Talked to my GI doc, claims he knows the cause of IBS
#182116 - 05/31/05 07:17 AM
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jules
Reged: 06/17/03
Posts: 1140
Loc: Michigan
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I used to post here a lot, but not so much lately.
Anyway, I was diagnosed IBS-C (pain/bloating dominating symptoms) last July after the complete GI work-up. My doc prescribed Zelnorm for me. Before I could start the first dose, I found out I was pregnant. I got pg in July, had a miscarriage in September, and am now pregnant and due in July.
My IBS has gotten 10 times worse after becoming pregnant. I'm miserable and all my OBGYN tells me is fiber fiber fiber, and water water water. Well, they don't help me. Believe me, I've tried.
So, I made an appt with my GI doc again and he says that there's nothing he can do until after I give birth. Then he will start me on Zelnorm, which is a seratonin regulator (I think) and that is the cause of IBS. He also said that Zelnorm will only work if the first dose is taken on a fully evacuated bowel. So in August, after I have my baby, I will go back in for another colonoscopy (yay, another bowel prep) and then start Zelnorm.
I'm just posting here to get all of your thoughts on this. I haven't used Zelnorm before, but part of me is really looking forward to it because many of his patients have had success with it. Part of me just wishes that I could go about taming this IBS beast drug-free. I'm also doing hypnotherapy and really like how relaxed the CDs make me feel, but I haven't felt any real relief yet. I'm on day 60 or so.
Thanks for reading.
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~jules
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Jules, congratulations on your pregnancy! I'm so sorry you're having such a rough time. Have you tried fennel tea for the bloating and gas? It must be really awful while pregnant. I know that while I was pregnant I had really embarrassing gas and that was without the IBS aggravating it!
For the fennel tea, crush up a tablespoon of seeds and steep in a mug of boiling water.
Peppermint tea is also good. Are you taking a soluble fiber supplement?
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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I have been taking a natural seratonin supplement called 5-hpt that has been a big help to me. I did a 6 week round of Zelnorm, but after about a week, it did nothing for me. There are also a lot of FDA warnings that were posted about that drug in the research library.
I know the C is a lot harder to control sometimes than the D, but I'd really try to find supplements to take instead of the Zelnorm. It would be a lot safer for you and baby, especially if you are considering breast feeding.
Congratulations on your pregnancy!
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God is Faithful!
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Thanks for your responses. I asked my doctor if it were safe for me to drink fennel tea while pregnant, and she told me no. But she has also recommended to me: Ex-lax, suppositories, peri-colace and a number of other laxatives. Out of desperation, I've tried them a couple of times, but I'm afraid of what it will do to my baby and also my digestive tract. Did you drink fennel tea while pregnant? I'm guessing that my doc doesn't know/isn't interested in learning about IBS and what havoc pregnancy wreaks on an IBSer. I'm not currently taking a SFS. I've tried many in the past, and in different amounts and it just plain seems to make things worse. So I'm taking a break from that right now.
I tried 5-HPT a whille back and don't remember any significant improvement in my symptoms, but I do know that a while back I was very impatient. I also may have taken it with other supplements (I've tried a LOT) and should probably try one thing at a time.
My GI said that I can't take Zelnorm while pregnant because it could cause me to abort. What do you know about 5-HTP? I have a OBGYN appointment tomorrow and will ask her about Zelnorm (while breastfeeding) and 5-HPT (while pregnant and breastfeeding), but I wondered if you knew anything about it.
I have only six more weeks of being pregnant (or less, I'm hoping I go early!) and I think I can handle things until then. But, my god, do I have some BAD days! I've cried myself to sleep at night more times than I can count because of the pain and of the seemingly never-ending battle with this horrible condition. It truly isn't fair that we have to deal with this.
Hope you both are doing well.
Thanks again!
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~jules
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for colic.
Zelnorm is only 5-15% more effective than a placebo - it's definitely not a wonder drug for most people, and it has serious risks and side effects. There's a whole page on it in the glossary here http://www.helpforibs.com/footer/zelnorm.asp
Best,
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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ginger tea?
#182234 - 05/31/05 12:26 PM
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Lyndsey
Reged: 02/16/05
Posts: 581
Loc: Bay Area, CA
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i know it's not the same as fennel, but my friend was advised ginger tea....which i know helps with different problems, but it makes my tummy feel happy
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fyi: heather. my therapist, who also has 2 nursing degrees, says she is seeing 'in the pipeline' that it's only a matter of time until zelnorm will be permanently pulled from the US market. remember 'good ole' propulsid.' that was pulled for dangerous outcomes, also.
i am one for whom zelnorm actually scared me for the 3 days i somehow managed to keep taking it. d + major flu smptoms. i know some say hang in, this will pass, but i have to really wonder about ANY drug that can cause something that extreme!
i feel your suggestions are the better/ much safer way to go. (pun intended.)
don't want to ruin others days re: zelnorm, but just so they will keep it in mind that this may indeed happen, and, have a contingency plan.
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Since pregnancy was not an issue while introducing these supplements, I really don't know how they interact. Just tell the gyn what you are dealing with.
I just recently found a gyn who understands how supplements work with meds, so was able to get good input on interaction with birth control.
Wish I could be more help!
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God is Faithful!
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Thanks again for your speedy responses. I am going to pick up some fennel tea on my way home. I remember that it used to work for me before I got pregnant.
I am leery of taking Zelnorm, just because of what I've heard second-hand. I'm going to check out that article link and bring it into my doctor. He seemed hell-bent on Zelnorm being the only remedy for me. I asked if this was something that I would need to take indefinitely, and he said "yes", then went on to say "well, you're only supposed to take it for eight weeks, but not one of my patients would be willing to be taken off of it after that period of time. They felt such relief."
Heather, what do you know about 5-HTP? I will do a search on the Web and this Web site when I have more time, but I was curious as to what you have read/heard about it.
I've tried the Ginger tea and it gave me really bad heartburn. But, I have found this product called Ginger Wonder (or something similar) and it tastes great and does not give me heartburn.
As I said in my original post, I'm on day 60 of the hypnotherapy and I have high hopes for relief from that. Hopefully, having this baby will help lessen the IBS symptoms. I feel that my symptoms lean more toward pain/bloating than constipation. But, I'm guessing that I have the pain/bloating from being constipated — and from this little boy trying to make a temporary home for himself while he's growing. :0)
Thanks again. I SO appreciate all the information that I have learned on these boards.
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~jules
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I just read the link to the FDA warning on Zelnorm.
Figuratively (though I wish literally), it scared the crap outta me. I will definitely print this out and give it to my GI doctor.
Thanks again.
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~jules
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thanks for letting me know. I've been worried, what with the two additional FDA warnings on Zelnorm since it was released, and with the earlier deaths/ subsequent recall of Lotronex (the only other serotonin-affecting IBS drug out there). But this is the first I've heard of a medical person stating flat out that the end of the road for the drug is actually coming.
I so wish they would push the funding for IBS research into some non-drug (or at least non-serotonin drug) areas. 
- H
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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So, Heather, seratonin is not the answer? I know that many have had success with your diet and I tried it for a while. I think that I will give it another honest shot. I just hate restriction, though I need to stop thinking of it that way. I also need to get the full support of my hubby. I might have him read your book.
I'm glad I posted before trying Zelnorm.
Thanks all!
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~jules
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but all of the research on this is so new, and so are the attempts to develop drugs that affect serotonin in the gut. Zelnorm is literally the second drug - ever - to come to market that is intended to affect serotonin in the gut. Lotronex was the first, and it killed 11 women. These drugs are really, really new, and they are an entirely new drug class all on their own. Zelnorm is only 5-15% more effective than a placebo, which isn't much. It's really the unknown risks of the drug because it is so new that scares me. I wish it was totally safe and effective - the more options we all have, the better. But with the serotonin-affecting drugs, I don't think we're remotely at a safe and effective point.
-
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Hi, Jules
#182346 - 05/31/05 06:00 PM
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BL
Reged: 06/01/03
Posts: 3522
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It's good to hear from you again. I hate that you are dealing with the IBS issues while pregnant. This should be one of the best times of your life. I can't believe you only have 6 more weeks to go! It just seems like yesterday when you found out you were pregnant. Hang in there, sweetie! Big hugs!
(Do you know whether it's a girl or boy?) How exciting!
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ok..when i frist started taking zelnorm it scared me so bad because i would have panic attacks and feel so sick and get mood swings i wanted to stop immetiatly.but i was detrimed to get my life back and i knew that it could only get better so did i quit?NO WAY!after about 1 week my symptoms got better then 2 weeks i still felt werid after the frist 5 hours of taking it that feeling went on for about a month and a half but zelnorm has given me my life back,i was at 106,anerioxc...i started taking this and i wanted to live life again..it was amazing,now i can go on long trips and be calm when driving i get hungry have a bm everyday or every other day!im now up to 130 and feel amazing!!zelnorm is wonderful and i honestly dont know what i would do without it,i know i would not be here right now if i didnt take the chance..so dont let anyone talk you out of it,go for it.you never know what will happen until you take it.MAN IT FEELS GREAT TO BE ALIVE!
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Did they pull Lotronex off the market and any idea why it killed 11 women? Am I gonna die from taking my Zelnorm the rest of my life? Zelnorm 1/4 tablet twice a day is helpin me tremendously.
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Let's see if we can prevent Zelnorm from being taken off the market. I for one don't have many options. I am taking 1/4 tablet twice a day with great results. IBS-C.
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I'm having a boy! I'm so excited. And yes, dealing with IBS while being pregnant has been quite a trial. I'm really looking forward to getting my body back. Who knows, maybe I'll just feel tremendous relief by delivering him.
Thanks for that info, Heather. Because of the recent thread on the boards about Digestive Advantage, I'm trying that. I have been feeling farly good the past five days and I'm attributing that to the hypnotherapy that I'm doing, as well as eating smaller meals. I also started the past two mornings out with a slice of cinnamon-sugar sourdough bread toast and yogurt and that seems to put my day off on a good foot. But things are so touch-and-go with me, that the IBS is always in the back of my mind. Especially when my baby decides to use my too-full colon as a kicking toy. Please please please let me deliver early!
I'm still wary of the Zelnorm. Hopefully, something will come out one way or the other on the effects of it. My doctor puts patients on it for life; he said that he couldn't pay a patient to come off it at eight weeks because of the relief that they felt. It's so tempting.
Have a great day everyone!
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~jules
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John...i honestly dont think our docs would put us on something that would kill us!!why do you only take 1/4 tablet a day?try taking 2 hole ones you will defintly see a big change!i didnt see a change until i took 2 hole ones a day im on 2 6mg..i hope i can be on these for life because i dont know what id do with out them!!this is the only thing thats worked for me!
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Just look at all these arthritis drugs that are being pulled off the market. And yes, people did die from Lotronex.
I think it's a personal choice whether you decide to take Zelnorm or not. If it worked for me (which it didn't) I think I would still take it, even with the risks. I'm glad it is working for some. Just didn't do a thing for me.
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Zelnorm didn't work for me either, and with all of the negative press and possible health risks, I'd really encourage you to try other things. I know all IBS can't be controlled without medicine, but a lot of it can, and like Heather stated, the medical evidence just doesn't support the safety of this drug. It is a personal choice, but you are wise to be aware of the risks.
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God is Faithful!
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About Lotronex
#182494 - 06/01/05 09:31 AM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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Lotronex was pulled from the market temporarily. The outcry from IBS sufferers who had found relief from it prompted the FDA and GlaxoSmithKline (the makers of Lotronex) to make it available again under controlled conditions.
Here are a couple of Website where you can read about Lotronex:
Lotronex Home Page
FDA Announcement
If I understand correctly, the 11 women who died, died of ischemis colitis. The second Website explains what that is.
I spoke with my GI guy about Lotronex. He is in the prescribing program and feels it is a very valuable drug for intractable cases of IBS-D. He claims that it is safe if patients who are on it stop taking it and call their physicians at the first sign of constipation. My GI is a good guy, bright and knowledgeable, but I think he's too quick to prescribe and especially too quick to prescribe drugs without a long track record.
My own feeling about Lotronex is this: I'd try everything other reasonable solution first, but if my IBS had continued to be as bad as it was before I started Heather's diet, I would have definitely been willing to risk Lotronex.
My advice is that if you are taking Zelnorm and it is important to you that it stay on the market, write or call the FDA to say so. It might be even better to contact the makers of Zelnorm, express your concerns about it being pulled, and ask them what you can do to influence the process.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I have IBS-C(really bad). I have been on Zelnorm for a while now and when I first got on it I could only take a half of a pill at the most because it would really upset my stomach. For the past couple months I have been taking two whole pills a day and sometimes it works and sometimes it doesn't. When it does work its great, but I just wish it worked all the time. I took it last night and all of the sudden I had the worst cramps I could not even stand up and I was just sweating. My boyfriend was sitting like 6 ft awaya from me and he could hear my stomach loud and clear. I had not been to the bathroom in like 4 days so I guess it just really upset my stomach and I had one of the worst upset stomachs I had ever had and I have had them for 9 years. I was really scared last night, but its scared because I would actually take it again because at least it worked. I have tried EVERYTHING else and I am so frustrated! 
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well sorry it didnt work for you and some other people but dont reuion it for others who it could work for!it saved my life and im glad i took it.
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Oh my!
#182578 - 06/01/05 01:01 PM
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Kristin940
Reged: 05/04/05
Posts: 104
Loc: Massachusetts
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Wow, thanks for all the information re: Zelnorm. While it has worked for me, I also have my days where it does not produce results at all. Having said that, your link (Heather,thank so much!) to the FDA warnings really put a lot of my biz symptoms into perspective. I've been suffering from chronic insomnia and dizzy spells recently, and I am wondering if it might be attributed to the medication. The scary part for me is that my doctor just upped my dosage to 6 mg 3 times/day!!!!!!!! I am going to get in touch with him, and speak more about this!
Thanks so much for all the info!
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I'm sorry it didn't work for me either. But if you read my post carefully, I said I was glad it was working for you and that if it had worked for me, I would have probably continued to take it despite the risks.
I'm not trying ruin it for anyone. But it is true that there are a lot of dangerous drugs out there that doctors are prescribing only to learn about the dangers after the damage has been done and people have suffered permanent damage, or worse, death. Did you read Heather's reports on what these drugs have done? I'm not making this stuff up scare people.
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Did you try decreasing the amount & frequency of your Zelnorm doses? I only got D the first couple days because I took too high a dose & too often. When I cut back to 1/4 a pill (taken only occassionally instead of daily), I no longer got cramps or D. Now I take Miralax daily & then take 1/4 of a Zelnorm pill if I'm feeling C or uncomfortable.
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I only take 1/4 of a 6mg pill on occasion. It helps me a lot. I tried a 1/2 pill at first, but that was too strong. Gave me horrible cramps & D. Could be that your body just needs a higher dose.
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Jules
#182614 - 06/01/05 02:08 PM
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BL
Reged: 06/01/03
Posts: 3522
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Ahh, so you are having a boy! Congratulations! I am partial to boys since I have 2 of them (13 months apart).
As for the Zelnorm, I would be afraid to take it long term like your doctor suggests for his patients---simply because I read somewhere that there have not been any long-term studies done on it. They don't know what effect it will have on people who take it long-term.
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My mother took Lotronex for awhile for IBS-D---and she ended up hospitalized with ischemic colitis. It was awful! The most painful and scary thing she'd ever been through.
She was one of the fortunate ones because she had a complete recovery. Many of those who had this either died or had to have parts (or all) of their colon removed.
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thanks for the tip on taking less!, but i'm doing well enough without zelnorm.
--------------------------------------------------------------------------------------------
as a general comment: and as cyndy says, neither i nor anyone posting is trying to ruin zelnorm for anyone. in my case, i was helping like a good boyscout: 'always be prepared' ...in case it IS pulled. i realized i was a taking a chance posting this, but i would feel remiss had i not. to be forewarned is to be fore-armed.
also, it's naive to think our docs would never put us on anything harmful. oh for the good old days when i believed that, too! docs, pharmaceutical companies, and the fda do indeed scratch each others backs. sad but true. its about $ more than anything else, however you slice it.
it's beyond appalling that we don't have more & safer meds for all our conditions...and that so little research $ goes into so many valid illnesses.
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--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I have no idea if this would bother you as I am IBS-A but the main suffering is the "C".
I make a grated carrot salad (full of fiber). I make a big batch and add 2 cans of Dole brand "Tropical Fruit" I reserve the juice. I add some raisins, sliced (not slivered) almonds, and mix well. The dressing I use 2 grams of Best Foods Mayo and Whipped cream from a can. I mix the both so I get a bit of a sweeter flavor than a mayo taste. then I slowly add however much reserved juice from the can of Dole to get the taste I want. Mix it really well and chill for 2 hours.
This will keep your stools "really" regular and pretty well formed. at least it does for me. I'm eating it as I type this to you. I can't take anymore of the excruciating pain that I experience when I'm "C".
I hope this gives you some insight if you already didn't have it. Good luck and I'm sorry to hear about your pregnancy.
Heidi
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thats great to hear that you are feeling well. i just started taking zelnorm about a month ago, but my doctor didnt tell me to change my diet or anything for that matter. So I think thats why it hasnt been working that great for me. I still have faith in it thought that it will help. How long did it take before you really benefited from it? Do you take 2 a day, one in am one in pm? Im trying to find the best times to take them....any suggestions?
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And now, well, when I take it 2x a day, it's soooo NORMAL!
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Keep on keepin' on...
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but I couldn't figure out how. You didn't happen to post on INCIID a couple years ago, did you? I used to know a Jules who had a baby, and was trying to have another one...just wondered if it was you or not. 
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Shelli - Wife & stay at home mom to 1 son, 1 dog & 2 parrots! IBS-A, usually C.
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I suufer from IBS-C/Chronic constipation. When I was pregnant I took the rx stool softener Lactulose, also called Enulose. Its natural sugars that draw water into the intestines. It worked great for me and I gave birth to healthy twin babies this past December!!!
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IBS-C, pain predominant
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Nope, that's not me Shelli. :0) This is my first baby.
BL, I'll try and get a pic of me up here. But I'm computer challenged, so it may take a while. ;0)
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~jules
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There are going to be warnings with every drug you take!plain and simple.what does it produce D in some people and kill them or what?how long did you take it for?it usally takes a month to fully go into effect.
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Mickz,
Congtats on your twin babies! I will ask my doctor about Lactulose/Enulose. My main symptoms are abdominal pain and bloating. Did you have that and did the Lactulose/Enulose help with that?
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~jules
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I have a doctor appt tomorrow and no insurance. I was originally prescribed it the DAY before it was pulled and therefore never got to take it.
Now I will have to pay for it out of my pocket. Anybody have any idea about the cost? The Internet Rx sites say it's about 60 1mg tablets for $381.90. Is that right!!??! Thanks--
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Jules,
My first trimester of pregnancy was the worst. I had really bad abdominal pain. It felt almost different from what I would get with IBS-C before I was pregnant. My second and third trimesters were a lot better. However, during my pregnancy I switched from IBS-C to IBS-A. Weird! However, the Lactulose did help with the C.
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IBS-C, pain predominant
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Ok. Just thought I'd mention it because when I first started taking Zelnorm I thought I was required to take the larger dose twice a day in order for it to help my body. I didn't know that I could take a lesser dose or take the medication just as needed.
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please check Zelnorm. The info is coming directly from the manufacturer (Novartis) and from the FDA.
Please realize that just because a drug is safe and effective for one person does not mean it is safe and effective for all (or even most) people. What works well for you might not work at all for someone else, or might cause them serious side effects. This does not mean that you should not take a drug that is working for you - it just means that you should always be aware of potential problems with any drug that you take.
Many, many drugs kill people - that doesn't stop docs from prescribing them (nor should it - aspirin kills people, but it benefits many more). You just need to fully inform yourself - and don't count on your doc for that, take responsibility yourself - so that you can weigh the pros and cons. And your decision is only relevant to you - someone else might make a different decision, to take or not take a drug, and that will be the right decision for them.
Best,
Heather
--------------------
Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Quote:
Now I will have to pay for it out of my pocket. Anybody have any idea about the cost? The Internet Rx sites say it's about 60 1mg tablets for $381.90. Is that right!!??! Thanks--
OMG! Choke, gasp, wheeze!
I have no idea, but I certainly hope not. Unfortunately, though, based on the cost of some of my meds, it certainly could be. There are some programs around to help defray prescription costs - I don't really know how they work, but you could ask your doctor and/or druggist. I think one of them is run by the drug companies - I've seen some ads about how "hard working people" should get help with their drug costs.
HTH. Good luck.
--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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ask your doc, or better still call the drug company, about programs for providing the medication free of charge. Most drug companies will do this, but they don't advertise it (and some docs don't even know about it). Your doc may have to be the one to contact the company - their number should be on the drug insert that comes with the med, and your doc likely has some drug samples in his office. You'll fill out a form, submit to the drug company, and they'll send your doc a supply for you.
Now - I don't know if this applies to drugs that are under such heavy prescribing limitations as Lotronex. The FDA might have a say about this. But, it might not even be an issue, so you could at least look into it.
Best,
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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http://needymeds.com/
lotronex listed page:
http://www.needymeds.com/indices/brandname.shtml#M
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I saw my doc today and he whipped out the massive disclaimers and paperwork he had on joining the group who were allowed to take Lotronex. It is like they want you to sign your life away if you take it!!!  
The financial cost is also way too high for me at this point, with no paycheck or insurance. My appointment today was $75 for the visit and $90 for the Rxs (loperimide, T-3, and donnatol). He gave me some donnatol (sp?) to help with the spasms, and I'll try it to see how that goes. Thanks again to everybody for the 411! -N.
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I saw my doc today and he whipped out the massive disclaimers and paperwork he had on joining the group who were allowed to take Lotronex. It is like they want you to sign your life away if you take it!!!
Given the problems some people have had it with, I suspect that's exactly what they want. Did they ask you to sign in blood?
(I deleted the paragraph that was originally here. I had gotten so confused about loperamide vs Lomotil and T-3 vs T-4 that there was no way for me to climb out of the hole I dug myself. Sorry.  )
Donnatol, on the other hand, really works well for me. I swear I can feel my insides relaxing when I take it. Best of all, it's only about $4 for 60 tablets - which may be part of why it's so soothing!
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
Edited by Sand (06/05/05 06:45 AM)
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