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View Full Version : Zelnorm, IBS-C, Long colon


SRMom
08-05-2006, 03:17 PM
I finally had a colonoscopy on Thursday after a year and a half of trying to diagnose my lower left abdominal pain. I actually had hysterectomy in January because they thought my pain was from endometriosis. I never had constipation before my surgery, just pain. The constipation started after my hysterectomy. The colonoscopy revealed that my colon is healthy, but it is extra long and has extra loops, which the doctor said could account for the pain I've been suffering. He diagnosed me with IBS-C. I had been taking Miralax, which helped a bit, but now he wants me to try Zelnorm.

I took my first dose yesterday. I still had diarrhea, I am assuming is leftover from my bowel prep for the scope, but last night I had the most terrible nightmares. I know Zelnorm works on serotonin in the intestines. In the past I have taken other serotonin meds for anxiety, the latest being Paxil, which I could not tolerate and caused me to have terrible nightmares, among other bad side effects.

My questions for those who have taken Zelnorm are what side effects have you had? Has anyone else experienced nightmares? What doses work for you? Any advice is welcome. By the way, I also take probiotics, digestive enzymes, calcium/magnesium/zinc, and fiber supplements. Are these all things that I should be doing? Thanks for your help.

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elmhar
08-05-2006, 05:55 PM
Hi SR Mom,

Is it possible that you still had a trace of the sedation meds from the colonoscopy, and that those interacted with the Zelnorm? People vary in their rate of med metabolism. Depending on how bad your Zelnorm experience was, you may want to give it another try after a few days.

You're doing all the right things. Some of us find that stress reduction helps the pain. There are subsets of IBS sufferers, some reporting success w/antibiotic treatment, some finding one particular probiotic more helpful than other brands, some like me who've had total success by tracking down food intolerances, and others who are still seeking.

There are other IBS-C meds besides Zelnorm -- maybe your doc will help you find something that works.

Best wishes.

bulletinboard25
08-05-2006, 07:07 PM
Hey, in my opinion, I would wait a few days to start on the Zelnorm to let your system normalize after the colonoscopy prep. My gastro recommended I wait 5 days before resuming IBS medications.

Zelnorm really works in the intestines, so it's doubtful that you'll react the same way to it as other antidepressants that work on different receptor sites at different places.

I'm sure you know zelnorm works on the 5ht4 receptor site in the intestines. Basically, it works as an accelerator, so to say. Lotronex works on the 5ht3 receptor site in the intestines, and acts as the "brakes" in the equation.

There is another new med that got approved called Amitza that you may inquire about if the Zelnorm doesn't work for you. I'd wait a few days (maybe even 1 week) before I started it, like I said, and then I'd give it 4 weeks, at least, to see if it worked before I stopped taking it.

dawn4323
08-16-2006, 09:36 PM
Be careful with Amitiza. It has a nausea side effect (40%) profile. If you are already experiencing stomach upset, it may exacerbate it.

Moch356
08-21-2006, 08:41 AM
This message is in reply to ELMHARs email below.

You're doing all the right things. Some of us find that stress reduction helps the pain. There are subsets of IBS sufferers, some reporting success w/antibiotic treatment, some finding one particular probiotic more helpful than other brands, some like me who've had total success by tracking down food intolerances, and others who are still seeking

What foods agrivate constipation? I love salads and eat them almost everyday but find that it makes my stomach go crazy. Is it the lettuce or cucumbers? Any thoughts on this or do you have the opposite of IBS?

I have chronic constipation and have a call in to my doc to get Zelnorm. I haven't gone in 5 or 6 days now and have tried everything on the market to relieve it....and nothing has helped. I even did a fleet twice.

Piano0105
08-21-2006, 04:02 PM
Moch356,

I, too, love salads, but they cause so much bloating. They used to help me with constipation, but they don't seem quite as effective any more. I know that cucumbers cause a lot of gas, not lettuce. I'm going to continue eating salads, however, since they provide a lot of nutritional value.

Have you tried Fleet's Phosphosoda for constipation?

elmhar
08-21-2006, 04:23 PM
What foods agrivate constipation? I love salads and eat them almost everyday but find that it makes my stomach go crazy. Is it the lettuce or cucumbers? Any thoughts on this or do you have the opposite of IBS?

Hi Moch356,

What aggravates constipation in one person might not in another. But usually a diet with more fiber & water is better for constipation than one with less fiber & water.

So you find that salads make your stomach upset. Well, you need to parse out all of things that go into the salad: lettuce, cuke, tomato (maybe), other veg (maybe), croutons, & salad dressing.

Try going several days without lettuce, see your gut is good. Then, eat a good-sized serving of plain, clean lettuce. (No dressing -- I realize that is a bummer, but this is an experiment.) Does the lettuce flare your gut up? If not, maybe it's something else in the salad. This method of testing for food intolerances is called dietary elimination & challenge (DEC). You can do DEC for each component of the salad that causes your gut to react.

There are lots of people who are sensitive to one or more veggies. The trick is to find out which ones upset your gut, which ones don't. That way you can still have a healthy diet while avoiding the things that upset your stomach.

It's also not uncommon for people to be intolerant of certain common ingredients in salad dressings. If all of the plain veggies "check out OK" after DEC, then you may be intolerant of vinegar, or certain veg. oils, or MSG, which is commonly found in many commercial salad dressings.

I did suffer from severe IBS-C for 5 decades, was hospitalized 3 times for it, tried a number of meds to no avail. For me, the trigger was gluten, which is in A LOT of foods. I have been gluten-free, and symptom-free, for over 2 yrs. now, which is almost a miracle for me, as I was regularly bedridden with pain & cramping due to IBS several days per month. However, not everyone w/IBS food intolerances has a gluten issue.

Good luck with the Zelnorm. I hope it helps you.

Best wishes.

SRMom
08-22-2006, 03:30 PM
Elmhar:

Can you develop gluten intolerance late in life? Can gluten intolerance cause constipation as well as diarrhea? I am 46 and never had any troubles before this past year. I honestly can't figure out what, if anything, is triggering my problems. It seems to be the same everyday, no matter what I eat or drink, or if I'm active or resting, etc.

I tried the Zelnorm again for a couple of days after things settled from my scope. I had diarrhea both days, pretty soon after I took the pills. I have stopped taking them and have had fairly normal BM's everyday since then. I doubt only two days of taking Zelnorm could have "fixed" the problem. I'm waiting a little longer to call my doctor to try another prescription since I seem to be okay at the moment, as far as the constipation is concerned.

However, I still have the pain. Even though things are moving along...I'm in pain everyday, like I have been for a year and a half. Ugghhh!! What do people do who are in my situation? Just live with pain? Take pain meds every day? Crawl in bed and pull the covers over their head? I feel so sorry for my family...all I do is complain it seems.

elmhar
08-22-2006, 05:19 PM
Elmhar: Can you develop gluten intolerance late in life? Can gluten intolerance cause constipation as well as diarrhea? I'm in pain everyday, like I have been for a year and a half. Ugghhh!! What do people do who are in my situation? Just live with pain? Take pain meds every day? Crawl in bed and pull the covers over their head? I feel so sorry for my family...all I do is complain it seems.

Hi SRMom,
The answer to your both of your questions is yes. It is possible to have "latent celiac disease" that shows up after a stress (surgery, illness, divorce, infection, etc.). And I believe other forms of gluten-intolerance, like wheat allergy, and non-celiac gluten intolerance, can also be triggered by life stressors. The largest segment of recently-diagnosed celiacs in the gluten-intolerance support group I attend are middle-aged & older folks. Classic celiac disease is characterized by diarrhea, but atypical celiacs often suffer from constipation. Nonceliac gluten intolerance can present as constipation, bloating, pain, nausea or diarrhea.

But does that mean that gluten intolerance is your issue? I really can't say. There are various blood tests for different types of gluten intolerance, but they aren't universally accurate. I have no gluten intolerance antibodies of any stripe, but the diet is very helpful to me.

Most gastro docs, at the present time, feel that the gluten-free diet should be reserved for those with endoscopy-diagnosed celiac disease. Since the GF diet has some difficulties associated with it, it is a good idea to be tested for celiac disease if one is considering the diet. Because if one does turn out to be celiac, the diet is a 100%, 24/7/365, life-long deal. You do need to be consuming gluten for testing to be accurate. If a person "thinks" they might be gluten intolerant, tries the diet & gives up due to social or whatever difficulties, they possibly could be condemning themselves to some of the nasty side-effects of untreated celiac disease.

I personally am pro-CD testing, but I don't see a problem with doing a GF diet trial if tests for celiac are negative. GF diet is an opportunity to return to a healthy "whole foods" diet, since most convenience & boxed foods are off-limits. It's an opportunity to add variety to the diet -- how many people eat teff, quinoa, amaranth, sorghum, & buckwheat? These are all delicious grains, nutritious & gluten-free. And of course there are the old standbys, rice, potato & corn. We also have many more GF products commercially available in specialty stores/sections: cold cereals, pastas, cookies, baking mixes.

If you are interested in learning more about GF diet, one of the best books I can recommend is Gluten-Free Living for Dummies by Danna Korn.

How do people live with the pain? It varies. When I had IBS-C, my flares were severe (the spasms immobilized me -- I did take to bed), but only happened a few days per month. I tried pain meds, but all they did was to distance my mind from the pain -- I still felt the pain, and I was incapacitated from the meds. But pain meds work for some.

Best wishes.

SRMom
08-22-2006, 05:40 PM
Thanks elmhar! You are very kind to share your experience and knowledge. It seems to me that many people that go down this road have been helped by a gluten-free diet. I may need to try this at some point. Thanks for the book recommendation too.

Best wishes to you also :)

Moch356
08-23-2006, 01:25 PM
Does Beano work prior to eating salads?

I started the Zelnorm yesterday so its too soon to tell if it will work this time. My thing is, if this works and it states its not for long term use, whats the point of taking it at all. I need long term help not short term relief.

SRMom
08-23-2006, 02:16 PM
I've used Beano before eating my special pasta fazool (with pinto beans) and it does work. I haven't tried it for salads, but sounds like it's worth a try.

My understanding of Zelnorm is that you take it for several weeks and it kind of resets your digestive system so it can work on it's own again. I look at it like a medicine that actually cures (like an antibiotic cures an infection) rather than a maintenance type of medicine you need to take every day. It works differently than laxatives by coordinating the nerves and muscles of the digestive tract, not just by adding water and bulk to the stool like laxatives. I believe you can take Zelnorm up to 12 weeks if it helps you, but the recommended course is 4-6 weeks.

I just took Zelnorm for a couple of days last week and had extreme diarrhea, but when I quit, my constipation seemed much better. Coincidence maybe? It could be attributed to my colon prep from my colonoscopy too...who knows? I'm just glad things seem to be moving again :)

Good luck to you...let us know how it works.

Moch356
08-23-2006, 05:22 PM
Ohhhhh, then that makes sence.

I had the colonoscopy not long ago so I know my track is on track. hehe

My recent bout with constipation was the worst I have ever had it. I wonder if it is attributed to the colon cleanse I did the month of July. Has anyone tried this?

 
 
 




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