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Old 03-05-2008, 09:46 AM   #1
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Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hello, I am new here so I'm not sure if I'm doing this right?...Anyway I have been having nausea and urq pain for about a year. I had an ultrasound, it was neg. for stones. I had a hida scan, it came back borderline at 30% e.f., my surgeon says to take it out and surgery is scheduled for next week. However after reading alot of horror stories on here about having constant nausea and diarrhea after the surgery, I wonder if I should even do it? Right now I have nausea on a daily basis and have tightness and a nagging ache sometimes a pain under my right ribs below breast. It is manageable if I take phenergan, but I was hoping that taking the gb out would make the nausea stop, not get worse!! I'm just really confused now about what to do.... Is an ejection fraction of 30% low enought to warrant surgery? Someone please advise! Any comments or feedback will be GREATLY appreciated!!

 
Old 03-10-2008, 09:36 AM   #2
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Everybody heals differently, so simply because others take a long time to heal does not mean you will.

As for the horror stories you've read, try also to do regular research from medical sites and that sort of thing, rather than just relying on personal stories. I say that because the people who tend to post on these forums, myself included, are people who are having health problems and need support and answers. So it could be a bit biased, because the people who have no side effects and do wonderfully after surgery probably don't post on sites like this. So I think balancing out these personal stories with soem medical literature would help you be a bit more informed. I know for me, when I'm feeling bad that's when I post. When I have no pains, I don't really need the support and guidance from others. So most of my posts are pretty negative. I'm sure others are similar.

My GI is wanting to send me to a surgeon, and he believes my HIDA scan this week will be low enough for me to have it removed. I'm desperate so I'll do it if he says it's warranted. I'm willing to risk the horrible recovery because right now it's the only hope I have of some semblance of a cure. I will say, I know 3 people (an uncle, my coworker and my boss) who all had GBs removed. They all have healed perfectly and eat whatever they want now. In the beginning, sure, everyone is on a restricted diet. But not everyone has an inability to digest fat once they're healed. It's a big risk though. Do you risk that and do it anyway? I personally will, because I'm in so much pain now that I'll try just about anything. But you need to decide what is best for you. I think doing some good solid research would be a good idea. And just so you know, so many people who have "complained" of bad pain and of problems after their GB removal on this site in particular, have popped back in after a while and have said that they're doing well now after the healing period. So, while some of the things here may lead you to think the recovery period is horrible, there have been some hopeful stories once people are 6 weeks or so post-op.

Good luck.

 
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Old 03-25-2008, 08:17 PM   #3
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi April. Just thought I would give you an update, my surgery went well, I did have to stay the night though because I couldnt get my pain under control. I was discharged the next morning at 8:30. I have healed well, I am still taking things slow, I am now 12 days post-op and just this week starting eating more "solid" low fat foods. I didnt have the nausea after surgery but I think thats because I had a really good anesthesiologist, he gave me 2 different anti-nausea meds in my i.v., plus a patch behind my ear for nausea that I wore for 3 days. I have had a few times that I felt queasy but I've found that if I eat something light like toast or saltines it will make the feeling go away. I am still having what I think might be some gas pain in my right shoulder and upper back at times but not bad. How was your Hida scan? Are you going to have surgery? If so, I hope you do well. If I can answer any questions for you just ask, I'll be glad to help. This board has been a tremendous help for me. Good Luck!

 
Old 04-03-2008, 09:13 AM   #4
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi Denise - How are you doing after your surgery? Is your nausea and pain gone? I had my 2nd HIDA scan on Friday and don't know the results yet. When they did the 2nd injection, I felt burning along my front rib line and then pressure under my ribs below breast. That night, about 3 am I felt really awful. I woke up to bad diarrhea, nausea (worse then usual) and then a sharp pain in my right upper back which, came and went pretty fast. I had gone out to dinner that night, so maybe I overdid it there, too. I tried to be careful with the fat, I got broiled haddock but also had butter on my bread, potatoes au gratin and some blue cheese dressing on salad. When I got home, I had a small dish of low fat ice cream. Anyway, I'm still feeling lousy 90% of the time - nausea, no appetite, burping, irregular bowel habits, and random discomfort in RUQ. I get pressure along bra line (more on right side) every night after supper, also occasional burning in upper middle and right abdomen and back, once in awhile a sharp stabbing pain in RUQ. I'm taking Aciphex but it doesn't do anything. I've also tried Zantac and Maalox on top of the Aciphex which does nothing. I was taking the Aciphex 2 x's/day since Christmas but decided that since it doesn't help, I'll try cutting back. For the last 2 weeks, I've been doing 2 on one day and then 1 the next - it doesn't change how I feel, so in another week or two, I'll cut back a bit more. I have convinced myself that my gall bladder is my problem since I've had LOTS of other tests which turned up nothing. I really hope you're still feeling good. I hope to be in your shoes by the summer.

 
Old 04-03-2008, 08:14 PM   #5
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi Sciencelady, So glad to hear from you! I've been checking all my post trying to find you. I've been thinking about you. I'm now 3 weeks post op and for the most part I'm feeling pretty good. I've had a couple times this week that I felt a little nauseous but not too bad, thank goodness that I still have some phenergan left. Just a half of a tablet makes it go away. I think the nausea comes from me trying to add fat back to my diet a little too soon Maybe I'm not eating enough or as often as I should? I have came to the conclusion that I might be eating low fat for the rest of my life! I have found that a grilled chicken sandwich from Chick-fil-a agrees with me and I have also added spaghetti with tomato sauce, no meat with no problems. I still feel a little sore in my right side under my ribs but I'm sure that will go away once I am fully healed, I have to keep reminding myself that it has only been 3 weeks! I hope you hear from your hida scan results soon, I heard back from my DR in a day and a half. My ejection fraction was 30%, I think normal is 35%? My surgeon said that it needed to come out as it would only get worse. I don't know if I told you or not, but my surgeon found stones in there once he got it out. I was told back in Aug. of last year that I didnt have any...Your experience with the hida sounds a lot like mine, I had cramping and intense nausea when they injected the cck. This is funny, because I also had a steak dinner and it made me feel awful!! Before surgery I always had nausea, pain under ribs, tightness under my bra line, cramping, belching and bloating. My bowel habits would alternate between constipation and diarrhea. But my main complaint was nausea. I never had a full blown attack like some people have, I just felt bad all the time. I do feel better now and look forward to when I'm back 100%. I'm just taking things slowly and giving myself and my digestive system time to heal. I would advise anyone to have the surgery and also to take things slowly as far as eating goes afterwards. Just remember that! Please keep me informed, ok? Good Luck and Best Wishes!!
D

 
Old 04-04-2008, 07:31 AM   #6
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sciencelady HB User
Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi Denise - I'm going to call about the HIDA scan today. My Dr. is in a big GI group (7 docs and a couple of PA's) - they are always really busy and not that fast at getting back to people. I didn't have a good night last night. I woke up about 3:30 am feeling pretty "green". I started to get discomfort (pressure, aching, burning) that moved around my RUQ and (front and back) for a couple of hours until I got up at 5:30. I'm at work now and I'm not feeling much better. I've forgotten what it's like to feel good. Although every week or 2, I get a day when I do feel not as bad - no pressure, less nausea and burping, my energy comes back. It is such a treat! I'll keep you posted. Are you having any diarrhea? Did you lose your energy and is it coming back? You aren't throwing up, are you? Glad you're continuing to improve.

 
Old 04-04-2008, 10:15 AM   #7
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi Sciencelady, Sorry to hear you had a bad night. I know how it feels. To answer your questions, no, I havent actually thrown up, as soon as I feel the least bit nauseous I take a half of a phenergan, I am such a big baby when it comes to throwing up, it's almost like a phobia! If my kids gets a stomach virus, I am a nervous wreck! I have had some loose stools but not diarreha, (I hope I'm not jinxing myself!!) I have noticed that when my stools are loose it's because I have had salad. I've discovered that when the gallbladder is gone, you dont digest lettuce! But I will just have to deal with that because I love salads. My energy has gotten better but I still feel a little tired. I think this is because I am a stay at home mom and I dont have to actually go out to work..does that make sense? Once I am up and about or have to go somewhere I feel pretty good. I think being at home all day sometimes will make you feel tired? Maybe it's just me... I feel sure that you need to have your gallbladder out, especially since all the other test have came back normal. All of your symptoms scream gallbladder! I always felt bad in the evenings and at night too. I hope you hear from your DR soon. I'll be thinking of you. If you have anymore questions, dont hesitate to ask. These boards have been a blessing to me. Take care and keep me posted!
Denise

 
Old 04-06-2008, 07:18 PM   #8
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

I too was diagnosed with biliary dyskinesia last summer. My ejection fraction was 8.3%. I suffered from horrible indigestion, nausea, and discomfort in the RUQ. Post-gallbladder removal, these symptoms have completely disappeared. Don't let the horror stories on this site deter you. Most people recover just fine without incident. Good luck.

 
Old 04-07-2008, 04:58 AM   #9
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sciencelady HB User
Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Mindyp - Thank you so much for your reply. That is just the kind of pep talk I'm looking for. You and Denise are inspirations to those of us that are struggling through this right now. I'm now convinced that this is my problem and am looking to get it resolved. I am still waiting to hear about my most recent HIDA scan. I have a GI appt. in a couple of weeks and will probably discuss surgery then (HOPEFULLY). This has been going on since last summer and it is really putting a drain on my life. Everything else has been ruled out. Thanks again for your encouragement. When (and if) I get to feeling like you do, I have resolved to come back to these forums and post my success to encourage others. My doctor said that she know plenty of people who feel like us and get better after surgery. You only hear about the horror stories , which are pretty scary! THANKS AGAIN!

 
Old 04-10-2008, 08:34 PM   #10
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi Sciencelady, Just wondering if you got the results from your hida scan? I've been thinking about you...

 
Old 04-21-2008, 11:29 AM   #11
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi Denise - I've been away from my computer for awhile. Yes, I heard from my HIDA scan. They said that it came back at 50% - but we're not sure if that is accurate because there was a problem with the 2nd injection. Most of it ran all over my arm, so after monkeying around for 15 min. trying to decide what to do, they started the 2nd injection all over. So, I got part of one 2nd dose and then all of another 2nd dose. Who knows what that does to results? My doctor said that she still thinks that I have gall bladder symptoms and has sent me to consult with a surgeon - appt. is May 1. In the meantime, she has given me 3 more medications to try (seperately, of course), which I'm not hopeful about. I've already tried the Protonix and Reglan which didn't do anything. The last one is carafate, which I'll probably try this weekend. I'm sort of discouraged and scared at the same time. I'm pretty sure it's my gall bladder, too, but what if it isn't? My appetite is non-existent. I make myself eat about 1500 cal./day. My nausea is the worst in the morning but continues throughout the day. I'm pretty much always tired. My URQ pain is mostly in the evening, about 30-60 minutes after supper. It varies from dull pressure, like a golf ball, to a tight band in middle/right side along bra line, occasionally sharp, quick stabbing pains (mostly in front, but has happened in upper back). It's worse when I'm in a reclining position (like a dentist's chair). Sometimes I feel a burning in my upper abdomen, I guess like heartburn?, but I'm on a double dose of Aciphex each day. I also burp a lot. I've never had any "roll on the floor" attack. My bowel habits aren't like they used to be. I now go 2-4 times most mornings, somewhat loose, but once in awhile, I'm constipated. How does all of this compare to how you felt? How are you feeling now? My doctor said that she has another patient who had an EF = 50%, finally had her gall bladder removed, and now wonders why she waited so long because she feels so great. I'd love that to be me.

 
Old 04-22-2008, 10:50 AM   #12
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi Sciencelady,So good to hear from you! Sounds like you are having a really rough time of it. Sorry you had a bad experience with your hida scan. Maybe you have some stones that the u/s didnt pick up? That happened to me, remember me telling you that the surgeon found stones once he got in there? Before my surgery, I felt exactly the same way as you do now. I had a constant dull ache, almost felt like "something" was there under my right rib. It would get worse at times and feel like stabbing but not like some people describe as rolling on the floor in pain. Like you, after eating in the evenings I would feel tight pressure like a band around me under my bra line. I also had the burning pain in the top of my abdomen, right between my ribs, and burping ALOT! My stools were very unpredictable, I would go from being constipated to having crampy loose stools to full blown diarrhea. As I have said before, nausea was my biggest complaint, I can handle pain better than nausea. I am now 5 and a half weeks post surgery and for the most part, I feel better. I have learned that if I eat anything with alot of fat, I will feel a little queasy but not like before. I havent had the diarreha that a lot of people complain about, I am actually constipated most of the time but I think that is because I'm not drinking enough water...The pain and dullness that I had is gone now. I'm still on a low fat diet but slowly adding fat here and there. I havent had any red meat other than a little extra lean ground beef in a casserole my sister made and I did ok with that. My energy level has also gotten better, I don't tire as easily. My surgeon told me up front that taking the gallbladder out isnt a guarantee that I would feel 100% better but I figured any improvement would be better than how I was feeling. I say that if all the other test have came back normal and you are still suffering, then you should go for it, have it removed. I would do it again if I had to because I do feel better. Now I'm facing another dilemma, possibly a hysterectomy... But thats another story! I hope your appt. with the surgeon goes well. Keep me posted, I'll be thinking about you!

 
Old 04-22-2008, 11:46 AM   #13
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Thanks, Denise! Your support is really helping me. I already met with this same surgeon back in the fall just a couple of months after I started having problems. He said that he would take my gall bladder out then, because it very possibly could be causing my symptoms. My present symptoms are even more gall bladder like now. I didn't have as much discomfort in the RUQ as I have now. I've also had even more tests to rule out other things. And the nausea continues. I'm pretty sure that it will be up to me if I want it out. I'm glad to know that it was worth it for you. Is your nausea still much better or gone completely? I'm sorry about your new problem. I hope that you'll be OK. Please keep in touch and I'll keep you posted about my progress. I am a teacher and have a son graduating from high school in late June. I'm thinking that I'll wait until that is over and then possibly have surgery at the beginning of July. (Ouch, I just got a stabbing pain in my right upper back.)

 
Old 04-23-2008, 06:10 AM   #14
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Re: Help! I have been diagnosed with Biliary Dyskensia, Surgery Necessary?

Hi sciencelady, I'm glad that you have a surgeon that is willing to take it out. I was like you, the symptoms just kept getting worse and more "defined". In the beginning it was more vague. Right before surgery my back was bothering me alot, I guess it was the stones that I "supposedly" didnt have? To answer your question, the nausea has definitely gotten better. I do get a little queasy on occasion but nothing like before. I have read alot on these boards that gallbladder problems will only get worse with time so I would definitely recommend getting it out. I can understand your wanting to wait though. Hang in there, I wish you the best!!

 
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