Zelnorm

[danikali]

Hi everyone! How are your holidays going?

I haven't written in a long time! Anyway, I reccently went to the famous Dr. Green in New York City for help with everything because I was having way too many problems to cope on my own and I was sick of the doctors that I've had not helping.

Anyway, he gave me zelnorm to help keep me regular. I've been taking it in moderate for the past few days now, but I'm very skeptical on medicine like this. Especially since this drug, specifically, is so new. Anyway, I'm sure some or most of you have come to this crossroad, so I have some questions:

1. Have you had any side effects on Zelnorm?

2. Do you know if you depend on this drug to go the bathroom, does it make it worse when you go off of the pill?

3. Is it like every other laxitive that eventually, you need to "up" the dose?

4. If you haven't taken it, and had the option to, why didn't you?

5. If you do take it, do you think it helps? Are there any bad aspects of it that you have noticed?

6. Anything else you might want to add about this drug?

Thanks guys! Even though I'm going to the suposed expert of Celiac Disease, I know I can always depend on this forum to give me honest, helpful and "real" answers, more than any doctor.

[danikali]

Hi, I'm going to reply to myself:

Has no one been offered zelnorm? Am I the only one who has come across this decision?

[jenvan]

Well, I don't want to go up against the famed Dr. Green!! I know, I'm not a doctor--yet! But I'll throw out some input b/c I was on zelnorm pre-diagnosis--sorry if its long! First thing first--how long have you been gluten-free for? I assume constipation is one of your main symptoms? That was one of my main issues, and so before I was diagnosed I took zelnorm for several months periodically. It took me a few months of being gluten-free--but I am pretty regular now. I have elminated most dairy too, which is also a culprit. (You may want to look at that too--dairy and soy seems to be the most common culprits). I find that I can manage and keep myself regular when I start to slow down by eating fruit, drinking water, eating fiber like beans and brown rice etc and taking psyllium.

I agree with you somewhat--I think ideally no meds is always better for us, however, I realize that sometimes we have little choice. I am guessing that you probably do have some other options though. My experience with zelnorm is that it gave me D once a day or so--so I felt like I was finally going to the bathroom, so I was glad for that of course. However, I am off the mind that although it works differently, it made me feel like I was taking a laxative. Now, this is something I can't prove to you scientifically but I am a firm believer in fiber etc vs taking laxatives or meds. I think the later can lead to a dependence or weakening of your own system. The beauty of fiber is that it collects and absorbs the waste and other things like mucous in your intestines, "scoops" them up and carries them out. (Funny description I know A laxative or I think, meds, just cause your intestines to spasm, shooting out some waste by force, but not all...potentially leaving some waste, toxins etc. When I was in your situation I did several things...was fiercely gluten-free (even trace amts, which we can't have anyway, will slow my system down), kept a food journal and noted if i had issues correlating with certain foods (for me, dairy), replaced outed grain fiber with alternate fiber, you need soluble and insoluble---a big one for me is beans and psyllium. I vote for natural vs. synthetic fiber...aside from the natural plus, I also never had any luck with synthetic fiber. I hope this makes since--just my perspective. I'd do some more investigating--what other solutions can you use to keep your body regular? I can't imagine meds manipulating your intestines and seratonin are going to help in healing. I will ammend though and say if you exhaust all other options--then going via zelnorm is better than not going at all. Part of it might be time, it took my system a while to start properly moving on its own again. I put some helpful links/fiber info below to for you to ck out. Keep me updated as to your progress!

Open Original Shared Link

Open Original Shared Link

Insoluble Fiber: Fruits, vegetables, dried beans, seeds, popcorn, brown rice, and whole grain products such as breads, cereals, and pasta. Soluble Fiber: Fruits such as apples, oranges, pears, peaches, and grapes; vegetables, seeds, dried beans,.

[danikali]

Thank you for replying.

Well, I'm not really constipated anymore (after going gluten free). I wasn't when I saw Dr. Green. I was going every to every other day (amazing for someone who would only go once every two to three weeks), but blood filled the toilet from the stool being too hard, so that's why he gave it to me. I don't take it everyday, and I only take 1 instead of 2. But since I'm normal again, I think I should try going off of it.

And yes, I also took out dairy and soy from my diet because I already knew I had a problem with that.

I like your description of the difference between fiber and laxitives. It really helped because I never knew what the difference was. So, I think I'm going to stop taking any of the zelnorm for now and see what happens because I don't want anything artifical going into my intestines right now.

[jenvan]

so was the blood b/c of severe hemmoroids then?

[julie5914]

I was on zelnorm pre-diganosis because of bad constipation. I liked it because it helped me go, esp. when traveling, which was always more difficult for some reason. I don't remember it making stools softer though, and things weren't worse when I went off it, they just went back to the same. They were kind of like my last resort.

My advice for making stools softer would be Benefiber (make sure it's free of all the bad stuff - I'm not sure). It's clear powder that you can't taste. It used to make me run to the BR, but that was before the diet. The main point is that it does make stool soft. There are also stool softening pills out there that do not have laxative, but they are hard to find and you have to read all the small print to make sure it's laxative free. I think soluble fiber is a safer bet than insoluble. Insoluble will make you have to go, but it may be bulky and painful. Soluble tends to make them softer.

Have you had a coloscopy. It is probably hems, but you better check. Lots of blood in the toilet is never good.

[danikali]

I have the blood in the toilet thing from time to time since I was really little. And yes, I had a colonoscopy, and my doctor didn't even mention the hemroids, but when I asked for the test results myself, it was one of the items under the diagnosis colum. Soooo, because she didn't even tell me about them herself, I'm assuming they weren't that bad.....?

But the blood and the hard stool has cleared up. So that's interesting though that insoluble fiber will make the stool harder. Does soluble fiber even help you go to the bathroom though? And can too many fruits and veggies. make you constipated?

Anyway, since I got the diagnosis and the colonoscopy and everything done by another doctor, and then went to Dr. Green, we both agreed it would be pointless to go through all of that again. So he is having my test results sent to his office so he can decide the severity of everything for himself, which is a good thing. But as of right now, I have no idea why I bleed like that.

[jenvan]

But the blood and the hard stool has cleared up. So that's interesting though that insoluble fiber will make the stool harder. Does soluble fiber even help you go to the bathroom though? And can too many fruits and veggies. make you constipated?

If the blood was bright red then it means it comes from the lower end of your colon--like with hemmoroids. If it is dark blood...that is time for real concern, because the bleeding is higher up in the intestines. Hemmoroids can get pretty bad, bad enough that you will end up with what looks like a fair amount of blood in the toliet. It is painful to go to the bathroom then too. They are pretty common with frequent constipation. If the bleeding stays away as you are more regular, than most likely, it was hemmoroids. They can come and go depending on the status of your bowels.

Fiber doesn't necessary make your stool "harder", like in the sense that stools are hard when you are constipated...They make them solid, not hard, as opposed to D which is of course, more on the liquid side--not solid at all. When you have C your stools sit in your intestines for so long that they get packed down till they are really hard and dried out. Does that make sense ? Fruits and veggies shouldn't make you constipated as a whole--just more 'solid' if you have D or if you are really constipated, they will actually end up making them softer. There are some who will get constipated from eating a lot of one specific food--like bananas for example.

Hope this all makes sense

[danikali]

Yeah that makes sense. Thank you. That explains a lot. I also do eat a lot of bananas these days because when I get hungry at work and I'm out of food, I run out to a deli (I live in NYC, they are everywhere:) and I usually go for the bananas because I know they are completely safe because of the peel. I guess I should limit myself to one a day for those, huh?

I took a zelnorm yesterday before I started this topic, and now I'm going to go all natural again unless I start seeing some blood again.... and yeah, it is bright red, so it's got to be the hemroids.

What exactly are the best foods for the best stool? Would it be just a mix of fruits and veggies of all different kinds? Or are their specific kinds that will def. clean you out everyday. ........

[eeyor-fan]

Hi, I'm going to reply to myself:

Has no one been offered zelnorm? Am I the only one who has come across this decision?

I've been on zelnorm 2 years and you only have side effects for the first couple weeks of taking it. As long as you get it in the white pre sealed container then Novartis, the manufacturer, gurentees it is gluten-free ( I had contaminated Zelnorm once in the past from Walgreens after they opened the container from Novartis, recounted it with gloves covered in wheat talc and then put in their bottle). Zelnorm is not a laxative but a drug that helps the muscles in the GI tract work right. I had bad constipation for years and zelnorm has been a godsend to me, but for it to work properly you must take it EVERYDAY at the same time, not just occasionally. For the first couple weeks you might get a little tummy discomfort, or the runs, but that only lasts a couple weeks till the side effects go away. It is a good medicine as long as it is taken properly and I went off it for a while, and while my constipation was not worse than before I started using Zelnorm, it was still constant constipation. Thats why the doc put me back on it again.

Hugs

Bridget

If the blood was bright red then it means it comes from the lower end of your colon--like with hemmoroids. If it is dark blood...that is time for real concern, because the bleeding is higher up in the intestines. Hemmoroids can get pretty bad, bad enough that you will end up with what looks like a fair amount of blood in the toliet. It is painful to go to the bathroom then too. They are pretty common with frequent constipation. If the bleeding stays away as you are more regular, than most likely, it was hemmoroids. They can come and go depending on the status of your bowels.

Fiber doesn't necessary make your stool "harder", like in the sense that stools are hard when you are constipated...They make them solid, not hard, as opposed to D which is of course, more on the liquid side--not solid at all. When you have C your stools sit in your intestines for so long that they get packed down till they are really hard and dried out. Does that make sense ? Fruits and veggies shouldn't make you constipated as a whole--just more 'solid' if you have D or if you are really constipated, they will actually end up making them softer. There are some who will get constipated from eating a lot of one specific food--like bananas for example.

Hope this all makes sense

Sounds like she is a lot like me.

Fiber is good as long as you drink a lot of water with it, if you don't you end up clogged solider than a rock! As my dad used to say "Gotta get a brace and a bit!" Cheese is a killer too! Drink lots of water.

Hugs

Bridget

[jenvan]

Dani-

Cool pic of wedding cake! I am a fan of the square cakes. Mine was similar to the one in the pic. Pretty simple with a little piping on edges and a monogram with small bouquet laid across the top. I was married pre-gluten-free, so we had a regular cake-spice...it was good

This site has some good tips on it for constipation: Mentions other things to watch out for too that cause constipation--like certain medications Open Original Shared Link

Some tips for introducing more fiber... Eat skin of apples, potatoes etc when you can, add beans to salads, use spinach and cabbage in salads-not head lettuce, add flax meal to cream of rice/cereals you may eat or breads (don't go too crazy at first--see how your system responds), opt for brown rice and quinoa over white rice, try "whole grain cereals or bread" with added fiber/rice bran or made with flours like millet and quinoa rather than white rice, eat actual fruit rather than juices, add beans to soups you eat, snack on dried fruit and nuts rather than processed foods...that's what I can think of for now! I'd say mixing these foods around is best. I do try and eat beans several times a week. I don't have any issues with them bothering me. I found some great recipes too incorporating beans...ie. a sweet bean pudding--tastes like sweet potato casserole, and I make faux mashed potatoes--take great northern or pinto beans and puree till very smooth, then add some butter/marg., salt and pepper--taste good, not beany at all. I serve these as sides to meals. My dh likes them too.

I still recommend the pysllium--esp if you have a history of constipation--it can help clean you and out and jump start the process. I have one brand I like that I know is gluten-free...some aren't. If you want the product name, just let me know.

Below, some fresh foods with fiber...

Apples

Peaches

Raspberries

Tangerines

Acorn squash

Broccoli

Brussels sprouts

Cabbage

Carrots,

Cauliflower

Spinach

Zucchini

[danikali]

Thanks guys!

(You're cake sounds pretty too Jenvan! yeah, I think the square cakes are more "in" these days. I think they are really classy. And I am obsessed with bows, so when I saw this cake, I was completely sold!)

So good feedback on the zelnorm. I'm going to change my food around a little bit and see if that helps before I go back on the pill. I was going every to every other day just being on the gluten-free df diet, and only the couple of days before I saw the Dr. was I bleeding. So I bet I was just eating too many bananas or too much of the same foods. I want to try it the natural way and if that doesn't seem to work and stay constant, then I'll go back to the pill.

Anyway, actually, I've already taken out most processed foods except for rice cakes. (lundenburg gluten free). They are organic and have only like 3 ingrediants. Rice, natural apple flavor and cinimon, or something like that. I've even taken out candy and gum that I used to sneak in everyday. I noticed that my stomach blows up these days after having gum, and it aches a little, even if it's gluten free. So I'm thinking it's got to be all of the artificial crap in there.

I'm going to go read this constipation website you gave me. Thanks for your input ladies.

[eeyor-fan]

Dani-

Cool pic of wedding cake! I am a fan of the square cakes. Mine was similar to the one in the pic. Pretty simple with a little piping on edges and a monogram with small bouquet laid across the top. I was married pre-gluten-free, so we had a regular cake-spice...it was good

This site has some good tips on it for constipation: Mentions other things to watch out for too that cause constipation--like certain medications Open Original Shared Link

Some tips for introducing more fiber... Eat skin of apples, potatoes etc when you can, add beans to salads, use spinach and cabbage in salads-not head lettuce, add flax meal to cream of rice/cereals you may eat or breads (don't go too crazy at first--see how your system responds), opt for brown rice and quinoa over white rice, try "whole grain cereals or bread" with added fiber/rice bran or made with flours like millet and quinoa rather than white rice, eat actual fruit rather than juices, add beans to soups you eat, snack on dried fruit and nuts rather than processed foods...that's what I can think of for now! I'd say mixing these foods around is best. I do try and eat beans several times a week. I don't have any issues with them bothering me. I found some great recipes too incorporating beans...ie. a sweet bean pudding--tastes like sweet potato casserole, and I make faux mashed potatoes--take great northern or pinto beans and puree till very smooth, then add some butter/marg., salt and pepper--taste good, not beany at all. I serve these as sides to meals. My dh likes them too.

I still recommend the pysllium--esp if you have a history of constipation--it can help clean you and out and jump start the process. I have one brand I like that I know is gluten-free...some aren't. If you want the product name, just let me know.

Below, some fresh foods with fiber...

Apples

Peaches

Raspberries

Tangerines

Acorn squash

Broccoli

Brussels sprouts

Cabbage

Carrots,

Cauliflower

Spinach

Zucchini

Jen I didn't know you were the Queen of Constipation.....LOL

See I call you Obi Won for good reason.

Hugs

Bridge

[jenvan]

Queen of Constipation!! That is funny Yeah, I do know a lot about it--having dealt with it for a while! My dh would probably love that nickname! I am queen no more though! Happy '06 Bridge!

[chandler]

In reply to your questions about Zelnorm - Unfortunately while I found the drug to really help me feel "normal" again - what does "normal really feel like?" I had some unexpected side effects that even puzzled my doctor. All of my joints began to get very achy to the point where it was an effort to walk (I am very active and go to the gym at least three times a week) come to find out my sed rate was very high. When going off the drug the sed rate went down and pain went away. To test we tried again and the same thing happened. so...my recommendation is to try but be aware of those symptoms as they are not mentioned as possible according to the lit but can in fact occur. Good luck!

[debmidge]

My goal is not to be constipated as I developed fissures it was so bad. I get bound up by eating certain foods, like chocolate. But overall I've had this problem since I was a teen. About 15 years ago I ended up needing an operation on my sphincter muscle (sphincterectomy) in addition to hemmorrid surgery. The muscle was too tight from years of dealing with straining (and in a sense that action was excercising the muscle group - the only muscle group in my body that was in the best shape! Just my luck! Talk about "buns of steel"!).

Anyway, I lived on psyllium like Metamucil and Colace Stool Softeners. When I get into constipation trouble, or I know I didn't eat enough fiber during day, I take one stool softener (not the whole dosing that the bottle says). Years ago these stool softeners used to be by prescription only. A goofy gastro gave them to my celiac husband (when he had diarrhea all the time!) when he first got sick. Mike took the stool softener as instructed and the next day said "What the heck?!").

[jenvan]

Deb-so you are doing better now?

[MACE]

Hi everyone! How are your holidays going?

I haven't written in a long time! Anyway, I reccently went to the famous Dr. Green in New York City for help with everything because I was having way too many problems to cope on my own and I was sick of the doctors that I've had not helping.

Anyway, he gave me zelnorm to help keep me regular. I've been taking it in moderate for the past few days now, but I'm very skeptical on medicine like this. Especially since this drug, specifically, is so new. Anyway, I'm sure some or most of you have come to this crossroad, so I have some questions:

1. Have you had any side effects on Zelnorm?

2. Do you know if you depend on this drug to go the bathroom, does it make it worse when you go off of the pill?

3. Is it like every other laxitive that eventually, you need to "up" the dose?

4. If you haven't taken it, and had the option to, why didn't you?

5. If you do take it, do you think it helps? Are there any bad aspects of it that you have noticed?

6. Anything else you might want to add about this drug?

Thanks guys! Even though I'm going to the suposed expert of Celiac Disease, I know I can always depend on this forum to give me honest, helpful and "real" answers, more than any doctor.

I WAS GIVEN ZELNORM AND I HAD THE RUNS SO BAD FROM IT THAT I COULD NOT GET OUT OF THE BATHROOM. WAS THEN TOLD TO STAY ON IT FOR A FEW DAYS LONG BECAUSE IT WOULD TAKE BODY A FEW DAYS TO ADJUST TO IT. WELL MINE NEVER DID, KEPT THE RUNS SOMETHING AWFUL. AT THAT POINT DOCTOR TOLD ME TO STOP TAKING BUT TO KEEP THEM AND IF AND WHEN I FELT LIKE I REALLY NEED TO GO AND COULD NOT TO TAKE JUST ONE AT THAT TIME. THAT IS WHAT I HAVE DONE A COUPLE TIMES. IT WAS STILL BAD ENOUGH THAT I COULD NOT LEAVE THE HOUSE FOR A COUPLE DAYS FOR RUNNING TO THE BATHROOM. AT THAT POINT I WAS TOLD TO TAKE A STOOL SOFTNER EVERYDAY. MAKE SURE IT IS A SOFTNER KIND AND NOT A LAXITIVE KIND. DOING THE STOOL SOFTNER HAS HELPED ME.

[Rae]

Hello,

I take Zelnorm and it has helped my constipation. I only take it once a week (6mg) because taking it everyday was too much for my stomach. I would suggest that you talk to your doctor for his advice and proper dosage (because it is different for everybody and has different kinds of effects). Also I am not sure if it would be bad to take with your history of stomach sx. But it is worth bringing it up to your doc

[Rae]

I'm sure some or most of you have come to this crossroad, so I have some questions:

1. Have you had any side effects on Zelnorm?

2. Do you know if you depend on this drug to go the bathroom, does it make it worse when you go off of the pill?

3. Is it like every other laxitive that eventually, you need to "up" the dose?

4. If you haven't taken it, and had the option to, why didn't you?

5. If you do take it, do you think it helps? Are there any bad aspects of it that you have noticed?

6. Anything else you might want to add about this drug?

Thanks guys! Even though I'm going to the suposed expert of Celiac Disease, I know I can always depend on this forum to give me honest, helpful and "real" answers, more than any doctor.

1. I been taking Zelnorm for a few months and did not run into any side effects. The one day I do take it, my stomch feels a little bloated and once in a while i might get diarrehia, but I feel its worth it.

2. This question is hard. I took it for a few months and then i stopped. A few weeks later I was constipated, so I went back on. I have now been on Zelnorm for about 5 mo, but there still are times where I get constipation "episodes".

3. Actually I "down" the dose. I was taking it 3x a week, then I went to 2x a week, and now I take it only once a week and it seems to help me throughout the week.

4. The reason I got off of it for a little bit bc I was scared bc it is a new drug. And on the directions it says to only take it for 2-4 months (i think) and my doc has me taking for much longer than that- so I am a little skeptical about it

The first time you take Zelnorm beaware bc you might have diarrehia for the first 3/4 x you take it. Dont get scared b/c it will go away (your body needs to get used to it) and you will take normal bowel movements several times that day.

My advice is to take the pill on a day where you can be home, like a sunday.

hope this helps-renee

[danikali]

Wow that's interesting you had joint and muslce pains from Zelnorm, chandler. Well, I've decided that I'm not going to take them at all........I haven't taken it since I started this post, and I go to the bathroom everyday with no blood. I'm sure it had to be because I was eating way to many bananas and not enough of a variety. I'm doing that now and I feel a lot better. So, I really don't need this pill because so far, so good. Why take medicane that I'm sure would give me side effects (even small ones, as all medicane does), when I'm not having a problem with it in the first place.

I may have seen the famous Dr. Green, but he is no different than other doctors when it comes to handing out medicane like it's nothing.

Thanks for the help everyone! I knew I could depend on you guys for informative input to help me make the right decision for myself.

[jenvan]

Dani-

So glad you're feeling better. Hope things continue to get better and better for you!

[danikali]

Dani-

So glad you're feeling better. Hope things continue to get better and better for you!

Thanks Jen!

Yeah, it feels so good to go a whole week of feeling good. I'm being so careful about everything, it's not even funny! The only thing I'm worried about is that in 2 weeks from now, I'm going on vacation, and although for the most part we'll be staying at my fiance's parents winter home, 2 nights we're going to be at a hotel in South Beach and one night, in Orlando. I'm just so paranoid of eating at resturants these days, ya know? Any tips?

[jenvan]

I put most of my traveling tips in your traveling thread...but for restaurants...safest bet is to ask for the manager to discuss your needs, pick simple foods like a plain meat, steamed veggies, baked potato, salad etc and impress that the pans/utensils used to cook the food must be cleaned and that your salad must be mixed in a clean bowl (some places mix all salads up in several bowls before placing in serving bowl). Apples and oranges travel pretty well too, and are another good supplement for meals. I brought my own cookies too. Oh, I did make up some gluten-free banana muffins before the trip too, froze them, then pulled them out in a baggie to take with me, and put in the cooler.

[debmidge]

Jen

Doing good (had operation for this in 1992); just have to make sure I avoid constipating food and take my stool softeners (ones without laxative in them).

I swear by the Colace stool softeners. The Metamucil isn't enough sometimes, so I combine it with the stool softeners. I've never tried Zelnorm. Trying to get my husband to take it, but he's stubborn.