I have also tried probiotics-VSL, Flora Q,Probiotic plus, Acidopholis etc. I know about Amitriptyline. Was on it for many years for sleep problems but would rather not use a drug. Wish there was an herb etc. that might work. I have used Immodium in the past & may go back on that. The pepto has aspartame don't like to take that on a longterm basis, but desperation sets in & you all know that you will do almost anything to get relief.

I guess I am at a loss. You have seen the very best at Cleveland Clinic. You have taken treatments that help, but don't want to do that anymore. It seems that you want something that gives a pharmacological effect without being called a drug. It does not exist except for the placebo effect. The aspartame is not the problem with long term Pepto Bismol, the bismuth is, so you should not take it for more than a few months at a time.

You can experiment with all sorts of supplements, but the effect will vary from person to person. My suggestion would be to follow Dr. Bo Shen's advice.

Jan

Herbs are drugs but without the rigorous testing for efficacy and safety. Don't be fooled by the terms "natural" and "herbal". It doesn't mean that they are better or safer than those drugs that have been FDA approved.

Sue

The antibiotic route obviously hasn't helped me after all of the rounds that I have taken in the 2+ years since the takedown. I would like to know more & would be interested in the side effects from the bismuth? Artificial sweetners of any kind are not good for anyone-very hard on the brain as I understand(such as aspartame) So would I rather put Belladonna & Opium into my body or take a chance on Pepto? What I am looking for is healing & not just a band-aid effect or management. I am not defending Pepto or whatever just am looking for info. Thanks for any help on this bugger pouch. My liver levels(I have PSC) have improved with Milk Thistle & bile salts. That is very encouraging to me.

I happen to believe that purchasing supplements from a reputable company such as Bio-Innovations is not a scary as taking FDA APPROVED drugs. I would not purchase plant extracts(supplements) from just any company or any old brand no matter how cheap. How many drugs have been taken off the market because of side effects or death? Putting poison into my body(prescription drugs) is very frightening. They have their place, but not for years on end if something will actually help the body to have. Thank you so much for any suggestions and/or input. This site has helped me SO much!

I am glad that you do your homework and only buy supplements from reputable manufacturers. Consumer Reports have done studies showing that since it is an unregulated industry, the quality control is basically up to the manufacturer. They found varying amounts of an advertised supplement from lot to lot, from much higher levels to none at all. Plus, for whatever reason, Chinese herbs have been known to suddenly contain herbal additives known to cause liver or kidney failure. So, for someone with PSC, you should be exceptionally careful. Just keep in mind that if something is strong enough to have a pharmeceutical effect, it is a drug.

Actually, belladonna and opium are not harmful to your liver or kidney, particularly in metered doses (plus they are naturally occurring plant products). You know exactly what you are getting. But, if you choose not to use them, that is up to you.

Milk thistle actually has some good research behind it and it does seem to have a positive effect on improving liver function. I have been taking vitamin E supplements on the recommendation of my GI due to liver enzyme elevation from fatty liver disease, and my enzymes have returned to normal levels. Again, there have been scientific research in this area.

The research on bismuth poisoning is not large (bismuth subsalicylate is the main ingredient in Pepto Bismol). Bismuth is a heavy metal and can lead to encephalopathy when it builds up in the body. The elderly and small children are most at risk. If you have any kidney dysfunction, you should be especially careful. Plus chronic high dose use can cause salicylate poisoning. This is why it is not intended for chronic use. http://www.pharmgkb.org/do/serve?objId=173&objCls=DrugProperties


Your information on aspartame is flawed, but is commonly reported in the alternative medicine newsletters as being a cause of brain damage. Aspartame has been heavily studied, and this is just not true. The only people who are at risk of brain injury are those with phenylketonuria (PKU), which is a disorder of enzyme deficiency that you are born with. They test all babies at birth for it, so you would know if it was you. If you have PKU, you cannot metabolize phenylalanine and it builds up in your body and causes brain injury. Aspartame contains phenylalanine and it has a PKU warning on the package. Plus, I just looked at my bottle of Pepto Bismol tablets and there is no aspartame. Perhaps your stuff is from older stock. I checked their website and none of their products have aspartame, but the liquid does have saccharin and sucralose. The tablets have mannitol.

Jan

This message has been edited. Last edited by: Jan Dollar,

Thank you for your response & the info. The bismuth that I buy is not the "Pepto Bismol" brand but a store brand that happens to contain aspartame for the sweetner. I tried going back on Imodium yesterday & it was a terrible day & night. I used to take imodium inn the beginning & it worked pretty well as I remember. Could it be that I still had so much of the pepto still in my body & the two don't mix well. I do happen to believe that there is a place for holistic medicine,especially when everything else has not worked to cure the condition. Again thank you for the post & info.

Of course, different brands will have slightly different ingredients. The bismuth subsalicylate should be the same though. I don't think there's an interaction with Imodium. Could be that your issues are beyond simple measures. I know that when I had pouchitis, no amount of Imodium made any difference.

Certainly there is a place for alternative medical therapies for many of us. The main thing is to do your homework and understand the abilities and limits of each type of therapy. Traditional drug therapy is no more poison than holistic medicine is magic. Each has the ability to do great good and great harm, but used properly, they should complement each other. Usually alternative medicine is helpful in maintaining health, but is less well adept in treating serious illness.

I hope you find a reasonable answer to your suffering.

Jan

I have been on Pepto for a year now with the blessing of Dr. Shen at Cleveland Clinic. What I have just read on the site you posted, Jan, is very frightening. I can get no relief from anything but Pepto. What am I to do? I am already on Tincture of Opium, Lomotil, and Metamucil. I have tried the probiotics and it seemed to help the first week and then right back to the same stuff - way too many bathroom trips. I am still going to the bathroom a lot with Pepto but without it, I am going to the bathroom 20 times a day. I feel like I have pouchitis even tho it was ruled out at CLeaveland Clinic. Supposedly I have IPS but none of the remedies they offered helped. Any suggestions????

Donna, the idea is not to frighten, but to enlighten. When you are taking medicine under a doctor's supervision, you should be fine. The main thing is to watch out for any symptoms that may indicate any buildup of the bismuth- periods of confusion, difficulty concentrating, or similar. If this happens, you will need to stop the Pepto. The main thing is to fully understand your treatment. If your dose stays on the low side, your risks are lower too.

Jan

Thanks, Jan. As always, you are so helpful. I have been thinking about this all day and what you did say brought some relief. I take 1 tablespoon in the am and one in the pm. If I miss one of those doses, I feel awful with continuous liquid bms. It seems like this 11 year old pouch is just tired. I am going to schedule an appt with Dr. Launer for a Kock Pouch but I just read a post somewhere that a Mayo Clinic dr did not want a poucher to go back to an ostomy since she now has PSC. Well I unfortunately have that too and Dr. Fazio did mention something about pressure from a Kock Pouch but did not rule against it. Honestly, there is so much to consider. I just finished 37 radiation treatments for breast cancer so want to get my body in a healthy state before I go onto anything this big. In fact my Kock Pouch had to be canceled in Oct because of the lump I found. Bad pouch, PSC, breast cancer, arthritis and I don't think I can take much more. I am hoping though that the Kock Pouch will be a successful one and I can put that part of my body behind me
Thanks again for your reply.