Wasted money on promises
#145492 - 02/01/05 08:02 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I am wondering if others have spent hundreds of dollars buying supplements that are suppose to help IBS? There ars so many to try and so many recommended for IBS. I have tried probably 10 and don't know which are legitimate and which are are waste of money.
Every book you read on IBS recommends different things, and these books have been written by doctors who specialize in IBS.
Besides probiotics, digestive enzymes, and SFS has anyone found a legitamate supplement that helps, like L-glutamine, Ibscalol sp?, valerian, or any of the other recommendations you find in Nutritional healing books?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Problem is, every body is different and responds to different supplements, and unfortunately, the only way to find out what works is to try everything in sight until you hit on something, or a good combination of somethings. I'm not even sure whether others' recommendations are helpful, since we all seem so different.
So you might say the money's wasted, or you might say it's an investment in finding what works.
Sigh!
Too bad that's the only way to do it, huh?
Augie, from the look of your posts today, you seem very discouraged. Hope you'll hang in there, keep trying, find something that's helpful to you soon.
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I was on Lifestream Biogenic Inner gel aloe vera till Heather gave warnings against it (the company say it's safe but I don't want to risk long term problems) and it was $30 a bottle so I have a bottle of that in the fridge, a container of slippery elm powder, container of slippery elm capsules, container of L-Glutamine, ummmm, donnatab antispasmodics which didn't work plus a $45 pkt of anti depressants I never took. Whew. I sure waste a lot of money I don't have. Makes me cranky too.
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Amy
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I have only just 2 days ago been recommended the lifestream aloe vera juice and some slippery elm!!! I have only been diagnosed about a week ago with ibs (though thought I had it for many years) and am only just starting to eat accordingly - I am following alot of the guidelines on this site, and it has certainly helped with the painful bloating, however I wonder if the gas ever goes away???? It can be uncomfortable and embarrassing, and seems to occur no matter what I eat (though at varying degrees), has anyone else out there managed to beat this problem or get rid of it over time???
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I think all of us have done it to some extent.  While I haven't had the problems you've had, and I haven't tried nearly as many supplements as you have, I did waste about $30 trying to find the SFS that was going to work for me, and another $30 on probiotics that I never took because I was afraid, another $10 on digestive enzymes that didn't do anything, and let's not even get into the amount of money wasted on specialty foods that ended up in the trash. Thankfully, I only pay a copay for prescriptions, because there's also those untouched (because I was afraid!) Bentyl and Phenergan in the cabinet.
Sweetie, I think I owe you another email, once I'm a little more awake (I just rolled out of bed, heh).
Beth, hang in there, ok? You will find relief for this, I know you will. *hugs*
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Let's see....... i've spent $180 on something called molocure, hundreds of dollars on "renew life" products (intestinew, cleansemore, heavy metal detoxes and on and on) hundreds of dollars on garden of life products that are supposed to cure everything, hundreds of dollars on acupuncture and all kinds of homeopathic herbs, I've read the maker's diet, patient heal thyself, some crazy book call the cleanse or something. So yes, over the years I'm sure i've spent close to 10K on mostly futile efforts. Even many of the rx i've gotten have only made symptoms worse. THis disease is pure hell. I wrote this in another email, but the only thing that's working for me is babyfood, bananas,potatoes, zelnorm and citrucel. That's been for a few weeks very successful. Does that sound like something you could try?
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For me, the only laxative that I can tolerate w/FEWEST side effects (not none) is called cleansemore by renew life. I have to cushion it w/plenty of potatoes though, which cushions the blow so to speak when coming out!
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Thanks Paula
#146079 - 02/02/05 07:47 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Yeah, I'm having a rough time.
As far as keep trying more supplements, I'm going broke and It's hard to fork out 20 or more bucks for a supplement only to end up with a cupboard full of half used supplements. I must have more than 10 different supplements in my cupboard right now. Probably more: Artichoke leaf extract, omega 3 supplement, peppermint capsulses, gas be gone, 3 different Renew LIfe product, the list goes on...
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I have most of those too: slippery elm, l glutamine, antidepressants I couldn't tolerate, ant-spasmodics that caused me C, plus all the herbal ones. And about 6 different types of SFS!
I too live on a very tight budget. LIke poverty level, so I could have really used that money to pay some medical bills off.
Amy, we are two peas in a pod (unfortunately two sick peas in a pod). Promise me we'll keep each other going? We need to be there for each other okay? We need to pick each other up and let each other know if we find anything that helps.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Casey,
#146082 - 02/02/05 08:00 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I know I've probably wasted over 5,000 dollars on meds, SFS, herbal supplements I cannot take or haven't worked. Remember, I had no medication coverage! and of course the HFS charge mega bucks. The digestive enzyme is 45 dollars alone. The Primal Defense probiotic is also 45 dollars and you were suppose to take 12 a day in the beginning, so that was $45 dollars every 9 days! I did that for 3 months! Stupid me. Didn't do a darn thing but cost me a fortune. 
How can you be so sure I will get some relief? I wish I had your optimism, sweetie. Thank you for your words of encouragement. I think you would do about anything to help me, and that touches me!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Have you stopped taking all the other stuff?
I do take citrucel, but I think I need more insolubles because I think bananas bother me. They are gassy and cause C. I have been taking zelnorm but don't think it's doing anything.
Yeah, those Garden of LIfe product, which promise to cure everything are outrageously expensive. Mr. Rubin should be ashamed of himself.
Glad you found some things that help you. They haven't done a thing for me though. Don't know what will. 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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is a red flag. I don't want any type of "laxative" type product.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Yep it's depressing. Although we thankfully have medicare here so I don't have to pay as much for procedures and doctors visits which helps. I forgot to mention I even went to a naturopath ($50 a visit) who gave me like 10 bottles of stuff to take. It helped initially but then wore off so I got more stuff to take on top of what I already had. I was guzzling gallons of this stuff and most of it was about $40 AU a bottle! I put up with it for 3 months then decided what was the point if it didn't work? Yep, as I said in my other post. I'm not going anywhere. Feel free to email me if you want! With the kids I try hard to spend enough time on here but I miss posts sometimes.
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Amy
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I have stopped taking all of the supplements (other than vitamins and some digestive enzymes) and zelnorm. Since none of them really made a difference, why waste the money. For now I am just sticking to baby food, and other soft foods (potatoes, bananas, mangoes). You said the bananas give you gas.... have you given mangoes a try? I'm ultra sensitive too and have good luck with them. Wish I would have known you when I still lived in Illinois. I actually moved to Arizona so I could wear light loose clothing all year round. Crazy! If there's anything I can do to help you... I can hear the horrible desperation in your voice and I know it oh so well. This is a horrible disease. Can I ask when was the last time you weren't taking lots of things at one time... hard to know but sometimes we just have too many things in our system to know what's causing/helping problems?
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Hi Beth and all,
About 20 docs since we've been married (2.5 years). THOUSANDS $$$$ in specialy foods, SFS, supplements, vitmains, etc. Procedures. Naturopaths. "It's all in your head." Hubby thinks I just like spending our money 
And guess what? The sinus infections they thought I had were migraines. So I took out dairy and BAM I'm a different person! Sugar is bad for my fibro. I'm taking it out.
I am finding it's about what I do/don't put in my body that matters more than anything! Following Heather's diet, and taking out sugar, and staying away from my migraine triggers, lots of fluids, exericse, etc. makes all the difference in the world for me!
I think we all have substances we put in our body that are foreign to our individual systems.
*sigh*
I wish I had more answers. BUT I have faitht hat you will figure out what does/doesn't work for you! *hugs*
Love,
Ruchie
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Formerly known as Ruchie
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Ruhie
#146492 - 02/03/05 05:53 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Do you take any supplements at all? What about an SFS? Or do you do just the diet?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Taroh73
#146493 - 02/03/05 05:59 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Thanks for your concern and offer of help. Do you take any SFS at all now? Or have you cut that out as well?
I was actually thinking of moving to Tucson Arizona at one time because I hate Chicago weather. But I chickened out, moving all alone and not knowing anyone would be too stressful for me.
I'm afraid to cut out any supplement that may have the potential to help. But I guess now I take probiotic, digestive enzyme, magnesium, triphala herbal, zelnorm, and citrucel. Oh, and gas X.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I have begun to take gas x once again - when do you suggest the best time to take 2 of them??
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I do take citrucel as that's the sfs I can tolerate. I understand about your not wanting to move alone. It is horribly stressful. I have wanted to move back to Chicago for so long to be by friends and family, but I need the bathroom freedom my job provides, and cost of living is way cheaper here in AZ. Makes all of life easier. There are a few other girls on the board here in AZ, so if at some point you did move, you wouldn't be alone. There are lots of great naturopathic hospitals out here too... but I don't know that they can help us anymore than the traditional docs. You are probably on a little bit of overload here... too many people with too many suggestions. Can I ask when was the last time you took any type of true laxative? Do you have problems with them?
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I have already become pretty good friends with Jessica who lives in Arizona.
As far as laxatives, I refuse to take anything stronger than a suppository and I haven't even taken one of those in months. I don't like what laxatives do to my body and have strong feelings about these as they cause the bowels to become addicted to them and totally screw up your system.
How much citrucel do you take in a day? And where did you used to live in Illinois?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
Edited by Augie (02/03/05 06:56 PM)
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Hey Beth...... I totally understand your not wanting to use laxatives and the fear of coming dependent. I honestly am AMAZED after all the chronic laxative use i've had for years that my bowels now move w/just the citrucel and zelnorm and mushy diet. I think you asked how much citrucel I take. I've been at just 1/2 tsp a day until 2 days ago I started adding another 1/2 tsp. We'll see how that goes. The only thing I can tell you about the laxatives is that the only one I will use anymore is by renewlife (cleansemore) and only becuase a few different doctors have told me that the ingredients are non-addictive to the bowels. Again, that's only what i've been told, and I appreciate your apprehension and not wanting to make things worse in the future. By the way, I am mostly from south suburbs.... palos hills, tinley area. And I lived in naperville for many years.
Hang in Beth.
p.s. have you tried baby food?
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Hi Beth!
SFS, diet, multi vitamins, Immune supplement for my fibro, and beano. What about you? :-)
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Formerly known as Ruchie
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OMG
#146517 - 02/03/05 07:18 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I grew up in Tinley Park and now live near Palos Hills! Crazy. I love Tinley Park! I went to Sandige Elementary, and TPHS.
Did you move to Arizona by yourself?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Re: Ruhie
#146520 - 02/03/05 07:23 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I take digestive enzymes, probiotic, triphala herb for constipation, magnesium, beano with eating lentils, citucel, zelnorm and currently added lexapro and klonopin.
Which SFS are you taking? Acacia?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi there,
No on the Acacia--benefiber for now. I need to save some money so I can order the Acacia...I have a feeling I'll have better results with it!
How do you feel the htings you're taking are working for ya? I hope great! *hugs*
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Formerly known as Ruchie
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Wow! You get this too! I can't count how many times hubby has said that. Before my diagnosis I also spent money on usless tests. Ultrasounds, upper GI, medications that didn't work. Now I'm a freak because I don't eat like every body else
Who cares I feel so much better.
Blessings to you and every one on this board!
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Hey Beetle!
I like your attitude! And you know what...you're right! Who cares if we feel good?!
I know it's taken me lots of $$$$$$ to get here...and lots of time, etc...but I'm here! And I believe everyone can get here. With a lot of hard work, perseverence, etc.
Good luck to you *hugs*
Ruchie
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Formerly known as Ruchie
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I more or less moved alone. I actually moved out here w/my sister, but we basically quit talking about two months after we moved here and I've been alone ever since! Gosh I think my whole family lives off of 111th. You are right in my old stompimg grounds. I absolutely love Palos. Right before I moved here I lived off of 111th across from Moraine Valley in "The Riviera" condo's. I almost moved back to Tinley this month, but my mom sold her condo there and I realized I needed to stay here for security etc.... We will definitely have to talk! My email addy is on my profile. How old are you BTW.. who knows, we may even know eachother. 
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Beth, I'm glad that you call me your friend, that makes me feel good. I heard back from that herb place and looks like the g-zymes are going to take some time for a full benefit like the Triphala...I'm still taking the Triphala along with it, but only half the dose. I used to use ALOT of laxatives...suppositories, dulcolax, you name it. It's probably been a couple months now since I've last taken that crap... How are you doing though? Are you coping a little better??
Jessica
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Jessica
#146876 - 02/04/05 07:41 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Of course I consider you my friend! We have shared a lot here!
So, how many mg of triphala do you take in a day total between the 4 g-zymes and the plain triphala? Is it a total of 1400mg? Do you think the triphala is doing anything for you?
I'm hanging in there, but struggling with some big stuff: thinking I need to find another job that pays more, even though I don't want to leave my job, trying to find another GI and regular doctor from a list of docs. How do you pick a good one from a list of names? And of course trying to deal with figuring out what foods to eat, what SFS to take if any, etc. Now my doc tells me he doesn't think I have IBS!  But has no clue as to what I have. I don't know if I trust him though. He is very moody and if he's tired or stressed he snaps at me and could have just said that out of frustration. I don't know. So far all my tests over the years have been normal, except for Gallbladder and gastric emptying. So I think I need to try to find some other doctors. Any ideas how to find a legit one who is also empathetic and listens to his patients?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Amy
#146878 - 02/04/05 07:49 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Thanks for the offer to email you. That's so sweet that you care. You know it's weird. While we both are still suffering, we are at opposite poles: you with your D and me with my C! Too bad we can't give each other a little bit of our symptoms to one another and be normal!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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except I'm still an A on occasion so I'd probably end up a c but if I could give you a bit of my being sick then it would certainly fix you up in a big hurry. I'm always telling mum I want to return my tummy to the reject shop and get a refund cause I got ripped off!
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Amy
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Hi Beth! Each g-zyme has 100mg, so yes, 1400mg total per day. It's hard to say right now, but I do think it is doing something. Usually I only have a BM in the morning after miralax and acacia, but yesterday, for the first time, I went in the afternoon....I'm thinking the g-zymes and triphala probably had something to do with that, but who knows at this point. Doctors are so difficult....it's so hard to find one that actually really cares. I have just a regular doctor right now that I go to and he is great. He really listens, is concerned, and trys to educate me as well. I have seen other doctors who usually just say.."Eat more fiber..." and don't really say much else. You may have to try a couple doctors before you can find one that really cares. Do you have medical insurance? I don't, so I hope you do, since that will help with the expense of trying new doctors. Knowing how to find an empathetic one is not easy to answer.... unfortunately it is just like fiber, you have to try a few before you find which one is right for you. Hang in there and keep doing what you are doing in the mean time. Maybe try an internet search in your area? Good luck, Beth.
Love,
Jessica
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