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Bile reflux

Norwichcanary
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I have stomach cancer and my stomach has been removed.  Since then I have suffered bad bile reflux.  This has become worse as I start chemo again ( FLOT). I have a nightly nutritional supplement, the pump takes all night.

 I am suffering from bad side effects of the chemo but the bile makes it much worse.  I suffer from spells of  burning pain including in throat, hoarse voice, coughing, bad taste, nausea  and sometimes difficulty to swallow.   It is usually at night when the bile is worst and I wake up in pain / feeling sick

My consultant won't prescribe a bile binder as he believes the benefit of bile outweighs it being suppressed.  I have been prescribed other medication but none has worked as it is more for acid reflux which I don't  have.   

I have lost much weight so my dietician says I should be on high fat / protein food.  However this does not help tne bile for which I should be on a low fat diet.

Any suggestions to help me as I don't know how long I can continue like this.  

  • Hi Norwichcanary,

    Thank you for getting in touch with us, and welcome to our online community.  My name is Kelly and I’m one of the Cancer Information Nurses here at the Macmillan Cancer Support  line. I’m aware that you are concerned that your consultant will not prescribe a bile binder for you at this time.

    As we are not directly involved with your NHS care, have no access to medical records or able to assess symptoms fully here this means we are only able to offer general information and advice.

    When someone has complex symptoms, it is difficult for us to guide specifically with the best way to manage these.

    For example, it’s not unusual to try and manage underlying side effects caused by the FLOT chemotherapy.  This can include nausea and reflux type symptoms.

    Sometimes after surgery a side effect called dumping syndrome can occur.  This is when there is a risk that food moves too fast into the small bowel without being digested properly after the stomach is removed.  This can cause absorption problems and symptoms relating to this.  This can include nausea, bloating, tummy cramps and reflux symptoms.

    Your dietitian is best placed to advise if there is a concern of dumping syndrome and if this is why they have recommended an intake of healthy fats and proteins.   They can sometimes slow down the rate of absorption of food in the bowel to improve symptoms and also help when trying to gain weight.

    Medicines to control bile reflux may not be recommended straight away until other methods such as dietary changes are considered first. 

    However, if your symptoms aren’t improving you do need to get back in touch with the dietician, consultant, named cancer nurse specialist or GP.  They can re- assess the symptoms to understand if any other medicines such as bile binders would be appropriate at this time.

    Asking for an opinion from one of the hospital pharmacists may be helpful.  They work closely with doctors, nurses and dieticians for further advice and support if needed about the best medicines to recommend.

    If you have worsening symptoms of pain and nausea and are unable to speak to anyone straight away, we would encourage you to get in touch with your chemotherapy helpline number (if you were given one at the hospital) or call NHS 111 for out of hours advice too.

    I’m aware that you have joined our stomach cancer forum on the online community.  Being able to share and get support from others with similar experiences can be invaluable too.

    I hope this has been helpful, but please don’t hesitate to get back in touch if needed for further information and support.

    Best wishes and take care,

    Kelly (Cancer Information Nurse Specialists)

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

    Ref/KA/PN

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