Bowel Cancer

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has anyone here had Rectal cancer?I'm in my 6th year after operation for Stage 3 have had 2 lots chemo Radiotherapy I had a Stoma for a year then had reversal.Now I wish I'd kept my bag.I've incontinence which has become worse over the years.Also not nice to talk about but constant smelly and I mean smelly burning wind.I'm starting to be afraid to go out.I've had to cancel days out,holidays etc.I feel like an outoast. . My family is supportive.But I still feel isolated GP is a waste of time all they give me is Loperamide I've tried it all now and nothing working and just getting worse. All the diarrhoea has left me with piles a constant sore butt Sorry a long post

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  • Posted

    Hi, Sorry for your bowel cancer and reversal problems. My son had his large colon removed because of UC and had a stoma for a year. He had a j pouch reversal and has been 2 years with no problems. Have you been somewhere for a second opinion? have you had a nutritionist give advice? He has quite loose stools but not diarrhoea. Where are you?  Sheila.
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    • Posted

      I'm in Portsmouth I've tried all sorts leaving food out Dry food And cant eat fruit,veg or salad.only at my peril keep asking GP to refer me to the Incontinence clinic but she keeps saying we can sort this and I end up with more Loperamide Fybogel been all that route numerous times.

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    • Posted

      Hi, you havent given details of your surgeries, were parts removed and then joined up again or have you any sort of internal pouch? Surely your hospital has followed up on you regularly and would not leave you in such a poor medical condition. Would you happy with your care? 

      I would definitely recommend a second opinion. Your GP is obligued to allow you to choose a referral to another hosp or Consultant. Request a referral by NHS Choices to somewhere where they specialise in GI, such as St Mark's Hosp London or John Radcliffe Oxford Hosp. Both excellent for all gastro diseases, loads of recommendations online too. My son was treated at JRO, so brilliant and caring, would recommend to anybody. Either of these hospitals should be able to help.

      Good luck, sheila.

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    • Posted

      Dear Guinivere:  sorry to hear of your problems re your rectal cancer.  Are you still receiving chemo or has it finished now?  I know what you mean about the isolation your incontinence causes - my problem is different to yours; I suffer from double incontinence after an operation to remove a cyst from the sacrum 11 years ago.  I have to plan my journies carefully.  I can't understand why your GP can't refer you to an incontinence clinic.  After my op. this was the first thing the hospital did.  I see the nurse at the clinic every year now, but at first it was every few months.  Why not return to your GP to get a referral?  There is no need to suffer so long.  I find my continence nurse very helpful.  Good luck!

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    • Posted

      Dear Janet Thank you for replying.No I'm not on chemo now I'm 6 years in now from op.I am going back to my GP as I really need a referral I have been invited at my local hospital Friday to a new thing started here ,you get together with health professionals etc also people who are cured ,or going through it now to see if there are ways of helping you cope.I was astounded by the lack of information given.I done my own research I wasn't told I could become incontinent It was Bag reversal, few months then you will be fine.I shall certainly bring all this up.I know it's a small price to pay for my life,but it's a struggle when you can't or are frightened to go out in case you have accident which I have done frequently

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