Codeine to treat Diarrhoea

FormerMember
FormerMember
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I've been taking Cabozantanib for several months and have always suffered with bad diarrhoea. My dose was lowered, then I tried Imodium and it was still a problem, although a lower dose did help. The last week though it just got too much and I had to stop taking it.

Today I had my monthly chat with the hospital who look after that side of my treatment, and they suggested Codeine. It's odd that it wasn't suggested before, and also odd that in all my research I've never come across that as an option. Now that I search specifically for that, I've found it mentioned in several places along with Imodium.

In the past, I've avoided Codeine for pain as it's always caused me awful constipation. So now I'm scared to take it again! I'm hoping it'll counter the effects of the Cabo but not stop me being able to "go" completely.

I know that many people here have discussed diarrhoea caused by Cabo, including with me in some of my previous posts, but has anyone else tried Codeine and has that been effective without preventing you going to the loo at all?

I've been told not to take Imodium at the same time. They've also told me to take a break from Cabo for a week (I already started that) then start again on 20mg per day, which is the minimum. I had started on 40mg per day and then alternating 40/20mg, all due to the diarrhoea.

It worries me that I'll be on the minimum dose, especially as I haven't been able to have a monthly infusion as part of Immunotherapy because the side-effects were so bad I ended up in hospital for several days.

Geoff.

  • Hi Geoff

    My cancer was different to yours so hope it is ok to reply. 

    My diarrhoea was treated with codeine phosphate, ondansetron, loperamide and buscopan. It was adding the codeine phosphate that did the trick for me. I had no issues with constipation from it. 

    For me the codeine phosphate was helpful. When I have taken cocodamol for other reasons, I do find that messes up my tummy for a few days after. 

    Hope you find something that helps.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi  

    I was on cabozantinib for just over a year and diarrhoea was a major problem.   I've lost a kg per month, which has become a concern.  The hospital suggested that I increase my calorie count by drinking more milk.  I gave this a try and the results were disastrous.  So I switched to lactose free alternatives and lo and behold, the diarrhoea mostly stopped.  I have even managed to regain some weight. I switched to Everlimos and Levatinib in August 2025 but the diarrhoea is exactly the same.

    I was also advised to avoid caffeine and alcohol.  So my Costa order is now a decaffe latte with soya milk, and I have found Thatchers 0.0 and Guinness 0.0.  And I now state that I am lactose intolerant when eating out, which does restrict choice a bit.  Overall, it's not too much hardship and what a difference it has made.

    May be worth a try.

    Best wishes.

  • FormerMember
    FormerMember in reply to jane2511

    Hi Jane,

    Thank you SO much for that Jane, you've answered all my concerns perfectly. I'm just wondering if Codeine is the same as Codeine Phosphate? No need to reply, I'll look it up before you see this.  Slight smile

    Thank you again.
    Geoff.

  • FormerMember
    FormerMember in reply to SandyN

    Hi Sandy,

    Thank you for that very informative reply - Especially about the milk, as I drink quite a lot in cereal. I'm currently in a hurry, getting ready to go out for counselling, so I'll re-read your reply later as there's several things I want to think about and look into.

    Many thanks and have a lovely day.
    Geoff.

  • Not sure but I was prescribed codeine phosphate. 

    I am pretty sure it is prescription only. It does not contain paracetamol like cocodamol does. 

    The nurses on the Support Line will be able to confirm

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you for posting about Cabozantinib. I’ve been on lenvatinib for two years and had diarrhoea at first but then developed primary hyperparathyroidisms which made me constipated.

    did you have any other side effects like hair thinning and fatigue? Sending you warm wishes