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Miserable two years after cholecystectomy

Posted , 24 users are following.

treezy
treezy

I had one acute attack in October 2013 and had my gallbladder removed as a scan in the June had shown that there were gall stones. Post-operatively, everything was great and I was back at work in a week. In August 2014, I started getting a vague pain where my gall bladder had been and then the pain just got worse. I had two ultrasound scans in October last year but these were normal. I then had no pain from the December until April this year and it all started up again but this time with intermittent bouts of diarrhoea. My GP had referred me back to the surgeons and I had an MRI scan in June and this again was normal. I have almost been in constant pain daily since April and the doctor has now referred me back to the surgeons to see what else can be done. One of the surgeons that I saw said that it was probably just adhesions and IBS but the thought of living with this pain and the embarrassment of having to rush to the toilet at times, is really quite soul destroying. I have now worked out that eating fruit is really irritating my bowel and probably the main cause of the diarrhoea, so I have limited this. I may ask for Questran at my next appt with the surgeon but would really like to try some natural remedies. Can someone recommend anything? Thankfully, I have not had the gastritis and the bile must be leaking into my colon to cause my symptoms. Whenever my GP touches my right side, he can see that I really am in acute pain but all scans show that there is nothing wrong with my biliary tract. I would be interested to hear how others are faring. My main gripe is that following surgery, there is no information given to patient to warn them about this and for a long time, I really thought I was going mad or had something seriously wrong with me.

4 likes, 48 replies

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  • sandynan
    sandynan treezy

    Edited

    I feel your pain love I can't go anywhere anymore so fed up with nearly having accidents I'm nearly four years post GB op I take bile binders and imodium but nothing helps I have this day in day out I'm seeing another consultant this will be the fifth one on the 3rd November see what she says

    • treezy
      treezy sandynan

      Edited

      Thank you for this. I love walking but I can't walk for more than 30 minutes without knowing that there will be a toilet near by and so it has seriously curtailed this activity. Good luck with your next appointment. We can swap notes after I have seen my consultant!
  • Acejohnston
    Acejohnston treezy

    Edited

    Hi treezy I totally agree with you. No information is given to patients after this operation. We are made to believe we are imagining it. A lot of people are diagnosed with depression after this operation. Like you I had 1 attack last November and my surgeon whose done all my surgeries over the last 23 years told me once you start having pain it has to come out. I did ask about side effects and was told very uncommon. I had them all vomiting, bile pouring out of me, indigestion nausea pain! I was in and out of hospital having test after test and all clear. I tried the binders and Imodium but they made me feel worse! I spoke to someone who also had similar problems after gallbladder removal and they recommended psyllium husk powder. Well it's been a life saver for me. The one I take has digestive enzymes in it which are also important to take after this operation to help break down the fat in the good. Also calcium carbonate with vitamin d. I spoke to a woman who had bile diarrhea for 17 years and nothing worked and she was put on calcium carbonate with vitamin d for her bones and her diarrhea stopped. She takes 3 tablets a day. You could also try probiotics. They might help you too. I've also been seeing an acupuncturist whose put me on herbs and milk thistle extract which I find great. I have a cyst on my ovary and they are helping to shrink it. I think it's a matter of finding something that will control your symptoms so you can have some quality of life. I have become disillusioned with the medical profession after this and realise they are only trained to treat the symptom by medication or surgery. They have our best interests at heart but go by textbooks. They need to look at the root cause of these problems. I hope you find something that works for you soon. Take care x
    • treezy
      treezy Acejohnston

      Edited

      Thank you. Can you buy the psyllium husk powder from a health food shop? One of my friends is on Questran and it has been a life saver for her but she has also been told that she should not really be on this long term. I will get some milk thistle and probiotics and see if this helps. My GP is fantastic and he can see that I really am in pain and that is why he is referring me back to surgeons but I am keen to avoid any other kind of surgery or invasive procedures. Anti-spasodics and painkillers have not made any difference either. It actually feels like my colon is twisting sometimes and the pain is pretty intense. I have only lost one day off work in the past 12 months but I know that there are some days when I have forced myself to come in as I don't want to lie in bed and wallow. Lack of sleep and pain can cause depression and I totally understand why some people struggle with this. You are correct about the need for a good quality of life and that is all I am after. I think my family are scared to ask how I am feeling! I'll let you know how I get on. Thanks again.
    • Acejohnston
      Acejohnston treezy

      Edited

      Yes you can get the psyllium husk powder in a health store or boots in the UK if your living there. Lepicol plus is the one I use and it also has prebiotics and probiotics in it too as well as digestive enzymes. I take 1 heaped teaspoon twice a day. I've had no diarrhea since taking it and can eat normally. The difficulty with the binders is that they can stop you absorbing certain vitamins and mineral so you need to take multivitamins. They work for a lot of people but made me vomit! I hope that you feel better soon and you get answers from your doctors however I suspect you will be told it's ibs and prescribed medication. Most people are fobbed off with this. There is a test for bile salt diarrhea called a sechat test. It's available in Europe but not the U.S.. You can ask a gi doctor about this and also ask about post cholecystectomy syndrome! Good luck. X
    • treezy
      treezy Acejohnston

      Edited

      Thank you, I will get these tomorrow to see if they make a difference. I have milk thistle and multi-vitamins in the house so will start taking these too.
  • sarah87162
    sarah87162 treezy

    Edited

    I had my gallbladder removed at end of April due to gallstones.

    Better than I was but still quite a bit of stomach pain and pain in rectum particularly when I have just opened my bowels. GP seems to think it may be IBS. She also thinks it is unlikely but possible that a small stone has got stuck in bile duct.

    Waiting for an appointment for endoscopy.

    If you think it may be IBS try gluten free bread and cake. They usually have an aisle of gluten free stuff in supermarkets as thee aqre so many people with this problem now.

    Also be aware that you need a certain amount of fruit and veg every day.

    I know this is difficult if it gives you the runs!!

    Make sure you are drinkling enough, just plain water is best.

    Hope you feel better soon.

    Take care and keep in touch.

    Sarah

    • Acejohnston
      Acejohnston sarah87162

      Edited

      Sarah sorry your still suffering. Are you suffering from constipation at all? That can cause rectal pain and tummy cramps. Also I don't buy into doctors ibs theory. The question is did you have any of these problems before your gallbladder was removed. Most people don't and it is as a result of the surgery. Those who have constipation after the surgery are usually not producing enough bile which causes this to happen and those of us who have the diarrhea usually produce too much bile. The liver has to learn how to regulate bile flow without the gallbladder and sometimes it causes these problems. You could try the milk thistle extract. It helps the bile flow better and helps the liver work better. It helps digestion too. Also digestive enzymes might help you too. Good luck x
    • treezy
      treezy sarah87162

      Edited

      I have rectal pain too and saw my GP about this yesterday! An ultrasound will be able to see if there is a stone there and if still having problems after that, you may have to get an MRI scan too. I am still working out which fruit irritates my bowel the most and so far I need to avoid grapes, oranges and pears. I have been advised to start peeling my fruit as it is normally the skins that can cause the irritation - not sure if this is correct or not. I drink lots of water anyway and always choose water over juice. Hope you start feeling better soon.
  • lisajj68
    lisajj68 treezy

    Edited

    I did try Physillium Husk capsules from Holland and Barratt..they worked a little.
    • Acejohnston
      Acejohnston lisajj68

      Edited

      The capsules didn't work for me. They came out the same way as they went in! Then someone else who had their gallbladder removed recommended the powder. I mix 1 teaspoon in a glass of water twice a day and it's great stuff! Has been my life saver! X
    • ann55375
      ann55375 Acejohnston

      Edited

      Are you still on site.

      looking for some input on acid reflux and bile diarrhoea and nausea. Two years post cholecystectomy

    • Acejohnston
      Acejohnston ann55375

      Edited

      Hi Ann I found psyllium husk powder great for the bile diarrhea. The pills are not as affective as the powder. Also digestive enzymes can help with reflux and the bile diarrhea too. Ginger capsules can help with nausea too. I tried all the meds at the time and they didn’t help and I didn’t like the side effects. I’m sorry your still suffering 2 years on. You poor thing. If you have any questions give me a shout. Take care 
    • ann55375
      ann55375 Acejohnston

      Edited

      Thank you for your information. My main problem is twofold.  Horrendous pain like a stone stuck inbetween shoulder blades wakes me at night a couple of times a week.  Other days i feel nauseous but no other symptom, other days i get the bile acid diarrhoea.then i might get a good day then it all starts again. Basically there seems to be a problem in upper area some days, and lower area others.  Dr gave me omeprazole but it makes me feel awful.

      If i tookmthe powder for the acid diarrhoea daily would it constipate me on the days i am having a normal,movement?  If i take digestive enzymes will that stop the intermittent centre back pain?

      i am at a loss as to the right thing to do.

  • sally14335
    sally14335 treezy

    Edited

    Oh how your expression of "soul destroying" touches my heart and soul!  Just keep on this and don't give up.  You are doing everything you can.  Paying attention to what you eat is important.  The frustration begins when, you can at times eat certain things and the next time - ahh yes, you find yourself unable to leave the bathroom next morning!  Everyone is different, for me, too much fiber is not a good thing, salad 3 days in a row is a "no" as well as graham crackers or bran, forget it!  Hope you find answers soon!
    • treezy
      treezy sally14335

      Edited

      Thank you Sally. It is difficult trying to work out what foods to eat and what causes problems. I will persevere though. I got some health food supplements today, so fingers crossed!
    • lisajj68
      lisajj68 treezy

      Edited

      I can't eat spaghetti bolognese but can eat a hot curry and rice!!!  Vending machine coffee and hot chocolate drinks are a no go as is broccoli.  One day a ham sandwich is fine,the following week I "lose" it within 30 mins.

      Seven years post surgery and no better, thank goodness for the meds. Luckily here in Wales we get free prescriptions.

    • ann55375
      ann55375 lisajj68

      Edited

      i have either the bile acid diarrhoea or the pain centre back.  Never both at same time, and sometimes days inbetween with no symptoms, or nausea.  

      What medicarions do you use and is it for upper or lower symptoms?

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