Colonoscopy results and zelnorm
#3353 - 03/19/03 03:24 PM
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I finally got my results today--and I'm an IBSer alright!  So my doc wants me to start zelnorm. he seems to think I should be able to eat meat, dairy, etc. just fine. What do you think? Anyone know anything about zelnorm? He says I should still exercise and he thinks hypnotherapy might be a good idea--my question/concern is: Will all my symptoms just go away from this medicine? What can I expect? the doc said my bloating and constipation should disappear and I should be able to eat anything but broccoli, cauliflower, cabbage, etc. If anyone knows ANYTHING about zelnorm and what I can expect PLEASE write me back!
I'm happy to be a member of the IBS club  especially with such a great support group here! Thanks to everyone on this board--you're all amazing--I couldn't have gotten through the past week without you! It's WONDERFUL to know for sure that it's IBS (and nothing worse!) I had a hunch all along since I bought both of Heather's books about 4 months ago that it was IBS--and here I am! *phew*
Heather, thanks again for always being here for us!!! You're AMAZING!
Ruchie
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Formerly known as Ruchie
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Hi Ruchie - To get really accurate, detailed information on Zelnorm, go to your local pharmacy and ask the pharmacist for the clinical insert that comes with the drug. It's a big piece of paper folded very small, with tiny writing, but it has all of the hard-core medical and scientific information about the drug - risks, side effects, mechanisms of action, research study info, etc.
Because Zelnorm is brand new, there are no long-term studies of yet, and no one really knows if there are any long-term risks. The drug is actually only approved to be taken for so many weeks, not indefinitely.
I've heard from just a few folks so far who have tried Zelnorm, with not so great results. But this is literally just 3 people or so, so that's definitely not enough. Hopefully some folks on the board who have Zelnorm experience will post.
I honestly think your doctor is nuts to tell you to eat meat and dairy and everything else if you're taking the drug. That's akin to telling a patient with high cholesterol to just keep eating the meat and dairy since they're being given a statin drug. Drugs can't (or at least shouldn't) compensate for a healthy lifestyle, though they can be extremely helpful additions.
I'd keep doing what you have been to try and manage symptoms, and certainly consider hypnotherapy as well. See what info you can get about Zelnorm from the pharmacist (and ask your doc if he has any printed materials) so you know what to expect. And hopefully, if you decide to try it, it will work really well for you!
- 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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Heather,
I meant to get the medical insert since you mentioned that to someone else in one of your posts--but I got the directions instead!  Hopefully I'll get the chance to do that tomorrow.
I thought my doctor was nuts too! I plan to stick to your diet--first of all, I think it's VERY healthy--second of all, I'm hard pressed to believe in a "miracle drug" that will just make it all better! Hopefully it will help with the bloating and constipation! I'll let you know how it goes 
Thanks so much for getting back to me--and for always being here! (My husband thanks you too!)
All the best,
Ruchie
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Formerly known as Ruchie
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I tried zelnorm for 2 weeks, and I don't mean to sound discouraging, but it did not do one thing for me except give me headaches. It never made me go to the bathroom or did anything to relieve any of my symptoms. But then again, we don't know yet that I "just" have IBS, my colonoscopy is Tuesday. So it might help you a lot, it seems to have helped some people. But I still suggest sticking to Heather's diet and gradually introducing other things, because this diet is the only way I've gotten back to eating AT ALL. Good luck to you and so glad you got good news!
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Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)
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Ruchie - glad to hear it's ONLY IBS! Boy, what a mouthful, huh?
At least now you'll know how to take care of yourself, but I don't know about eating dairy, etc. Time will tell.
Sharon
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Sharon
"Anything Chocolate"...that is all!
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Michelle,
Thanks for getting back to me! Btw, did you have a better day today--I hope so?!
So I took zelnorm tonight for the first time--I'll let you know how it goes. I plan to stick to the diet--I find it difficult to believe a pill will just make it all disappear (besides, I think Heather's diet is HEALTHY!)
Thanks a bunch for sharing your experiences with me--I really appreciate it! I hope you're having a great night--take care, be well!
Ruchie
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Formerly known as Ruchie
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Heather - I'm so sorry that I forgot to thank you from my husband about the gas you made disappear. He's now back in the bedroom with me and not in the guest room! He's so relieved and so am I. No more getting up 20 times during a TV show to go to the bathroom and "let 'er rip." Thank you from me, too. I would;ve never thought of the Vit C as the culprit.
Two adoring fans,
Sharon
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Sharon
"Anything Chocolate"...that is all!
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Sharon,
Thanks!!! I actually consider myself lucky--my mom has ulcerative colitis AND IBS and my grandmother has a polyp the docs are watching--well, we know I'm adopted!  So I'm thankful that I just have IBS and some hemorrhoids.
It's a good feeling to know what the problem is once and for all!
Thanks so much for your support!
Ruchie
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Formerly known as Ruchie
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Aww Sharon, thanks. I feel a little bit like Cupid on this one...
- 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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Hey Heather!
My doc also suggested I reduce my citrucel doses to just one in the morning (I was doing two doses a day) and that I don't have to be too concerned about fiber on zelnorm. I found this confusing  It doesn't seem to me like there's fiber in zelnorm--doesn't the average person need at least 20-25 grams of fiber a day? He didn't really give me any nutritional info. at my colonoscopy follow-up today  Plus the doc was in a rush--he was running behind with patients (I waited over 30 mins for my appointment to be rushed) so I felt hurried and didn't get to refelct and ask my questions in a relaxed setting. So now I'm pretty confused. Do you think I should call the doc back and set up a "phone appointment"? Do you have any suggestions? I trust your opinion since your books and diet and support have been such a great help to me. Thanks for your time!!
Ruchie
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Formerly known as Ruchie
Edited by Ruchie (03/19/03 06:17 PM)
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Hi - I would ask your doc specifically about taking a fiber supplement with Zelnorm. I don't know why there would be a problem, but I'd also want a medical opinion on that.
And yes, people do need at least 25 grams of fiber a day, and most folks don't get nearly that much. Zelnorm can't replace dietary fiber in terms of what you need for overall good health (and GI health as well).
Let us know what you find out.
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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I just would like to add that my doctor diagnosed me with IBS and then gave me Dicetol. It worked
for a few days, but after about a week it stopped all together.
He also told me the similiar thing as your doctor did - he said I could eat all the red meat and dairy I wanted
and then told me to cut out starches (ie pasta and potatoes). I tried that for about a week and realized I
was having quite a time sticking to that diet, that's when I ran across Heather's diet.
Since then I don't take the pills at all - I only follow Heather's diet. I don't take an Metamucil or anything
just a multi-vitamin. And I only carry the Dicetol for emergency where there is nothing else I can possibly
eat. For Example: At my step sister's wedding I had to eat there and couldn't not eat because it was going
to be a long night so then I took one of those pills and had a bit of turkey and some salads and loaded up
on the potatoes. I found these pills to work then. Only as back up!
Lana_Marie
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Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz
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I was put on the Dicetel as well. I found it helped a bit-but am off it now. I take a multivitamin in the morning, a Caltrate 600 at lunch and 1tbsp of Metamucil before bed. Things seem to be O.K. My mornings are much calmer as I tend to go to the bathroom at a pretty regular time each day.
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Thanks for responding!
What is dicetol--I've never heard of it? Any info. would be greatly appreciated--thanks bunches!!!
Ruchie
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Formerly known as Ruchie
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It's a pill and it says right on the package for IBS. That's about all I really know about it.
Sorry I can't be more helpful.
Lana_Marie
PS - I am Canadian - where are you from - maybe these pills are not available everywhere?
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Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz
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jst4kdz:
Do you carry the pills around for emergencies? I have found this very helpful...
Lana_Marie
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Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz
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I took Zelnorm for a couple months and it seemed to help me. Also I was taking Citracel every day. At first, the Zelnorm might give you diarrhea, but that is one of the side effects and headaches are another side effect. I am now off the Zelnorm and just taking Citracel. My IBS isn't that serious because I don't have the stomach pain that some people have. (I have the occasional stomach ache but not to where I'm doubled over) Mine started out with diarrhea and then it went to constipation and stayed at that. I'm doing better now and like I said, I'm still taking Citracel every day. I hope it works for you. Let us know.
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Lana- I tried hypnotism in the sumer and was going great. I had just finished my last pack and did not repeat. I do not suffer from abdominal pain like it says on the box. I find now the Metamucil is helping. I take Immodium advanced or Pepto in a case of problems. I also keep Altoids with me at all times, as they are very calming. I think this Dicitel is popular in Canada for sure.
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I saw your message on the IBS message board.
I hope you can help me. I am a graduate student at George Washington University. I am in the process of finishing my thesis about women who are taking or have taken the prescription medication Zelnorm. I need about ten women volunteers. The purpose of my paper is to interview these women over a 2 month period to gather data on their quality of life before and after taking Zelnorm. You will only be identified as "case" studies. I would love to speak with you. If you are interested in participating, please email or give me a call. Thanks Any information you can provide me would be greatly appreciated. My phone number is (972) 223-5454 Thank you
Kimberly
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It's not necessary to crowd up the board with the same message over and over again. Once is enough! If someone is interested and wants to respond, they will.
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Ruchie,
I've never heard of anyone so excited to have IBS!!! I think you're just one of those all-the-time happy people.
I'm wondering how your move went. I guess you are settled. You didn't mention it.
I have not tried the Zelnorm, because from what I've heard from others, it either didn't help them or their symptoms returned as soon as they stopped taking it. From what I understand, you can only take it for a short period (4-6 weeks at a time). Did your doctor say anything about that? I am getting so desperate that I may try it soon. Let me know if it helps you. I sure hope it does!!!
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Ruchie, I took Zelnorm for a while. My main IBS complaints are pain/bloating. The Zelnorm initially gave me urgent D, so stay close to home for the first few days. Unfortunately, it did not help the pain/bloating one bit. While taking the Zelnorm, I constantly had this weird rumbly, gurgly (I know, VERY scientific description) unsettled feeling in my gut. I stopped taking it because I didn't feel it was helping me. This is just my personal experience with the drug. I think it is worth a try however because we are all different; it might work for you. Try a search on Zelnorm, there has been a lot of discussion on it.
As for your doctor's advice to eat dairy, red meat and cut your fiber supplement: ?????????? WHAT? Does HE have IBS? Probably not. We are all living proof of what works and what doesn't. I am IBS-c and the one thing that has helped me in a big way is my SOLUBLE FIBER SUPPLEMENT! Giving up dairy has really helped with the bloating. Everything else is trial and error. There is no question in my mind about the soluble fiber suppl. and the NO DAIRY. Nod politely when your Doc tells you these things and then do what makes you feel best. Wishing you well, artist
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Ruchie-
I have been on Zelnorm since June and it is working very well for me with the C. However my GI told me to take phazyme with every meal for pain/bloating. I tried dairy but it was no-go can't do even with the zelnorm, I can do meat, but not 2 days in a row, if I spread things out a bit and don't stress my body out I am usually ok, but I am not a big meat fan anyway. I am having success and a lot less problems with C, but of course, I am sticking to the diet, drinking lots of water, taking my fiber blah blah blah, but it is working for me. Good Luck!!
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Screen Name: Nan275
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Hello artist,
I am conducting a study on women and Zelnorm. Would you be willing to participate and answer a few questions? Please respond by 9/13/03. Thanks
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Please accept my apology. I did not mean to offend anyone.
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