Gallbladder: did you have issues with it during your CFS journey?

[Kati]

Hillary Johnson mentioned on her Osler's Web that a number of PWC have had gallbladdder removed- and I am curious to know if it's been the case significantly here among the forum users.

 

[talkingfox]

I did 9 years ago, before we knew that what I had going on was CFS

 

[Kati]

The poll is ready talking fox. so you can answer!! Thanks!

 

[talkingfox]

oops...me and my patience deficiency...

 

[gracenote]

I never know how to answer these polls.

Hi Kati,

I definitely have "issues" with my gallbladder.

I'm a 2 to 3 on the scale, I still have my gallbaldder, but my gastroenterologist told me 3 years ago that I needed it out. I've been trying to hang on to it because I just don't think my symptoms will improve much with removing it. I haven't heard any success stories so far. But my diet is very restricted, and I'm often very uncomfortable after eating.

So moderate to severe CFS, should have my gallbladder removed (?), but still have it intact.

I would love to hear others' gallbladder stories.

 

[Kati]

Gracenote, I got first ill with EBV in November 2008, had a bit of liver involvement at that time, which can happen. I had one attack in January, and the in March, hell cut loose, I had this terrible attack that got me in the hospital. The surgeon was reluctant to have it taken out because it's better to do the surgery when its not so inflammed, and then it's easier to remove. In my case, I was on demerol injections every 4 hours and had a lot of pain still with fevers and what not. I was firm that I wanted it out. It ended up that it was necrotic, with no real stones in there,. just thick sludge. So I saved myself perforation and severe complications. I have a big "zipper" on my belly since the surgery was difficult technically- when it's a scheduled surgery, they are able to do it under laparoscopy.

That's just my story. I am not really into liver cleanses or gallblader cleanse (is it really dirty?) And didn't do anything to trigger the attacks (excessive fat intake). It just happened.

Hope it helps.

 

[leelaplay]

Hi Kati,

I'm a 2 to 3 on the scale, I still have my gallbaldder, but my gastroenterologist told me 3 years ago that I needed it out. I've been trying to hang on to it because I just don't think my symptoms will improve much with removing it. I haven't heard any success stories so far. But my diet is very restricted, and I'm often very uncomfortable after eating.

So moderate to severe CFS, should have my gallbladder removed (?), but still have it intact.

I would love to hear others' gallbladder stories.

My story is almost the same as yours gracenote. I've had some gallstones. I'd read some reports that this was a fairly typical ME/CFS problem and that surgery was not always a solution. (wish I could find it all now). Also, I had some articles on aneasthetic being difficult for pwmecfs and that it could take a long time for pwmecfs to recover from surgery and/or that the surgery with or without anaesthetic could cause a relapse.

There is a gallbladder, pancreas thread with some great info that I've been wanting to read for sometime. Maybe they participants will do the poll and update us.

 

[Kati]

I am not sure I can change the poll set up at this point I would have added a section saying the galbladder is still in but should be out or something like that. Admin... is there a way to change it?

 

[Katie]

I'm moderately affected at the moment but I have been severe and not had any gallbladder issues. Gastro issues for me have never been severe bar nausea and some cramps etc but only when I'm having symptom flare ups (a few times a week currently) or almost constant at the lower end of the scale. The fact I'm only 24 might also relate to why I've not had trouble as it's typically an adult issue (?).

 

[sunshine722]

Mine gives me a LOT of trouble and is a ticking time bomb.

 

[CJB]

I had mine removed in an emergency surgery. I was sick and in a lot of pain. This was several years before the CFS, but I had a lot of trouble recovering and everyone seemed puzzled. When i tried to go back to Yoga class the first time, I could barely walk back to the car and I had to rest for about an hour before I could drive home. When I got home, I fell onto the bed and fell asleep and spent the rest of the weekend in bed. It was weird, but I went back the next week and did a lot better.

At that time, I had gone through three previous major abdominal surgeries and a car accident. I knew what to expect when it came to a route to regaining physical strength. It was all totally different with the gall bladder thing.

 

[Kati]

I had mine removed in an emergency surgery. I was sick and in a lot of pain. This was several years before the CFS, but I had a lot of trouble recovering and everyone seemed puzzled. When i tried to go back to Yoga class the first time, I could barely walk back to the car and I had to rest for about an hour before I could drive home. When I got home, I fell onto the bed and fell asleep and spent the rest of the weekend in bed. It was weird, but I went back the next week and did a lot better.

At that time, I had gone through three previous major abdominal surgeries and a car accident. I knew what to expect when it came to a route to regaining physical strength. It was all totally different with the gall bladder thing.

Wow CJ you've been through a lot!!! My surgery was not my best time of my life for sure, I was in the hospital for 2 weeks- really sick- most of it was pre-op, and once I got the surgery, (big scar) they started very quickly to remove tubes and drugs... too quick for me- had a major crash 3 weeks after returning home.

 

[Martlet]

Mine was removed after it became infected. I was in agony, like labour pains but further up. It is one of the worst pains. I needed antibiotics for six weeks, and only then did they take it out. It has not improved my bowel symptoms, but better these than the trouble I would have been in if it had burst.

 

[George]

Hanging in there

I've had GallBladder problems off and on. They keep telling me they need to take it out. I keep telling them they can have my gallbladder when they pry it from my cold dead body. (grins) Like GraceNote I'm umm, concerned about the use of the anesthetics.:sofa:

 

[Hysterical Woman]

George/gallbladder

I've had GallBladder problems off and on. They keep telling me they need to take it out. I keep telling them they can have my gallbladder when they pry it from my cold dead body. (grins) Like GraceNote I'm umm, concerned about the use of the anesthetics.:sofa:

Hi George,

Good to see you here again this morning! I finally had to have my gallbladder out after nasty infection that left me in the hospital for 5 days hooked up to IV's. However, my problem was one giant gallstone that kept irritating the gallbladder itself - a difficult problem to solve. What is your situation - do you know? Gallstones? Recurring infections?

Just a note from my favorite book "The Magnesium Miracle" - after all I am the Magnesium Woman

"The elderly as well as people with arthritis, asthma, depression, diabetes, gallbladder disease, osteoporosis, or gum disease are often deficient in hydrochloric acid. All these condtions are also associate with magnesium deficiency."

Take care,

Maxine

 

[sunshine722]

I've had GallBladder problems off and on. They keep telling me they need to take it out. I keep telling them they can have my gallbladder when they pry it from my cold dead body. (grins) Like GraceNote I'm umm, concerned about the use of the anesthetics.:sofa:

I have known some very ill PWC's to have surgery and do well, one being a GB so bad it could become life threateningl.

No links but I have this in my files

Information Regarding Anesthesia
The National CFIDS Foundation
103 Aletha Rd, Needham Ma 02492
(781) 449-3535 Fax (781) 449-8606

Recent research, funded by the NCF, that found ciguatera toxin being produced by a disease process in the body, points to the danger of using any anesthesia that uses the sodium channel. Ciguatoxin affects the sodium channel function at the cellular level. Some anesthesiologists have had success blocking the sodium channel during anesthesia for ME/CFIDS patients.
"I would recommend that potentially hepatotoxic anesthetic gases not be used including Halothane. Patients with Chronic Fatigue Syndrome are known to have reactivated herpes group viruses which can produce mild and usually subclinical hepatitis. Hepatotoxic anesthetic gases may then provoke fulminate hepatitis. Finally, patients with this syndrome are known to have intracellular magnesium and potassium depletion by electron beam x-ray spectroscopy techniques. For this reason I would recommend the patient be given Micro-K using 10m Eq tablets, 1 tablet BID and magnesium sulfate 50% solution, 2cc, IM 24 hours prior to surgery. The intracellular magnesium and potassium depletion can result in untoward cardiac arrhythmias during anesthesia. For local anesthesia, I would recommend using Lidocaine sparingly and without epinephrine."
.Paul Cheney, M.D., Ph.D.

MCS: Lactated Ringers or Saline better than Dextrose IV

Also this:

Attention Anesthesiologists and Physicians Information Regarding
Anesthesia

I would recommend that potentially hepatoxic anesthetic gases not be used including Halothane. Patients with Chronic Fatigue Syndrome are known to have reactivated herpes group viruses which can produce mild and usually subclinical hepatitis. Hepatotoxic anesthetic gases may then provoke fulminate hepatitis. Finally, patients with this syndrome are known to have intracellular magnesium and potassium depletion by electron beam x-ray spectroscopy techniques. For this reason I would recommend the patient be given Micro-K using 10mEq tablets, 1 table BID and magnesium sulfate 50% solution, 2cc IM 24 hours to surgery. The intracellular magnesium and potassium depletion can result in untoward cardiac arrhythmias during anesthesia. For local anesthesias, I would recommend using Lidocaine sparingly and without epinephrine. Paul R. Cheney, MD,
PhD, 1992
Suggestions on anesthesia include using Diprivan (propofol) as the induction agent along with nitrous oxide and isoflurane (Forane) as the maintenance agent. The ones to avoid are histamine releasers that include sodium pentothol as well as a broad group of muscle relaxants in the Curare family, including Tracrium and Mevacurium. Patrick. L. Class, MD,
1996

 

[Hysterical Woman]

Good info, Sunshine, thanks for posting.

I actually printed this out and took it to the anesthesiologist before the surgery. He was reading thru it while I was in the prep room for the surgery and commented that yes he knew about CFS, that his wife sometimes got tired too. Not the words you want to hear from someone who has your life in their hands. I was terrified of the anesthesia since I became ill with CFS immediately following D & C surgery where I had a really difficult time coming out from under the anesthesia they used. Kept feeling like I was freezing cold and falling, falling, falling - it was quite unnerving.

However, during the gb surgery the anesthesia didn't seem to have much of an impact. What was impacted is the fact that the gb had grown into the liver and they had to take part of my liver out.

Take care,

Maxine

 

[George]

Ouch! Maxine

That hurts just listening to you describe it. Hey sunshine thanks for the info!

I'm 1/4 Navaho plus fat and over 40 so I have stones. It's kind of a given. The good news is that I can meditate myself through most attacks. So it's probably not that bad.

Still I haven't had a surgery in my life and I'm holding out. Now what really scared me was when they thought they might have to take out part of the pancreas because of the cyst. But so far I've dodged that bullet too. (whew!)

 

[Hysterical Woman]

That hurts just listening to you describe it. Hey sunshine thanks for the info!

I'm 1/4 Navaho plus fat and over 40 so I have stones. It's kind of a given. The good news is that I can meditate myself through most attacks. So it's probably not that bad.

Still I haven't had a surgery in my life and I'm holding out. Now what really scared me was when they thought they might have to take out part of the pancreas because of the cyst. But so far I've dodged that bullet too. (whew!)

Hi George,

Yes, painful. I have read that having several small stones is easier than having one giant one like I did (my Mom had the same thing, well, ok, not the same stone, but about the same size).

If you have several small stones it might be easier to find something that helps dissolve them. I have read of people doing this, but then read counter arguments saying that those people didn't really have gallstones. A disagreement regarding medical treatments - go figure

Good Luck,

Maxine

P.S. I used to take a supplement called Bilex that would help me thru attacks.

 

[gracenote]

I've had GallBladder problems off and on. They keep telling me they need to take it out. I keep telling them they can have my gallbladder when they pry it from my cold dead body. (grins) Like GraceNote I'm umm, concerned about the use of the anesthetics.:sofa:

Hi George the person behind George the dog,

My concern hasn't been about anesthesia I haven't gotten that far in my thinking but with whether my symptoms would actually improve. I don't have gallstones, at least none have shown up. I've been diagnosed with cholecysitis and positive for a "non-functioning gallbladder" (from a Hyda scan). But my gallbladder DOES function sometimes, it is just not functioning well. It became a bit happier when I got rid of some stomach bugs, but now is unhappy again. If I thought my problems would go away by having it removed, I would schedule an appointment with the surgeon to discuss then I would start thinking about anesthesia. Wouldn't a local be enough in a non-emergency surgery?