CHRONIC DIARRHOEA FOLLOWING COLORECTAL TUMOUR REMOVAL AND PELVIC RADIOTHERAPY FOR STAGE 3 PROSTATE CANCER

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One of the Macmillan Online Community staff suggested I put these questions to the Ask a Nurse service.

The 'subject' box above gets to the key issue, so I won't go into a long history. I have LARS - Low Anterior Resection Syndrome - following surgery (stoma then reversal) in 2022, aggravated by pelvic radiotherapy (prostate cancer) later that year. This has meant chronic diarrhoea, some incontinence and frequent sleep disturbance, ever since. I am slowly cycling through treatment approaches with the aid of my hospital specialists, but am not really getting anywhere.

The only directly-relevant drugs spoken of are laperomide, which does very little for me, certainly at the low dosage that is all my GP feels happy with, and codeine phosphate, which many experts dislike but which can give me fairly reliable relief for 24 hrs at a time; however the body seems to habituate to both of these quite quickly. There does appear to be an alternative, diphenoxylate, known as Lomotil in the US and Co-phenotrope in the UK, where it appears to be regarded with concern and is not often used.  

Is that it as far as pharmaceuticals are concerned? Irrigation, physiotherapy, diet management, probiotics, nerve stimulation, all could be helpful adjuncts, but I have the feeling that drugs are the 'bread-and-butter' response for me. Unless I go back to a stoma, which I really did not like.

Many thanks,

Viszla

  • Dear Viszla,

    Thank you for joining the Macmillan online community. I can see you have joined several of our community groups and I hope you are finding then helpful. My name is Joanne, and I’m one of the Cancer Information Nurse Specialists

    We’re sorry to hear that you are still experiencing chronic diarrhoea following pelvic radiotherapy for prostate cancer. This has been further complicated by LARS. It does sound from your post as though your specialist team are trying to help with your symptoms, but it must be very frustrating that a solution hasn’t yet been found.

    Here at the Macmillan Support Line, we can give general advice and support. We are independent from the NHS and don’t have access to medical records so can’t give personalised information.

    You ask about pharmaceutical support for your diarrhoea as loperamide isn’t working for you. It appears that Co-phenotrope (Lomotil) is no longer licenced for use in the UK, and there are limited drug options for chronic diarrhoea caused by pelvic radiation when standard treatments such as loperamide have failed.

    As more people survive their cancers long term effects are becoming increasingly common. Pelvic Radiation Disease is now a recognised area of oncology and there are increasing numbers of Late Effects Clinics around the country. It may be worth asking if your hospital has a Late Effect Clinic, and if not, could you be referred to a regional clinic or local gastrointestinal specialist consultant. 

    I hope this information helps. Please feel free to get back in touch if you want further information or support.

    Best wishes

    Joanne F,

    Cancer Information Nurse Specialist.

    You can also speak with the Macmillan Support Line team of experts by phoning 0808 808 0000, calls are free, and lines are open 8am-8pm, 7 days a week, or you can send us an email or use webchat.

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