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Bile Reflux

Hi

I oftan look on this site, but this is my first post! My name is kate and as of the 21st Nov it will be three years for me with the cml! I am doing well but what brings me here today is to seek a bit of advice or to see if anybody has been having any problems with reflux since being on glivec.  In the last month or so been getting problems with reflux, my GP sent me to have a camera endoscope thing down my gob and into my stomach, which was a lovely exeperiance!! The findings were that everything was normal but there was bile reflux.  I have tried taking omeprazole and domperidone which have not seemed to help, and I am taking gaviscon at night as it effects my sleeping. I have been taking aloe vera as well as I don't just want to take the horse pills all the time.  It doesn't seem to be triggered by eating certain types of food and my diet is healthy but I seem to have constant heartburn and a buring feeling in my throat and sometimes my stomach, it never goes properly.  Its really starting to get me down and I'm finding it hard to take the meds as my tummy feels so unwell all of the time.  I have to say it is making me miserable and a tad grumpy! The bile is vile!! Has anyone else had any similar problems or have any ideas about things I can try to help. 

Many thanks

Kate

Hi Kate

I suffered from reflux before Glivec but Glivec (which I've been on since May 09) definitely made things worse.  I therefore had to deal with it right from the start.

Unlike you however, omeprazole works a treat, and i've been taking it pretty much as long as I've been on Glivec now.  I take 10mg a day, every day, and never have a problem - though if I stop for a day or so for some reason, sometimes it takes a few days to get back on track. So I would say that you do need to take it regularly for it to work: it needs to build up.  It may also be that you might need to take a little more - say 20mg - for a few days to break the back of it, and then reduce the dose if you can: I had that advice as well at the beginning.

Interestingly a friend of mine (who does not have CML) also takes omeprazole. He found that he didn't do so well on the generic version (of which there are many) so insisted to his GP that he gets the original Losec.  Something to do with the excipients in the different versions. I haven't found that - any old omeprazole works for me, and so long as I take it I'm actually much better than I was before I started on Glivec...

Good luck - you have my sympathy as I know how miserable this can be

Richard

 

Hiya Kate, I too suffer terrible from acid reflux/bile. I started off on 20mg omeprazole and it didn't really work, had it upped to 40mg a little better but still uncomfortable. I altered when I took my tablets, as advised by my first consultant I took it at bed time to minimize side effects, but I think the tabs sitting in my tub was making it worse. Now I make sure I take it with lots of food and water, milk might help too. I am also now on Esomeprazole I take this 40mg tab every night before bed. Although I do suffer still, it has eased a little. There is nothing worse and I totally understand how you feel, it makes me miserable too and I even began resenting Glivec. I hope you start feeling better soon.

Liz. x

 

Thanks for the replys.  I am glad I am not the only who suffers!   I have never had it before but  think it has been creeping up on me for a bit. I had a really sore throat for a bit and  I have been unable to eat certain types of food for a while and drinking alcohol doesn't seem to sit right in my stomach esp things like wine and gin and tonic.....sadly these days I don't drink like I used to!  Still saves me lods of money when I go so it has a plus side! I am just hoping thigs will settle down.  I only took the emeprazole for two weeks, but I was sure it made my stomach worse. Maybe I should give it a go again as my symptoms are not great, I have the classic cough and sore throat not to mention weight loss which I am trying to stop as I don't have too much to lose.  My concern about it not working is the fact my reflux is meant to be related to bile so not sure how much use a acid supressing drug will help. I am just  trying to chill out about as much as I can I as I'm sure it just makes things worse! I have had a bit of stress going on so I think I need to do nice things like go for a massage's and not focus on it too much!! Maybe a bit of cake to help with the weight gain, although sadly not chocolate as that is another thing that seems to make me worse!!

Kate 

Dear kate... seems like you might be intolerant to imatinib? How about talking to your consultant about changing therapy- you should not have to put up with this level of digestive problem.. expecially as the usual drugs to counter this effect are  not working for you.

You could ask also to be checked for helicobacter infection... a common bacteria found in the stomach that can cause serious digestive problems (including ulcers). It is an infection that can now be effectively treated.

I would suggest you try to persevere with Aloe Vera  juice before every meal.. no matter how small. 

and also you could try homeopathic Nux Vomica around (3o c potency) and give up drinking coffee... and of course drink lots of plain water.

Hope you find a way to deal with it.. but do let your consultant know how bad it is ... and maybe he/she will try a change in TKI.

best wishes,

Sandy

 

 

Kate,

I'm sorry to hear you're having issues - I too am having the same issues on tasigna and i know it's not much fun. It sounds like you're doing all the right things. My reflux/heartbrun comes and goes, just recently it has calmed down. I took Zantac for 3 weeks straight (ranitidine) and complimented that with aloe vera juice (that stuff tastes like soil, but needs must). I also drink LOTS of water now which seems to help. I've cut out all alcohol (wine is esp not good) as well as citric acidic fruits. I found eating white rice as my staple helps quite a bit as well as eating little and often.

I hope your side effect is cyclical and things start to improve.

Chris

Hi, Kate

If you feel like no meds are working, there is a small op that can be performed. Ask your consultant or GP to refer you to a gastro doc. It maybe something worth looking into, especially if it's affecting weight and getting you down.

Lots of luck. x

Hello all and thanks for the further messages. 

I have spoken to my drugs nurse as I am on a the SPIRIT trial, she is really nice and helpful.   She has spoken to my consaultant to bring him up to speed and has asked the Hemo pharmacist to give me a bell to talk drugs and things that may help.  If things don't improve they will get me in for an appointment to discuss what to do.  I think what I need to do most is relax a bit beacause I am sure that feeling more stressed about it will only make it worse.  I think in part stress is a factor, I have had bit of a difficult time recently and stress and feeling anxious can cause reflux problems. Fingers crossed its not the glivec as that really works form a cml point of view and I will probably have to sell a kidney to get the other drugs out of the NHS!!!  From when I had the lovely endo scope I know that everything was normal and that I didn't have that helicobacter thing going on, so that is something to focus on!  

Oh well.....best go eat some white rice, drink some aloe vera, drink some more water and do nothing that involves gin, wine, coffee and  chocolate.....once apon a time that would have been an ideal dinner. hey ho.....

 

kate x

 

Hi kate... just thought of another complimentary thing you could try... fresh ginger root is fantastic for dodgy diegestive tract stuff... or your could make a lemon and fresh ginger tea, which is good for colds and chesty coughs too.

Another thought I had was that you could try digestive enzymes (available in health food shops and online)... these replace the stomach acid that is lacking when chronic indegestion/acid reflux is a problem. I know is sounds counter intuitive but that is the theory... and also- gaviscon is a bad idea long term as it neutralises the stomach acids needed to digest food efficiently. Try separated carbo foods from proteins.

Best wishes,

Sandy