UPDATE MAY 2015: Please note that Jake is no longer taking any of these supplements, because we ended up getting a special type of water machine and after he drank this water, his acid reflux seemed to disappear. I am not saying everyone needs to do this, but I just want to let you know this is happened after he drank it. The water also seems to be helping him to reduce scar tissue (if you request more information I can explain why I believe this is so). If you want to learn more about the water he is drinking, just CLICK HERE.
I only recently learned that it can be dangerous (for just about anyone, with cirrhosis or not) to take Proton Pump Inhibotors (acid reducers) like Prilosec, Omeprazole, Nexium, Pantoprazole, etc..for more than six weeks (even the FDA warns against this).
UPDATE 8/22/16: I just saw a commercial showing that LAWSUITS are popping up, for people suing pharmaceutical companies that make PPI's. You can see the post I did about that, HERE.
It's amazing how few people are aware of the dangerous side effects of PPIs... even the HEAD NURSE at the DEPARTMENT OF LIVER DISEASE, where Jake has been seen for the last year, (considered to be one of the best in the country), HAD NEVER HEARD OF THIS (and they regularly prescribe PPI's for their cirrhosis patients... often for YEARS... which is ironic because long term use of PPI's is known to cause SCARRING OF THE LIVER - in addition to a lot of other problems listed on this page). So I'm trying to help spread the word.
PLEASE NOTE: You need to understand that doctors give PPIs to patients because they are a quick and easy way to prevent esophageal and gastric bleeding, even though they can kill you in the long run. Because my husband was trying to reverse cirrhosis, he weaned himself off these, but you need to understand why they are being given to you (it is written on this page but I need to say this a few times so you understand this very clearly). They are meant to stop esophageal bleeding and gastric bleeding, and this is a common way people can die from cirrhosis (but doctors usually don't explain this). My first recommendation is always to look up every medication your loved one is taking.
If you are designating yourself as a caretaker, you must be aware of all medications, their side effects, and why they're being given, then make your decisions carefully, as to whether or not you want to be on them. If you're going to get off any medications, you should wean yourself gradually. My husband weaned himself off PPIs gradually, without much prompting from me. (he cut his pills into quarters and reduced them slowly with a pill cutter).
It's up to you, what you decide to do. I just have to warn you about this because it's likely no doctor will ever tell you about their long term side effects.I have not spoken with one person who could confirm that their doctors explained to them why they were given PPIs, nor did they explain that they can cause scarring of the liver, osteoporosis, alzheimer's, low iron and more.
Who's job is it, to explain these medications?
After I found out PPIs cause scarring of the liver, I was very angry with the doctors who didn't tell me, and not too happy with the pharmaceutical industry, either. And how come the pharmacist didn't make it super clear that this stuff caused scarring of the liver??? I don't know (though I have some easy guesses).
Only in retrospect, have I come to fully understand, that it was MY JOB, as Jake's caretaker, to be on top of this stuff (when Jake was unable to). You need to use critical thinking in life or death situations. As much as I wanted to blame the doctors, I knew that ultimately me and Jake were the ones who put ourselves in this position, it was our fault for going to bars after doctors told him not to have any beer, and it was our responsibility to look everything up. I mean, really, who's job is it, more than ours???
You really have to do a lot of your own research. You have to always ask yourself, why is this happening? Why are these pills being prescribed? Do I really need them? Could there be anything better out there? What are the reasons (ALL OF THEM) why this person prescribed this for me? Is it possible to reduce the amount? What would be a safe amount (if any) to reduce these meds, by? How long will it take for me to get off them? We had to go through a lot of trial and error to find the right things that worked, for Jake, and if you are a caretaker or someone who has cirrhosis, you're going to have to do the same for yourself.
PPIs will also reduce acid reflux which many people with cirrhosis do have, but I want you to know of the side effects, because not one doctor told us, nor did they tell any one of the people whom I've talked to.
"8 Drugs Doctors Wouldn't Take."
From THIS PAGE:
Currently, the PPI class is the third highest selling drug category in the United States, accounting for more than 113 million prescriptions annually with sales exceeding $14 billion.4 Patients often continue therapy for extended durations without an end point. Studies have found that up to 70 percent of PPI use is for unapproved indications.4
If this is news to you as well, please pay it forward and share this info with someone you know, who may be taking antacids on a regular basis. My husband's doctor had him on Pantoprazole for over nine months, which is very unhealthy for someone with cirrhosis! PPIs are known to cause SCAR TISSUE on the liver, osteoporosis, bacterial infections, and very low iron. He had to be on the PPIs an additional few months (so, almost a year total) because you can't just stop cold turkey or the symptoms will get WORSE! (So he tapered down).
UPDATE 2/16/16: A friend just sent me an NPR article showing that Proton Pump Inhibitors are also shown to cause Dementia and Alzheimers. Lovely! You can see it by CLICKING HERE.
Why doctors give people PPIs
Yes, I realize the doctors were trying to keep my husband's stomach from bleeding, but I firmly believe that his risk for bleeding was much lower than it would be for the average person, due to the fact that he drank aloe vera juice (you can see why if you read the rest of this post and watch the videos). Please note, your condition (or your loved ones' condition) could be WAY worse than my husband's, so please do not assume that just drinking aloe vera juice is definitely going to fix the problem and make a person better if you're in late stage cirrhosis. In my opinion, if you are in stage 4, you should get a water machine, period. I am not making medical claims, I am telling you my opinion is that it will help you the most simply because it will remove toxins from your body faster than anything else can, and those toxins are causing far more problems than you may realize.
His MELD score was at a 9 as of January 2014 (down from a 28 when he was in the hospital a month earlier). It's an 8 now. His esophagus looked really good when he had an Endoscopy done in the hospital (he had a MELD score of 17, the day he had his esophagus examined). I personally attribute this to the fact that he was drinking Aloe vera juice. He just had another Endoscopy done in November and it looked just like it did 11 months ago: REALLY GOOD. And he was drinking Aloe Vera Juice!!!
(UPDATE on 11/14/14... we were just told Jake's Ferritin level is SO LOW that the doctor wants him to have a colonoscopy. Although his Fertitin (iron) was 388 when he was sick in the hospital in January, it is now just a 25. I looked up PPI's and SURE ENOUGH.... PPI's inhibit the body's ability to absorb iron!!!!) It is true that he is not eating as much red meat as he used to, but he still eats white meat regularly (he will typically have a turkey sandwich for lunch or dinner).
Long-term use of PPIs and effects on Iron absorption
PPI's make your body stop producing acid. They do nothing to stop acid from leaking. When your body doesn't produce acid, your body stops absorbing calcium, magnesium, iron, and other vitamins like B12, making you more likely to develop osteoporosis, broken bones and mental confusion.
I'm dedicating the first half of this post to writing about the dangers of antacids... if you scroll down you can see more stuff about the aloe vera (which is shown to greatly help people, including my husband, with acid reflux, ulcer and liver problems, and ALOE VERA JUICE has NO KNOWN SIDE EFFECTS). Later in this post you can find a link to read reviews in which people raved about how Aloe vera juice helped them with their acid reflux.
Note: November 2014: I just learned that Bragg Apple Cider Vinegar can greatly help acid reflux. Jake's sister told me that she was on PPI's for several years, but she weaned herself off it by taking apple cider vinegar every day, and her condition has become manageable. At Thanksgiving dinner, she and Jake had a discussion about their acid reflux, and apparently Jake's acid reflux isn't necessarily related to his Cirrhosis, it could be in the family. Jake's sister doesn't have cirrhosis, but she has suffered with acid reflux for a long time. They both commisserated over how the food just kinds of sits there in your esophagus sometimes. Jake's acid reflux is not 100 percent healed, but it is WAY better, since he is taking apple cider vinegar & aloe juice, than it would be if he was taking nothing. I am just so glad he is off those damn proton pump inhibitors!!
Also, Jake sometimes doesn't take his probiotics regularly. I really believe that when he does the 3 things together, regularly: probiotics, apple cider vinegar, and aloe... his condition will be a lot better.
This is the exact brand of probiotics he uses (click on the link to see it on Amazon). He would typically take one or two capsules a day.
Nature's Bounty Advanced Probiotic 10 120 Capsules
UPDATE JANUARY 2016: I wanted to share part of the following message I got from someone who contacted me via this blog:
I just want to let you know about (my husband's) experience with the Pantoprazole. His platelet count went down to 9,000!!! He had seizures 3 months after this. I just want you to know that these doctors are careless with these medications and it almost killed him and ME after his first seizure EVER!!! I was so scared and seeing him have a seizure was such a dramatic and heart breaking moment. It is not like I had not already almost lost him after the liver failure.
True we can't say for sure if this was definitely 100% for sure caused by the Pantoprazole (when you have cirrhosis, so many things can just get out of whack), but as I just said to my hubby, reading PPI's: All the more reason I don't trust the stuff.
There are some really good videos (you'll see them if you scroll down), that show HOW WELL ALOE WORKS. PLEASE BE SURE TO WATCH THEM. Before I watched these videos, I knew aloe juice was good for you because I'd used it myself over 20 years ago when I was having some breathing issues while working in a really stressful environment. A co-worker told me to drink it and I was surprised by how well it worked. But thanks to YouTube, you can see even more great testimonials! Until I saw those videos, I had no idea how much it helps people with liver disease. It even seems to help people with liver cancer!!!
The only kind he will drink (George's Aloe Vera Juice) is a bit expensive (though it's SUPER CHEAP compared to the cost of the LIVER FAILURE you could develop by using antacids!!!!!).
You can see my previous posts (or should I say RANTS) about Cirrhosis and PPI's, by clicking HERE and HERE.
It's frightening to think of how many doctors continue to prescribe, for their patients with SEVERE LIVER DISEASE and Cirrhosis, antacid drugs that are HARMFUL TO THE LIVER! It's like a vicious cycle. When you have cirrhosis, your stomach hurts, so the doctors give you PPI's / antacids (and insist they are also doing this because you are at a risk for esophageal bleeding, or stomach ulcers/bleeding) . But these doctors (like Jake's) will probably fail to tell you that these antacids can make your liver disease WORSE! (Scroll down and see all the stuff I've highlighted in Yellow). One page on the LiveStrong website says: "long-term use of omeprazole may completely destroy the liver by causing scarring of liver tissue."
Even the FDA will tell you, ANTACIDS CAN BE DANGEROUS. And that's for the average person.... it's even worse for someone with Cirrhosis!!!
From the FDA Website:
The FDA states that the following PPI's / Antacids can cause bone fractures (among other things).
• Prilosec (Omeprazole)
• Protonix (Pantoprazole) (this is the one Jake took)
The over-the-counter PPIs are
• Prilosec OTC
• Zegerid OTC
• Prevacid 24HR
You can see the following PDF on the FDA Website:
I thought it might be worth mention what a PPI is, since I had to look this up myself.
This is a really informative video about the dangers of Proton Pump Inhibitors.
And this is another one by Dr. Bruce Wylde that explains in detail why PPIs are bad, and how Aloe Vera Juice can help.
I highly recommend watching this whole video, but if you want to scroll to see the part where he mentions PPI's, at the 4:42 mark, Dr. Glidden says: "There are only 2 prescription medications which I unequivocally across the board recommend all of my patients to stop taking immediately... just flush them down the toilet: Statin drugs, and any type of Proton Pump Inhibitor or heartburn medicine."
(Just a note from Ellie, please don't really flush medications down the toilet... I know Dr. Glidden was just trying to emphasize how bad they are, but in my opinion we have waay too many pharmaceuticals in our water systems already so putting them in the trash is a better way to dispose of them).
You can find the following information on THIS PAGE.
Proton pump inhibitors
How PPIs help you
- Relieve symptoms of acid reflux, or gastroesophageal reflux disease (GERD). This is a condition in which food or liquid moves up from the stomach to the esophagus (the tube from the mouth to the stomach).
- Treat a peptic or stomach ulcer.
- Treat damage to the lower esophagus caused by acid reflux.
Types of PPIs
- Omeprazole (Prilosec), also available over-the-counter (without a prescription)
- Esomeprazole (Nexium)
- Lansoprazole (Prevacid)
- Rabeprazole (AcipHex)
- Pantoprazole (Protonix)
- Dexlansoprazole (Kapidex)
Omeprazole may damage the liver in several ways.
I can pretty much guarantee that your doctor will NEVER, EVER, EVER tell you to "drink aloe juice"... which is VERY effective for acid reflux, and HAS NO KNOWN SIDE EFFECTS!!!! When Jake was in the hospital with a MELD score of 17 (it started out at 28 and went to 17 by his last day in the hospital), his esophagus actually looked GREAT, and I truly think this is because he was drinking George's Aloe Vera Juice on a regular basis. It's the only kind he will drink because it has no taste (yet it has rave reviews on Amazon because of its health benefits). Jake's MELD score is now an 8. You can see reviews from people who rave about it, for Acid Reflux (among other things), by clicking HERE.
According to the folks at Aloe Cure, Aloe Vera juice can help you with all of the following things (which just happen to be issues for people with cirrhosis!!!) It can:
Relieve Heartburn and acid Reflux
Help you Sleep Better
Reduce Belching. Bloating and Gas
Give you Healthier Skin, Hair and Nails
Improves Vitamin Absorption
It also helps maintain normal blood sugar levels. Jake's doctors were surprised to see how high his blood sugar levels were. Well, guess what.... Pantoprazole can cause elevated blood glucose!!! You can read a little more about that on this page.
Dr. Liza Leal (author of the book Live Well With Chronic Pain), is a big fan of Aloe Vera juice. She says:
Aloe "promotes a healthy, balanced GI system. It naturally buffers the acidity in our stomachs."
"It helps naturally balance the stomach's Ph"
"It neutralizes excess acid in the stomach, naturally and safely, decreasing the acidity, and preventing that burning feeling so many complain of."
Here are some more videos (and thanks also to YouTube for being a great place to find this info).
You can try Aloe Cure "risk free" (according to this video) by calling the toll free number on the video. I'm guessing they probably will want you to sign up for some kind of auto-ship deal, so if you'd prefer to just get one bottle, this the Amazon link for Aloe Cure.
I don't know what Aloe Cure tastes like, but I can tell you that the only one Jake will drink is George's, because he's very picky about the taste, and the taste of "normal" aloe would make him gag (it practically makes me gag, and I have the stomach of a goat). Here's the Amazon link for George's Aloe Vera Juice. People rave about it... and it may actually cost a bit less than Aloe Cure.
These are the videos I saw that made me buy the Aloe juice for Jake in the first place. Please watch them. They're pretty amazing.
You can read more about how Aloe can help with tooth decay and gum disease, by CLICKING HERE.
One last possible benefit I want to mention is that Aloe Vera juice could potentially help you if you have an Umbilical Hernia. At some point, I plan to do a post on Umbilical Hernias, because Jake has one and is planning to get it fixed.
Again... I will post an update on how Jake is doing, weaning himself off the Omeprazole.
Please share this information with anyone you know, who has acid reflux, cirrhosis, or any other condition that could be helped by aloe vera juice. Thanks!