Topic: another gallbladder goodbye party? opinions again please!
trails
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Member # 1620
posted
yep---we have another lymie who has gallstones. In 2001 when I had sludge and stones that caused an attack right after IV rocephin, I used actigall and disolved everything in 8 months.
I havent had any more rocephin, but I now have stones, no sludge. I tried actigall for about 5 months with no results at all.....except perhaps a tiny bit of resolution to my pain.
I need to have some major pelvic surgery in the coming month and the doc can also take out the GB. Should I let him?
This surgery will be my 5th in 6 months. It will be combined with a major pelvic surgery which is going to start off being laproscopic, but could end up being laparotomy (open). It could be as little as 4 hours with not much organ removal or it could be a major ureteral reimplantation into my bladder and a full hysterectomy. It all depends on what they find and how it all goes that day.
weigh in with your opinions here please. how many are leading full lives without your GBs and how many are eating full lives without it too! no meanness allowed. Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
Trails, my GB surgery was the 1st major one in 79 done the normal way with complications galore. I didn't know I'd had chronic lyme for 10 years at that point. Murphy's law hit; anything that could go wrong...did!
Also had constant diarrhea after the surgery. Now I know that was my gluten intolerance and allergy to DAIRY products causing this as well.
Would the GB be lapro too? Trails, I'd go for it; they are in the area ... why not get it so you do NOT have to have another surgery later with more expenses and rehealing the same areas over and over. Plus extra scar tissue after effects.
Best wishes whatever you decide to do Trails; it's your body; listen to what your gut is telling you ok. Bettyg
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trueblue
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Member # 7348
posted
trails, I just don't what to suggest. If the gallbladder is definately not working it might be better gone. Although, if it does function perhaps worth keeping.
No help there, I'm sorry. I do wish you the best of luck and the easiest possible resolution to all this crap. I'm so sorry for all the suffering you're being put through.
Personally, I've spent a long time trying to keep my gallbladder as long as I could. It hasn't wroked righ most of my life. I'm starting to rethink that decision.
I wish I was any help.
Sending you strength and wisdom to be able to make the best decision. I know full well you've got plenty of both but what more could a little more hurt.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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robi
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posted
Have you looked in to any alternative possibilities? Cleanses? I know its not our thing pe se but its worth a try before removing body parts. Are you having GB pain?
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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timaca
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Member # 6911
posted
Trails~ I still have a functioning gall bladder, so I cannot offer advice that way. I CAN give you a hug...you have been through SO much!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Trails, I have my GB, no sludge or stones I can't help you in that area
Perhaps a hug
Perhaps seeing an alternative LLMD or ND to treat before the surgery and prevent , possibly resolve the stones. I am very happy with my altrenative/integrative doctor who is not far from NM.
Posts: 628 | From the south | Registered: Dec 2005
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lymemomtooo
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Trails, I am sending a lot of hugs your way..Good luck...lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
awwww---you guys are all so sweet and caring--thank you so much for the continued support and compassion.
to answer some questions: I have GB pain whenever I treat for babs. Then if I stop treatment it goes away in a few MONTHS. I occassionally have GB pain otherwise. It can get bothersome, but never been debilitating like the attack I had in 2001.
I have tried to disolve with actigall now for a few months....it doesnt seem to be working on these stones.
I do not believe in GB flushes or cleanses. My good friend is a chemist and said that those ingrediennts combined with stomach acid and other chemicals found in your digestive system create those balls that people think are stones. I wont do a cleanse for that reason.
I know that GB surgery is a HUGE money maker for surgeons in america and that there arent many alternatives right now coz there is more money to be made in removing the darn thing.
I am hoping my story is much like yours cave---that not only are there stones, but that the poor thing is diseased from Bb or other TBDs. I dont hope for disease, but what I mean is if I get it out--I would like for there to be other reasons besides just stones. and taking bb right OUT of my body is alwasy a pleasant thought.
It would be laproscopic and it wouldnt cost me any more money than all the other stuff going on that day. Also the surgeon is very very thorough and very good, a much trusted person--if i should have my GB out I would want it done by him!
I am scared i wont be able to eat my fatty foods and spicy foods though!!!
and also like you true---I have been on a crusade to save my gallbladder for years. It was the reason I joined lymenet in 20001. I think my gallbladder is the cutest little thing in the world. I hope if I take it out they let me take it home--after biopsying it for everything under the sun of course.
anyhow---more opinions and stories please! and thanks to everyone so far!!! trails
5dana8
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Member # 7935
posted
(((((Trails))))
Good luck with your surgury
I didn't have pain or stones just a sluggish GB>with nausa. I was too chicken at the time to have the surgury. Still can't eat greasy foods but I think its my gerd involved too.
Its a very personal decision & a hard one to make-I think if you have tryed to disolve the stones & hit a brick wall maybe a good idea to have it out. But hopefully your body will have had a chance to re-group & recover from the last surgurys fully first.
Sending healing prayers & thoughts your way
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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cactus
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posted
Hi Trails,
Yikes, you've been through it!
My GB story is all mixed up with my endo story, and my lyme story, so I thought I'd share some of it with you. Hard to tell where one begins and another ends though, they're all intertwined - all sorts of pelvic and abdominal pain, and it's difficult for me to assign a "cause" at times - is it endo? surgical adhesions? GB? kidney stone? nerve pain? You probably know what I mean - so all I can do is guess about what's happened in my body sometimes - don't know if it will help you.
I had my GB out in June, after a few months of Rocephin, and many mos of babs treatment in the past year. It wiped me out for maybe 6 weeks (which I thought was crazy) - I was extremely fatigued.
Right after that my energy started picking way up, and I went into an amazing period of time - almost euphoric to feel that well! Really cool while it lasted.
Pretty much right away I could eat all the fatty/spicy foods I usually do. Spicy-wise, I really put it to the test - green chile is a staple around here. Hotter the better. No problems, but I go more often than before.
My GB surgeon said it looks as though I've been having GB trouble for years, not months - there was so much scarring in the duct, etc. So I feel better about getting it out. Also, from the changes in my symptoms since, my LLMD thinks I had some keets hangin' out in there, so hey, I'm fine with cutting 'em out!
On the endo front, the GB findings kinda threw me. There's no question I had/have endo - but since my GB pain seemed lower than most describe, and endo can be anywhere, I wonder if some of my "endo" pain was GB pain over the years? Either way, it seems improved now - so I'm not complaining.
I had a hyst in '00, but kept my ovaries, so I always figured any pain was coming from endo - planned on hanging onto my little ovaries unless the pain got so bad they had to come out (I like 'em, but they were kinda like my backup plan). It's quieted down now - but I have no clue if it's because of having my GB out, or if I'm just having a break from endo! Or even just being on abx - maybe it was all caused by Lyme?
Anyhoo, the point of all this is that my GB's gone, and I don't miss it. (Or my uterus, for that matter).
For whatever reason, I'm having a respite from pelvic/abdominal pain for pretty much the first time in my adult life - so it's cool, whatever is helping.
Whatever you decide is best for you, I hope you're feeling better soon & can take a break from the OR...
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
For gall bladder, look into trying curcumin or Chinese Gold Coin Grass.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
I think it depends on the condition of your GB. I had laproscopic surgery because the stone was enormous and calcified so I was unable to do the flushes to pass it. However, if it had been smaller stones I certainly would have gone that route. I know many people who have had success with this and a GB is a good thing to have. Personally, I think we need all of our organs (if they are healthy and functioning).
Prior to surgery I experience a lot of pain, especially after fatty type foods, but I can now eat almost anything without a problem. An interesting note though,I first developed Lyme symptoms in the hospital directly after that surgery. Of course, I was sent home as if I was just having a minor reaction to the surgery, but 9 months later I was still deathly ill with every Lyme symptom I have now ever heard described. Unfortunately, 15 years ago there wasn't much information to be had about Lyme.
Sadie
Posts: 115 | From new york | Registered: May 2006
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trueblue
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Member # 7348
posted
Hiya Trails,
Having read everyone's responses (especially Cave's and Cactus') I'd like to change my answer.
Now that I think about it I have had gallbladder problems since my early 20's. I've nursed it for all this time. I'm 49.
If someone was going in for something else I would absolutely have them have a look and if it looked iffy, which I'm sure mine is, take the thing out.
I am the only person in my family to still have a gallbladder.
All that said, the first gastro I went to in my 20's felt my GB was sludgy but could find no stones on tests. He had me drink 6 glasses of papaya juice a day for a couple of weeks.
He told me he had stones and dissolved them that way. It's a long time ago but it worked.
I don't know if that's something you could or want to do but perhaps it's something to look into in the meantime. Probably high in sugar and would have to ask the doc, etc...
Ok, I've gone back and forth enough. But am thinking I'd like for the first time in 25 years to be able to eat anything I want without repercussions(sp?).
I hope this last surgery is just that, that you are able to heal and get on with your life leaving all this pain in the dust. You're one tough cookie but it's definately time for a well deserved break.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Andie333
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posted
Trails, you have really been through it... and, as always, my thoughts are with you.
I've got some experience to share here. I had my gall bladder removed in 2001, after I'd been infected with Lyme but before I had any clue about it.
I didn't really have a choice about the operation; by the time I was in the ER (with absolutely searing pain), I had turned bright bright yellow.
Anyway, this was my very first surgery, and lapsocropically, it was pretty much a non-event. I was back at work within a few days.
Some few months later, trails, my health nosedived, but I think that was just my Lyme finally acting out, and NOT the gall bladder situation.
Now to the all-important question about foods: Like cave said, I've had no trouble at all with spicy foods, and I tend to like my salsa with a kick.
While I don't tend to eat a lot of very rich foods, only one thing I've eaten since the surgery has ever bothered me, and that was a lobster alfredo that was made by a chef in my family and so unbelievably rich wtih butter, cream and cheeses I'm not sure how I would have handled it with a gall bladder, much less without one. Again, though, that was my only negative experience, and it was an anomaly.
The only thing I regret is not having known at the time I had Lyme. I would have been curious to see how Lymey my gall bladder actually was. But I haven't missed it.
What I'm mostly sorry to haer about is the other part of this surgery. But I'm gonna hope for the best possible outcome and trust that you'll continued to keep us all posted!
A big hug to you --
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Jill E.
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Hugs to you, Trails,
You have certainly been through more than your share and spending way too much time in hospitals! Ask them for a frequent patient discount - ha, ha!
I still have my gallbladder, but wanted to mention one thing about having samples sent to IGeneX.
I had to go through a liver biopsy due to damage from Ketek.
It wasn't until after the biopsy had been done and the pathologists had made their cute little slides that I thought about having a sample sent to IGeneX or MDL.
Unfortunately, the pathology lab had already used some kind of chemicals or stains or something on it that neither IGeneX or MDL could accept for their tests.
So definitely contact IGeneX or MDL well in advance, get very specific instructions and biopsy container kits and all that - and then fight as we usually have to with our local hospitals to get them to cooperate.
My hospital pathology lab actually was cooperative, it just turned out I gave them instructions too late.
In terms of the gallbladder, my sister-in-law had hers out a few months ago. She is not a Lymie (although I wonder) but has fibromyalgia. She had to be a little careful with her diet for a few weeks, but every time I talk to her these days she's eating just about anything - fatty, spicy, caffeine, you name it.
Good luck! Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
An amazonian herb renowned for breaking up kidney and gallstones, as well as tonifying the liver and gallbladder is Chanca Piedra.
I get mine from Raintree -- a ecologically-minded amazonian herb harvester.
You might look into lecithin and dandelion too for liver/gallbladder tonics. See liverdoctor.com
Posts: 211 | From NC | Registered: Dec 2005
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posted
An amazonian herb renowned for breaking up kidney and gallstones, as well as tonifying the liver and gallbladder is Chanca Piedra.
I get mine from Raintree -- a ecologically-minded amazonian herb harvester.
You might look into lecithin and dandelion too for liver/gallbladder tonics. See liverdoctor.com
Posts: 211 | From NC | Registered: Dec 2005
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Jill E.
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Member # 9121
posted
Hi again, Trails,
Just wanted to second your caution about doing flushes. I won't do them either, and I don't have GB disease.
A book I have by Michael Murray and Joseph Pizzorno, both whom I consider among the best naturopaths out there, states they do not believe in the flushes. They say that the olive oil, lemon, etc. used in the flushes combines with the minerals in the GI tract and creates things that people think are gallstones but arent.
And it says if you do have even a tiny stone, a flush can cause it to lodge in the bile duct and then you have to undergo emergency surgery.
I've been doing all kinds of alternative medicine for more than 20 years, have had many practitioners try to talk me into flushes, I know many people swear by them, but I won't do them - at least not now. And with your stones, it would be far too dangerous!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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I had my GB removed back in 1994 (after rocephin).
Yes you can eat spicey foods afterward.
Posts: 374 | From NJ | Registered: Aug 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
you guys are so great and you are making me feel better and better about saying goodbye to my cute little green buddy!
I have done biopsies thru MDL --this summer when I had my ovary out I got a biopsy sent to MDL---no Bb in there even though the thing was OUTRAGEOUSLY diseased with endo and bloody cysts.
I am so hoping to win the PCR lottery some day.
I am now leaning towards a goodbye party. anyone want to add their 2 cents to make me change my mind?
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Trails you have been through so much. I hope this is the last surgery you need.
Before rocephin - no problems. After rocephin - stones and lots of attacks.
I had mine out in 2003. They did mine laproscopically (sp?). Before they did it they said if for some reason they couldn't do it laproscopically they were going to have to make an incision 8 inches across my stomach.
That seems a bit crazy to me cuz the gallbladder is small and my waist is about 26 inches so a cut that size would practically go across the whole front of me. They said they would put me on a morphine pump if I had it done this way so I figure it must be pretty painful.
Fortunately they did it laproscopically and it wasnt that bad.
I can eat whatever I want - spicy and fat. For me it was good bye and good riddance.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
thanks azure!
can you do rocephin WITHOUT a gallbladder? I am still planning on getting more of that good stuff in the future.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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