting for your referral dates and tests

I have finally received my referral letter to the surgical team regarding having a stoma finished. How long did people have to wait for their appointment date as I am now desperate having lost all bowel control, and in a situation where I can’t go out. I am going to contact the surgeons secretary tomorrow to make enquiries.

Also, once referred, what tests did you have to have done, and how soon was it before they did the surgery.

Any help would be really, really appreciated.

Thanks, Jo x

  • Hi CraftyJo

    Im sorry that things aren’t moving along quicker for you.

    Im not sure what your treatment plan is but to have my LAR operation I had the investigations needed to image my cancer the team decided the operation. I saw the consultant with nurse was told I had cancer and needed an Ileostomy and lower anterior resection I was advised by the colorectal nurse afterwards and appointment with the stoma nurses. Which I had through telephone. They sent some practice  bags then two weeks later I was in 

    The stoma nurse saw me before I went in for the op and marked my skin where the stoma would be formed. 

    I woke up with a stoma and haven’t looked back

    Best Wishes

    Artsie Ann 

  • Thank you for this. They were going to fit a stoma prior to my cancer treatment but decided against it. 2 and 1/2 years following the completion of my treatment the cancer is showing no signs of return but I have absolutely no bowel control whatsoever. I no longer go out and live in incontinence knickers, which permanently leak.

    My life is now worse than when I was first diagnosed and had my chemotherapy and radiotherapy PensivePensivePensivePensive

  • Once I saw the surgeon(also stoma nurse who gave me loads of leaflets and practice stoma bags)it was about 5 weeks till the op(panproctocolectomy.8 hrs in theatre).during that time I had all the preop tests etc.

    I did also have a week in hospital on antibiotics for a colon in spasm during that time.

    I wasnt marked up for stoma siting until the morning of the operation 

    This was pre covid (2019) so things may be different at the moment.

    Stomas are no bother.much better than the problems I had with colitis prior to the bowel cancer diagnosis

    Kath

  • Oh CraftyJo

    Thats horrible 

    If you’ve had the treatment and it’s just the stoma created with no tumours to remove I would think though I’m not a medic it would be the same as a reversal in reverse. If that makes any sense or am I confusing you. 
    Once booked the stoma nurses will mark your best spot for your stoma allowing you to sit ectc they will judge that your pouch will sit comfortably 

    Then the surgeon will create the stoma mines a loop ileostomy there are different types. I wouldn’t think it will be invasive or take very long because the stoma is formed by taking part of the waste pipe and putting it on the surface. That’s builder speak as that’s how I think of it.
    I’m not sure if you’ll have an ileostomy or colostomy but either will change your life. 
    Since I’ve had my Stoma I have really been able to enjoy life. She’s liberated me from the uncomfortable symptoms I experienced when I had the cancer 

    Can you phone your colorectal nurse and get all the info and say you want to book a holiday to see someone you haven’t seen for three years. It may push you in as they could fit you in around the larger cancer ops like they do with the reversals. 

    Best Wishes

    Artsie Ann 

  • Hello Crafty Jo.  That's nasty for you.  An incontinence nurse introduced me to these for a different problem.  They are intended for immobile patients but perhaps you could discuss them with your team to see what they think.

    www.hollister.co.uk/.../fecal-collector

    By the way they say on the web that they offer two durations - they don't, they just offer the standard duration.  They plan to correct the entry

  • I didn’t realise that….I will give them a call 

  • Thanks so much for the info, especially with a positive outcome x

  • Hi Ann

    Thanks for all your advice……. I totally understand all your “builder talk”. In fact the way you explain it makes much more sense!
    Jo x

  • Hi CraftyJo

    Thanks my hubbys a builder and at my consultation when asked any questions by the surgeon my husband said

    “How will you approach it , up the rectum?”

    I sat between a bricklayer and master plumber talking about how the job would be done 

    “ No, I will start with keyhole………… get my hand in and pull it out!”

    First I was aghast but watching the two men gestures and enthusiasm made me smile and I liked the thought of getting a plumber to fix my blockage 

    Not sure my surgeon would appreciate my analogy 

    Though later just before my op I was asked by a dr if I knew what I was having done. I spoke builder. She laughed and said the exactly right.  

    Best Wishes

    Artsie Ann 

  • Heh.in a lighter mood.you call yourself craftyjo.what crafts do you enjoy ?.hopefully crafting can keep your mind off other things at the moment.

    All the best

    Kath