I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: kitkatz on February 16, 2014, 02:11:34 AM

Title: Metamucil
Post by: kitkatz on February 16, 2014, 02:11:34 AM
Does anyone know if I can take Metamucil safely as a dialysis patient?
Title: Re: Metamucil
Post by: Zach on February 16, 2014, 04:37:33 AM
Yes, it is generally safe for us to use.

After my "takedown" I was going many times a day.
My surgeon suggested Metamucil Original Coarse (no flavor, sweetened w/sugar) twice a day to "bulk-up."
It worked!

Good luck, kitkatz!
 :beer1;
Title: Re: Metamucil
Post by: frankswife on February 16, 2014, 08:05:11 AM
Franks neph told him not to use metamucil. Something about the psyllium in it. He uses miralax. Its probably something related to his specific situation though.
Title: Re: Metamucil
Post by: obsidianom on February 16, 2014, 08:12:54 AM
My wife uses Miralax also per nephrologist.
Metamucil can effect mineral and other protein and food absobtion in the gut so it could mess up a lot of things , including potassium, sodium, calcium etc.  I would check with your own nephrologist but my guess is its not a good idea.
Title: Re: Metamucil
Post by: Rerun on February 16, 2014, 09:51:55 AM
Miralax pulls fluid into the bowel.... Don't think you want that right now.  I'd go with Metamucil.
Title: Re: Metamucil
Post by: Zach on February 16, 2014, 12:20:16 PM

Miralax pulls fluid into the bowel.... Don't think you want that right now.  I'd go with Metamucil.


Rerun, you are spot on!
 :-*

I take the Metamucil Original Coarse 2 hours before meals and meds (6am and 4pm).
My PO4, K, Ca, and Albumin are all fine.
And now I only have to "go" ~2 times a day.  What a relief!

But yes, you should always confer with your Nephrologist.

 8)
Title: Re: Metamucil
Post by: obsidianom on February 16, 2014, 01:41:44 PM
This is a case report of what metamucil can do in some cases. While it is generally safe, it is not perfect.
ALWAYS CHECK WITH YOUR OWN DOCTOR AND DONT TAKE MEDICAL ADVICE FROM PEOPLE ON LINE .

The patient was admitted with abdominal pain, weakness, fatigue and nausea developed 3-4 days after taking psyllium, a bulking agent, prescribed by a surgeon to diagnose anal fissure. Detailed medical history, physical examinations, laboratory and imaging examinations did not approve any other cause of adrenal crisis. Psyllium may interfere with gastrointestinal absorption of prednisolone and/or fludrocortisone and trigger acute adrenal crisis in patients .
Title: Re: Metamucil
Post by: monrein on February 16, 2014, 02:39:13 PM
Metamucil is basically psyllium and my understanding is that a lot of water is necessary when taking it.  For dialysis patients with fluid restrictions this is problematic. 

What does your neph say? How about Senakot, although that may just be temporary rather than ongoing.
Title: Re: Metamucil
Post by: Zach on February 16, 2014, 02:49:50 PM
That is correct, if you are a patient with Adrenal insufficiency and treated with fludrocortisone and prednisolone you should not use Metamucil.

http://www.ncbi.nlm.nih.gov/pubmed/22071646

Acta Med Iran. 2011;49(10):688-9.
A bulking agent may lead to adrenal insufficiency crisis: a case report.
Ahi S, Esmaeilzadeh M, Kayvanpour E, Sedaghat-Hamedani F, Samadanifard SH.
Author information

Abstract
Adrenal insufficiency is a life-threatening disorder which must be treated with glucocorticoid replacement and needs permanent dose adjustment during patient's different somatic situations. Insufficient glucocorticoid doses result in adrenal crisis and must be treated with intravenous hydrocortisone. The patient was known with Adrenal insufficiency and was treated optimally with fludrocortisone and prednisolone since seven years with no history of adrenal crisis. The patient was admitted with abdominal pain, weakness, fatigue and nausea developed 3-4 days after taking psyllium, a bulking agent, prescribed by a surgeon to diagnose anal fissure. Detailed medical history, physical examinations, laboratory and imaging examinations did not approve any other cause of adrenal crisis. Psyllium may interfere with gastrointestinal absorption of prednisolone and/or fludrocortisone and trigger acute adrenal crisis in patients with adrenal insufficiency.

More information:
http://www.naturalstandard.com/index-abstract.asp?create-abstract=psyllium.asp&title=Psyllium

Title: Re: Metamucil
Post by: Jean on February 17, 2014, 01:32:24 AM
Can't just take a stool softener??
Title: Re: Metamucil
Post by: obsidianom on February 17, 2014, 02:11:41 AM
That is correct, if you are a patient with Adrenal insufficiency and treated with fludrocortisone and prednisolone you should not use Metamucil.

http://www.ncbi.nlm.nih.gov/pubmed/22071646

Acta Med Iran. 2011;49(10):688-9.
A bulking agent may lead to adrenal insufficiency crisis: a case report.
Ahi S, Esmaeilzadeh M, Kayvanpour E, Sedaghat-Hamedani F, Samadanifard SH.
Author information

Abstract
Adrenal insufficiency is a life-threatening disorder which must be treated with glucocorticoid replacement and needs permanent dose adjustment during patient's different somatic situations. Insufficient glucocorticoid doses result in adrenal crisis and must be treated with intravenous hydrocortisone. The patient was known with Adrenal insufficiency and was treated optimally with fludrocortisone and prednisolone since seven years with no history of adrenal crisis. The patient was admitted with abdominal pain, weakness, fatigue and nausea developed 3-4 days after taking psyllium, a bulking agent, prescribed by a surgeon to diagnose anal fissure. Detailed medical history, physical examinations, laboratory and imaging examinations did not approve any other cause of adrenal crisis. Psyllium may interfere with gastrointestinal absorption of prednisolone and/or fludrocortisone and trigger acute adrenal crisis in patients with adrenal insufficiency.

More information:
http://www.naturalstandard.com/index-abstract.asp?create-abstract=psyllium.asp&title=Psyllium
There may be other meds metamucil effects absorbtion in patients. That is why I mentioned this one example. Even the surgeon didnt realize it here. The following is a write up on metamucil and its possible negative effects. These effects are potentially problematic for renal patients. Dont assume because any one person can use it sucessfully it is ok for anyone .

'Since Psyllium husk-containing products, such as Metamucil, are sometimes used as a source of dietary fiber, the intake of dietary fiber could hinder the absorption of vitamins, minerals, and proteins.[3] Dietary fiber helps the gastrointestinal tract absorb excess water and remove food wastes, but an excessively high intake of dietary fiber will also negatively affect the absorption process in the intestinal tract. Taking a fiber supplement can decrease the absorption of minerals by decreasing the transit time, lowering the concentration of minerals by accumulating more fecal matter, and can also cause the minerals to become trapped in the faeces, leaving the body without absorption. This could affect individuals who may not be meeting, or barely attaining, their body's mineral or nutrient needs. ' 
Title: Re: Metamucil
Post by: Zach on February 17, 2014, 07:31:19 AM
No medication is perfect.
That includes Renvela, which also can interfere with absorption of some vitamins and antibiotics.

In fact, I recommended taking Metamucil 2 hours before eating and taking meds for that reason.

"… but an excessively high intake of dietary fiber will also negatively affect the absorption process in the intestinal tract."
One rounded teaspoon, twice a day is not an excessively high intake.

But yes, individuals may in fact react differently to the same medication, so that is why one needs to tread carefully as well as consult their Nephrologist.

 8)
Title: Re: Metamucil
Post by: Rerun on February 17, 2014, 09:09:26 AM
Can't just take a stool softener??

It is too soft.... that is the problem.

Ob, Kitkatz is not STUPID!  She knows to check with her doctor.  She just asked a question and I'm not going to type a disclamer after each post.
Title: Re: Metamucil
Post by: obsidianom on February 17, 2014, 10:30:07 AM
No one is calling anyone stupid. The problem is the original question asked specific direct blanket advice on a med(OTC med) for dialysis patients. Is it safe?   That is a very dangerous question for anyone to answer unless you specifically know the patient and their meds and history. Even with all my medical training and experience I wouldnt answer that without knowing that patient personally and treating them. That is the danger of the internet. People give advice on specific issues without having all the facts. What is safe for one person may be lethal for others. Just look at what just happened to Nursy 66 and her husband. His rheumatologist gave him methotrexate while on dialysis. He should have checked with the nephrologist and avoided what is now a very serios condition that I ,in fact , warned her about. Even the surgeon that gave the patient with adrenal insufficiency metamucil erred by not checking with the endocrinologist.   Drugs often mix badly. What may be safe for you one day may not be the next day due to a new med you are on or other changes. Dont assume anything.  Metamucil can in fact effect absorbtion of many meds and could cause issues. If you dont know the meds the person is on then how can you give an answer.  It may be safe for some but not everyone. Only your own doctor can really make that determination.
This site is great for help with many issues. I have learned some things here. But I STILL CRINGE WHEN PEOPLE GIVE DIRECT MEDICAL ADVICE to a stranger or a person you only know from a distance.  Even a doctor should never do that .
Title: Re: Metamucil
Post by: Zach on February 17, 2014, 10:48:41 AM
No one is calling anyone stupid. The problem is the original question asked specific direct blanket advice on a med(OTC med) for dialysis patients. Is it safe?   That is a very dangerous question for anyone to answer unless you specifically know the patient and their meds and history. Even with all my medical training and experience I wouldnt answer that without knowing that patient personally and treating them. That is the danger of the internet. People give advice on specific issues without having all the facts. What is safe for one person may be lethal for others. Just look at what just happened to Nursy 66 and her husband. His rheumatologist gave him methotrexate while on dialysis. He should have checked with the nephrologist and avoided what is now a very serios condition that I ,in fact , warned her about. Even the surgeon that gave the patient with adrenal insufficiency metamucil erred by not checking with the endocrinologist.   Drugs often mix badly. What may be safe for you one day may not be the next day due to a new med you are on or other changes. Dont assume anything.  Metamucil can in fact effect absorbtion of many meds and could cause issues. If you dont know the meds the person is on then how can you give an answer.  It may be safe for some but not everyone. Only your own doctor can really make that determination.
This site is great for help with many issues. I have learned some things here. But I STILL CRINGE WHEN PEOPLE GIVE DIRECT MEDICAL ADVICE to a stranger or a person you only know from a distance.  Even a doctor should never do that .

You make a valid point.

 8)
Title: Re: Metamucil
Post by: Rerun on February 17, 2014, 09:46:30 PM
I'm just saying that this site was created to tell the truth as we know it.  If we're all going to be scared to give advice as we know it from our own experiences, then we may as well end each post with a legal dissertation.

Like a commercial.... 10 seconds on the drug and 20 seconds of possible side effects and studies. 

Whatever, do as you wish. 










 
Title: Re: Metamucil
Post by: Zach on February 18, 2014, 05:10:02 AM

I'm just saying that this site was created to tell the truth as we know it.  If we're all going to be scared to give advice as we know it from our own experiences, then we may as well end each post with a legal dissertation.

Like a commercial.... 10 seconds on the drug and 20 seconds of possible side effects and studies. 

Whatever, do as you wish.


You make a valid point, too!

 :-*
Title: Re: Metamucil
Post by: obsidianom on February 18, 2014, 07:43:30 AM
Just for anyones interest oon the topic, I asked our clinic dialysis nurse today if they recommend metamucil and she told me they have NO patients taking it and dont recommend it.  Again that does not mean it isnt for anyone but it is an interesting point.  I beleive the main issue with it is it can interfere with other meds and potentially cuase issues with some patients. It simply is too risky for some patients.

I wasnt going to get into a shouting match about this whole thing of medical advice as arguing isnt why I am here. I figure people will do whatever they want anyway and unlike my practice I am not responsible. But I do want to say to RERUN that perhaps we should look at what this site offers. Now I have only been here about 8 months and am not a moderater and you and many others have been here longer .    I hope by being here to learn but also to give something back. I try to use my skills and knowledge freely to help anyone who asks . I get nothing monetary for my time but enjoy giving back. I figure we are all in some way in the same boat of renal problems and at least have a common enemy.
Noe to answer what RERUN wrote about the site being to" tell the truth as we know it and and give advice from our own experience", that is noble and good but I think the one area that could be dangerous is giving direct medical advice based on only your own experience. Since every person is different and we generally dont know each others medical history it can lead to false or incorrect advice. One thing I have learned in practice is just how different each patient is and never to use personal experience as a basis to give advice. I give advice based on my education and years of experience across many patients. Even so I an careful here to not give direct advice without knowing the facts and the person.
Now the question is what do we want this site to be . I am just 1 person and fairly new here. You all have to decide that. I would not like to see it be a typical internet site full of misinformation. I think in general this place does a wonderful job avoiding that . However this whole metamucil issue is a good place to take stock. By answering the question as to whether it is safe for dialysis patients , you would be giving in effect direct medical advice if you said it was safe. That crosses the line here from informational and helpful to dangerous. Yes metamucil is just on OTC med, but we all know even OTCs can be lethal in some patients. I gave an example of a case where metamucil was dangerous .
If we start answering questions like that and give advice, are we all willing to deal with the repercussions of a bad result??? If we harm someone even with good intentions , does that make it right??   People listen to what we say here. that is good as we have a lot to offer. But if we taint it with bad advice we lose credibility .   It is a fine line we walk.   Most people here are not medical pros but have a lot of experience in this arena.   Giving out help and examples based on our experiences is positive.   But when we cross that line into direct medical advice we are in a very dangerous place.   It could even be lethal.
  Every day in my office I deal with the fact that every decision I make and procedure I do could harm or kill someone. I am used to that and always take that into account before I make a decision or even open my mouth. Yes I am insured for malpractice but it still would upset me know end to harm someone even with my good intentions.   But I would never cross the line into giving advice here without the proper info. and knowledge of the situation and the potential negative effects of my advice.  I would ask everyone to think about that before giving advice. We can be even better as a site if we stick to that .
Thank you for reading this.  I in know way intended this to offend anyone. I hope in some way it helps. I put a lot of time into thinking about this.
Title: Re: Metamucil
Post by: Rerun on February 18, 2014, 08:03:59 AM
Well, I just say what I've been through on and off dialysis and hope it helps someone and would not want to hurt anyone.  I do not take Metamucil because I have a different problem.  I take Miralax everyday in my coffee along with Baileys and am still kicking.  I've also taken Imodium for the opposite affect and am alive to tell about it.  I also take an 81mg aspirin everyday.  That is ME.  Doesn't mean anyone else should.  But, on this site I tell about me and what works for me.  I don't get paid either for my advice.  OB I appreciate you being on here and am glad you are so thorough. 
Title: Re: Metamucil
Post by: Rerun on February 18, 2014, 08:48:00 AM
You make a valid point, too!

 :-*

   Fence-Rider    >:D
Title: Re: Metamucil
Post by: cariad on February 18, 2014, 09:38:37 AM
I see your point, obsidianom, and I'd like to give my take on this. I cannot speak for anyone else, but I suspect that like me, most people are not here for want of attention from doctors. I fell in love with this place when, after 34 years of life with a transplanted kidney, I went to a local nephrologist and was heavily pressured to have a fistula placed. I was caught in one of those judgment calls where I knew I was going to be getting a transplant soon but I didn't have an exact date and was unsure if I would need dialysis first. This doctor said I didn't want to get dialysis through a cath because (I remember these words verbatim) "when it comes to infection, it isn't a question of if but when". He then kindly (not at all) told me that the infection could spread to the brain and then I wouldn't be able to get a transplant. Vein mapping confirmed what I already knew, that a fistula was going to be a rough road. My first fistula never worked and clotted off at transplant, and the shunt I had in my other arm meant two sites were no longer options. When you come into kidney failure as young as I did you have to consider how many access sites a person may need in a lifetime.

So I came on here and wrote "The nephrologist asked me what I would do if my GFR dropped overnight and I didn't have a fistula placed" And jbeany stepped up and stated plainly "What you'll do is get a chest cath." Is that "direct" medical advice? I don't know. Shortly after, I discussed this with my surgeon and he more or less said that that nephrologist wasn't exactly lying, but he was overemphasizing what could go wrong, as people sometimes do when they have something to gain by influencing you. Honestly, I've been on IHD for almost 5 years and have yet to hear of someone getting an infection that spreads to their brain from a central line. That doesn't mean it doesn't happen, but the people on here are a proactive bunch who take responsibility for their own care and don't just take someone's word for it because they have an MD, or because they've had a transplant their entire life, or whatever. Honestly, how do we even know that anyone here is who they say they are? I don't say that because I disbelieve that you're a doctor, but to make a point that of course you have to research your own treatment thoroughly and not expect to be able to blame someone on the internet for your own choices. I've seen so many doctors, and so often they disagree with each other (sometimes quite vehemently) and so then it's up to me to decide who's right. Members give and receive a lot of advice on here, some of it contradictory, you are going to have to discard a lot of it.

This discussion to me is another incarnation of the classic "you don't know/you can't know" debate (I'd credit the anthropologist who coined that term, but I don't remember her name). It is to me personally one of the most important discussions to have in communities based around chronic conditions. Essentially it comes down to education/expertise (medical professionals who would be the ones saying 'you don't know') as opposed to the people who have lived through the condition (the ones claiming 'you can't know'). I appreciate smart doctors lending their expertise, but I also want to hear from the people who are not afraid to trust me with their knowledge and experiences. People who challenge the medical establishment by daring to give different opinions based on their own lives and research have improved my quality of life, if not outright saved it on more than one occasion.

It's a fine line, I grant you. I have (very rarely) spoken out against members when I thought they were giving dangerous or inappropriate advice, too. I have been on the receiving end of that criticism as well. I take quite a few supplements, and it seems anytime I mention one someone has to post a link to an internet source that says they are dangerous for renal patients. All I am saying is that they work for me, and I've run most of them past my doctor who has approved them for my situation. I guess I just don't want to see this site become what every other renal site I've seen has become: too cautious, too bland, too party line. I agree with rerun that if you know the person then you don't have to constantly repeat 'check with your doctor first'. I would probably write that if I were responding to a new member, though.

It is an important issue that you've raised, obsidianom.
Title: Re: Metamucil
Post by: noahvale on February 18, 2014, 11:38:41 AM
Title: Re: Metamucil
Post by: cariad on February 18, 2014, 12:06:48 PM
The site already has a disclaimer: http://ihatedialysis.com/disclaimer.htm
Title: Re: Metamucil
Post by: noahvale on February 18, 2014, 12:24:34 PM
*
Title: Re: Metamucil
Post by: obsidianom on February 18, 2014, 12:40:01 PM
Noahvale , as usual you are wise in what you posted and I appreciate that.  You made some excellant points.
Cariad, I also think you made some valid points. I am not a big fan of simply taking a doctors advise and not checking it out or getting a second or even third opinion. I did that when I had cancer . I got 3 opinions then ran my own treatment. My surgeon made a joke to me about how I ran the show, and all he did was "cut a big hole in my butt".       Discussions on meds and treatment options are fair game and and helpful here. As I wrote there is a fine line between discussion and direct advice.
Remember also , there is no "medical establishment " per say. Medicine is made up of thousands or more of individual providers and locations and each has their own oipinion and ways of treating patients. Yes there are big providers like Fresenius and Davita , but even there each nephrologist makes their own treatment decisions. Medicine is an art , not a science. There is widespread disagreement among doctors all the time. That doesnt make the doctors necessarily wrong, its just the nature of medicine. We dont know a lot more things than we do know.
I think what we can provide here as Cariad wrote is a community with a common issue of renal disease that can provide a place to sound off and educate each other to be better consumers or patients. As long as we stick to the education as opposed to actual treatment advice we are doing a great service and can potentially save or at least improve lives. Each person here has the potential to bring some worthwhile experience to the table so to speak.
Not giving direct medical advice but instead educating will not make this site bland. Instead it will give it credibility and make it stronger. It will have a reputation for quality information . That can only help everyone.

Just a side note about doctors  doing some questionable  things . My wife and I had a big fight with one of her doctors recently after he cut the dosage of one of her maintenance meds by 2/3 without even discussing it or checking on why she was taking it. We made the mistake of asking him to refill it while seeing him anyway instead of going back to the original doc who wrote it. BIG MISTAKE.  Even though we are collegues he never thought to call me and discuss the change. If we had used the dose he prescribed it could have either killed her or sent her into a violant rebound that could have damaged her GI system and /or heart. It was not well thought out . So the moral here is doctors often make mistakes, so check up on everything and know as much as possible about your medicines and medical care so you can question mistakes and avoid disaster. Doctors are human (even though many think they are gods) and make mistakes. Some are just burnt out and make more mistakes, some are just not all that bright. ( I am not writing this about my wifes doctor as he is decent usually).
  The old joke about doctors still rings true.    ---WHAT DO YOU CALL THE PERSON WHO FINISHED LAST IN THEIR MEDICAL SCHOOL CLASS???/
ANSWER-----------DOCTOR.          Remember that . Some doctors are not as bright as others.  It is actually often the doctor in the middle of the class who is the best doctor overall. ( I actually finished second in my class , so I dont know where that puts me.-----class clown?    or like Avis i tried harder)
Title: Re: Metamucil
Post by: kitkatz on February 18, 2014, 02:27:45 PM
Here is warning: STAY ON TOPIC! This not a topic for whether or how to take advice from the site or not. Please start a new thread.



kitkatz-Admin
Title: Re: Metamucil
Post by: Rerun on February 19, 2014, 08:55:01 AM
OK OK... Kit wheather or not you take the Metamucil or not..... DO NOT repeat DO NOT... take the whole Jar at once.  Just my advice.

            :waving; 
Title: Re: Metamucil
Post by: obsidianom on February 19, 2014, 12:29:56 PM
Up here in the far cold north we use it to patch up cars for the winter like Bondo. It is thick enough.
Title: Re: Metamucil
Post by: noahvale on February 19, 2014, 05:42:23 PM
*