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Posted 1/6/2007 3:44 AM (GMT 0)
ZELNORM:  YEA OR NEA.  PLEASE GIVE ME YOUR INFO.  IVE HAVE STARTED HAVING CONSTIPATION AND THEN AFTER DAYS TERRIBLE BOUTS OF PAIN  LONG BOWEL MOVEMENTS.  LEVSIN ISN'T WORKING AND ACTIVIA DOESN'T SEEM TO BE EITHER.  DIGESTIVE ADVANTAGE?  DOC GAVE ME ZELNORM AND LEVSID.  NOT SURE WHAT TO DO SINCE IVE ALWAYS BEEN IBS-D. GIVE ME THE SCOOP GUYS. THANKS.
Posted 1/6/2007 3:58 AM (GMT 0)
Hi scared,
Yea for me.... I liked Zelnorm. Although, you will find a few people on here that could not tolerate it. The most common side effects are D, bloating, cramping, nausea and headache. The only side effects I had were the nausea and headache for the first 3 days. After about a week Zelnorm started to kick in and I began having normal BMs. I was on it for about 9 months and loved it. After a couple months the effectiveness diminished, but still worked enough for me to stay on it. I think it is worth a shot. If you get dizzy or have extreme abdominal cramping with D, you should probably stop taking it. If you get D it should only last a few days.
What dosage did you get prescribed, 3mgs twice a day or 6mgs twice a day? I started taking 3mgs twice a day for the first month, then my doc bumped it up to 6mgs twice a day. It might be good for you to start with the smaller dosage.
Sorry, I haven't taken Levsin. Hopefully others will be on to give share their experiences.
Good luck!
Posted 1/6/2007 6:25 AM (GMT 0)
My Dr. had me on only one 3mg a day and it blew my socks off and cramped me up so bad so I cut it in half and it made me so dizzy couldn't get out of bed so I figured it wasn't for me. I thought it was for IbS-C. You said you had IBS-D. As for Levsin I have had it work to stop cramping sometimes but find a heating pad just as good.
Posted 1/10/2007 9:26 PM (GMT 0)
Zelnorm is supposed to be for IBS-C. I've been on it for a few years. Unfortunately for those of us with "C", we don't have too many choices. It seems to work for me, though, but I have to remember to take it on an empty stomach. I take 6 mg twice a day.
Posted 1/11/2007 2:28 AM (GMT 0)
My doctor gave me Zelnorm, I took it for a month and it didn't work for me. A couple of times when I took it, it gave me terrible D (liquid) and then the rest of the time.... nothing!!! I hope you find something that works and you get some relief. Take care
Posted 1/11/2007 5:02 AM (GMT 0)
Thanks for the advice, I was afriaid of that. I have decided to not take it at least for now and try activia. I also read about drug warnings about zelnorm on webmd. wish me luck. so far so good. sleep well all (i hope!)
Posted 1/14/2007 6:13 PM (GMT 0)

Hi,

  I'm new here - have been desperate to try to get some info on Zelnorm from people who have actually tried it.  I'm a 54 yr. old female who has diverticulosis and IBS.  I used to have IBS C, but for the past year have had bouts of D also.  So I guess that makes me alternating.  I was prescribed Zelnorm a couple of months ago, but after checking out the website & patient info, got scared to try it.   My doctor prescribed 6 mg. twice a day.  Lately I have had very bad C, so a couple of days ago I decided to try half a pill at a time.  So far it seems to be helping, but it has only been a couple of days.  I have been getting so many mixed messages about Zelnorm, it's very confusing.  The website said it is not for people with alternating IBS or IBS D.  Also that most people only take it for a 6-week period, or maybe two 6-week periods.  My doctor gave me 12 refills, so I wondered why so much?  And even if it does help, will I go back to the way I was when I stop taking it?  I sure would appreciate it if anyone can give me some info on this!

Posted 1/14/2007 8:16 PM (GMT 0)
That seems like a very high dose so you were probably right is cutting it down. My Dr. had me on 3mg once a day and I couldn't tolerate that. Glad it is helping. Yes, I think you do have to stay on it as it doesn't sure the problem forever.
Posted 1/14/2007 8:29 PM (GMT 0)
Hi bella,
Welcome to HealingWell! :-)
I have IBS-A and was also prescribed Zelnorm. My doc said it would help balance out the D and C. The Zelnorm would keep me regular so that I would have less D attacks, yet the C would also be relieved. It worked too. I was skeptical at first to try it - but then I figured I had nothing to lose. I stayed on it for almost a year. The only reason I stopped taking it was because I wanted to try alternative treatment, not because my doc put me on a time limit. The last time I saw my GI doc she told me that the latest studies showed that long term use of Zelnorm is not harmful. We did not need to cease treatment after 6 weeks or even 12 weeks.
A lot of folks can't handle Zelnorm; if you are one of the lucky ones that can, I suggest sticking to it for at least a little while. Unfortunately, when you stop, you probably will go back to the way you were prior to taking the med. Actually, the effectiveness of Zelnorm may even begin to wear off after a month or 2 of being on it. Some people have taken Zelnorm for a month or 2 straight, quit for a couple weeks, and then gone back to it. They say it helps with the effectiveness. I inadvertently did that when I quit and then decided to get back on because I had gone back to my old self.
From my personal experience, I think it's good that you started taking 1/2 a pill (3mgs). My doc told me to start with 3mgs twice a day for the first 4 weeks. It gives your body time to adjust to it. Then bump up to 6mgs twice a day. It also helped with the effectiveness because after 4 weeks 3mgs (x2) Zelnorm wasn't performing the way it had been the first few weeks. The boost to 6mgs (x2) helped me quite a bit for several weeks to come.
I hope that helps you a little bit. Sorry I can't give you better news about the outcome after Zelnorm. Your best bet, based on IBS & divirticulosis, would be to increase your fiber intake.
Posted 1/14/2007 8:34 PM (GMT 0)
I can say that for the time being I have refrained from starting the Zelnorm. I have been exercising and using Activia and it has been working great and I lost 15pds!. The other thing I have been doing is halfing my meals, and eating lots of veggies in small servings and I feel great. Which is amazing since I just find out my dad has a terminal illness and am under an immense amount of stress. I have not tried it yet but have done some research for a product called Digestive Advantage_IBS. Like, I said I have not tried it, but the evals I have read are great and its available online and at Wal-mart or CVS. It not a drug which is nice. Good Luck
Posted 1/14/2007 10:07 PM (GMT 0)
Thanks a lot for your input, I really appreciate it.  I am presently taking Benefiber in the morning, and a stool softener in the afternoon.  I can't seem to tolerate raw vegetables, but I eat a lot of cooked ones, and fruit.  It never seems to make a difference with my constipation though.  I think I have had the IBS for many years without realizing it.  My doctor just kept telling me to eat more fiber.  But I would get so bloated and sore that I was just miserable.  Then I would resort to a laxative to relieve all the pressure.  Eventually I started waking up during the night with terrible bowel pain and D.  Sometimes I would feel like I was burning up, and just sweat & sweat.  Then I would be afraid to eat anything & just eat crackers for a few days.  Then the cycle would start all over again.  It seems everytime I find something that seems to help, it only lasts for a month or so.  Last February I had my first bout with diverticulitis, and it was awful.  By the time it was done, I was afraid to eat anything.  My pharmacist told me about Beano, and I use that after bouts of IBS because my stomach seems very sensitive when I first start eating again. 

   Does anyone else take diuretics for high blood pressure?  I was wondering if they make a difference as far as the C is concerned.  Sometimes I stop taking them for a day or two because I worry that there is not enough fluid in my system for a soft bm.  I try to drink a lot of water during the day, but it seems like I am just peeing it all out.

     Thanks again for your help.  I am relieved to know that other people have started out on a lower dosage of Zelnorm.  When I looked it up on the Net, it said it is usually prescribed in 2mg or 6mg.  It's reassuring to know that I can halve the dose.  Before the Zelnorm I tried Dicetel, but it didn't work at all.  My family doctor told me I could take as many as 4 stool softeners a day, but I found that more than 2 made me bloat & feel very uncomfortable.  The only reason why I tried the Zelnorm is because I don't know what else to do.  My husband got very sick last Spring and is unable to work.  I am so scared of getting sick myself and not being able to go to work, that I think I just make myself worse sometimes.  But since last summer, I seem to be going in cycles of about 3 weeks - more or less.  Luckily, the last one was the day after Christmas and I didn't have to work that day.  But the time before that, the D hit me just as I was leaving for work, and I spent the whole morning in the bathroom.  So now I get nervous that it will happen again.  I lost 20 pounds this past summer because I stopped eating for a few weeks.  Just had saltine crackers and flat 7-UP, and water.   Sometimes I wish there were food capsules we could take and not bother to eat at all.  Sorry that I am rambling, but this IBS leaves me with the feeling that my body has turned against me.  No one else in my family understands what it is like, so they think it just goes away.  Maybe I am the only one who feels this way, but it seems like I am always concsious of it - either worrying about the D or the C.  I just hope the Zelnorm will work for me and I will be able to feel "normal" again for awhile.

Posted 1/15/2007 3:04 AM (GMT 0)
No, Bella, I feel just like you about the food. I have reached the point again where I don't know what causes the problem and it runs in cycles with me too. I think it is important to keep the fluid intake but I know what you mean about the peeing. You didn't say if you have congestive heart failure and I hope you don't but in that case you would have to limit your fluid intake. I am having a terrible problem with fiber. I know it is supposed to eventually help but right now it is just making me worse so I have to take a laxative. My attacks seem to come on after I have had a severe acid problem with alot of heartburn and then it just hangs on. Maybe it it too seperate things. At this point I know nothing except that the fiber is making me worse.
Posted 1/15/2007 2:01 PM (GMT 0)
Well, Canyonbabe 711, your problem sounds an awful lot like mine.  After being diagnosed with diverticulosis, I really tried to increase my fiber intake, and it was a disaster.  I did learn that Benefiber is better for me than a psyllium type of fiber (like Metamucil).  I eat oat bran every morning, and add the Benefiber to that, with a bit of molasses.  I can't eat a lot of whole wheat bread, but I can eat the half and half.  I mostly just eat soups for lunch.  Any big meal seems to really bother me.  Strange thing is, when I first started with the oat bran, it helped for awhile, then stopped.  Same thing with the molasses.  Seems anything that does help, doesn't last more than a few weeks to a month. After an attack of D, I don't have a bm for at least a week, then it is just small, hard pellets.  If it doesn't get better after 2 or 3 weeks, I start getting the acid and heartburn, especially in the evenings.  I was tested to see if I had ulcers, but I don't.  I started taking Pepcid AC when I get that way, and it helps.  But not long after, I have the D and the cycle starts again.  No, I am taking the diuretics for high blood pressure - that and Lopressor.  I sure sympathize with what you are going through - I have had so many doctors tell me to eat more fiber - to the point where I even just tried drinking dietary supplements, but then I got D anyway.  I am crossing my fingers that the Zelnorm helps, at least for awhile.  Have you tried Benefiber or Citracel (am not sure of the spelling on that one)?

Posted 1/15/2007 9:14 PM (GMT 0)
I have some Benefiber and it bothered me. I bought some of those tablets and it said to take 2 which is only 4 grams of fiber and it was terrible. I was thinking about going back to Metamucil. I do have the cookies and they don't bother me but they don't help either. What really kept me regular were the Quaker breakfast bars, the square ones but now my stomach is in such a mess taht nothing is working. For months I am OK and then wham it starts up. strangely enough about the same time of year but can't trace it to anything. It isn't because I eat differently because the holidays have not even arrived. Holiday stress is not a factor since I pretty much ignore them because I really don't have a family to share them with. Well, this too shall pass. I hope the Zelnorm works for you. I do feel mine is all tied up with spasms as my body seems to have lots of little spasms frequently
Posted 1/17/2007 5:23 AM (GMT 0)
I totally know what you mean about worrying that attacks will happen again and again. In fact I sufferred from severe anxiety for a long time to the point that i couldn't leave the house and still often worry myself into attacks. In fact i think i did that very thing tonight. i have awful cramping as we speak. the whole experience can be so scarey. I had been taking levsin and just took my first levsid and am trying a heating pad. So much for feeling great.

I agree that this seems to come in cycles. I hate this so much I can't even tell you. I just want to be normal again. i cant say why i panic so much during an attack but its really very scarey for me. i wish some of you were online. I know i should try fiber or zelnorm or something but I am so scared of what these will cause that i am afraid to try. does that make any sense? I was doing well on activita yougurt but ran out and have been too busy to return to the store.

Yes, stress and emotions are major ibs triggers as are pms and ovulation i have found. I have got to find a solution. We just found out that my father has intercissal pulmonory disease and will most likely need a lung transplant. The last thing I need is ibs!I have enough to worry about with my dad, finances etc...
Posted 1/17/2007 3:44 PM (GMT 0)

I haven't tried the Benefiber tablets - I use the powdered one and just add a spoonful to my cereal in the morning.  I really should use it more often during the day but don't usually remember.  I had to stop taking the Zelnorm - it quit working after the third day anyway.  But I got terribly dizzy and yesterday morning was nauseaus- thought I might have to leave work, but it finally passed.  Canyonbabe 711, have you tried anti-spasmodics?  I don't know anything about them except that they were recommended on one IBS website.  I guess I will try the Quaker oats breakfas bars and see if they will hep - at this point I don't know what else to try.  Sorry to hear about your dad, and your financial problems, Scared 2getsick - I know how you feel though.  When my husband got very ill last year, and was stuck in a cubicle in the hospital emergency ward, waiting for a bed, I spent a whole day running back and forth to the washroom.  What an awful day!!  I have been fortunate enough though to be able to keep working - especially since my husband can't anymore.  I tried to explain to my doctor about the anxiety this ibs causes - but I really don't think anyone can understand if they haven't had it themselves.  That is why I am so grateful for this message board.  Just being able to share experiences with all of you helps.  And I am learning some things.  Like I used to wonder why I would get stomach problems at the same time I got my period - now I know.  I am realizing now that I have had this a lot longer than I thought - just didn't know it.  Hopefully, one of us will come across something that works on this thing - we'll just have to keep trying!

Posted 2/2/2007 3:12 PM (GMT 0)
Have been on Zelnorm for a little over a month.  So far, so good.  The only side effect has been gas and a little headache during the 1st few days.  Took about 2 weeks to really kick in but am feeling great now.  But I have also taken other steps to maintain good health because no drug can be a miracle by itself.  I take Fibersure once a day, drink water and exercise (really execise, treadmill 2 - 3 times a week).  Have Celiac Disease so I have to watch what I eat anyway.

I also believe Zelnorm is for IBS-C only.  And I have tried Levbid and Levsin but they are constipating and never stayed on them for any length of time.  Maybe your doctor is trying a new combination hoping one will cancel out the bad effects of the other.

Posted 2/2/2007 4:22 PM (GMT 0)
Hi thankfulinNJ,
Welcome to HealingWell! :-)

Thank you for sharing your experience with Zelnorm. You are absolutely right in taking a fiber supplement, drinking lots of water, and exercising regularly for continued health. Too often those get overlooked when they are fairly easy to implement.
Anyway, we hope you stick around and continue to contribute. Take care.
Posted 2/2/2007 8:44 PM (GMT 0)
Bella, I have the Levsin and it works when I have cramping. Right now I am not having a problem. Mine really does come and go so much that it is hard to get a routine for anything. The one thing that I do have frequently is the buring feeling in my colon when I wake up in morning. Once I am up and moving it goes away especially after I have been to bathroom, even urinating. I don't quite understand this. I bought some little packages of Fiber One snacks but they do the same thing to me. Fiber like that just really feels like my whole insides are on fire or being irritated. I think I will jsut have to stay with the prune juice even though that can cramp me up. Amazing how different we all are inside but then look at us ouside and we are all different so I guess it is not so strange.

Zelnorm at half a 3 mg made me so dizzy I could not get out of bed for a couple hours.
Posted 2/6/2007 3:56 AM (GMT 0)
Hi all- I have IBS-C and I have been on Zelnorm for four years.   4 years .   It's helped me live my late 20s in relative normalcy.   It's also been there for me through 2 pregnancies - including breastfeeding.   I thought I should share my story. Five or six years ago, I just stopped "going".   Over the course of the next year or so, I tried it all; fiber, fruit, water, and laxatives (both ends - ew).   These things would work for a little while, and then my body would get used to them and the results would go away.   After months of going through the same motions again for my doctor to prove I had tried it all, he finally gave me the lovely flex sigand diagnosed me with IBS-C.   and it all was worth it, because I got this wonder drug.   I started at 6 mg 2x/day.   Half an hour after the first pill, I was in the bathroom.   (This was a miracle for someone who at that point had resorted to taking three correctol with her breakfast of apricots and shredded wheat every morning.)   Sure there was be cramping and a little D once in a while, but good God!   I was pooping!! I was worried that my body would get used to the zelnorm, too - actually I was terrified.   However, the opposite happened.   The longer I took it, the less I needed to get the job done.   There were periods of weeks that I didn’t have to take any at all and I was still regular! Now comes the problem…   it has stopped working.   As recently as three weeks ago, I was taking 1.5mg (one-fourth of a 6mg pill) once every four or five days and it was enough.   Now nothing.   Beginning birth-control pills again and a long weekend out of town with air travel, lots of stress, big meals and tons of wine kicked me into a 3 week bout of C.   I am back up to the full 6 mg 2x/day and still nothing.   Honestly, I had forgotten what this was like. After the past week,  I can tell you that it is possible to live on Kashi GoLean Crunch cereal and Plumsmart juice– which are both actually very good, so go get some!  But it's not quite doing the job. As suggested by some of your postings, I will try less of the drug for a while and hope.    Good tummy health to you all!
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