IMPORTANT NOTE: Zelnorm (tegaserod maleate, also known as Zelmac) has been withdrawn in many countries, including the US, Canada and Australia, due to a retrospective study which linked Zelnorm to heart problems. Both the manufacturers Novartis and the US Food and Drug Administration have made statements on the issue. Zelnorm/Zelmac is still available in a number of other countries. This is how Novartis explained the data which led to the withdrawal of Zelnorm:
'The data, which were reviewed by independent experts, showed that events occurred in 13 out of 11,614 patients treated with Zelnorm/Zelmac (0.11%), compared to one case in 7,031 placebo-treated patients (0.01%). All patients affected had pre-existing cardiovascular disease and/or CV risk factors.'
This is the advice from the FDA to anyone who is still taking Zelnorm:
'The FDA is currently advising patients who are using Zelnorm to contact their health care providers to discuss treatment alternatives. Patients who are taking Zelnorm should seek emergency medical care if they experience severe chest pain, shortness of breath, dizziness, sudden onset of weakness or difficulty walking or talking, or other symptoms of a heart attack or stroke.
FDA will work with Novartis to allow access to Zelnorm as an investigational drug for patients with no other treatment options where the benefits may outweigh the risks. FDA has also indicated to Novartis the possibility of considering limited re-introduction of Zelnorm at a later date if a population of patients can be identified in which the benefits of the drug outweigh the risks.'
I will update this page if there are any further developments.
Zelnorm (tegaserod maleate) was first approved by the Food and Drug Administration in the United States in July 2002. It was originally approved for women with constipation-predominant IBS only, but was then also approved for chronic idiopathic constipation (chronic constipation with no known cause) in both men and women under the age of 65. In addition, a recent study also showed that Zelnorm may be effective in the treatment of alternating or mixed IBS, which means IBS that creates both constipation and diarrhea.
Zelnorm increases the movement of stools through the bowels, and is only available on prescription. Zelnorm works by increasing the action of serotonin in the gut, which leads to faster motility. It comes in tablet form and is intended to be taken for short periods of a few weeks/months at a time rather than for an indefinite period, as the effects of Zelnorm seem to wane after the first few months.
Zelnorm is known as Zelmac in some countries, but it is not available worldwide and has been denied a European licence. Zelnorm was withdrawn in the USA, Canada and Australia in 2007.
Zelnorm Side Effects
The most common side effects of Zelnorm are nausea, diarrhea, headaches, gas, fatigue, heartburn and abdominal pain.
How successful is Zelnorm in clinical trials?
A study published in the journal Digestion in 2005 looked at the efficacy of Zelnorm in primary care constipation-predominant IBS patients. IBS sufferers were given 6mg of Zelnorm twice a day for 12 weeks, and were asked about their levels of abdominal pain/discomfort, bloating, stool consistency and frequency, and straining.
After the 12-week treatment period, the 166 remaining patients were assessed. On average, abdominal pain/discomfort and bloating were reduced and stool frequency was increased from 0.78 to 0.97 stools per day. Zelnorm was well tolerated, although side effects of headaches and diarrhea were reported in some patients.
Conclusion: Zelnorm is an effective treatment for IBS with constipation. Pubmed article: Layer P, Keller J, Mueller-Lissner S, Ruegg P, Loeffler H
A double blind, placebo controlled trial was published in the journal Gut in 2005 Zelnorm proved to be more effective than the placebo in controlling all aspects of IBS symptoms, including abdominal pain/discomfort, bloating and constipation. It also produced greater levels of satisfaction and improved quality of life.
Conclusion: Zelnorm produces rapid and sustained relief of IBS-C. Pubmed article: Tack J, Muller-Lissner S, Bytzer P, Corinaldesi R, Chang L, Viegas A, Schnekenbuehl S, Dunger-Baldauf C, Rueegg P
A review of previous studies was published in the journal Expert Opinion on Pharmacotherapy in 2004. The review examined eight previous phase III clinical trials involving more than 5,000 IBS sufferers. It was found that patients who had been treated with Zelnorm showed an improvement in main symptoms of pain, discomfort, stool consistency and bloating. Zelnorm was generally well-tolerated, although mild diarrhea had been reported in a minority of patients, and severe diarrhea requiring hospitalization was also reported in a very small minority of cases.
Conclusion: Zelnorm shows consistently significant results in reducing pain, discomfort, constipation and bloating. Diarrhea is reported in some cases. Pubmed article: Patel S, Berrada D, Lembo A
REVIEWS OF ZELNORM
Review by Rachel
I was on Zelnorm for about a month. After taking it all symptoms of my IBS went away and I was normal finally. I was so angry when they took it off the market, it was the only thing that worked! I've tried so many things but nothing works. The only thing I can do now is take an anti-spasm medication which doesn't always work. They should have patients sign an agreement stating that they understand the risks but are willing to take them and give us the medicine!
Review by Wagiah
I came accross this site as I was searching for Zelnorm alternatives. I have been dealing with IBS with constipation for 13 years. I am a 31 year-old male. The only time in the last 13 years I can remember where I felt 'normal' was the period I was on Zelnorm for almost a year. I felt great! I used to get the headaches that many other people reported, but I did not care about the once a week headache, I was actually normal as far as my bowels and IBS were concerned. I was so happy at that time. When I went to get my refill and the pharmacist told me it had been discontinued, I went home and cried to my wife.
I just want to say, I feel for you all, and I have tried every single possible 'cure', from teas to fiber to special diets, and nothing works. I finally gave up. Now I rely on laxatives to have a bowel movement every 10 days or so and chew on Gas-X pills all day long along with probiotics...what a life.
Review by Debbie
I just want to say that I used to be on Zelnorm for constipation, and what a miracle drug it was. I cannot believe they chose to wipe it off the counters because of a few people who may have had previous heart conditions. I do understand for the people with heart problems, but what about the majority of people that it worked for. I am one. I am so disgusted. There is no alternative from any of the drugs on the market. I go weeks without a bowel movement only to rely on over-counter-remedies. Or again it's eat more fiber. Drink more water.
Almost everyone wants Zelnorm back. I cannot afford to miss any more work due to my condition. It has affected my blood pressure and made me gain weight and given me bloating and headaches, not to say migraines. I believe these conditions are all related to the IBS because of all the toxins that a person cannot get rid of. I say let's get Zelnorm back. It's the best. I've had to beg doctors to give it to me and all I get is 'It's off the market.' Please. Someone. Help bring this back.
Review by Kelly
As I have read many times on here - please give us Zelnorm back. I am a short lady, four foot ten, and 32 years old. Prior to trying Zelnorm my bowel movements were near non-existent - once every three weeks on average. It was and now is miserable. I went to several doctors with the problem and just got blown off: take fiber, exercise, eat more roughage, I am sure you all heard the stories. Or people who flat out did not believe that it could be possible to go that long.
Finally a doctor gave me a referral to a gastro specialist. They did not want to start me on anything until I was cleaned out. So they gave me a script for Miralax, to no avail. Next was Colace, more pain and bloating but nothing. At the end of three weeks I get to the point where I cannot do anything, it hurts to move and I cannot really eat anything. So now what does he try? Golytely, which was I must say the worst experience I ever had after all the years of laxatives and stool softeners, red oil stuff and all. I started drinking and drinking and drinking, I drank the whole gallon jug of crap and was crying terribly, it wasn't working yet and I had a gallon of this liquid in me. Finally the explosion came and I was in the bathroom for what seemed like forever.
After this episode and telling the gastro all that had happened finally he gave me Zelnorm. It was a miracle, I was able to go almost every day. I felt great, I had so much energy, and my skin color was incredible. Within three months I had never felt better in my life. I had dropped over 30 pounds, it was just amazing.
I went on vacation with my hubby, we came back and I went to pick up the prescription that I called in before I left. The lady said it was not ready, and she went to the pharmacist to find out why. He walked over as if he was telling me my best friend had just died. It had been pulled from the shelves.
I immediately called my gastro to ask why! He said they were still offering it but I would have to go through a series of blood tests and evaluations. OK whatever, I needed it, so I paid the co-pays and deductibles for three months to do exactly everything they wanted, had my blood pressure checked every day at CVS to write it down, but I never got my Zelnorm. Here we are a year later and I have put all the weight back on and then some. I hardly ever get to go, one or two times a month. I still try taking over-the-counter products but with little results. Amitiza is a joke. I have started taking Align, it has helped some but it is unpredictable, I think it kind of works like Xenical, and if I eat a lot of fatty foods it helps a little. Just wanted to share my story. I'm a mother of four in NC.
Review by Kath
Talking to each other (fellow IBS sufferers) offers some consolation. Talking to the FDA, however, is the only way to create real change. My email, to the email address posted for such on the FDA homepage, follows. I hope I won't be the only voice they hear from!
Every gastroenterologist consulted by anyone I know and by 99% of the people on all internet messageboards, and all of us sufferers of severe IBS, are left nearly despondent by the lack of the one drug that produces results - Zelnorm. The fact that it has potential adverse effects on people with or prone to heart conditions should be dealt with by prescribing physicians and appropriate warning labeling. To the rest of us, I see less than a fraction of a percentage of adverse effects being witnessed by anyone in my three months of extensive research online and in person.
You want a drug to ban? Get a load of the disastrous effects many of us have suffered at the hands of the one 'alternative', Amitiza. It, however, remains on your approved list while Zelnorm, safe and without severe side effects to 99% of those properly prescribed it, is out. This is nuts! Gastroenterologists across the country to whom we've all gone near tears since Zelnorm's demise, all throw their hands up at having to tell their patients 'Hopefully it'll be back. Other than the Amitiza, which in your case doubled you over with severe pain, there's nothing to prescribe'.
Please, please have your organization read the letters and comments on the following website. And hear the pleas of millions of us across the country!
Reviews of Zelnorm: http://www.ibstales.com/zelnorm.htm
Reviews of Amitiza: http://www.ibstales.com/amitiza.htm
I'm angry. And I have reason to be. Like millions of others, I'm sitting here tonight, and every day, having bloated to an additional eight pounds from having had a sandwich! My heart's healthy; I'm not a person at risk with Zelnorm - nor are millions of others who are so terribly affected by your decision. IF there were effective alternative medications without predominant and cessation-causing side affects, fine. But there are none. Zelnorm was it. Please return it!
Review by Amanda
I've had IBS for the last 24 years, although I wasn't officially diagnosed with it until I was about 22...before that, they said I just had a nervous stomach and I'd grow out of it. I suffer from both sides of the spectrum (ie: I get constipation and diarrhea). When my doctor put me on Zelnorm I was thrilled. No medication is a complete cure-all as I still had flare-ups, but they were so much more tolerable.
I was on Zelnorm for three years with no side effects and I was finally able to resume a normal life, and then they pulled it. Ever since then, my doctor and I have tried different medications that I had taken in the past, hoping that now that I'm on an anti-anxiety med as well that the combo will work. Well, it works for a little while, and then stops. Currently I'm taking Levbid, and it was working somewhat up until about a month ago. The FDA really needs to rethink putting Zelnorm back out there for us to use.
Review by Louise
I was diagnosed by my doctor with IBS and my response was what's that? His reply was that it simply means that no-one knows what my bowel will do next and that there's nothing that can be done about it! But after watching a few Zelnorm commercials I asked him to let me try Zelnorm. He had never heard of it and left the office to check it out with the pharmacy.
When he came back he wrote me a prescription of a 30-day supply taking two 6mg pills daily. This dosage was what the pharmacy recommended. I took one pill and saw immediate relief. It eased the bloated, very uncomfortable feeling I had had for months. I did not take the second pill for that day because I didn't need it. In fact I wound up simply taking the pill whenever I needed to take the pill and it worked out just fine for me that way.
Now that I cannot get Zelnorm anymore I have tried everything under the sun and absolutely nothing else works for me. I am now back to straining so dang hard to get a tiny hard pill passed that I often say that I believe I will die while sitting on the toilet struggling until my face is as red as a beet and I feel weak!
I am a healthy person, but I am 70 years old! I just had the lifeline screening done in July and passed all tests with flying colors and I resent the fact that the FDA has decided that I must go back to suffering with a blocked bowel just because someone who did not have a healthy heart had problems with the use of Zelnorm.
In my opinion that is not the fault of Zelnorm but instead the fault of the prescribing doctor, as well as the person taking the pill! The doc should have known that patient should not use Zelnorm the same way a healthy person uses it and that patient should have given some thought to how it affected him/her. Be fair FDA. Give us the Zelnorm back so that we can have a good life also!
Review by Marilyn
All my life I knew I was a person who suffered from constipation. To go without bowel movement for two to three weeks was normal for me as a teenager and young adult. About two years ago I finally had my first consultation with a gastroenterologist. What an amazing experience! He diagnosed me as a sufferer of IBS-C amongst other things and prescribed Zelnorm.
My first few days (as my body was adjusting) made me think do I really need this product. I was taking two tablets a day (think that's 6mg), and found that my problem had reversed itself. But my dear, dear doctor (bless his soul) told my to hang on and continue with the treatment.
I am so glad I did. I changed as a person. My mood improved. I am also currently on anti-depressants (Cymbalta), but Zelnorm had such a positive effect on me. I was happier, and I didn't feel so fatigued (I am sure it was the build up of all the toxins in my system for so many years). I felt lighter and I think I lost weight as I had regular and consistent bowel movements. I was convinced that I was meant to live my life a certain way, but that all changed when I started taking Zelnorm.
About six months into my treatment, we received a notification from our pharmaceutical suppliers (I work for another doctor) saying that due to FDA regulations, Zelnorm was not allowed to be distributed any longer. I immediately sent my script to our suppliers and got the balance of my prescription for Zelnorm before the rule came into effect. That saw me through for about three months.
Within four days of not taking the Zelnorm my old symptoms started coming back. I was at dinner with a friend one night and somehow the conversation turned to Zelnorm. She told me that she had a month's supply but had found that it did not work for her. She gave me her prescription. I was saved for another month. I tried so many other products. My doctor tried to prescribe other things but none of them worked. I even asked medical colleagues to source Zelmac overseas on their international travels - but I think my system was so severely messed up from the other meds and the cocktails I was taking.
It has now been six months since I last took Zelnorm (I sound and feel like a total addict - but I think that until you experience chronic IBS-C and find a miracle like Zelnorm you cannot understand the desperation and loss I am feeling).
I am not a drama queen. I am not a Type A personality. But right now I would rather die than hear that Zelnorm is not to be reinstated. I think what messed me up was being able to use the Zelnorm for a few months and experiencing life as a normal person. Had I never used Zelnorm, I would be none the wiser.
I live in Johannesburg, South Africa. I have sent emails to the FDA, to our local medicine's council. I have signed petitions, I have even sent an email to Oprah Winfrey. (Hey if anyone is to be heard and can make an impact, it is her). But all to no avail. I am running out of options with treatments. I do not know if or when Zelnorm will be brought back or any treatments similar. All I can do is keeping trying with the different treatments and forget about my life whilst using Zelnorm.
Review by Jessica
After having severe abdominal cramps and heavy menstrual cycles for many months, my GYN decided to do an exploratory laparoscopy to rule out endometriosis (because of family history) in 2003. After surgery, he stated that my problem was not gynecologically-based (although my birth control pills were not strong enough) but was IBS-C.
He immediately prescribed Zelnorm 6mg once per day, with the option to increase to twice per day (which was the normal dosage). I never had to increase my dosage. This was my miracle drug! It was the best thing that ever happened! All of the abdominal cramping and bloating was gone! I occasionally had some gas, but it was rare. I had taken Zelnorm for more than four years when it was pulled from the market...and I have been screwed up ever since!
For a while I tried Miralax, but it didn't help my symptoms, so I had to take Miralax plus an OTC laxative and Gas-X. Yep, I had to take three medications that didn't work very well to replace one medication that did it all! How much sense does that really make?
After six months of this insanity my wonderful GI doc (he's very easy to talk to and is compassionate about the situation) decided to try me on Amitiza. The first dose I took, within a few hours I was having the worst abdominal cramps of my life. I was so light-headed I nearly passed out and fell off the toilet, so out of it that everything was incoherent, and I had nausea and full body sweats!
I now take Amitiza whenever I am desperate...maybe once every four to six weeks! I have primarily relied on eating so much fibrous food it's nauseating. I battle the abdominal cramps and bloating on a daily basis. I have been in misery without Zelnorm! Please, please, please bring it back!
Review by Carrie
I have had IBS for about five years now and it is the only way for me to go to the restroom. I have to take Zelnorm. It has been a wonderful product, it has saved me!
Review by Shelley
I am 48 years old and I have suffered from IBS since age 22 when I gave birth to my second son. I was in and out of doctors' offices and nothing helped, not diet, exercise, huge quantities of water or laxatives. I have been taking Zelnorm 6mg twice a day before meals for about two years now. Zelnorm immediately relieved all my symptoms and I can't believe how wonderful it is to be regular again and to have a flat stomach without the constant bloating!
I will, however, add a huge caveat. I am concerned about the increase in heart attacks, angina, and strokes associated with this medication. I am not a candidate for heart attacks, yet in December I had a day of intense chest pain. I did not go to the doctor at that time, but made an appointment. Tomorrow (three months later), I go in for a stress test. Please, if you continue with Zelnorm, make certain you are under a physician's care and stay attuned to your body's signals. It may be that I need to quit Zelnorm, but I sincerely hope not as my quality of life is vastly better while I take it.
Review by DeLeath
Zelnorm was a miracle for me, I am totally lost without it. I have had severe constipation and bloating since I was about 25, and I am now 37. Once I started Zelnorm this was relieved four or five times a week. I want the FDA to put this back on the market. I am so miserable. Help! How can I get this prescription back?
Review by RY
I am a 26 year-old very active and healthy woman. Two years ago I started experiencing heavy bloating and extreme stomach/lower abdomen pain, even if I ate nothing for a whole day. I was diagnosed with IBS, then chronic constipation, and to this day all this is very upsetting. I think the fact that I'm a teacher has contributed to this problem, as I cannot use the bathroom as I need to, and often find myself holding on until I have some free time.
I have been on Zelnorm for two years, and it worked miracles for me. I was only taking it on a weekly basis (Saturday mornings) and it has given me great relief. I just found out this drug has been taken off the market as I was contemplating calling my gastro for a refill...what a bummer.
Review by Joan
I had been taking Zelnorm for over three years. It was a wonderfully effective drug for me. I am very upset that it has been taken off the market. I tried Miralax and it is terrible for me. Zelnorm has no substitute. I was only taking one Zelnorm a day. I had a nuclear heart stress test a while back (for another reason) and did very well. I am allergic to medicines and should not have to try things. This has been a horrible, worrisome thing for me.
Review by Greg
It has been way too long a wait - how much more time will it take to get Zelnorm back on the market? It is the only thing that works for me and at 0.11% chance of a heart attack compared with 100% misery without it I will take the risk. This is FDA nonsense!
Review by Mary
I want the Zelnorm back, it worked great for me and I never had any trouble with it. I'm sorry for those who did. My doctor has tried other medications but they don't work. I am back to taking too many laxatives just to go. The Zelnorm is the only thing that worked for me. I'm not happy about them taking it off the market just because a few people had a problem with it, I need it.
Review by Robin
My daughter was diagnosed with IBS about three years ago. We tried over-the-counter medicines, but nothing worked. Then her doctor put her on Zelnorm the wonder drug. Her IBS became 100% better. Now that the FDA has taken it off the market she is worse than before. She can't eat without pain, she is going away to college in one week and the doctors put her on Bentyl, which isn't working.
I hope they bring Zelnorm back, it's not fair for the people that Zelnorm worked for. As a mother I don't want anything to harm my daughter, but I also don't like to see her in constant pain.
Review by Laura
After taking this medication for two years I didn't realize how much better I felt on the Zelnorm until I'd been off it for a month. I convinced my primary care doctor to order it since the gastroenterologist felt I wasn't a candidate for it. I didn't have any side effects. I hope it returns.
Review by Becky
I have suffered from IBS for more than half of my life. I got to the point where I would break out in a cold sweat and it became increasingly difficult even to breath. Zelnorm saved my life because I couldn't take it anymore. Now that it is off the market my symptoms have returned with a vengeance. I am only 29, I can't live the rest of my life this way. The only problem I had with Zelnorm was the cost since I am a single mother on a fixed income. I still feel that it was worth it and I will scrimp and save in the hopes that it will soon be returned.
Review by Matt
I started taking Zelnorm about a year ago. I had IBS with chronic constipation and diarrhea. Not long after I began taking it I began having severe gastrointestinal symptoms. These included vomiting, diarrhea, stomach cramps and dehydration. I have been hospitalized several times for these symptoms. The doctors did not realize that Zelnorm was the cause of all these problems. I have had many tests to try to figure out what was going on.
Recently I was hospitalized for three weeks because of vomiting, severe diarrhea, abdominal pain and chest pain. After three weeks of testing I was diagnosed with segmental colitis. This is where the blood flow to the colon is compromised and the colon swells. It may never heal for me because I am a kidney transplant patient with diabetes and my immune system is compromised.
Zelnorm has given me more trouble than help and I have lost a big portion of my life because of it. I was married two years ago and my problems started right after my wedding. This kept me in the hospital for nine out of 12 months. It just wasn't worth it for me.
Review by Debbie
I was on Zelnorm 6mg twice a day for two years prior to the recall. It helped greatly with my IBS with constipation and bloating. I was told by my GI that I have a motility problem related to my fibromyalgia. I tried Amitiza but it did nothing for the bloating and gave me headaches every day. I saw my GI today and he recommended probiotics. He said that there is a possibility that Zelnorm will return some day.
Review by Cheryl
I have been on Zelnorm since it came out. I have had IBS all my life. I am now 50. I was afraid to go anywhere or do anything. Zelnorm gave me a normal active and vital life. Since Zelnorm was withdrawn I have tried everything, but nothing works! I am becoming a hermit again, in constant pain, bloating and discomfort. I know how to eat and what, but it is not enough. There is is no quality of life without Zelnorm for me.
Review by T
I'm so glad I stumbled upon this site. I thought I was the only person going through this condition and having difficulty explaining it. After reading some of the comments, I see people are having the exact same problem. It is, at the very least, reassuring. OK, enough with the mushy stuff, here is my testimonial.
Zelnorm has been a tremendous help to me. Actually a saving grace. I suffered for about 10 months before finding it. My doctor seemed to try everything and nothing worked. Before this condition I was active in sports and worked out often. Then it started and my activities dropped to zero. All I could do was barely get up for work, suffer all day, then go home. I was miserable.
Then I started on Zelnorm and felt immediate improvement. After about two and a half months I was down to one pill a week, but then it was recalled. Now all of the symptoms of IBS are back and my quality of life is suffering greatly. No sports or anything because I'm too tired and stiff and achey. Even my performance at work is suffering because I just don't feel good...all the time!
I will definitely let the FDA and Novartis know how adversely this recall has affected my life!
Review by Maria
I had been on Zelnorm for three months, and I had two strokes during that time. I had no previous cardiac issues. I am glad it has been pulled from the market.
Review by Nancy
It seems like I have been constipated all my life. I worked as a school teacher for 27 years and I only had BMs on Saturdays after several cups of tea and several hours of relaxation. I am only now realizing how it has affected me. I was often tired and grouchy. It felt like chronic fatigue. I was even treated for depression at one time.
I thought that my irregularity was a symptom of my slow metabolism and my busy life (no time to go when I felt I needed to). For years I just didn't feel good. I tried high fiber diets and Metamucil and I got gas but not much relief. I tried very hard not to get addicted to laxatives but I took them occasionally when it was really bad.
Then came Zelnorm. After my first colonoscopy, my doctor prescribed it and I have been delighted with the results. I started with two 6mg pills a day, then one a day and then one every other day over a six-month period. Now I take it two or three days in a row and then skip three or four days or so depending on my symptoms. Along with a high-fiber diet and a supplement of essential fatty acids I am managing very well.
I have never taken anything that has helped me like Zelnorm. No side effects, just blessed relief. I have a few months worth of pills and when they are gone I don't know what I will do. I just hope that it can returned to the market or that an alternative that is just as effective can be found.
Review by Sarah
I have been on Zelnorm since it first came out. It was the only thing that helped me with IBS-C. Since they took it off the market I have tried everything with no help. I'm suffering, and I'm going back to the doctor to see what I can do. I wish I had Zelnorm back. I'm 59 years old and I have always had this trouble. Zelnorm was the best.
Review by Bert
This was the only drug to have worked for me in 47 years of suffering from IBS-constipation. I for one, need and want this drug reinstated for those of us who desperately need it for a normal life.
Review by Abdullah
In June 2005 I started having abdominal pain, bloating and sometimes diarrhea or disturbing constipation. I visited my doctor, who concluded that I am suffering from IBS. My doctor gave me some laxatives but there was no improvement really.
Then my doctor gave me this golden, fantastic and wonderful drug Zelnorm. I started using it in February 2007 and really from the first pill my IBS started to vanish. I kept using it until the FDA pulled it from the market. I started collecting the remaining Zelnorm from the pharmacies and I now have six boxes containing 180 pills of Zelnorm, which cost me about $200. I will use it if needed to treat the IBS-C.
I hope the FDA will feel some mercy for IBS sufferers and will again give the approval for this golden Zelnorm. The FDA has already approved a new contraceptive pill stating that this new medicine can cause heart attacks or strokes, and at the same time they withdrew Zelnorm because of the same issue.
Review by Joy
I am so desperate for Zelnorm and I'm very saddened that the FDA took it off the market, it was a dream come true for me. I am now in so much intense pain I think I may have to quit my secretarial job. It is now hard to sit up at my desk throughout the day because my stomach is in such intense pain from having no BMs.
Review by Linda
I had been suffering with extreme abdominal pain for about three years. I had suffered from constipation my whole life and had learned to deal with it by drinking a lot of water. When my pains started getting worse and going into my back, arms, shoulder blades, etc I thought I was going to die. I started noticing that sometimes I would get the pain a couple of hours after eating, or sometimes even 12 hours after a meal.
I finally decided to go to the doctor and see if this was normal. I had an endoscopy, CT scan, hydroscopy, and colonoscopy, and they finally diagnosed IBS with chronic constipation. I was given Zelnorm and also an anti-spasmodic. This is what actually cured my extreme abdominal pain.
I have been taking Amitiza but it has a lot of side effects and I am experiencing a lot of nausea, swelling of the legs, dizziness, etc. I have only been taking Amitiza for a couple of weeks and since I am blessed enough to live on the border with Mexico I am going to go to Mexico and buy Zelnorm again since it's the only prescription that relieved all my IBS symptoms. Zelnorm rules!
Review by Leslie
I have been on Zelnorm for approximately six months, and I feel better than I have in years! I suffered for as long as I can remember with bouts of diarrhea and constipation (mostly constipation). When I was 31, I even had to have a bowel resection because the constipation and pain were so great.
After the surgery I was OK for a couple of years, but then I began to experience the same symptoms of pain and constipation. It was miserable...until I started Zelnorm. I just cannot believe that they have taken this medication off the market. I am 40 years old and in great health. I take no other medications, exercise regularly, am a healthy weight, have low blood pressure and low cholesterol. I also do not have a family history of cardiac problems. So there is no reason for me not to take it, I will accept any risk involved.
It just really angers me that those of us who take responsibility for our own health and actions are punished by those who are lazy, stupid or just don't care. Not to mention those whose idea of making money is a lawsuit of some sort. I have a stash of Zelnorm that I am going to stretch out as long as possible (one pill every three days - should last almost a year), hopefully it will be back on the market before I run out.
Review by Linda
I was diagnosed with IBS after the doctors ruled out everything else. My symptoms included alternating diarrhea and constipation, severe bloating and the worst - intense pain just under my right rib. The pain was deep, dull and constant and during the worst attacks it would radiate through to my back.
After years of pain, suffering and ill-health my doctor prescribed Zelnorm. It was a Godsend, a blessed miracle...I swear, angels sang every time I took it and the pain went away, usually within 20 minutes. After using Zelnorm for two months my symptoms went into remission, I had a happy belly and I only used it if I experienced a flare-up. It was so beneficial! Before Zelnorm was pulled I was in remission for seven months.
Sadly, two or three days after my pharmacist told me that Zelnorm was off the market I experienced a flare-up, and with no relief, I have been suffering ever since. The main symptom I have now is the extreme radiating pain under my right rib. It sucks! I need my Zelnorm!
Review by Dee
I have been on Zelnorm for several years and it's the only med that seems to help my IBS. When I had nothing to take I became bloated and miserable. I am deeply saddened to learn that I can no longer get Zelnorm from my doctor. I hope that this great med becomes available again, and soon.
Review by Jennifer
After my son was born I had my gallbladder taken out due to gallstones. Ever since I have suffered with severe constipation and horrible gas. I would go four or five days without a BM and I would throw up at times because I was so bloated. I have been on Zelnorm for about a year now. It has changed my life and everyone in my family appreciates it. I was in tears when I heard they were taking this product off the market. I have tried everything, and this is the only thing that has ever worked for me. I wonder if I can buy this in Mexico?
Review by Thea
I have had IBS since I was a teenager, but back then (in the 60s) it didn't have a name. Almost all my life I have suffered and had my life majorly altered by this very embarrassing and depressing illness. I couldn't ever go anywhere without knowing where the bathroom was and it had to be close by! Most of the time I felt too sick to ever want to go anywhere and I was always sick in bed or in the bathroom.
I have IBS-C and I have been taking Zelnorm along with Paxil for over three years now and I have to say that Zelnorm has saved life. I have never had any negative side effects from this drug. I only have a few pills left and now that it's been pulled from the market I feel like my life will soon go back to horrible sickness and pain. I don't know what I am going to do. I pray that the drug company reviews this wonder drug and reverses their decision to deny all the people it helps to lead a normal and productive life they were never able to have without it. Please bring this drug back!
Review by Danyel
I am a 27 year-old active healthy female who was diagnosed 12 years ago with IBS with extreme constipation. The six different gastroenterologists I went to also mentioned colonic inertia. I went through extensive testing at the University of Minnesota. I was prescribed Zelnorm two years ago before my wedding, and of course, it made me more regular than I had ever been.
I did however notice that it made my periods horrible and I had painful bloody diarrhea every month with my period. I was even rushed in an ambulance while on vacation because I was so sick. I went back to the gastroenterologist as well as the gyno, five different gynos to be exact, and all of them said nothing.
Finally I decided to go off the Zelnorm because I was told that it was not yet approved to take if I were to get pregnant, so I stopped right after the wedding. I was again sick with constipation and bloody diarrhea, so I went in for laparoscopic surgery and they found extreme endometriosis attaching my colon to my uterus. I have since been through six months of induced menopause and two surgeries to remove all of the scar tissue from my abdomen.
Review by Donna
I have been diagnosed with IBS and I have had it since the birth of my first child 39 years ago. After suffering from constipation, and taking pills such as Ex-lax or Correctol for overnight relief, I was finally elated to discover Zelnorm several years ago. I am happy to say that I am one of the lucky ones who has not had any side effects from this drug, only wonderful results.
I take one pill (6mg) early every morning before any food. Usually within one hour, I have relief from the food and drink from the day before. Without this medication, I would have relief only after five or six days and it was a miserable wait, with bloating and a feeling of heaviness and just a general feeling of being tired.
I understand if some people can't tolerate certain medications, but to remove this drug from the market and deprive the individuals who have been helped so much is totally unfair. I have regular check-ups and blood labs done every six months. Now I guess we are at the mercy of over-the-counter laxatives, once again, which cause cramping, and bloating, unreliability, more doctor visits, more tests, and more contributing to the wealth of more drug companies.
Review by Greg
I have had IBS symptoms for several years and took anti-spasmodic drugs and other treatments, but Zelnorm saved me! I take it two times a day and now I am not sick all the time, it makes me normal again. Very depressing that the FDA took it off the market with only 0.11% of the people in the study taking it reporting problems. I will try to get it overseas I guess.
Review by Mollie
I have been on Zelnorm for a year and a half and it has worked wonders for me! I was diagnosed with IBS-C several years ago and tried fiber/laxatives and eventually Zelnorm and that did the trick! I couldn't imagine life without it, and now I have to. I miss it already as I was almost at the end of my prescription when I heard the awful news. When off of Zelnorm I am bloated and in lots of cramping pain.
I just got a prescription for Amitiza and I am trying that. It's been two days and I'm having no side effects. I'm still bloating, but not in as much pain as before. The constipation is not as bad, but not as good as on my beloved Zelnorm. Hopefully it will improve...I would give anything to have that lovely drug back on the market!
Review by Naomi
I can't believe they are taking Zelnorm off the market. I don't think that the serious problems talked about (heart attacks and strokes) should be minimized, but I also realize everybody's body chemistry is different. No drug is good for everyone.
About a year ago, I started having the most horrendous stomach pains - usually most noticeable in the middle of the night - that made it impossible to get a good night's sleep. I went to the emergency room several times - it felt exactly like gallbladder attacks I used to have before having it removed 15 years ago. People at work would cringe because I was walking around bent over all the time. I would beg them to walk on my stomach to relieve the pressure. If an alien head had popped out of my stomach, I wouldn't have been the least surprised.
I had emergency room visits with x-rays, sonograms, etc and they told me they found nothing wrong, but I knew there was something. They suggested trying fiber supplements with psyllium, which made it worse! I was actually convinced that my gallbladder had grown back! Finally after much begging and bitching, my doctor referred me to a gastroenterologist. After more tests, they told me I had IBS. I didn't really believe it, it truly felt like there was a mass in my gut, but I decided to try the Zelnorm.
It was truly a miracle - I had major relief within days. I was also fortunate that I didn't suffer with diarrhea - had a lot of gas, but I figured it had been trapped for months and had to get out! Gross yes - a relief - yes. I try to be careful what I eat and am down to one 6mg tablet every other day, but I am literally scared of what will happen when my prescription runs out! I cannot live with that pain again - cannot.
Review by Susan
I had been on Zelnorm for two years prior to it being pulled off the market. Prior to it being prescribed, I would go up to two weeks without a bowel movement and my stomach would look like I was in the early stages of pregnancy. I eat well, exercise, drink water, you name it, I did it. Once I took the Zelnorm, I would go no more than two days without a BM and had no constipation. It was a blessing!
Now that they have taken it off the market, my doctor said to take Miralax, and I have found it is now over-the-counter. I have taken it for five days and I have yet to have a BM. I have gas, but nothing else. I am eating a lot of water-logged fruits and vegetables to get my daily fiber but at the same time I don't want an overly-distended stomach. I am hoping that the FDA will reconsider putting it on the market and that physicians will take a patient's medical history into account when prescribing it to them.
Review by Melissa
I can't believe they are taking Zelnorm off the market! For as long as I can remember I've had problems digesting food. After a series of tests ruling out other medical factors, I was diagnosed with IBS and prescribed Zelnorm. Zelnorm was the best thing to ever happen to me. I can digest food like any other normal person and I don't feel tired, bloated and bogged down.
My IBS acts up mostly during times of stress, so I do not take the medication on a regular basis, but during times of severe discomfort I would take Zelnorm and it seemed to be the only thing that worked for me. I've tried herbal remedies like peppermint tea, and even a change in diet. Nothing works like Zelnorm.
Review by Bonnie
I am a big, big fan of Zelnorm and I am very upset that it is now being taken off the market. I have suffered from chronic IBS for 10 years. I have been taking Zelnorm for almost a year and a half and I have had no side effects. It has changed my life for the better. I take one 6ml tablet twice a day along with a stool softener and a bowl of Fiber One. It does the job and I now feel like a normal, healthy person.
Review by Anita
I was prescribed Zelnorm for my IBS with constipation. I was one of the unfortunate ones who had cardiac problems with its use. On the fifth day of taking it I began to have terrible heart palpitations. I normally have low blood pressure and no heart problems whatsoever so this was alarming to me. My doctor was puzzled by it because he said he never had anyone have this sort of side effect with using Zelnorm.
I immediately quit taking it, even though he wanted me to just reduce my dosage (I had already reduced it myself). I have a sister who has been on it for a while and she is distressed about it being taken off the market. I just want others to know that it isn't a warning to be taken lightly. There really can be bad side effects from Zelnorm for some people.
Review by Jenny
I'm 28 years old and I have suffered from IBS since I was about 12 years old. I always had IBS-diarrhea and had to plan when I was going to go out with friends very carefully so I could plan when and where I would be able to let loose! It was extremely painful.
This all changed four years ago - like a switch. Suddenly, I had severe constant constipation. I could go five to seven days (10 days on vacations) between BMs and sometimes my pants wouldn't even fit because I'd be so bloated and stopped up. Numerous doctors told me to try fiber pills/supplements which all made it much worse. I exercised daily, drank water, ate tons and tons and tons of raw vegetables, ate dried fruits, and only ate bread or pasta if it was whole grain and I could see the little bits of roughage in it. Nothing helped.
Then I became pregnant in fall 2005 and now my BMs were seven to 10 days apart. My doctor was absolutely no help and would just tell me I looked terrible when I'd come for my pre-natal visits. After I had my daughter I had a new problem. From the baby pushing down for so long and from the enormous amount of stool pushing so much on my vaginal walls, I now couldn't stand for more than a few minutes at a time without pain.
Five doctors and four months later, an internist prescribed Zelnorm. She said it had worked for all her patients but one. I gave it a try. The bloating was so bad that I'd take the pill at night before bed and wake up a couple hours later and actually have a red line across my stomach from the elastic band in my underwear because my stomach had swollen so much from the bloating. The terrible gas got even more persistent.
I was still totally constipated and only a little would come out once in a while, a couple times a week maybe and it was bloody. I was dizzy and light-headed and my heart was racing; I felt like I was going crazy! So I called my doctor and left her a message about the bloody stool and she had her nurse call me back to simply say stop taking the Zelnorm and see a gastroenterologist.
Since then I've seen another gastroenterologist who did another colonoscopy (found nothing of course) and said he had never heard of anyone having such trouble on Zelnorm and it should have solved all my problems. Now I see that it's been recalled and others have had my problems so I'm not the only one! Then I saw a physical therapist for three months to help with the pelvic pain and try to help with the constipation. It has helped some and I'm able to stand for longer periods of time but the constipation is just awful still.
Review by Karen
I have spent 10 years with digestive problems due to IBS. I have been prescribed everything under the sun, and finally I was given a prescription for Zelnorm. I don't take it every day, only when I need it to flush out my system. I think it was a great product and I don't know what I will do now. I called my doctor and they have had so many calls; I will have to wait to receive a call from the nurse at the gastroenterologist's office. I am very sad!
The only side effect I had was basically a storm before the calm. For about an hour after taking it, my stomach would start screaming and I would have gas rolling around in my belly, but when I was relieved, I was relieved!
Review by Angelia
I have had IBS-C for 30 years. I am 41 and I suffer from severe constipation, cramps, bloating and lovely gas. I have been in hospital more times then I care to mention. I even have a $10,000 gastro pump in my stomach. I have tried many medicines over the years. I even became addicted to Exlax.
I tried Zelnorm alone and it was a joke. Gas was my biggest enemy. I finally found that Miralax and Zelnorm combined were my saving grace. I do have side effects but they beat the illness any day. When I saw the news about the withdrawal of Zelnorm I called my doc and had him rewrite my script for two a day so I can continue getting relief.
I have no idea where I would be without my two new best friends. I am able to continue working and my education without losing days to cramping that puts me to bed or worse, hospital. Good luck to all of you. I would always get so frustrated and sad when I saw a treatment work for one sufferer and I would try and it would make me worse. I am now the one with a smile on my face and I know out there someone is walking away from a PC even more discouraged. It's not the same for all you have to find what works for you!
Review by Sandy
I have had chronic constipation my whole life (48 years, hereditary). As a child I did not have a great diet as I would not eat a lot of the good foods. I have always been very active. In my teenage years I started being careful with my diet, eating prunes etc, trying all the over-the-counter cures at the drug store, colonics, avoiding junk foods. Nothing worked for more than a couple of weeks at a time.
I was diagnosed with IBS, but the first gastroenterologist was not helpful at all, he told me to avoid coffee and chocolate and that was that. I have avoided coffee and chocolate now for over 10 years, even though I never over-indulged. A new gastro prescribed Zelnorm, 6 mg twice a day, along with Metamucil and an increased water intake. I was desperate and agreed to give it a try.
I have been taking it for around one month now, and there's not been a great difference, although there has been some. It does not work well alone, I still need to take a stool softener with it. I have also taken acidophilus for many years to control bloating and gas and I find that the gas the Zelnorm produces can be somewhat controlled by taking the acidophilus.
I do not normally get headaches and I have been suffering from them daily since starting Zelnorm, so I now find myself taking Tylenol. I am confused as to what to do because I feel that any kind of pain pills are detrimental to IBS and I have always avoided them. I am going to continue Zelnorm until I meet with the gastro at the end of three months and discuss it with him. I agree with the other comments that Zelnorm is definitely not a wonder drug for IBS sufferers and I am not sure if it is worth the headaches.
Review by Lisa
I have been suffering with constipation for as long as I can remember. After many tests I was diagnosed with colitis and IBS. I now take Asacol for the colitis, and while it helps, I still get the usual cycle of being constipated for one or two weeks then having horrible painful diarrhea so bad that I almost pass out. My doctor added Zelnorm to my Asacol and I am much better now. I can't remember the last time I had painful diarrhea and my constipation is more manageable. I have been on this now for over a year. If I miss even one dose, I get diarrhea.
Review by Lucy
I'd had a problem with constipation and stomach pains since I was a child. I finally got so sick of being sick that I went to a gastroenterologist a few years ago. After many invasive tests I was diagnosed with IBS and put on Zelnorm. I did have the initial diarrhea like most people but it wasn't painful and only lasted a couple hours.
It's about two and a half years later and I'm still on 6mg twice daily. I've had no sign of it not working anymore, though I've found that the best results come with regular exercise combined with the Zelnorm. I've been a runner for 20 years so I've always exercised daily and still always had problems with my bowels. And if I don't keep up my exercise regimen for a few days (like on vacation or something) then my BMs slow down. But I used to have to run 10-12 miles just to ensure a BM. Now I can go as little as four miles and I'll still have a BM no problem.
I still get bloating also, but it's much more manageable. There doesn't seem to be a magic pill but I can be sure that Zelnorm has changed my life for the better.
Review by Mary
Well I was very excited about Zelnorm but it all came to an end. I was on it for about three weeks and then it stopped working. My doctor told me to go off for a while and try it again. I was feeling great but now I feel the same as I did before taking it.
Review by Ann
I have been on Zelnorm for about a year. It has been very effective for me. However, I am now experiencing some of my IBS symptoms more often than I had over the past year. Since it has helped, I am hesitant to go off it, but the Zelnorm website states that it is for short-term treatment and this concerns me.
Review by Peg
I have been taking both Protonix and Zelnorm for several weeks for IBS (prescribed by a GI doc). I feel a lot better - a lot less pain - and I am becoming fairly regular again. Has anyone had any facial swelling with Zelnorm or Protonix? I have noticed some (this is my third week on Zelnorm and fifth week on Protonix). I have had this sort of side effect with steroids in the past (Cortisone, Prednisone) but never have had a problem with other drugs.
Review by Ronda
I have severe IBS with constipation. My doctor prescribed Zelnorm, 6mg twice a day. I have been on it for about two years now, and I take it 30 minutes before I eat breakfast and dinner. Taking Zelnorm alone did not help me, but my doctor told me to take milk of magnesia once a day along with the Zelnorm, and did I feel sick to my stomach!
I then tried taking bisacodyl once a day with the Zelnorm and felt great. I've been on Zelnorm and bisacodyl for a year now, with no cramps and no nausea! Now I have no problems with constipation, cramps, or bloating. I still have to eat healthy, low-fat foods. I digest food rather quickly now, within about 30 minutes of eating a meal I have to go. I truly feel like I have had a load off my stomach instead of my shoulders.
Review by Lynnie
For 13 years I've had severe pain, bloating, and constipation to the point that I was put on pain meds. I have now become addicted to the pain meds and I am slowly weaning myself off of them. Last month I went to a new doctor, as my previous doctor just kept shoving pain meds at me, not actually believing my IBS pain. A stomach specialist confirmed I have IBS with constipation and said I was backed up inside.
Since taking the Zelnorm, 2mg three time daily, it's been great. No being up all night with my bloated stomach, pain, feeling like I have to have a BM but can't. Zelnorm has been wonderful for me. Now, it does give me bad headaches, but I take Excedrin and they go right away, so it's worth the headache. If I find it stops working after a few weeks my specialist told me to take less of it, and then should I start to feel that old pain and bloating then increase back up to what was originally prescribed, so I will do this. Good luck to all of you, I know how you all feel.
Review by Sandie
I was diagnosed with IBS-C and gallstones. I started taking Zelnorm and changed my diet to low/no fat a few weeks before I had my gallbladder removed. The Zelnorm worked like a charm. I continued to take it after surgery so I would not get constipated. Well, it is a month later, I feel great and I have lost 15 pounds.
I do feel the Zelnorm has leveled off and I am now going twice a week, but before it was once every two weeks, so this is much more regular for me. I do have more gas during the day, loud and stinky, which greatly entertains my boys! I realized I needed to add daily exercise and more water and fiber foods to my daily diet, so this week I have added walking in the evening and being more careful about making sure I take my Zelnorm on an empty stomach.
I now eat oatmeal for breakfast and strawberries for a morning snack, as well as a piece of fruit for an afternoon snack. Basically eating smaller healthier foods and zero to little fat. I am feeling much better and I think the Zelnorm is working better too. My weight loss has slowed, but I feel it will start up again with these slight changes to my diet. I was not going for weight loss, but it seems to just come naturally with being able to go regularly and changing my diet to good food without trigger foods. Thanks Zelnorm, what will I do when I have to stop taking you? I hope by then I have it all under control naturally.
Review by Susan
Zelnorm helps with the constipation but gives me gas all day. I may have to stop and try something else. I can't pass gas at my office all day! I think people are already catching on and avoiding my office. Oh wow! It's horrible.
Review by Will
My IBS trouble started in June of 1994. The cramping and abdominal pain would happen suddenly and severely. The attacks occurred on multiple days each week and would last anywhere from 30 minutes to four hours (once lasting eight hours). In July 2006 my doctor gave me Zelnorm. It's the end of September now and my IBS problems have not occurred while taking this medication. Zelnorm works for me.
Review by Dan
I first started to suffer from IBS in 2002 at age 24. Heartburn and cramps were my main symptoms, so of course acid reflux was the diagnosis I received at the doctors office. Needless to say when the heartburn went away and the cramps and abdominal pain remained, I knew it was time to go back to see the doctor.
After spending countless nights in pain, and even a few in the emergency room, I was finally referred to a GI specialist. Test after test would come back negative, such as an upper GI, a lower bowel series, Meckel's scan, capsule endoscopy, colonoscopy, CT scan, and numerous blood tests, and even more I am sure that I have failed to mention.
Now I have just turned 28 and IBS has made my life more of a challenge than it has to be. I have been taking Zelnorm for the past two years with moderate success. My GI doctor had to petition the insurance company to get it approved (apparently it is only approved for women). Since constipation is a big problem for me, the Zelnorm seems to help on average four to five days per week.
Even after the medication does its job, the pain often comes back out of nowhere, and makes it really hard to deal with the everyday grind. When my friends eat pizza and drink beer, I opt for water and eat things like yogurt and apple sauce. I am so frustrated with this disease called IBS.
Review by Jane
I have tried Zelnorm multiple times. Each time, I get bloating and pressure under the breast bone area. I've tried it for five to 10 days at a time. Sometimes I can only try it for two days and need to stop. I was using the 2mg tablet of Zelnorm.
Review by Lori
I've had IBS-C since about the time I hit puberty...my symptoms are bloating, gas, constipation, plus a whole host of complications such as hemorrhoids and a lovely fissure. I am only 21 years old, but these problems make me feel 80!
About a year ago I was prescribed Miralax by my doctor and that seemed to work great, except for the fact that I didn't think I should be on laxatives for the rest of my life. So my doctor then prescribed Zelnorm, about three or four months ago. I had a hard time adjusting to Zelnorm at first as I had diarrhea for about two weeks. However, after I adjusted, the Zelnorm worked fantastically for me... and then I had surgery.
About one month ago I had surgery to repair my fissure and to have my hemorrhoids removed. Since then, I haven't been the same. Because of the tender surgery site, I have had to combine laxatives with the Zelnorm. I've tried Colace, milk of magnesia, fiber, more water, and Miralax. Everything either doesn't work well enough, or I have horrible diarrhea.
It now feels as if everything is just raging, yes, raging through my intestines way too fast. I can't tell if it is the Zelnorm or if it is the Miralax (that is the latest med I have tried in combination with the Zelnorm), or just a result of the combination. Zelnorm worked great up until my surgery, I almost wish I could go back to that time, because I'm not so sure that the surgery was worth the trouble I'm having now.
Overall, I would recommend the Zelnorm to anyone suffering from IBS-C...though it may have some nasty side effects in the long run, or stop working.
Review by Reggie
I've been on Zelnorm for about a week so far. At first, the effects were immediate - diarrhea, and a loosening feeling in my gut. Lots of gas. It was great! It felt like it was doing something and the pain was lessening as well as the bloated feeling.
After a few days I can still tell the difference, but it's not like that initial wham. I've also started taking fiber pills, and generally I've been able to go on a more regular basis and generally feel better. Still some bloating and definitely some pain in there, so we'll see how it goes. I'm taking Zelnorm 6mg tablets, one pill daily. I'm taking two 625mg calcium polycarbophil pills per day as well, for the next week. I'm 28 years old and have been fighting IBS since I was a young teen.
Review by Casie
I was diagnosed with IBS in my early teens/high school years, but had the symptoms since my early childhood years. My earliest memories are of sitting in the bathroom and having my mother being frustrated because I just wouldn't/couldn't go. Years later in my teen years my mom would be called to pick me up from school and she would find me curled up in a ball in the hallway, I was unable to stand straight without extreme pain.
To make a long story short, I'm now in my late 20s and I do my best to control my symptoms by keeping a close eye on my trigger foods and trying to exercise properly. However, now that my career has taken off I'm busy and stressed, and there is only so much I can do in terms of exercising and eating well.
My symptoms are very infrequent bowel movements that are a combination of diarrhea and constipation, with extreme bloating. It's not fun looking and feeling eight months pregnant when you are not!
So I went to my doctor and tried Zelnorm. I'm really glad he warned me to be home for the first 24 hours...I was constantly running to the bathroom. In a few days things settled down and I noticed that my bowel movements had evened out and I wasn't bloated at all. I was warned about the side effects but didn't experience them.
I was on top of the world! I was able, for the first time ever, to eat whatever I wanted, whenever I wanted, consequence free. The treatment lasted a month, and I still felt fine for another three or four months. Suddenly, into the fifth month, my symptoms came back. I tolerated it for another three months then went and put myself back on Zelnorm. Lucky for me, it is covered in my medical plan, so I only had to go to the pharmacy and ask for another month's supply.
But this time, I got the side effects. And how! All through the month of treatment, I had a nagging headache and slight stomach ache, plus dizziness. I don't recall being warned about that. And it didn't do much for my IBS. Lessened it a bit, didn't get as bloated as I used to, but not worth the extra hassles. In my opinion, it's not worth trading some symptoms for others, so I will not take it again. But I would recommend giving it a shot if you haven't yet. You don't know if you don't try!
Review by Z
Just a word of warning...I have been an IBS sufferer since I was a child and I've done what the doctors said and learnt to cope with it. However, last May when visiting my father in the States (I'm from the UK) I was prescribed Zelnorm as the new wonder drug.
I didn't take it until I got back to the UK because I was taking other medication at the time. I took one pill around lunchtime and after half an hour to 45 minutes I started sweating and got really bad cramps, and I mean awful...like I thought I was going to have to go to the hospital (but as I had already been to A and E the previous week in agony because of an ovarian cyst bursting, I didn't think it was worth it because the way you're treated...anyway that's another story!).
Well...in short I was on the loo for the next hour with the worst attack I think I've ever had of what I thought was IBS...however, I decided it was the pills as I passed out which is very unlike me. After a couple of hours I was physically drained and weak and kept collapsing. The cramps slowly eased up and after a good night's sleep I was OK, just felt a bit bruised.
When looking on the Zelnorm site I saw this wasn't uncommon and some people have been hospitalized and even died from extreme dehydration. So if you are expecting a miracle cure I'd be careful. I never thought just one pill could cause me so much pain! I feel guilty being negative as it's helped many people, but I just think you should know. Best of luck to everyone searching for relief.
Review by Doug
I've been taking Zelnorm for two weeks now and have not noticed any difference at all...not sure if it takes longer than that for this medication to work. I have been suffering from IBS for over eight years. I still have abnormal bowel movements with chronic gas (very foul odor gas all day every day) along with bloating and constipation. I've tried everything there is to try. I'm not going to bad mouth Zelnorm it's just not working for me.
Review by Hayley
I've had IBS for about three years now. It started with diarrhea and now has gone hard and fast to constipation. I've tried everything, had every test you can imagine, and for the last two months I have been on Zelnorm.
Like everything else I didn't think much would come out of it, but for once it did. The doctors all said not to take very much because I would get bad diarrhea, but I didn't, I just had a few more bowel movements per week and you know how good that feels sometimes. Its been three months now, and I can already feel my tolerance to the drug going up so it doesn't work as much as it used to, but for a few months it was amazing, I don't know how I lived without it!
Review by Michelle
I have been suffering from IBS-C for about five years off and on, until this past October when the symptoms exploded into something completely unmanageable, seemingly for no reason. The severe week-long constipation spurred me to finally go to the doctor to talk about all my symptoms, and she prescribed Zelnorm for me, which worked flawlessly for about four weeks.
At that point, however, its positive effects slowly decreased to the point where now it no longer works at all. I suffer from intense gas and bloating to the point where I walk around work with my coat on all day because I feel so uncomfortable, upper abdominal pain that resembles being punched in the stomach that is pretty much constant, and of course the constipation which only seems to go away on Saturday mornings. Once Sunday night comes around, the whole cycle begins again.
I am expecting to be put on Cymbalta (an anti-depressant) at the end of this month and I am trying to be hopeful that it will help. My life has completely changed because of this chronic illness. I hardly eat, am depressed a lot of time and only pray that I can feel like a normal person again.
Review by Nancy
I have suffered from chronic constipation my entire life (50+ years), and absolutely nothing I tried could change that. I never enjoyed eating anything because I knew the grief it would bring me.
Then I started taking Zelnorm. I have been taking it for one and a half years, and I feel like it has saved my life. Yes, occasionally I get diarrhea and bad gas, but I am now a regular person, and don't have to be afraid to eat food. It doesn't work by itself - I still need to drink a lot of water, eat some high fiber food and exercise.
After I had taken it for the first few weeks, I felt that it wasn't working for me. But the longer I took it, I found that I had a regular routine for the first time in my life. It's not cheap, but really works.
Review by Lucy
I was put on Zelnorm and it worked fantastically for three or four weeks, but then my symptoms returned. I discontinued it because it did not work after the initial trial. My symptoms are severe bloating and constipation regardless of how properly I eat or how much fiber is in my diet.
I eat very properly, weigh 110 pounds, drink an enormous amount of water, exercise aerobically for 30 minutes four times a week, and I still can't get rid of the bloating and constipation. I've tried Lactulose, Miralax, Senokot, a daily shot glass of prune juice, fiber from foods and supplements and still no results. I can't imagine that a drug company can't produce a medication to solve this medical condition that affects millions. I do not think Zelnorm is the answer we are waiting for.
Review by Betty
My gastroenterologist prescribed Zelnorm. It did help for the first few weeks. Now it does nothing but give me terrible cramps and gas. I don't mean a little gas, this stuff gives makes me pass gas all day long. The gas that is emitted has a most awful odor and it is very loud. I can't go anywhere because of this. You may find it funny but believe me, it is not! It is painful and very, very embarrassing!
I have talked to my doctor about this and he has no answer. He says there is nothing else he can give me. If the product would give me some relief from constipation I would continue to take it even though the side effects are awful, but as I said, after the first few weeks I was constipated again.
Review by David
I tried Zelnorm a while back (had to get it in Mexico before it was approved for men). It did work at first - for about three weeks, and then stopped working. Since then I've tried it intermittently and it mostly does not help. The cost, as with most new drugs, is quite high (even in Mexico). Also, like many new drugs, it is not likely to be in your health plan's formulary, so unless you have a doctor willing to be a strong advocate for you good luck in getting it covered by your insurance.
Review by Nicole
My symptoms include chronic constipation, gas, and bloating. I've tried manipulating my diet by including more fiber, but it only made my symptoms worse. Also, I tried taking fiber supplements and I experienced the same thing. My primary care doctor said to take OTC Colace, but I was on Colace for over two years and my symptoms were beginning to creep back even while increasing my Colace dosage. I also did not like the idea of being on that drug for long term.
So, I went to a gastroenterologist and he prescribed Zelnorm. I've been on it for four months now, but I've been reading that it shouldn't be taken long term. My symptoms are slightly better, but they are still definitely there. I don't believe Zelnorm has been that much of a help to me and I am going to try and go off of it.
Review by Deena
I have had constipation for as long as I can remember. Zelnorm helped me tremendously. You do need to exercise and drink tons of water. Zelnorm works better if both these factors are incorporated into your lifestyle. Definitely worth a try!
Review by Amanda
About two or three weeks ago I started taking Zelnorm. What is amazing is that it actually works! I do not have to go to the chiropractor anymore, my back feels great. I feel way better. I actually go to the bathroom more than once every two weeks. I was not even going to try it because I have taken many medications before and they either did nothing or made me feel worse.
Review by Gretchen
Well, I was desperate. I talked to my doctor for the like 50th time and she said since I had been suffering for about two years that there was enough evidence to show that something was seriously wrong. So I went to a gastroenterologist at the hospital a few weeks later and told him about everything that had been going on.
He put me on Zelnorm which is clearly a drug to treat IBS. So far I've been taking it for about a month and it's definitely saved me. I've been going to the bathroom almost twice a day. But I've realized that I have to exercise every day in order for the drug to work its way into my system. Hey, I'm all up for exercising if I'm going to go to the bathroom, so you should talk to your doctor too and make sure you're clear so they listen to you.
Do you suffer from IBS? Have you tried Zelnorm? Please contact Sophie to send in your review.