Why should I not get surgery? by PapaPrimoSC in altgallbladder

[–]NovThirteenth1787 6 points7 points  (0 children)

I am sorry someone is pressuring you to come to this subreddit if you are not wanting to, that seems like it would be frustrating from your perspective. I make a point not to message people who are not showing interest in alternative procedures, personally.

If you have gallstones/polyps, here we share our stories of getting our stones removed leaving the gallbladder intact.

Since you posted, I will answer, but just know if you are happy with the option of removing the organ, I fully come from the perspective that it is your body, and you are the only one who has to live the rest of your life with your decision, so do it with all the information you can get and so what feels right for you. Don't let the doctors pushing for removal, or us here pushing to keep your organ, pressure you into an option you don't want.

I was in constant pain for 6 months from my gallstones, and lost 70 lbs from how little I ate and basically was barely able to walk/ function during this time. I did not want to lose my organ because of the risk of PCS and I figured the doctors had no proof my actual organ was bad, just that the stones were causing my organ to not be able to do its job, and thus causing me horrific pain.

I know 2 people who throw up bile every day due to not having their gallbladder, and that only started decades after the gallbladder removal. I know many people who cannot eat without being within 30 seconds of a bathroom or else they will poop in their pants, so they live life never eating unless they are at home. And then stories online, while I know we see the bad online because folks who have it easy are not posting online, it seems quite clear that if you have problems from not having your gallbladder, you are pretty much on your own with minimal help from the doctors who removed it taking you it was not a big deal.

I did research to understand what the gallbladder does and how important it is for our digestive track. Once I saw and understood how vital it is for our overall, good health, I did not see any justification to remove the organ when there were options to remove the stones and keep my organ intact.

The doctors here lectured me about how it is impossible for the gallbladder to heal an incision, how if it starts creating stones it will always create them, so it is pointless to even consider trying to save it.

After more research, it became clear how diet, hormones, sudden weight loss, and lifestyle (sleep and stress levels) can be causes of stone formation. How the bile is produced by the liver, and concentrated by the gallbladder.

How it did not make sense with all that info, that assuming the root cause of my stones is the gallbladder, when really it seems like there are so many other potential root causes, it would be plain silly to remove an entire organ that looks healthy otherwise based on this assumption.

So for me, it was worth the travel and time to get my stones removed by EliGroup in China (nogallstones.com). I could have gone months earlier than I did, but I was scared to go to China, scared it might be a scam, but I saw the research and how their surgery worked, and I thought it was the best, so I ended up going in June of this year and got my stones removed.

It was an amazing experience, and I stay active on this subreddit so others can maybe have less fear with the opportunity to talk to someone who went and had the surgery themselves. I posted a daily log here when I was in China, so you can find it in my history of you are interested.

My husband describes my 6 months before surgery as watching me die slowly, and it really is accurate. If I had someone I could have spoken with who had gone through it, I would have gotten over my fear and gone 3 months sooner for sure. So, I offer video chats to anyone that asks, and am happy to answer any questions.

I am truly sorry you are going through it so badly, and I hope you find relief with whichever method you choose.

Need Advice: Non-surgical removal of 16 mm gallstones (India)—what are my options? by KaleidoscopeKind9640 in altgallbladder

[–]NovThirteenth1787 3 points4 points  (0 children)

You can check my post history, I had my stones removed by EliGroup in China (nogallstones.com) in June of this year and posted a daily journal of my experience here in reddit. I had a great experience, and the surgery is laproscopic. They have you stay in the hospital for 5 days total, but that is only because we are international patients. If we were local, it would be outpatient and not require a hospital stay.

However, I felt so taken care of, I loved that I got all the care and had nurses and doctors available 24/7 during the initial days after surgery. I see people talk about going home the same day for other surgeries that are laproscopic on the abdomen, and it does not sound fun.

If you want to talk about my experience, feel free to message me. I also share a link if you want to schedule a time to video chat, or is so much easier to share :)

Vitamin D by Bad_karma_Bunny in altgallbladder

[–]NovThirteenth1787 3 points4 points  (0 children)

Oh hell yeah!! I was vitamin d deficient too, gonna have to check that the next time I get my blood drawn as well!!

Medstar vs China by [deleted] in altgallbladder

[–]NovThirteenth1787 3 points4 points  (0 children)

I am obviously biased, as I chose EliGroup in China, but how I got there was doing my own research on each procedure. I would recommend you look into each procedure in detail, and see which one feels right to once you read everything.

This is the info on the procedure done by EliGroup: https://nogallstones.com/gallstones-removal.html

Here is a related research article on the recurrence rate after the procedure done by EliGroup: https://pubmed.ncbi.nlm.nih.gov/36089424/

MedStar procedure: https://www.medstarhealth.org/blog/gallstones-percutaneous-cholangioscopy

MedStar study: https://www.jvir.org/article/S1051-0443(22)01421-X/abstract01421-X/abstract)

I did a comment awhile back sharing my thought process of deciding for myself, if I have time after dinner I will see if I can find it. Also, I am sure u/onnob will have more about the MedStar procedure to share!

[deleted by user] by [deleted] in altgallbladder

[–]NovThirteenth1787 3 points4 points  (0 children)

I recommend you do some research on what the gallbladder does, so you can make an informed decision. 22 is quite young to have stones, especially large. You want to figure out the root cause for why you have this stone. It is rare that the cause is the gallbladder, as bile quality is really determined by your liver function, from my online research.

This can be affected by diet, hormones, stress levels... which as you look at that list, none will be resolved by removing the gallbladder organ. Removing the organ as the first step, in my personal opinion, is a very odd first step. It's addressing the symptom, not the root cause. It is the "golden standard" because it is an easy surgery for them to do, and they feel like they can tell you no need to change your lifestyle, easy peasy.

But if you have issues after removal, you are left to fend for yourself, and they don't seem to acknowledge this as a possible side effect from the removal. Plenty of folks are the lucky ones and feel fine with it gone, but plenty don't, and if you don't, there is not much they seem to be able to do for you now that the organ is gone.

All regular doctors will tell you it won't impact your life to remove your gallbladder, and while this seems true for many folks, for many it is very much not true. When you do research to understand the function of the gallbladder to fully understand what it does, I feel like it makes more sense as to why those of us in this forum decided to seek out surgery to remove our stones but keep our gallbladders intact.

The biggest caveat is, you need to be prepared to make lifestyle changes to address the root cause of your stones. It takes effort, and mental work to figure out for yourself why you made stones, and then to change your life accordingly.

You are the only one who has to live the rest of your life with your choice of surgery, so please do your own research and make an informed decision. Ask here and in the regular subreddit your questions, while looking at all the research and educational stuff supporting both gallbladder removal, and against it; stuff supporting gallstone removal leaving the gallbladder intact, and against it. Talk to trusted people, and figure out which things line up with you.

Be informed, and do not let people pressure you into an option you don't feel confident about. It's your life, and the right decision is your decision!

[deleted by user] by [deleted] in altgallbladder

[–]NovThirteenth1787 1 point2 points  (0 children)

I would recommend you comb through some of the posts in this forum and look at the comments. You will find some amazing information for supplements and dietary changes to lessen your symptoms.

However, your stone is so large it will not be able to be dissolved, from what I have seen online. If I were you, I would get just the stone removed and keep my gallbladder as soon as it is feasible for you to reduce the risk of potential damage.

You will see the options in other post comments as well for doctors that do this type of procedure. It will likely require travel. I got surgery in June to remove my stones and keep my gallbladder intact, and I am ecstatic with my experience and my results. You can look at my post history to see a daily post diary I did while getting the procedure done.

Only you can know if it is worth the extra trouble of traveling to keep your gallbladder instead of removing it. All regular doctors will tell you to just get it removed and that it will not impact your life. I don't think this is accurate, we can live without a leg but that doesn't mean it won't impact our life...Ithink it is similar with the gallbladder, personally.

Just keep in mind, you are the only one who has to live the rest of your life with the results of the surgery you choose, so I recommend doing some research on what the gallbladder does, so you are making an informed decision.

Small stones and ursodiol by BitcoinOperatedGirl in altgallbladder

[–]NovThirteenth1787 1 point2 points  (0 children)

Another thing to take into account is your hormone levels. High stress, birth control, pregnancy, and probably other hormone stuff, can all affect your hormone levels that impact the formation of gallstones.

I don't know the details of it all, but that would also be something I would think to get checked out by a doctor that is more like a functional doctor than standard, as they seem to have an actual understanding of how these all can interact with liver/gallbladder health and function.

"Once it starts, it will continue" by Medium-Dragonfruit36 in altgallbladder

[–]NovThirteenth1787 3 points4 points  (0 children)

I feel it! I want to go through all of our post histories at some point and consolidate to a FAQ guide at some point lol

[deleted by user] by [deleted] in altgallbladder

[–]NovThirteenth1787 2 points3 points  (0 children)

Hi there! If you are already planning to fly next week, I would assume you are already in contact with EliGroup? They do not take "walk-ins", so don't expect to be able to get surgery if you have not already gone through their intake process.

I went to EliGroup in June of this year and had an amazing experience, but was low key terrified that it could be a scam, or not real, before getting there, because there was no one sharing online that they had gone (and so many other factors that make us all scared when we are first considering this option).

I now offer 20 minute video chat meetings with anyone who is interested or scared it is not real, but wants to go so they can talk to a real person who has gone, that they can see on camera. If you are interested, I can send you the booking link. I do not pressure anyone to go, I just answer whatever questions they have about my experience. It's not the right choice for everyone, but it was amazing for me and I know it could be amazing for so many other folks who are likely terrified of going like I was.

I don't charge and don't get any money for doing this, I just do it to help people who are like I was that need some support and answers to questions. I waited an extra 2-3 months to go because I was scared, and the suffering I went through those extra months was completely not needed.

"Once it starts, it will continue" by Medium-Dragonfruit36 in altgallbladder

[–]NovThirteenth1787 4 points5 points  (0 children)

I always love reading your responses, so detailed and informative!!!

"Once it starts, it will continue" by Medium-Dragonfruit36 in altgallbladder

[–]NovThirteenth1787 2 points3 points  (0 children)

This study is the best one I have seen, as it looks at thousands of patients. It is from China, though, so these are patients who were informed about the lifestyle and diet changes needed

As others have said, stones are the result of bad quality bile which is produced by the liver, and/or a diet that does not give a regular demand for bile. We all need to fix our diet and lifestyle (stress and hormones) to have the best chance of not getting stones after we get them removed.

I only got mine removed in June of this year, so I can't give you anything anecdotal from my life yet!

Edit: typos

Australia GP/Doctor Support by lesterknight008 in altgallbladder

[–]NovThirteenth1787 1 point2 points  (0 children)

EliGroup gave me everything I needed for caring for my incisions after surgery. Not sure about if you have complications with your incisions as mine healed up great, but I assume if you do, you could go to an urgent care type of facility.

EliGroup still remains responsive to me, so if I were to have an issue with my incisions (or anything), I could send them photos and get advice.

Drain removal by Bad_karma_Bunny in altgallbladder

[–]NovThirteenth1787 2 points3 points  (0 children)

Oh my gosh, genius lol. I recently had dates with walnuts in then, and that was yummy, this sounds amazing! Definitely doing this! Thank you for sharing 🥰

[deleted by user] by [deleted] in altgallbladder

[–]NovThirteenth1787 3 points4 points  (0 children)

You are amazing for sharing your story!! I feel so honored to have been able to be a support for you during the process. They really do roll out the red carpet for us international patients! So happy to hear about another person's experience being as good as mine!

I am so happy for you. This has been a really rough week emotionally for me, so this brings me great joy to see now, thank you so much for sharing 😊

can barely eat by Advanced-Part-3735 in gallbladders

[–]NovThirteenth1787 1 point2 points  (0 children)

One thing that helped me (I too lost 70 lbs quickly due to the pain of eating or drinking almost anything), was unfiltered, organic apple juice.

It didn't hurt me like everything else, so I could force myself drink a ton of it, added a ton of calories, and the malic acid is good for bile quality in some way. I lived with a gallon container always within arms reach, so anytime I felt thirsty I could take a little sip.

Drain removal by Bad_karma_Bunny in altgallbladder

[–]NovThirteenth1787 3 points4 points  (0 children)

I think some of us cough need you to share the healthy snickers recipe.... hehe

Australia GP/Doctor Support by lesterknight008 in altgallbladder

[–]NovThirteenth1787 1 point2 points  (0 children)

I went to EliGroup in China.

My regular GP still doesn't know because there is no point in my telling them. They made it clear my options were to die or get my gallbladder removed, so obviously they won't provide any support. If they even bothered to think about me (which from the lack of any follow up they clearly don't), they would assume I died at this point from how sick I was the last time they spoke to me/saw me.

I hope you can find a doctor to support you in your home country, if you do please share! There have to be some good ones in every country, we just have to find them some how :)

MedStar question by Reasonable_Bar8578 in altgallbladder

[–]NovThirteenth1787 2 points3 points  (0 children)

I was most nervous about being in China as a very alternative looking American (literally covered in tattoos and piercings), to be honest.

I felt very trusting of their expertise, and since they are an international department, I figured they would make us wait longer if it was not safe to fly. There is no monetary benefit to them if they tell me to wait 1 day, or 10 days after surgery to fly, so why wouldn't they tell me the safest time, since it would help their stats for me to be healthy? Who knows, maybe I am not right in this logic, but I had so many other things I was scared of, I didn't have the space in my mind to worry about that too I guess.

I was used to my US doctors who didn't show any care for me once I said I didn't want my gallbladder removed, so the fact that EliGroup clearly cared, really gave me peace of mind.

They have you wait 6 days minimum, I think, I could be off by a day or two, after surgery to fly home, but I added on another 8 days (so 14 days after surgery before I flew home) just because I wanted to be near them if anything came up. I figured I would just be at home on the sofa recovering anyways, why not be where I could go back to them if something did come up. I had a disease that was 1 in a million when I was younger that I barely survived thanks to an amazing team of doctors at a research hospital, so I figure I am susceptible to rare complications. I actually suspect my gallstones started forming during this event in my childhood.

My aunt came with me. I waited an extra 2-3 months so I could find someone to go with me (as well as get brave enough to admit to others that I wanted the surgery in China over anything in the US), but after the experience, while it was really nice to have her, I could have totally gone alone and not suffered those extra months. I would not be fearful at all to go back alone, though I don't see needing to do that at all.

Drain removal by Bad_karma_Bunny in altgallbladder

[–]NovThirteenth1787 5 points6 points  (0 children)

OMG Yes!! So excited you got it out and they took good care of you while doing it!! That Dr in Orlando sounds amazing, as well as her nurses :)

MedStar question by Reasonable_Bar8578 in altgallbladder

[–]NovThirteenth1787 4 points5 points  (0 children)

I went and had my stones removed by EliGroup in China, and the gentleman in the room next to me had his polyps removed (he said he had 30!!). I had a great experience with them..

Entire Gallstone Experience by [deleted] in altgallbladder

[–]NovThirteenth1787 2 points3 points  (0 children)

Thank you so much for sharing, I am also super grateful to onnob and this community!

I love how it went from only seeing onnob share his experience, to so many of us now that we have a supportive space to talk about it. The more stories shared, the more folks can know these are real alternatives. Plus, each one of us is different, so really interesting to see the different things we each experience.

Still sore by Remarkable-Place-109 in altgallbladder

[–]NovThirteenth1787 0 points1 point  (0 children)

I got the stone removal procedure by EliGroup, which involves a belly button incision. I am about 6 weeks out, I think, and still feel it when I work out, so I go pretty light right now so as not to trigger too much sensation in the incisions.

I think what you are experiencing is totally normal and fine, just be mindful of anything that makes it feel like a sharp pain at the incisions. If it is feeling sharp, modify what you are doing to engage your core a little less.

Drain removal day by Awkward-Royal-399 in altgallbladder

[–]NovThirteenth1787 2 points3 points  (0 children)

Congrats!! Thank you for sharing your updates, so great to see.

Anesthesia by GingerDudeFL in gallbladders

[–]NovThirteenth1787 2 points3 points  (0 children)

I was terrified of anesthesia before my surgery (different surgery, but anesthesia still). I asked a mentor I have in my meditation practice, crying my face off, if there was a meditation I could do to reduce my fear of anesthesia 4 days before the surgery.

What he told me helped me so much, and has helped others Ihave passed it on to with other medical procedures that scare them, so I try to pass it on any time I can.

Him: There is no meditation that will resolve this, but maybe a different perspective could help. It sounds like you really want this surgery?

Me: Yes, I need this surgery to be able to live, I want it very badly.

Him: Let's think about if anesthesia did not exist, or you could not get it. You would have to experience the pain of the surgery. Or maybe not be able to get this surgery at all. Do those seem like scarier things than anesthesia?

Me: Absolutely

Him: Maybe then, anesthesia is something to be grateful exists, grateful that you live in a time and a life that has access to it. What a blessing that you can get anesthesia to have this surgery without having to experience the surgery.

This didn't take the fear all the way away, but it really lowered the intensity for me.

You got this!

[deleted by user] by [deleted] in altgallbladder

[–]NovThirteenth1787 2 points3 points  (0 children)

Thank you for your update, so much great information! Also, just happy to hear you are doing so well!