Late radiotherapy symptoms.

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Finished treatment in March and have had ongoing bowel incontinence. I saw my oncologist last week who advised I am now in remission Raised hands however my symptoms suggest the radiotherapy may have caused my symptoms and have I considered a stoma ? Has anyone else had experience of this , is it possible to rectify without surgery , if not how to I learn to live with a stoma ? 

  • Hi  

    Im sorry you are having problems, obviously im not a doctor but I would have thought it a bit soon, my oncologist told me it takes a good year to recover from treatment. Im coming up 11 months post treatment and ive had a couple of accidents in the last 2 weeks and some near misses. A lovely lady on here called  had an elective stoma and im sure as soon as she sees your post she will be able to give you some advice regarding stomas. Sending hugs. Xx

  • Thank you so much. I think because I have cauda equine as well they think a stoma is more likely. 

  • Hi Sue m

    I had my stoma operation prior to starting my chemoradiation in July.

    Bungle1 mentioned Irene, who shared experiences and gave me great information prior to my operation.

    If I can support you in any way please let me know.

    Macmillan also has a stoma support group, who were very supportive when I had queries.

    Such great news about the remission.

    Ally xx

  • Thank you so much. Hugging

  • Hello Sue m

    I am delighted to hear that you had such positive news from your oncologist last week, you must be so relieved!  But I am also sorry that you are having these ongoing problems. 

    At the end of treatment I had extreme urgency which continued for about some months, not incontinence as such but I couldn't be far from a loo.  That did improve, however, I also have severe anal stenosis caused by the radiotherapy.  This meant I had to take stool softeners daily to enable me to pass stools which of course led to the urgency again and I couldn't leave the house until I was 'empty'.  I had a stoma formation last year, and until recently, it was life-changing for the better for me.  I should say I have been experiencing some problems (which aren't the norm) and I have a lovely approachable colorectal consultant that I am due to see in October.

    I found the surgery itself virtually pain-free.  Of course I was kept dosed up with painkillers and the like and in spite of needing antibiotics for a wound infection I was back walking my dog for a couple of miles daily within weeks.  There are some life adjustments living with a stoma - carrying spare supplies, the occasional accident or leakage, sometimes a stoma 'burp' (my grandsons think I am hilarious and so cool!) but I imagine it would be much better than continual incontinence.  However, as I had never heard of cauda equine I did a quick search and at first glance cauda equine syndrome can cause bowel and bladder problems.  Have they definitely established the cause of your incontinence?  I guess what I would be asking (to be clear, I am not a medic!) if the radiotherapy caused the incontinence.  Because as Bungle1 says, recovery can take some time.  However if it is the other issue, maybe not.

    I am happy to help if you have any more stoma questions.

    Big hug

    Irene xx

  • Thank you so much for your response. Yes, Cauda did cause both bladder and bowel problems , have to self catheterise every day , however the bowel problem has got far worse since the radiotherapy. As Cauda leaves you with reduced feelings in the bladder and bowel area I had the occasional accident , now it is a daily occurrence. I have tried the usual stool softeners however end up with very lose motions , making my situation far worse. 
    I want to return to work however the current symptoms make it impossible, I work in the community as a social worker, not always able to access loos in a hurry. 
    I am glad you were able to manage the pain post op, that was a real worry for me if I have to go down that route.

    i am awaiting a call from the late symptoms radiotherapy team , so hope to have some advice soon.

    Again, thank you so much for response x

  • Hi Irene 

    Im sorry you've been having some problems, I hope they get sorted soon. Xx

  • Honestly Sue, the only real pain was in my shoulder, nowhere near the stoma - apparently they fill the colon with gas to aid during the surgery, this gas can cause some pressure that irritates the diaphragm, which then irritates the phrenic nerve, causing referred pain.  I was given morphine for that which helped greatly and it only lasted a couple of days.

    And I wish you all the luck in getting things sorted out, going to the loo normally is something we all take for granted until things start to go wrong.

    Irene xx

  • Thank you Bungle1 - not life-threatening in any way, just inconvenient! xx