Gall Bladder Out 22 months ago and feel sick most if the time

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Gallbladder came out in May of 2015 and felt good for two months, but have been sick ever since. I have been to 4 major hospitals and had countless gastric, harmonal and glandular tests. Diagnosis is atypical reflux and gastritis. PPIs do not work. I do take Welchol and Carafate suspension.

My life has competely changed; I seldom am able to leave the house, and wonder if it will ever end. Has anyone had a similiar experience?

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  • Posted

    Sorry to learn, you're still suffering!  What are your symptoms?  xx

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    • Posted

      I feel sick most of the time. It's hard to describe what "sick' means. It's like the flue without chills, muscle aches or fever or like a virus. I feel nausated but do do not throw up.  Night times are usually better, and I am not kept awake.  I feel better when I am lying down. The reflux does not give me heartburn, so this must fall into the category of "silent reflux". No doctor has used that term, but I have read about it.

      This has been going on for so long.

      This started about  a year or more before I had the GB out. I would eat something and get sick but could sleep it off. That would happen every month or so, then every week or so and finally it was with me all the time.

      A test of my GB showed sludge but no stones so, I had it taken out without doing any other testing. (Wish I had it back)

      I have had a few remissions from it over the past 22 months. Right after the surgery, I had 2 good months. One doctor put me on omperazole, and I was completely normal for over 2 weeks. The same thing happened when I started Welchol; normal for 2 weeks. Now I may have 2 "ok" days a month.

      Last summer was the worst. I don't think I have ever been sicker.

      I really just don't know what to do.

       

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    • Posted

      Have you been to a gastroenterologist?  I'm assuming you have. Have they investigated your vagus nerve?  Not sure of spelling, mind.  I'm also wondering if there is any food specifically that sets you off.  Am also thinking about gluten sensitivity issues.

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    • Posted

      Yes, I have been to 4 gastro doctors. No one has mentioned a vagus nerve. I have not been tested for food allergys, but I have cut out any wheat products  for a few weeks with no results. Celliac test was negative.
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    • Posted

      That's strange that none of them would mention vagus nerve disorders.  I would suggest that you look this up on line and see if your symptoms are close.  

      It couldn't hurt...

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    • Posted

      Hi Nancy, 

      Just wanted to add a bit to my previous comment.  People seem to have problems after surgery because they have either too much bile in their digestive system, or not enough bile.  

      People who don't have enough bile will have difficulty digesting their food and tend to be constipated.  People who have too much bile tend to have nausea and diarrhea.  

      The gallbladder stores the bile and measures it out.  When the gallbladder is absent, bile flows directly into the small intestine during digestion.  There is also a hormone made in the body that allows the bile to be reabsorbed after the digestive process is complete.  Some people stop making that hormone.  This also results in too much bile.  

      Sometimes people without enough bile find relief with supplemental bile, others with too much bile find relief by taking a bile absorbing medication.  That's what I do, as I have too much bile in my system. 

      Hope this is of some additional help! xx

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    • Posted

      I must have too much bile. I say this because my primary doctor said they saw bile on a test I had. I have had so many gastric tests and don't remember the name of it, As a result, the gastrointrologist prescribed Welchol which binds and the bile psses out in the stool. This has been a mixed blessing as it is very expensive, and I can't take any other meds within 4 hours of taking it as it will also absorbe that med. Welchol does not pass through the liver which I suppose is a good thing. On the plus side bowle movements have become very regular. Fortunately, I have not had any diarrhea through all of this.

      Have you been able to over come all of this and are you well? If so, how long has it taken you?

      I really can't express how awful it has been. I am able to get up now and go out, where as I spent the entire last summer in the bed. Summer came and went, and I never saw it. I still feel bad, don't want to see anyone and have little energy.

      Still, as I read all the posts on this forum, I realize that so many are suffering

      probably a lot more than I am.  It has just gone on for so long, and I am not 

      sure that it will ever end.

      I think as people improve and feel good, they go back to their life and don't post. I have often thought that if I do over come this, I will be sure to let others with similiar issues know that recovery is possible.

      Lynda, thank you for taking the time to write. This is good information which I will remember and discuss with my doctor.

      Take care and I do hope that the bile med has done its work and that you have recovered.

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    • Posted

      Hi Nancy,

      I'm glad I was able to help you!  How often do you take the welchol and when do you take it?  I'm on a medication called cholestyramine.  I take one sachet at bed time in 4 ounces of juice and 4 ounces of water.  And, it absorbs the bile.  If I take medication, I take it an hour before I take the cholestyramine.  It's true that sometimes I need to take immodium, but I do okay generally. And, I had to give up fatty/spicy food and pizza, but I can live with that. smile

      I know how you feel.  I lost most of last year.  I retired in 2015, then in early 2016 I started to feel ill.  I got diagnosed with endometrial cancer and had an operation to remove my uterus, ovaries and fallopian tubes as well as adjacent lymph nodes.  The staging was good, so I didn't need radiation, but I started to take some medication.  The side effects were terrible.  I stopped taking it in August after 3 weeks and it took the rest of the year to recover from that.

      But now, I'm feeling much better!  Getting more and more active!  Take care, and let me know how you do!  

        

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    • Posted

      Lynda, you have been through a lot, but it appears you are on your way to a 100% recovery. Take it easy and be careful not to do too much.  I have that problem, and it always gets me in trouble.

      I think we are taking a similiar drug by different names. I should drink more with the Welchol than I do. I take 3 tablets a day and at the same time, since I can not take any other meds 4 hours after or before taking the Welchol. It also is supposed to lower cholestoral as well.

      I am better than I was last summer; in fact, i didn't even know that last summer came and went. I am able to get out some, drive a car and go to the grocery store. The funny thing about this thing is that when the reflux abates, I am 100% and can do anything, but it only lets up about 5% of the time and is with me the other 95%. It has gone on for so long and the fear is that it will never go away completely.

      I think one reason this forum has been helpful is the exchange of information, but also I have realized that so many people young and old have serious problems far worse than mine. If I ever do get back to a normal state, I hope I will remember and reach out to some of those people.

      Lynda, keep going forward. It sounds as if you are almost there.

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    • Posted

      Hi Nancy,

      The drugs we're taking are similar!  That's a huge restriction of time with the Welchol.  As far as I know.  I have a much easier time with my cholestyramine. I noticed though that one of the side effects of Welchol is gastric upset.  Do you suppose the Welchol could be causing yours?  I don't seem to have that with the cholestyramine, as long as I take it with enough liquid. Though, sometimes it's pretty awful to drink--I always make myself remember it's the reason I'm not running to the bathroom every 20 minutes or so.  smile

      I think it's good to stay checked in to the site.  As you said, there are so many people out there suffering, whose doctors have told them to stop whining and get on with it--or worse, that they don't even have a problem at all...

      I hope you keep improving, and finding ways to help with your symptoms! xxx

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    • Posted

      I don't think the Welchol is causing the "sick feeling". There has been a period of time that I was not taking it, and I had the same sick feeling. I describe it as nausea, but I am not sure that does it justice. It is mostly in my throat which is full most of the time. When it is not full,  I don't feel nearly as bad. From what I have read, this is classic reflux; full throat, clearing my throat constantly, dry cough, post nasal drip. I could take all of those symptoms, but the sick feeling that goes along with it is awful. It's tanamount to having the flu except that this rarely goes away. It had gotten bad before the gall bladder came out and then it got worse with the bile and acid unleashed. All in all, I have had this to some degree for over three years. I have to remind myself how bad it was last summer. I couldn't stand alone or write my name. So I need to realize how much better things are compared to that and be grateful. I'm working on being more positive.

      You are so right about doctors. I do understand that a doctor can't get emotionally envolved with a patient's pain. If they did they would burn out quickly. At the same time, I have seen very little empathy or caring or encouragement from doctors. The smallest indication on the part of the doctor that he/she understands how you feel would go a long way even if they don't know the answer. They talk but seldom listen. I am in the US and medicine has undergone many changes in the last 20 years. I think many doctors are unhappy with the way things have gone, and ultimately it's the patients who have felt the repercussions. I went to the same doctor for several decades and watched changes in how how he practiced medicine. At about 90 he recently retired, so I have a new doctor as of about 2 years ago. Right now, we are having a tough time getting to know each other,

       

      I do know that this has been a humbeling experience, and I have have had an up-close and personal look at 21st century medicine.

      Lynda, thanks for listening to me and take care.

       

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    • Posted

      Hi Nancy,

      You are so welcome!  I am in the US as well.  What they practice doesn't really feel like mediicine, does it?  Of course, I recently changed my primary care doctor.  I go to an HMO and I tried to change from my previous doctor several times, but they wouldn't let me.  Finally, I called and complained aboout her, and they asked my new one if he'd accept me.  He consented.  I'm so glad that I can see someone who will collaborate with me to keep me healthy! He's my husband's doctor, too, and I was impressed with the treatment he received.

      Please do let me know how you get on!  Illness is very disheartening. xxx

       

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    • Posted

      Are they in the same practice? My daughter recently had an experience where her doctor that she wanted to leave and the one she wanted to see were in the same practice. She was told that it would be too awkard, but she finally prevailed and is much more satisfied. (Both were women)

      She did have an unfortunate experience when shortly after changing, she had an emergency and the original doctor was on call.

      Having someone you can can talk with and with whom you have confidence is all important when you have a serious illness. My husband and I also share a doctor, and I think we will continue to do that although not with this particular doctor.  I have a feeling that he may be as happy to see me leave as I will be to go. His bio reads that he believes in the doctor and patient working together to achieve the best result which sounded very appealing to me.  That's the theory, but in practice  he talks and does not encourage questions. It's hard for him to listen when he is  constantly talking or typing on his computer. Many people like him, so maybe it's just me. I think I might have gotten along with him had I not been sick; but then isn't that why you go to the doctor?

      Lynda, today has been a good day and I think you are partly responsible for that. Thank you. I have found that concentrating on something, as I am doing now, is relaxing and relaxation is good for the digestive system. My daughter insisted that I try meditation which I did not do for many months, but as I began to get stronger, I gave it a try and have been pleasantly surprised. I don't do it correctly as I have never had any instruction, but I do think it has helped if only for a few hours at a time. I keep the CD by the bed and listen to it when needed.

      I hope you are now able to enjoy your retirement and will continue to improve. You are right, illness is very disheartening and it's good to have someone to talk with who has been there. Looking forward to tomorrow...

       

       

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    • Posted

      Hi Nancy!

      If you'd like to send me a private e-mail, you can click the envelope underneath my patch to the upper left of this response.  I'd be fine with it.

      Yes, the doctor that I left was in the same practice.  The reason I left her was that she was part time and has an illness that results in her often calling in sick.  When I was spotting last year and scared to death I had cancer (I did) she sent me for an ultrasound, and I guess after the results was planning to refer me to an ob/gyn.  But I knew that time was of the essence, so I called her for a referral to an ob/gyn instead.  

      I waited for a couple of days to hear from her, and then I also called my endocrinologist.  Her office called with a recommendation.  Finally, after a little more than a week I contacted my gp.  The receptionist had to track her down in the rather large office to get her input.  Fortunately, the referral was the same ob/gyn practice.

      Due to the kindness of one of the ob/gyn practice's intake clerks, I got a referral to a great ob/gyn, a man in his 60's.  I saw him the next week.  The day I saw him he sent me for an ultrasound, then for blood tests for ovarian cancer markers.  Once that was accomplished, my IBS kicked in and I couldn't leave the house.  He prescribed a tranqulizer and after taking that and 3 immodium I got in for my biopsy on a Tuesday.

      Three days later, on Friday after hours he called me to let me know I had cancer, but he referred me to a surgeon/oncologist the next week.  Fortunately, a woman had cancelled her surgery, so I had a surgery date before I saw the surgeon.  I saw the doctor Thursday, went to the hospital for pre-op and had the surgery after the week end Monday.

      Tuesday morning, I was lying in bed, and I got a call from the GP to ask how I was doing.  She told me that if I ever needed to urgently get in touch with my surgeon oncologist I should call her.  That really was the last straw for me. I thanked her politely, then hung up the phone.

      When I felt sufficiently well, I called the practice.  I'd already tried to change doctors twice, but this time I was perfectly frank with the receiptionist and told her why I wanted to leave and she promised to speak to her supervisor about it.  I told the receptionist I was willing to complain formally, in writing!

      The doctor I have now, uses glasses that record our conversations so he doesn't have to sit typing.  I can contact him by e-mail, if I need to. 

      I also do some meditation.  I use mala beads sometimes, but other times I listen to a CD.  It helps so much.  Just relax and focus on your out breath.  When you find yourself thinking, just tell yourself "thinking" and focus on your out breath again.  You really can't do it wrong, the point is just to do it! smile

      I have really enjoyed our conversations!  I hope you have a wonderful day.  xxx

        

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