Did a search on Zelnorm, any ideas???
#205717 - 08/15/05 06:31 PM
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LtDanFan
Reged: 12/17/03
Posts: 588
Loc: Ohio
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Did a Zelnorm search, I know my doc is a specialist, but I like to get everyone's opinion and advice. I kind of double posted earlier and not sure if anyone saw the second part> So, sorry if you think this is a double post....I have severe pain, with a bm followed by several explosive bm's when I have an attack and he wants me to take Zelnorm? I'm a little leary, but the way he explained it to me made sense, but I still wanted some words of wisdom from other IBSer-D.
Thanks
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
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NOT diarrhea... so if that's what you have, then Zelnorm isn't for you. Just my 2 cents - I'm not a doctor, of course, but that's what I understand about Zelnorm. It's NOT for people who have D or alternate between the two.
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...tv commercials. My .02 cents too...I don't know why this doctor is giving it to you.  It can cause D in people who are C, so can't imagine what it would do to a D! 
I'm a C though, so maybe you only wanted opinions from D folks.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I took two different courses of the Zelnorm. I am IBS-C, mostly pain though. Personally it didn't produce anymore bowel movements than the citruceldid. I don't think it did anyting for me. But I also have heard alot of good results from people on this board...
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Is it possible that the doctor feels the C is triggering the D? Meaning that when she finally has a BM, her colon just freaks out and gets going, going, going? Maybe his reasoning is that by taking Zelnorm, she'll avoid being constipated and eventually avoid the D.
How the GI specialist explain it?
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I was reading a medical write-in column in a newspaper a while back where a doctor answers people's questions. The guy writing in was asking about IBS-D and the doctor suggested Zelnorm too! First of all, I'm pretty sure it's just for women (and this was a man writing in) and secondly, from my understanding Zelnorm is JUST for people with C, not D or even A. Maybe I'm wrong there since I'm a D myself and I have no experience with it... but yeah, that's my understanding.
So I would DEFINITELY question your doc on this one. Maybe Heather can help too??
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OK I just checked out Heather's Zelnorm page and this is what it says on there:
Quote:
Who should NOT take Zelnorm? ~ Zelnorm is not recommended for use by pregnant or breast-feeding women, and it is absolutely not to be used by women with diarrhea.
...so, that seems pretty definite
Here is the link to that page: Zelnorm info
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Are you having D all the time?
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Quote:
Are you having D all the time?
. Have you tried Librax? I also use Heather's Acacia and drink peppermint tea. I have finally found some relief.
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...isn't it scary how many docs are prescribing serious drugs for IBS w/out knowing anything about them! No wonder there were sooooo many issues with Lotronex! 
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Okay, this is my bowl habits and how I explained it to my doc and what he said. I took my diary of food and showed him how much fiber I eat a day and along with SFS. He asked me if I didn't eat fiber and take the SFS how would my bowels be and I told him I probably wouldn't go every day or every other day. So I think he's basing me trying the Zelnorm on that. WHEN I having a normal, attack free BM everyday, (graphic here, sorry), I have no pain and I go it is usually not a nice semi-solid bm, it's usually pieces, but I go, I don't have to strain and maybe some people would consider it constipation, since it's balls, but I go with no pain and straining. This is usually when I'm attack free eating between 18/20 gm of fiber a day, along with tons of water. When I have an attack, I would say 80% of the time, I have the pain sometimes up to 5/6 hours before I can even go and when I do it's hard at first, followed by the explosive D, for about 4 or 5 more movements. Since I always end up with D, I have considered myself D. I do occasionally have episodes when it's just explosive. BEFORE I was taking this much fiber, if I had one of my D attacks where I would go like 5 times, I wouldn't have a BM for about 4days, than I'd get back on track for a little while. So am I D or C??? Personally I'd live with being either if I didn't have the un Godly pain. My last colonoscopy showed an area in my decesending colon that completely shuts and he had to blow a ton of air into my colon to open it to finish the test, and that is where my pain is, almost always. I have been on every IBS pill there is and have been on LIbrax for about 10 years, I have with the help of Heather's diet and my fiber dropped from 3 a day to 1 at bedtime, I had horrendous attacks taking 3 a day, but it worked better than any other meds I had taken inthe past, so we went with the Librax. I do know one of the side effects of Librax is constipation. So since I had attacks taking 3 and with the help of this diet I have dropped it to the 1 at bedtime. My doc still wants me to take it, he even said if it doesn't make me too lethargic to take it 3x a day with the zelnorm??? So I hope I have explained the life and times of Cheryl's IBS lol. So, if I try the Zelnorm, I'm going to try it this weekend when I don't have anything major going on and can run to the toilet if I have to. And it's funny how the Dr.'s never want to sit and discuss the fiber differences and how to eat, etc. they just think a pill will solve it all and make you think you can eat whatever you want, when I told him I basically live on carbs, I think he thought I was an idiot, but never offered any eating advise.
In my next house I'm just putting my bed in the bathroom. 
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
Edited by LtDanFan (08/16/05 05:06 AM)
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Jeez!
#205791 - 08/16/05 05:30 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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I would make an appointment or call the GI asap and ask why the hell are you on Zelnorm when you're A tending towards D NOT C! That sounds sooooo bad for you. Your symptoms are actually very similar to mine it would seem btw.
And I would actually get another opinion/doc if you can. Ramping up your meds doses to counteract their side effects is such a bad idea with IBS - it could make you soooo much worse. What the hell's wrong with doing the diet, SFS and cutting down on meds?
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Yeah, agreed!
#205795 - 08/16/05 05:37 AM
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atomic rose
Reged: 06/01/04
Posts: 7013
Loc: Maine (IBS-A stable since July '05!)
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Even if you do want to consider yourself as having SOME C, you do also have D, and Zelnorm is very specifically NOT for people who have D *at all*.
Your GI is an idiot.  I'd really get a second opinion if I were you.
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I didn't understand it either, but he is known all over this area as being the "best". I'm so confused, I just want it all to go away.....................I want to eat what I want to eat, if you know what I mean, I'm sure everyone gets this way!!! We'll see I have a test Thursday and some other stuff next month...........Thanks
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
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Hi Laurel, Yeah, my GI doc told me that it wasn't just necessarily for women, tried on me, and I found out otherwise.
I took it for nine days and developed a severe allergic reaction, rash, severe D, and all. After I stopped it, the D
still lasted for two weeks! It was a very nasty experience. I
definitely would not recommend that any guy take it. -Bob
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<img src="http://www.math.mtu.edu/~rwkolkka/BritPicA.jpg">
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Hmm, Well I'm most definitely C and I agree, sometone with constant D shouldn't take Zelnorm. However, the drug is SUPPOSED to regulate your colon. It sounds to me that your colon is going to slow for a while than too fast, causing the swing from C to D. So, maybe the dr is thinking if the Zelnorm regulates your colon, maybe you could find a happy medium? Thats my best guess! However, I will say that even being a C, the zelnorm gives me D for the first day or two a take it!
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Taking it one day at a time.....
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as it hasn't been proven safe or effective. It is ONLY for women with constipation and NO diarrhea. Novartis, the drug manufacturer, makes that crystal clear in all of their literature. Any doc who says otherwise has a lot of explaining to do.
- H
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Yikes, this thread is scary! I can't believe how many docs (GI specialists no less!) are prescribing IBS drugs incorrectly! 
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incidentally, where the first run of zelnorm commercials used only women (holding their shirts up to show their bellies, seemingly written on in magic marker), they've now started playing one that features men as well. (i work in commercials, partially, so i pay attention. then, you add ibs to the mix...)
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jaime
ibs-a (mostly d) // vegetarian
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Well, thanks to all you I have decided not to take the Zelnorm. I know I do not have D everyday and if I didn't eat fiber I would probably be C, but the fact is, I take and eat lots of fiber everyday, eat the safe stuff, and my bm's ALWAYS end with explosive D, or start with it, so, I'm scared to even take one Zelnorm. Thanks everyone. I'm gonna wait for all my test results and go from there and continue with what I'm doing. You guys are such a great support group. 
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
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Zelnorm cannot be advertised for men, as the FDA has not approved this use. But, doctors can prescribe drugs for "off-label" uses, which means that it's perfectly legal for a doc to prescribe Zelnorm to a man. If the drug is indirectly marketed to men, and a man with IBS gets the idea that it might be something to ask his doctor about, his doc can then prescribe the drug to him. The doctor should NOT be doing this, since it's not a safe or effective drug for men, but it is still happening. And the commercials that feature men are a backhanded way of accomplishing this.
- H
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Oh man, I'll say it again, but YIKES! I can't believe how scary the pharmaceutical industry is! They have so much corporate control over our HEALTH! 
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when they showed men in the commercial that they had finally tested it on men. From what I understand it wasn't approved for men simply because they had not tested it for them (also why it was only approved for women for a few weeks, as further tests had not been done). So I thought it was reasonable that they had now done tests on men. I would think they eventually would. But if it still isn't approved for men then a drug company should be smarter than to market it to them.
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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I went in for hip pain and saw a new doctor. He did x-rays and said my hip was normal but I was constipated (seems like I always show up that way on x-rays without having problems). He recommended Zelnorm and told me to just look it up online (didn't ask if I was online). He couldn't even write out his own prescriptions. I told him I did have IBS.
So I went home excited thinking my IBS might get better if I was chronically backed up then my symptoms could improve on this Zelnorm. I did not look it up online. I started taking the recommended dose, but as I am A and not C I got D pretty bad. I dropped the dose like an intelligent, sentient being would, but the D continued. I got into a full-blown terrible attack and then went off the Zelnorm. I ended up in one of the worst episodes ever. That was when I finally came online and researched IBS. I found this site and ibs.org and learned a lot. I started the diet last April (2004) and finally am better, without the Zelnorm.
It flabbergasted me to have had that "doctor" prescribe Zelnorm without asking me any questions or giving me any instructions. I can see why there have been deaths related to Zelnorm.
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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Zelnorm and Men
#206164 - 08/17/05 10:09 AM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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Zelnorm is now approved by the FDA for men and women with "chronic idiopathic constipation", but still not for men with IBS with constipation.
From the FAQ pages at Zelnorm FAQ:
Quote:
Zelnorm was approved by the Food and Drug Administration on July 24, 2002 for the short-term treatment of IBS with constipation. Zelnorm is a medicine for the short-term treatment of women who have Irritable Bowel Syndrome (IBS) with constipation as their main bowel problem. Zelnorm doesn't work for all women and has not been shown to work in men with IBS with constipation.
Zelnorm was approved on August 20, 2004 for the treatment of chronic idiopathic constipation in men and women under 65. Zelnorm is indicated for the treatment of patients (men and women) less than 65 years of age with chronic idiopathic constipation. Zelnorm has not been shown to work in men and women with chronic idiopathic constipation who are 65 years of age or older.
(Red emphasis mine.) The whole Website is pretty interesting.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I can tell you there are many doctors out there who are supposedly the best at what they do and everyone swears by them because of the reputation. When I was a kid I was told by one doctor I wouldn't walk again, another said I would walk but would be in a back brace for the rest of my life, the next said that I would be wheelchaired bound by the time I was thirty (which I doubt unless something happens in the next few days) another by fifty (which could be possible).
Currently my "best" is actually doing well in being right on about what is going on with my back and that I would never be able to bend over and touch my toes unless I get a hinge in my back. 
I also have known people who the best of whatever tells them they will never get pregnant. Really interesting since two of them have more than three kids and the other is pregnant with her second. All without any in vitro or fertility drugs.
This is why it never hurts to get a second or third opinion. Even it if comes from all us before you get the official second.
Michelle
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That is a really sucky way to mislead consumers let alone people who are suffering from C. Any idea if the new commerical guidelines are going to change things for the better? I get tired of hearing all these commercials and since the side effects always sound worse than condition to begin with, why endure?
Michelle
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Thanks you guys... and believe you me...when I see my Dr next... I will make sure he is aware of this...just in case he has many male patients with IBS... But I'm pretty close with my Dr so I don't think he would get offended if I mentioned it to him. I mean... I AM the one who told him about Heather's books!!
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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