# Zelnorm and Prucalopride win FDA panel's backing for constipation



## annie7 (Aug 16, 2002)

https://www.medpagetoday.com/gastroenterology/irritablebowelsyndrome/75810

hooray!! this is huge. finally we'll have not one but two C meds that increase peristalsis and motility--not like linzess, amitiza and trulance which only add fluid to the colon.


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## jthigpen (Jun 18, 2018)

This is great!! The article didnt say when the drugs would be available to us...is it already able to be prescribed??


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## annie7 (Aug 16, 2002)

no, unfortunately neither of these meds are available yet.

so far i haven't read anything to indicate when zelnorm will be available.

according to this article, prucalopride should be approved by the fda around december 21. and then it should be available in the first half of 2019..

https://globenewswire.com/news-release/2018/03/05/1415104/0/en/U-S-FDA-Accepts-New-Drug-Application-for-Prucalopride-SHP555-for-Chronic-Idiopathic-Constipation.html

prucalopride is currently available in canada. if you can get your doc to write you a script for it, you can buy it from one of the canadian online pharmacies like canada pharmacy online.com it's quite expensive, though.

https://www.canadapharmacyonline.com/DrugInfo.aspx?name=Resolor6820


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## Tiss (Aug 22, 2000)

Hi Annie, I wonder what happened that zelnorm isn't on the banned list? Wonder if they changed the ingredients? Hope you are doing well.


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## annie7 (Aug 16, 2002)

Hi Tiss









no, from what i've read, it doesn't sound like they changed the ingredients at all--the new pharma is just going to market it to a narrower, "lower risk" population--people for whom the benefits would outweigh the risks.

https://www.medpagetoday.com/gastroenterology/irritablebowelsyndrome/75739

i remember i was devastated when they took zelnorm off the market. i'd far rather risk having a heart attack than being totally backed up, miserable and C all the time. after they pulled it here, i bought zelnorm from medsmex and then i bought tegaserod (the generic, which was cheaper) from a foreign online pharmacy until they finally pulled it worldwide.


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## joeyr2 (Jul 14, 2013)

Does anyone know if this drug causes diarrhea in constipated people who are prone to it?


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## Phata4 (Apr 8, 2018)

Thank you so much


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## Darklight00 (Jun 2, 2007)

Annie did zelnorm worked for you despite the very serious colon inertia that you had?



annie7 said:


> i remember i was devastated when they took zelnorm off the market. i'd far rather risk having a heart attack than being totally backed up, miserable and C all the time. after they pulled it here, i bought zelnorm from medsmex and then i bought tegaserod (the generic, which was cheaper) from a foreign online pharmacy until they finally pulled it worldwide.


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## annie7 (Aug 16, 2002)

yes, it worked fairly well. for me, it worked better if i took 12 mg of it in the morning instead of the prescribed 6 mg twice a day.

one thing though--i found i developed a tolerance to it rather quickly. others here had the same problem. so i would take it only two or three times a week and periodically took a week long drug holiday from it and all that kept it working for me.


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## wgbutler (Mar 15, 2018)

Annie,

On a scale of 1 to 10, where 10 is completely normal and 1 is your worst day, how effective generally was Zelnorm?

Did it give you a normal quality of life or did you still struggle with C a lot of times?


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## annie7 (Aug 16, 2002)

oh it was a 9 or a 10. i felt good on the days that i took it--a normal quality of life.

on the days that i didn't take it, i felt pretty bad---couldn't go much unless i took milk of mag or a laxative the night before.


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## dac122 (Feb 13, 2012)

If I am reading the article correctly, there is still some limited concern over Zelnorm having cardiac risks. I would not be surprised if Docs still will want you to get a cardiac work up before prescribing.


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## dac122 (Feb 13, 2012)

I am curious, does anyone know how Zelnorm can come back to market, while other drugs like propulsid and domperidone are still banned? Perhaps a deeper analysis of the data showed it was not the risk they thought?

Still very happy we could get two new tools.


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## annie7 (Aug 16, 2002)

well, there is this article which discusses zelnorm and CV risks

https://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/GastrointestinalDrugsAdvisoryCommittee/UCM623349.pdf


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## wgbutler (Mar 15, 2018)

Annie,

You've mentioned before that you eventually had to get an ileostomy bag. How is your quality of life with the ileostomy bag? Do you get used it? Does it basically get to the point where you don't think about it anymore, or did you just trade one set of horrible problems for another completely different set of horrible problems?

Sorry if I've asked this before. I often wonder if getting my colon removed is the real solution to my generally sucky life.


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## annie7 (Aug 16, 2002)

oh my quality of life is much better with the bag.

i very much wanted my ostomy. my constipation had become so bad that my gastro doc was having me do half a colonoscopy prep every week (in addition to daily stimulant and osmotic laxatives) in order to avoid getting too backed up. living like that was truly miserable. when i'd finally had enough, i went to my colorectal surgeon and told him i wanted an ostomy.

and sure, there's a learning curve to these things as far as what kind of bag works best for you, but my stoma nurse helped me figure all that out.

so no, i didn't trade one set of problems for another, thank goodness. i think about my ostomy, of course, because i have to empty the bag periodically throughout the day but it's really a joy to be able to empty it because to me that means that i'm no longer having to struggle to poop. such a relief.

i'm really sorry you're having such a hard time of it. i do hope that these new meds in the pipeline will help you.


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## wgbutler (Mar 15, 2018)

Thanks Annie. I'm glad your life is much better now. I hope the new medicines make a difference. I'm just trying to hold out until then. I also hold out hope that someday I may be back to normal, because that is what happened to me when I was in college. I spent out 5-7 years with these same symptoms and then one day it just went away and I had a basically normal life for the next 25 or so years.

It's not always bad for me. Some days when I'm able to go in the morning I make it through without discomfort or pain and I feel basically normal. The problem is that too many days I can't go and I'm miserable all day. And I don't like taking the medicines that give me D for 3 hours, but that's better than being clogged up.

I will say that the Trulance has helped me not be depressed, because I know that no matter how bad I might feel during the afternoon, as soon as I get home I can take a Trulance and give myself some relief. Before Trulance I would be clogged up for days at a time and I felt some real despair.


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## annie7 (Aug 16, 2002)

oh that's amazing that that you went back to normal after suffering with C. i do hope that happens again for you!

and that's good that you have some days that you're able to go but, right--the problem is the days when you can't. that's miserable. and not fun having to take meds that give you D for three hours although, yes, agreed-- that's better than being clogged up.

hopefully the new meds in the pipeline won't give people all that D. zelnorm didn't give me D. it just helped me go. and hopefully prucalopride will be like that, too. both of these meds help peristalsis instead of adding fluid to the colon like the current meds that we have do.


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## dac122 (Feb 13, 2012)

When I asked my Doc about prucalopride he was a bit pessimistic because of the history of drugs like this causing cardiac events, so I am being cautiously optimistic.

I think prucalopride will be a *huge *success if it can help some and it comes without any cardiac events. I am hopeful zelnorm is available at least in limited fashion.

I gotta believe at some point they will figure this out. There has to be a big $$$ market for a pro-motility drug without cardiac issues.


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## wgbutler (Mar 15, 2018)

dac122 said:


> When I asked my Doc about prucalopride he was a bit pessimistic because of the history of drugs like this causing cardiac events, so I am being cautiously optimistic.
> 
> I think prucalopride will be a *huge *success if it can help some and it comes without any cardiac events. I am hopeful zelnorm is available at least in limited fashion.
> 
> I gotta believe at some point they will figure this out. There has to be a big $$$ market for a pro-motility drug without cardiac issues.


I think there is already a drug that will help the C without any cardiac issues. It's called Elobixibat and its approved for use in Japan. Interestingly enough, I read one report where it also has cholesterol lowering properties!

Another drug that should help C is Tenapanor. It works kind of like Trulance but I don't think the D is as bad, according to a meta analysis I read yesterday. That's been submitted to the FDA, I'm not sure what what the schedule is for approval though.


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## Linaki (Oct 24, 2018)

dac122 said:


> I am curious, does anyone know how Zelnorm can come back to market, while other drugs like propulsid and domperidone are still banned? Perhaps a deeper analysis of the data showed it was not the risk they thought?
> 
> Still very happy we could get two new tools.


I was on it before it was removed and I'll go back on it as soon as it's back on the market. I had taken Celebrex before for other issues before it was pulled from the market. They fixed it and put it back on and I've been taking it for 3 years now. I have neck issues and it's the only thing that helps with inflammation in my neck. I've had a full cardiac work up and my heart is in great shape so I'm really not going to be overly concerned about the cardiac risk of Zelnorm. My constipation problem is "for me" a much bigger issue than a small risk of another problem. Everyone is going to have to make their own decision on it. I spoke with my gastro and he agreed it was THE best medication out there for constipation and was as excited as I was that it could be coming back.


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## annie7 (Aug 16, 2002)

update on zelnorm:

FDA approves the reintroduction of zelnorm...:

https://www.prnewswire.com/news-releases/fda-approves-the-reintroduction-of-zelnorm-tegaserod-for-irritable-bowel-syndrome-with-constipation-ibs-c-in-women-under-65-300821611.html

the article says that zelnorm will be available "in the coming months". i hope that means fairly soon.....

the contact number for more information is: 855-697-9232.


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## wgbutler (Mar 15, 2018)

annie7 said:


> update on zelnorm:
> 
> FDA approves the reintroduction of zelnorm...:
> 
> ...


BOOYAH! We're finally get some other options to help manage this miserable condition.


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## annie7 (Aug 16, 2002)

yes--hooray!!!!

i sure do hope that Sloan pharma rolls out zelnorm quicker than Shire did motegrity....


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## annie7 (Aug 16, 2002)

and hopefully when zelnorm does comes out, your GI doc will write you a script for it right away instead of waiting a few months like he usually does because zelnorm is NOT a "new" drug--it's been around before.


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## wgbutler (Mar 15, 2018)

annie7 said:


> and hopefully when zelnorm does comes out, your GI doc will write you a script for it right away instead of waiting a few months like he usually does because zelnorm is NOT a "new" drug--it's been around before.


I wonder why its only approved for women. I suppose I don't understand how chronic constipation affects men and women differently. And it used to be approved for men as well.

I suppose this is just they way they are doing it, and I'm sure that eventually it will be approved for men. In fact, it will probably even possible to prescribe it for men before men are specifically approved to use the drug.


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## wgbutler (Mar 15, 2018)

Later on this September Tenapanor should be FDA approved as well. So this year we can add three new drugs to the arsenal against this problem (Motegrity/Prucalopride, Zelnorm, and Tenapanor). It's nice to see more and more options being added to the list after such a long time of only a few drugs.


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## annie7 (Aug 16, 2002)

wgbutler said:


> I wonder why its only approved for women. I suppose I don't understand how chronic constipation affects men and women differently. And it used to be approved for men as well.
> 
> I suppose this is just they way they are doing it, and I'm sure that eventually it will be approved for men. In fact, it will probably even possible to prescribe it for men before men are specifically approved to use the drug.


 this question of why zelnorm was/is only approved for women came up here before, a long time ago when it first came out. someone asked why was it only approved for women and one of the mods at the time said that this is because for some reason, the clinical trials for zelnorm were only run on women--not men. i wish i could find that post. i remember that a number of men said that they were taking it and it worked fine for them.


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## annie7 (Aug 16, 2002)

wgbutler said:


> Later on this September Tenapanor should be FDA approved as well. So this year we can add three new drugs to the arsenal against this problem (Motegrity/Prucalopride, Zelnorm, and Tenapanor). It's nice to see more and more options being added to the list after such a long time of only a few drugs.


yes, that's wonderful!!!!! Finally!!!!!!!


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## annie7 (Aug 16, 2002)

wgbutler said:


> I wonder why its only approved for women. I suppose I don't understand how chronic constipation affects men and women differently. And it used to be approved for men as well.
> 
> I suppose this is just they way they are doing it, and I'm sure that eventually it will be approved for men. In fact, it will probably even possible to prescribe it for men before men are specifically approved to use the drug.


ok--here's a post from back in the day about all this . (although i find kathleen's answer a bit hard to follow)

https://www.ibsgroup.org/forums/topic/49799-zelnorm-why-only-for-women/

i wish i could find the other, better posts on the subject.


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## wgbutler (Mar 15, 2018)

annie7 said:


> ok--here's a post from back in the day about all this . (although i find kathleen's answer a bit hard to follow)
> 
> https://www.ibsgroup.org/forums/topic/49799-zelnorm-why-only-for-women/
> 
> i wish i could find the other, better posts on the subject.


Annie,

If the FDA had never pulled Zelnorm from the market do you think you would still have had to gotten surgery, or would you have just kept taking the drug and lived a fairly normal life?


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## annie7 (Aug 16, 2002)

oh i don't know...that's hard to say.

over the years my colonic inertia and pfd just seemed to get worse and worse...

plus my body developed a tolerance to zelnorm very easily. it didn't work for me if i took it every day. it worked much better for me if i took it every other day--monday, wednesday and friday--and then didn't take it on the weekend and also took a week long drug holiday from it once a month. plus, to get it to work, i had to take 2 6 mg tablets in the morning instead of one 6mg in the am and one in the pm, as prescribed. and later i found that if i took milk of magnesia with it, it worked even better.

also--after a couple years my insurance company decided to stop paying for it. i called them up about this and the woman told me i "could just take laxatives". (!)

so i really don't know if i would have still had to have surgery or not.


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## kms66 (Apr 7, 2019)

I was so happy to see zelnorm might be coming back but now I see its only being approved for women under 65. What about us women over 65 with ibs-constipation


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## annie7 (Aug 16, 2002)

if you don't have cardiac issues or any other risks, your doc might still decide to prescribe zelnorm for you despite your age, if you want him/her to.

from what i've read, the FDA's advisory panel recommended expanded use of Zelnorm on the stipulation that the drug be used only in women and not in men or people aged 65 and over, citing a lack of information on the effects of the drug in men and adults over 65.

otherwise, you can try motegrity. motegrity has no age restrictions. like zelnorm, motegrity is a high affinity selective serotonin type 4 (5-HT4) receptor agonist--a prokinetic med that stimulates colonic peristalsis, increasing bowel motility.


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## wgbutler (Mar 15, 2018)

annie7 said:


> if you don't have cardiac issues or any other risks, your doc might still decide to prescribe zelnorm for you despite your age, if you want him/her to.
> 
> from what i've read, the FDA's advisory panel recommended expanded use of Zelnorm on the stipulation that the drug be used only in women and not in men or people aged 65 and over, citing a lack of information on the effects of the drug in men and adults over 65.
> 
> otherwise, you can try motegrity. motegrity has no age restrictions. like zelnorm, motegrity is a high affinity selective serotonin type 4 (5-HT4) receptor agonist--a prokinetic med that stimulates colonic peristalsis, increasing bowel motility.


I'm actually going to try to get access to both of them this year and do a comparison. Zelnorm should be available in 4 months or thereabouts.

Wish me luck. I have an appointment with my colorectal surgeon on Wednesday and I'm going to ask for a prescription for Motegrity. I expect him to say "no" as he has told me to ask my GI in the past when I asked for another prescription.

And next week (April 16th) I have an appointment with the GI. I'm going to ask for a prescription for Motegrity then, assuming that I haven't already got it. And hopefully I will FINALLY get to try this drug out. I'm really hoping for another alternative to Linzess/Trulance. Although I will say that I've somewhat gotten used to waking up at 3:00AM and taking Linzess, going back to sleep, and when I wake up 3 or 4 hours later just holding out until 10:00 or 11:00 when its out of my system. And though that usually does the trick, I'd still prefer to have a better option.


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## annie7 (Aug 16, 2002)

Good Luck!!!!!!!!!!!!!!!!!!!

good luck with your c/r surgeon (even though you expect he'll say "no") and yes, especially good luck with your GI!

i'll be thinking about you. and praying. keep us posted.


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## wgbutler (Mar 15, 2018)

annie7 said:


> Good Luck!!!!!!!!!!!!!!!!!!!
> 
> good luck with your c/r surgeon (even though you expect he'll say "no") and yes, especially good luck with your GI!
> 
> i'll be thinking about you. and praying. keep us posted.


Even though he had never heard of the medicine, the c/r surgeon said YES!!!! They have already called in the prescription (I just checked the express scripts website). Unfortunately, something went wrong with the transmission of of the prescription so express scripts is calling them to clarify some things, but I don't expect any issues. Just to be on the safe side, i called back the C/R surgeon and made sure the nurse had all the correct information to send to express scripts.

All this to say that I will likely finally have a chance to try this within the next week or two! I'm so excited.

Also, here is some interesting news. The C/R surgeon doesn't think there is anything wrong with my colon and thinks that I have a pelvic floor problem. He's ordered a bunch of tests for me to take so I will be doing that over the next couple of months.


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## annie7 (Aug 16, 2002)

omg!!!!!!!!!!!!!!!!!! YES!!!!!!!!!!!!!!!!!!!!























hooray!!!!!!!!!!! that's wonderful !!!!!!!!!!!!!!!!

thanks so much for the update! i was thinking about you today and praying all would go well. i'm so happy and excited for you! hopefully express scripts will have your script ready for you in a day or two. you said they had it in stock--- right? keep us posted!!

yes, that is interesting about the what the c/r surgeon said--about your colon being ok and that you might have a pelvic floor problem. i went through all those tests--it's worth it to get a diagnosis. if it does turn out that you have pfd, biofeedback and physical therapy can help.


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## wgbutler (Mar 15, 2018)

annie7 said:


> omg!!!!!!!!!!!!!!!!!! YES!!!!!!!!!!!!!!!!!!!!
> 
> 
> 
> ...


Everything's cleared up with Express Scripts. I see Motegrity 2mg 90 day quantity listed in my prescription orders. I also have 3 refills so I'm good for the next year. Plenty of time to try it out.

I should have it by the end of next week. I have an appointment with my GI on the 16th. I'm going to go ahead and postpone it by at least 2 months since there is nothing for me to talk to him about or ask him for now. I'll focus on getting the PFD tests done over the next two months and trying out Motegrity. Then when I see this GI in 2+ months I can give him some useful information that he can use to help his other patients.

If the CR surgeon was this accommodating with Motegrity, I'm thinking he will also be accommodating with other new drugs like Zelnorm and Tenapanor later on in the year. Between the CR surgeon, the GP, and the GI, I'm thinking I can get at least one of them to write me a prescription to try them out when they are available.

Maybe I'll change my career and become a professional constipation drug reviewer.


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## annie7 (Aug 16, 2002)

oh, that's wonderful! so happy to hear that everything is cleared up with express scripts.

just wondering--why do you have to wait so long to get it? don't they have it ready for you to pick up now?

sounds like your insurance is covering it--that's good. on another board that i read, a lot of people are having problems with their insurance not wanting to pay for motegrity.

yes, that's a good idea to postpone your GT appointment. and yes, sounds like your c/r surgeon will be accommodating with the other new C meds coming up--that's wonderful! what a great guy he is!

"Maybe I'll change my career and become a professional constipation drug reviewer."


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## wgbutler (Mar 15, 2018)

annie7 said:


> oh, that's wonderful! so happy to hear that everything is cleared up with express scripts.
> 
> just wondering--why do you have to wait so long to get it? don't they have it ready for you to pick up now?
> 
> ...


Annie,

The way things normally work is that I get my medications at a steep discount through Express Scripts, which MAILS the drugs to me, and it usually takes 7-10 days from the receipt of the prescription for it to show up in my mailbox.

HOWEVER, I received an email from Express Scripts this morning and they said they didn't have Motegrity in stock and to call them to discuss options. I called and the representative said that because they didn't have it in stock I could try to get it filled from a local pharmacy, so I called Walgreens (there is a Walgreens 2 blocks from where I live) and they said they had it in stock, so I called the C/R surgeon's office and had them call in the prescription to the Walgreens.

I just got a text from Walgreens and they said the prescription is ready to be picked up! On top of that my copay is ZERO!!! I can't believe it, and I'm not sure why that is the case.

I could theoretically take my first pill today. But I'm going out of town tonight and don't want to take a brand new constipation medicine while I am on the road. Lots of bad things could happen. So I'll either start taking it this weekend or I will wait until next weekend if I decide to do a 7 day fast for Good Friday/Easter Sunday. I'm not sure which option I'm going to do at this point, but at any rate I'll be starting on this drug within the next 8 days.

And of course it goes without saying that I'll be posting back here with my experiences of it so that other people can observe and make a determination if its something they want to try for themselves.


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## annie7 (Aug 16, 2002)

oh, i see--express scripts mails your meds to you...that's why it takes so long.

wow--that's great that you were able to get motegrity from walgreens! and with no copay--amazing.

yes, i know what you mean about not wanting to try a new C med when you're on the road.

good luck and thanks for keeping us posted!


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## wgbutler (Mar 15, 2018)

So I've decided that I'm going to start the Motegrity tomorrow morning. I won't take the Linzess pill tomorrow morning like I usually do in order to better assess Motegrity.

I will take the other supplements and medications that I usually take, however (stool softener, magnesium, Miralax, etc). And I'll eat a healthy amount of fiber as well. Wish me luck.


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## annie7 (Aug 16, 2002)

good luck !!!!

will you be able to tell how well motegrity is working if you still take miralax, etc as well?


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## wgbutler (Mar 15, 2018)

annie7 said:


> good luck !!!!
> 
> will you be able to tell how well motegrity is working if you still take miralax, etc as well?


MIralax doesn't do all that much for me, but it will sometimes give me some relief if I get real backed up. It doesn't have any negative side effects, but it seems to make the stool easier to push out. Really, its the only medicine that I take that gives me no negative side effects whatsoever and helps me have the closest experience to a normal bowel movement - WHEN it works, which is maybe 10% of the time.

Trust me, I will still know if Motegrity is doing anything if I still take the MIralax. I will be able to tell the difference. And if it looks like the Motegrity is really firing things up, I'll discontinue the MIralax immediately and see what Motegrity can do without it. But I want to take the MIralax as a kind of safeguard because if Motegrity doesn't do anything I'm going to be in a world of hurt within a couple of days without the Linzess/Trulance.


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## annie7 (Aug 16, 2002)

i see--good idea.


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## annie7 (Aug 16, 2002)

how did motegrity work for you? i'm dying to know...... fingers crossed it helped.


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## wgbutler (Mar 15, 2018)

annie7 said:


> how did motegrity work for you? i'm dying to know...... fingers crossed it helped.


Annie,

Here is my day 1 report:

1) My normal routine is to set my alarm clock for 3:00AM, take a Linzess or a Trulance pill (they are basically the same medicine as far as I can tell), then go back to sleep for another 2-4 hours. When I do it this way, after I wake up I usually have 3-5 episodes of D and then I'm basically done for the day. Sometimes I get some really good relief, other times not so much. On the days when I have good relief, its generally a good day. On the days when I don't, its grin and bear it and hope that things work better the next day. I call this the 3AM Linzess protocol.

2) Today since I wasn't going to do the 3AM Linzess protocol, I let myself sleep in and woke up shortly before 9:00AM. I took my usual medications (some supplements for my prostate, a low dose aspirin, and about 1000 mg of magnesium). I also took my first Motegrity pill at that time. I was also able to use the bathroom some when I woke up, likely because I regularly take a stool softener and 500mg of Magnesium when I go to sleep.

3) A little over an hour later (around 10:00AM) my abdomen started gurgling and I felt an urge to go use the bathroom. I went to the bathroom and had a 2nd BM. It was basically a medium sized cow patty and I felt better afterwards. I credit the Motegrity for this, as Magnesium doesn't cause this type of effect in me.

4) A little over an hour after that I felt another urge to go the bathroom, this time it was D, but it was a gentler episode than what usually happens with the Linzess and the Trulance.

5) Around this time I noticed that I was feeling kind of amped up, jittery, flush with warm flashes, and had this low grade headache. As the day progressed the "amped up" feeling subsided but I've had the low grade headache all day long. I haven't noticed any effect on my emotional state. No feelings of depression or suicidal thoughts or anything like that. The headache is just noticeable enough to be aggravating.

So to summarize:

1) The good news is that it seems to help me go to the bathroom, has relatively mild side effects, and doesn't give me hours of D like Linzess and Trulance do. I can take it after I wake up and don't have to set my alarm for 3:00AM, etc.

2) The jury is still out on how efficacious its going to be for me, and how reliably its going to work. I'm going to have to take this for several days at the very least to make that kind of determination. I should note that I've tried other things that initially seemed promising (Intestinal Formula #1, Misoprostol, colon cleansers, fasting, etc) but proved to be unreliable treatments in the long term.

-->IF<-- it reliably helps me go a fair amount every day then this looks like it could be a good maintenance medicine, and I could take Linzess/Trulance only when I needed some extra help, hopefully no more than 1-2 times per week. I suppose the other question is if the low grade headache will ever go away or if this is just a side effect that comes with the medicine. I've read reports that alot of the side effects disappear after a week or two. I suppose I can live with the headache as long as the medicine does a really good job of taking care of the C. If I had to choose between being constipated all the time or having a low grade headache all the time, I'd take the headache.

That's pretty much it for now. I can't say if this is going to be better than the 3AM Linzess protocol but I should have a pretty good idea after a few weeks. Tomorrow I'm going to reduce the magnesium I take in the morning to shift more work on to the Motegrity pill.


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## annie7 (Aug 16, 2002)

thanks for the update!

glad to hear that it seems to be helping you go and that it doesn't gove you lots of D. that's great! hopefully this will continue.

that's too bad about the headache. i've read that headaches can be a side effect of prucalopride and yes, hopefully it will go away after a week or so, once your body gets used to the medication. zelnorm has headache as a possible side effect, too. i don't remember zelnorm ever giving me a headche. now i get migraines (have one right now) which are miserable so headache is not a side effect i'd want.....hope it doesn't bother you too much.

maybe you can reduce the pain of the headache with some tylenol or an NSAID.

good luck with everything! hope motegrity keeps working for you.


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## wgbutler (Mar 15, 2018)

Day 2 Report

Last night I experienced constant manic dreams and hot flashes. Needless to say, I didn't get a very good night's rest. I attribute that to the Motegrity.

Today I woke up and took the 2nd Motegrity pill at 8:00AM. I got stuck in a meeting at church and didn't get home until 10:30AM, at which point I had to run to the bathroom because I had a powerful urge to go. It was basically just a medium session of D.

That's pretty much it as far as going to the bathroom. Motegrity seems to kick in about 1-2 hours after you take the pill and cause you to have to go, and in my case has just created soft or watery stools. After you go 1 or 2 times it basically doesn't do anything for the rest of the day. So I'm sorry to say that it doesn't look like a game changer drug. It's just a milder version of Linzess. The bad side of that is that it doesn't clean me out as much as Linzess does. Tonight I was starting to feel pretty backed up so I've taken a Trulance to give myself some relief.

The other bad thing is the constant headache and hot flashes all day long. It also causes a mild sensation of what I might describe as butterflies in the stomach, a little nausea, a little urge to barf but nothing too powerful.

So far I'm not impressed with the drug and don't see it replacing the 3AM Linzess protocol. I understand that this drug really helps other people. I'm guessing it helps people with slow transit constipation, and I'm pretty sure I don't have that. The colon surgeon may be correct that I have a pelvic floor disorder, which would explain why only osmotic type laxatives give me relief. I've taken other prokinetics before (Iberogast, Low Dose Naltrexone) and they never helped me go, so whatever is causing my chronic constipation doesn't seem to be affected by prokinetics, which either don't work at all or just give me D.

At any rate, I'll try to press on with it, but after 2 days of having a constant headache, I'm not sure how much more I can take, especially since I'm having to take my regular laxatives to get relief.


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## annie7 (Aug 16, 2002)

so sorry motegrity is not working out for you. how very disappointing.

are you still taking miralax,magnesium and stool softners? that might be why you're gettting D with motegrity.

yes, sounds like you might be right about prokinetics not working for you because you don't have motility problems. do stimulant laxatives work for you? or only the osmotics. i had both colonic inertia and pfd. i took both stimulants and osmotics. i basically had to stimulate my colon to move and also blast the poop out of there, past those very tight pelvic floor muscles.

yes, the headache side effect sounds bad. i know i wouldn't take it if it gave me headaches.


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## wgbutler (Mar 15, 2018)

annie7 said:


> so sorry motegrity is not working out for you. how very disappointing.
> 
> are you still taking miralax,magnesium and stool softners? that might be why you're gettting D with motegrity.
> 
> ...


Annie,

Yes I am still taking the miralax, magnesium, and stool softeners. That's a good theory about why I have the D, which TBH I don't mind so much as long as I get relief. I've taken stimulant laxatives in the past, which either 1) did nothing, 2) gave me stomach cramps and D, or 3) just gave me D. Generally speaking I've responded best to osmotics which either soften the stool so that its like mud or give me D.

The more I think about it, the more I think that my issue is a pelvic floor disorder. My rectal muscles aren't letting anything through unless its squishy or watery. But everything else is working fine. It also explains the long thin stools that come out on those rare occasions when I do go. Maybe physical therapy or biofeedback can help me with this.

I would also like to add that yesterday I experienced profound sadness. I am often sad and depressed as a result of these chronic health problems, but this was above and beyond those episodes, and I wonder if the motegrity caused that reaction. I feel back to my normal self this morning, except for a mild headache.

Today I'm going to mix things up. I'm going to take half a pill (1 mg) after lunch to see if 1) the side effects will be reduced, and 2) it helps me go in the afternoon. One of the downers about the 3AM Linzess protocol is that it tends to clear me out at the beginning of the day, but as the day goes on I start to feel blocked up again (usually around late afternoon) and I basically just have to suck it up until the next morning when the cycle repeats itself. If a small dose of Motegrity helped me go in the afternoon/early evening, it could still be a big help. Since Motegrity only makes me go to the bathroom once or twice, that could be a good solution for the late afternoon/early evening discomfort, as opposed to taking a Linzess or Trulance which would give me several hours of D and basically chain me to the bathroom for the rest of the evening.

I can also look forward to Tenapanor which should be FDA approved later on this Fall. It works by increasing liquid in the bowel but may be less harsh than Linzess/Trulance.


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## annie7 (Aug 16, 2002)

yes it does sound like you could have pfd. and yes, hopefully biofeedback and PT will help you. it does help a number of people.

so it sounds like you'll be having tests (hopefully soon) to see if you have pfd ?

good luck with your experiment with taking half a pill. of course, if the pills aren't scored, you don't have any way of knowing exactly how much of the drug you're getting in each half but it's worth a try. it does come in 1 and 2 mg doses so you could always ask your doc for the i mg dose pills if you want to be exact.

yes, hopefully tenapanor will help you.


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## wgbutler (Mar 15, 2018)

annie7 said:


> yes it does sound like you could have pfd. and yes, hopefully biofeedback and PT will help you. it does help a number of people.
> 
> so it sounds like you'll be having tests (hopefully soon) to see if you have pfd ?
> 
> ...


Yes, the colon doctor said he was going to order a slew of tests to check for PFD and other problems. I'm kind of dreading getting the tests done and I haven't heard back from the office yet, but if I don't hear anything from them by next week I'll call them up and ask what's going on. Interestingly enough, both the colon doctor and the urologist I visited recently said they were going to order physical therapy, and I haven't heard from either one about that yet. (TBH with you I'm kind of dreading that too). So I have two different doctors I can get that from. For the rest of this week I'll just focus on experimenting with the Motegrity and next week I'll make some calls about the physical therapy if I haven't heard from either one yet. I won't let the opportunity slip through my fingers to get physical therapy, even if it is uncomfortable and embarrassing.

BTW, I took a half pill of 2mg Motegrity about 2 hours ago and so far nothing. No headache, no urge to go to the bathroom, nothing. I'll post a report at the end of the day and let you know what happened.


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## annie7 (Aug 16, 2002)

oh yes--that's right! your urologist said he was going to order PT, too.

that's a good idea to call the offices and follow up on all this. i had to do that. both my c/r surgeon and my gastro doc wanted to get me started on biofeedback and PT but i had to call them both back to kind of "shake their tree". i even called the physical therapy department, too.

the tests do sound kind of daunting but they are very good diagnostic tests to have . really, it's good to just take them and get them over with so you can move on . and the test technicians are very professional and understanding about the whole thing. i had two anal manometries and actually ended up having a good time talking to the tech while he was doing the test.

and i know what you mean about biofeedback and PT but really, that was a breeze. these PTs are wonderful--so knowledgeable, understanding and sensitive to your needs. i asked my PT lots of questions and learned a lot from her.

thanks for reporting in on the half pill of motegrity. at least it didn't give you a headache--that's good.


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## wgbutler (Mar 15, 2018)

Day 3 Report

So today I took a HALF pill of Motegrity (~ 1 mg) around 2:30 PM to see if I can possibly use this drug to give me some relief in the afternoon/evening hours when I often feel blocked up, and to see what the side effects are like on half the dosage.

1) I DO still notice a headache, but its substantially more bearable than the headaches I've endured the past two days. As to whether or not I'd want to have a headache like this every day as a matter of routine, its borderline. I'm not sure. Its not SO bad but its still not pleasant. Definitely better than the past two days, and perhaps as my body develops a tolerance for the drug this will subside.

2) I had a mini hot flash. Not as bad the past two days but still noticeable.

3) I did go to the bathroom around 6:30PM, it was a very small amount of D. Nothing to write home about, but in all fairness I didn't feel blocked up this afternoon so its not the best test.

I'll have to stay on this protocol for several more days to see if the drug provides any significant afternoon/evening relief and is worth the trade-off of the mild headaches and hot flashes.

The jury is still out on whether or not I want to make this drug a part of my regular chronic constipation protocol.

I do feel very confident in saying that its not going to replace the 3AM Linzess protocol at this point. The only question is if its worth taking this in addition for some relief in the late afternoon/evenings.


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## annie7 (Aug 16, 2002)

thanks for the update.

according to drugs.com, the headache side effect "usually" resolves within in a few days....

https://www.drugs.com/sfx/motegrity-side-effects.html

hopefully that will be true in your case.

maybe zelnorm will work for you and not give you headaches. it didn't give me headaches.


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## wgbutler (Mar 15, 2018)

Day 4 Report

Today I took a half pill (about 1 mg) of Motegrity around 1:30 to see if I am developing a tolerance for the side effects and to see if it will help me go in the afternoon/evening.

I still experienced a mild headache. Definitely better than the first 2 days, which was pretty awful but about the same as yesterday. If this drug substantially helped me evacuate I would gladly put up with this type of mild headache, but I haven't observed that yet. In all fairness the LInzess did a very good job of clearing me out this morning (and yesterday morning) and I haven't felt blocked up in the afternoon as I sometimes do, so there hasn't been a real test. But I experienced no urges to go to the bathroom whatsoever, all the 1/2 pill did was give me a mild headache, basically.

I'm going to try to stick with it for another 1-2 weeks to see if I develop more of a tolerance for the drug and to see how much (if any) it helps me go. But with each passing day I become more persuaded that this medicine is not going to substantially help me, even if I develop a full tolerance for it and the side effects all go away. I don't like putting chemicals in my body unless there is a real, tangible benefit to doing so, and even when I was taking the full 2 mg pill it only caused me to have 1 or 2 smallish watery type evacuations, not nearly enough to clear me out and prevent me from getting backed up.

I suppose my fears with sticking with the Linzess are 1) developing a dependence on it. Are my pelvic muscles atrophying with all the D? I still have aspirations of someday being normal again and don't want to sabotage that dream, and 2) will I eventually develop a tolerance for Linzess/Trulance and they will stop working? I've read other people say that after about 1-2 years these drugs don't work very well anymore, and if that happened to me, I'd really be hosed, because they are the only things that reliably give me relief.


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## annie7 (Aug 16, 2002)

so sorry motegrity isn't working well for you and is still giving headaches.

your question about if your pelvic muscles would atrophy with all the D is a good one to ask your pelvic floor PT, once you have one. like i said, these PTs are amazing--there is absolutely nothing they do not know. i didn't ask my PT this question because it never occured to me this would even happen but she knew that i took laxatives to give me D so i could go and she never told me that my pelvic floor muscles would atrophy because of this. i'm sure she would have if that were possible. also both my gastro docs knew about my laxative use ("take whatever you need to go", they told me) and they didn't tell me that this would atrophy my muscles . my U of M gastro doc is a pelvic floor specialist--in fact, he is the head of the pelvic floor PT department there--and i'm sure he would have told me if having lots of D would atrophy my muscles.


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## wgbutler (Mar 15, 2018)

annie7 said:


> so sorry motegrity isn't working well for you and is still giving headaches.
> 
> your question about if your pelvic muscles would atrophy with all the D is a good one to ask your pelvic floor PT, once you have one. like i said, these PTs are amazing--there is absolutely nothing they do not know. i didn't ask my PT this question because it never occured to me this would even happen but she knew that i took laxatives to give me D so i could go and she never told me that my pelvic floor muscles would atrophy because of this. i'm sure she would have if that were possible. also both my gastro docs knew about my laxative use ("take whatever you need to go", they told me) and they didn't tell me that this would atrophy my muscles . my U of M gastro doc is a pelvic floor specialist--in fact, he is the head of the pelvic floor PT department there--and i'm sure he would have told me if having lots of D would atrophy my muscles.


Thanks for the encouragement Annie. I consider you a true friend. I have some new developments to share with you.

The colorectal surgeon's office called this morning and they have scheduled a defacography for NEXT Friday, and an anal manometry for the first week of May. They also said that a pelvic floor physical therapist will be calling me soon to schedule appointments.

And this Friday my regular physical therapist can only meet with me at 8:00AM. So instead of taking Linzess that morning and having to worry about D while being at physical therapy I'm going to skip the Linzess and take the full 2mg Motegrity pill just as I'm leaving for physical therapy. I'm going to do this to see if I've developed a tolerance to the side effects and to see how much it helps me go. I'll keep you guys posted on the results.

Today and tomorrow I'm still going to take the 1/2 pill after lunch. Probably not the best test in terms of efficacy because the Linzess has been working extremely well for me lately and I don't feel like I have to use the bathroom in the evenings.


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## annie7 (Aug 16, 2002)

thanks for the update! so glad to hear that they've finally set a date for your tests and that the PT will be calling you soon to set that up.

sounds like a good plan that you have for friday--not taking linzess and then taking motegrity right before you leave for PT. hope you don't get a really bad headache. does taking tylenol or an NSAID for your headache help relieve it at all?

at least linzess has been working well for you lately--that's good.


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## wgbutler (Mar 15, 2018)

annie7 said:


> thanks for the update! so glad to hear that they've finally set a date for your tests and that the PT will be calling you soon to set that up.
> 
> sounds like a good plan that you have for friday--not taking linzess and then taking motegrity right before you leave for PT. hope you don't get a really bad headache. does taking tylenol or an NSAID for your headache help relieve it at all?
> 
> at least linzess has been working well for you lately--that's good.


I have deliberately NOT been taking tylenol or an NSAID because by doing that I won't know if I'm developing a tolerance to the drug or not. Not only that, but as a lifestyle taking NSAIDS on a daily basis to cope with Motegrity is not really an option anyway. That would tear my stomach up. Taking them every once in awhile to deal with the occasional headache is fine, taking them every single day to handle a side effect of another drug would do long term damage.

However, if it does look like I'm never going to develop a tolerance to the Motegrity then I will experiment with using NSAIDs or Tylenol to see if that nixes the headache side effect, just to do my due diligence. If it helps with the headache, maybe I could hold on the extra Motegrity pills and take Motegrity and an NSAID on the days when taking Linzess or Trulance isn't really practical (maybe if I'm on vacation or have an important meeting early in the morning, etc.)


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## annie7 (Aug 16, 2002)

wgbutler said:


> I have deliberately NOT been taking tylenol or an NSAID because by doing that I won't know if I'm developing a tolerance to the drug or not. Not only that, but as a lifestyle taking NSAIDS on a daily basis to cope with Motegrity is not really an option anyway. That would tear my stomach up. Taking them every once in awhile to deal with the occasional headache is fine, taking them every single day to handle a side effect of another drug would do long term damage.
> 
> However, if it does look like I'm never going to develop a tolerance to the Motegrity then I will experiment with using NSAIDs or Tylenol to see if that nixes the headache side effect, just to do my due diligence. If it helps with the headache, maybe I could hold on the extra Motegrity pills and take Motegrity and an NSAID on the days when taking Linzess or Trulance isn't really practical (maybe if I'm on vacation or have an important meeting early in the morning, etc.)


oh, right---you don't want to take pills every day to cope with side effects from motegrity (or any other med, for that matter) . i was just curious as to whether tylenol (or an NSAID) helped at all with the motegrity headaches. and yes, daily NSAIDs are a bad thing. they sure ripped up my stomach.


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## wgbutler (Mar 15, 2018)

Day 5 Report

Today I took a half pill (about 1 mg) of Motegrity around 1:30 to see if I am developing a tolerance for the side effects and to see if it will help me go in the afternoon/evening.

I still experienced a mild headache. I also felt kind of jittery and had some hot flashes at the end of the day. I didn't experience any urges to go to the bathroom (keep in the mind that the Linzess cleared me out pretty good this morning).

I'm about over these headaches. And its not like the drug is making that much of a difference in me going to the bathroom (even when I wasn't taking Linzess). The drug will soon be put in storage if things don't significantly improve soon.


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## annie7 (Aug 16, 2002)

sorry it's not working and you're still getting the headaches. because of my migraines, i'd never be able to take a med that has headache as a side effect.

zelnorm also has headache listed as a possible side effect but fortunately it never gave me headaches. or any side effects whatsoever. hopefully when zlenorm finally comes out you'll have better luck with that.


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## wgbutler (Mar 15, 2018)

Day 6 Report

Today I took a half pill (about 1 mg) of Motegrity around 3:30PM, later than usual because I got caught up in some stuff at work and just plain forgot about taking it.

I finally have something good to report about this drug. Earlier in the day the Linzess didn't do as good of a job as it has been doing for the past several days so I did feel a little backed up by late afternoon. About 2 hours after I took Motegrity, I had an urge to go to the bathroom and I was able to evacuate a small to medium amount of stool and it did provide some actual relief. The not so good news is that I still have the mild headache, so I basically traded feeling slightly constipated for having a mild but still unpleasant headache, which I am still experiencing as of this writing.

Tomorrow I'm going to throw caution to the wind and take the full 2 mg pill as I'm leaving out the door for physical therapy.

I'm still not sure what to think about this drug and haven't made any decisions. The headache side effect is a real downer.


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## annie7 (Aug 16, 2002)

good luck today with the 2 mg and also good luck with PT.

oh headaches are utterly miserable. especially when you have them every day.


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## wgbutler (Mar 15, 2018)

annie7 said:


> good luck today with the 2 mg and also good luck with PT.
> 
> oh headaches are utterly miserable. especially when you have them every day.


Just to be clear, the physical therapy this morning was not the pelvic floor physical therapy. I have chronic soreness in my right hip. I've run in 5 marathons in my life and its taken a bit of a toll on my body.


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## annie7 (Aug 16, 2002)

so sorry about your hip. that sounds really painful. hope PT will help.


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## wgbutler (Mar 15, 2018)

annie7 said:


> so sorry about your hip. that sounds really painful. hope PT will help.


It's not too bad, as long as I watch how I exercise and stretch alot. Not being overweight helps a ton as well.

I wanted to tell you that the pelvic floor physical therapist called me and I have my first appointment May 2. Next week I'm getting the defacography and the week after I'm getting the anal manometry. The more I think about it, the more I think that my real issue is a pelvic floor dysfunction. It would explain a whole lot of things, why only certain things help me and many things do not. I guess in a few weeks I will know for sure.

On another note, I also want to say that i seem to be adjusting to the Motegrity. I took the 2mg pill this morning and the headache effect is much more bearable than it was the first couple of days. But alas, there seems no benefit in the C department as I feel partially blocked up and when I go only a very small amount comes out. Again, if my issues is a pelvic floor dysfunction, this makes perfect sense, as my colon is working normally but my pelvic muscles won't let the waste get out.


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## annie7 (Aug 16, 2002)

oh so glad your pelvic floor PT called and got you set up with your first appointment . progress!

and yes, that's great that your body is adjusting to motegrity and that the headache isn't quite as bad. hopefully the headache will go away altogether. although it's too bad that it isn't helping your C. like you said, if you have pfd, that would explain things.

if biofeedback and PT help you learn to relax and coordinate your pelvic floor muscles, then maybe motegrity will work better for you.


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## wgbutler (Mar 15, 2018)

Day 7 Report

Today I took the full pill (2 mg) of Motegrity. I've experienced some light headaches, but its been significantly better than the first couple of days that I tried this medication. My body appears to be developing a tolerance to the drug and the side effects are becoming less noticeable.

Unfortunately I haven't noticed much of an improvement in the going to the bathroom department, although I was able to go some this evening, and experienced some relief as a result. Still nowhere near what it needs to be in order to replace Linzess/Trulance, and I'm not even sure that I was able to go because of Motegrity.

Since I'm developing more of a tolerance to the drug, I'll plan on taking it for a while longer to see what happens. I'll go ahead and take the full dose each day and won't worry about cutting the pill in half anymore.


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## annie7 (Aug 16, 2002)

i'm so glad to hear your headaches are getting better. but sorry to hear that motegrity still isn't helping you go much (if at all).


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## wgbutler (Mar 15, 2018)

Day 8 Report

Today I took the full pill (2 mg) of Motegrity. I've experienced some light headaches, but its been significantly better than the first couple of days that I tried this medication. My body appears to be developing a tolerance to the drug and the side effects are becoming less noticeable.

Unfortunately I haven't noticed much of an improvement in the going to the bathroom department, although I was able to go some in the early afternoon. and experienced some relief as a result. But I took my usual Linzess this morning and that could have been the reason.

Since I'm developing more of a tolerance to the drug, I'll plan on taking it probably for at least another 2 or 3 more days. I'll go ahead and take the full dose after lunch each day to see if it makes any substantial difference in helping me go in the late afternoons/evenings.

Even though the headaches and other side effects have gotten noticeably better, they are still there, and its still a bit unpleasant. I'd gladly suffer these side effects if the drug made a big difference in being able to go to the bathroom, but its not and all I'm accomplishing is that I'm (mildly) torturing myself. I already have enough to deal with without adding daily headaches to the list of miseries I continually suffer.


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## annie7 (Aug 16, 2002)

oh i hear ya. i have daily headaches due to empty nose syndrome and frequently they turn into migraines. miserable way to live. definitely don't need that on top of everything else.

and sure--if motegrity was helping a lot, the headaches might be worth it. but otherwise....


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## wgbutler (Mar 15, 2018)

Day 9 Report

Today I took the full pill (2 mg) of Motegrity shortly after lunch. I've barely noticed any headache at all today, so I seem to have developed a tolerance for the drug.

I did have a couple of very small bowel movements, 1 in the afternoon, and another in the evening. Not much to really count for anything, although I did experience some slight relief. And I'm not sure if it was because of the Motegrity, that's anyone's guess.

All in all, I don't think I'm going to continue the drug for much longer. It just doesn't seem to help me all that much. Whatever my problem is, it's something that prokinetics don't improve.


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## wgbutler (Mar 15, 2018)

Final Report

I took a pill this afternoon after lunch, which will be my last one. Despite not evacuating enough this morning and feeling like I still have to go this afternoon and evening, I haven't been able to evacuate much when I've tried. Additionally, the headaches and hot flashes are back. It's not quite as bad as the first few days, but its still unpleasant. Maybe 40% as bad, which is still bad enough to bug me.

Since this drug isn't really doing anything for the chronic constipation, I'm not going to take it anymore. It was worth a shot, and at least I can scratch it off my list now.

I'm sure this drug would help someone else, especially those with slow transit constipation or colonic inertia.


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## annie7 (Aug 16, 2002)

so sorry motegrity didn't help you. what a disappointment.

and yes, like you said, just because it didn't help you doesn't mean that it won't help someone else, especially people with transit problems who would benefit from taking a prokinetic.


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## wgbutler (Mar 15, 2018)

I should add that a couple of days after stopping Motegrity the headaches have come back. I've read that there is a withdrawal period where your body has to get adjusted to the medicine not being around, and I expect that this will go away after a couple of days.


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## annie7 (Aug 16, 2002)

oh no---the headaches came back? i wonder why there is a withdrawal period with motegrity? something to do with serotonin perhaps? that's too bad. and yes hopefully this will go away in a few days..


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## wgbutler (Mar 15, 2018)

annie7 said:


> oh no---the headaches came back? i wonder why there is a withdrawal period with motegrity? something to do with serotonin perhaps? that's too bad. and yes hopefully this will go away in a few days..


Annie, I've got some news for you.

1) The headaches got a lot better today, so the side effects seem to be subsiding. They are almost all gone, about 70% better than yesterday. And no hot flashes, jittery feelings, or any other symptoms at all.

2) Today was the day for my scheduled defacography. So I went to the hospital and had it done. The first thing they did was take a regular x-ray. The doctor asked me if I had ever had surgery. I told him no, and he said it was curious because the x-ray picked up some kind of calcification on my left abdomen side. He had no idea what it was but didn't think it was anything serious. But for the past year or so I've had tenderness and soreness at the spot where he saw the calcification and I assumed it was because of IBS. Now I don't know what to think. I'm a little worried about it. He said it was probably nothing but I'm extremely curious what it is and if there is a connection with the tenderness and soreness in that spot.

3) When I did the actual test (which was not fun) the doctor said that puborectalis muscle was not relaxing and was blocking me from being able to expel the waste. I did finally get it out.

4) Later on when I went home I felt something kind of weird going on down there and felt like I had to use the restroom. When I used the restroom there was a bunch of bright red blood. Ugh. So I freaked out and called the colorectal surgeon's office. The surgeon called me back and told me that it probably wasn't a big deal but to keep a close eye on it over the next few days. It's really freaking me out TBH. Even now I don't feel quite right. Something weird is happening down there.

5) The surgeon told me that he looked at my test results and that I have anismus which is causing a functional outlet obstruction. So I think I may finally know why I am chronically constipated. I paid a hell of a price to find out. Now I know why all of these other things I've tried haven't worked, and why only osmotic type laxatives seem to help me. He said that there are things they can do to treat this, like pelvic floor therapy, biofeedback, and botox. It sure would be awesome if I could get this treated and return to a state of normality or even half-normality.

6) So the pending issues I have are:

a) What's going on with the calcification the x-ray picked up on the left side?

b ) Is the bleeding when I used the restroom over with? I'm super freaked out about this and I'm terrified to use the bathroom again.

c) Is anismus really the problem behind the constipation? And if so how can I fix it?

Anyway, I appreciate any advice

I'll keep you posted on further developments.


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## annie7 (Aug 16, 2002)

oh i'm so glad to hear that the headaches and other side effects are subsiding--great news!

that's interesting that you had some calcification on the left side of your abdomen. i would think that that's what could be causing the tenderness and pain that you have in that area. that's good that your doc didn't think it was anything serious. you could always get a second opinion about it if you're really concerned.

no the defecography is not a fun test at all but it's a good test to have and a good diagnostic tool. i couldn't poop any of the barium out so they had to give me an enema afterwards. not fun.

at least you know for sure now that you have anismus and that's why you're chronically constipated and why only osmotics work for you. and now you can move on and go to biofeedback and physical therapy and hopefully that will help. and yes, botox can help with this, too.

if you think there's a possibility that you might also have slow colonic transit, you could always ask for a sitz marker test.

oh so sorry about all that bright red blood. i've passed both the bright red blood and the dark maroon blood. that sort of thing is always worrisome. good thing you called your surgeon about it. i do hope you don't pass any more blood after this.

keeping you in my prayers and thanks for the update.


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## annie7 (Aug 16, 2002)

how are you doing? i hope you haven't passed any more blood.


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## sjw596 (Feb 19, 2014)

I hope to apply for an insurance exception for Motegrity this week. This comes after trying Linzess, Amitiza, and now Trulance, I've been on Trulance for >1.5 years, and it doesn't help unless I also use Miralax + MoM daily. Then, Trulance does seem to help to a small degree, maybe. BTW, Shire offers a co-pay discount card if you qualify (basically have insurance, but not government insurance). I had taken the original Zelnorm way back, but it caused leakage and D. I'd try it again, but would need a waiver for gender as well, as it's FDA-approved for women.


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## annie7 (Aug 16, 2002)

good luck with your insurance approval. and good luck with motegrity. hope it helps you!


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## sjw596 (Feb 19, 2014)

I pick up my Motegrity tomorrow. With the coupon, a 90-day supply is $45. The only thing left to consider is when to take a pill. I'll probably start by taking it first thing in the morning and see what happens. I'll cut down on my daily MoM dose (30 ml) to perhaps 15 ml, just for "insurance, and stop my daily dose (1/2 capful) of Miralax. That's how I began my other meds. There's no standard way to take the meds, though I'd prefer to postpone any ill effects until I'm out of bed for the day. At least Motegrity offers a new approach by regulating peristalsis as opposed to pumping water into the colon. Maybe that''ll be more helpful to those of us with "tortuous and redundant" colons. I'll post back with my experience.


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## annie7 (Aug 16, 2002)

glad you got your insurance approval. good luck. thanks for keeping us posted.


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## sjw596 (Feb 19, 2014)

On Day 0, I had taken 30 ml MoM plus 1/2 dose of Miralax, and took my first Motegrity 2 mg on Day 1 at 6:00. Had a complete BM by 7:30. However, I'm sure the Day 0 supplements played a role, as Days 2&3 provided little relief from my usual incomplete BMs. But Day 4 produced a complete BM without having taken any supplements since Day 0. It's too soon to tell, as the drug typically takes 1-5 days to start and may produce 3 complete BMs/week. No headaches, but required a little "pushing." The down side may be that, unlike the other drugs, e.g., Trulance and Linzess, softness seems like an issue as Motegrity does not pump water into the colon. So, I'm going to try a small dose of MoM as well tonight. It would be interesting to learn what my GI would think about taking a Motegrity and a Trulance daily. Probably opposed, though they work differently. In effect, Trulance seems to be a high-power osmotic. I'll post back after more time elapses.


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## annie7 (Aug 16, 2002)

thanks for the update! adding a small dose of MOM (or even trulance) sounds like a good idea. good luck!


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## sjw596 (Feb 19, 2014)

Yeah, I'll start with 30 ml MoM tonight, and then may try a "self-clinical trial" on myself with subbing a Trulance for the MoM, if the MoM gives me too much indigestion. I already have an insurance exception for Trulance. I have a theory: if you soften stool, there's a point where the peristaltic action can't move it along very well; e.g., it's "squishy."


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## annie7 (Aug 16, 2002)

oh yes--i agree with your theory.


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## sjw596 (Feb 19, 2014)

Taking 30 ml MoM last night and the Motegrity this morning cleaned me out quite well. I may cut back to 15 ml MoM. As you know, this is a struggle that requires a bit of trial & error. I still may test Trulance+Motegrity, though I don't know whether that would hold advantage over MoM. I hope that I can quit Miralax entirely.


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## annie7 (Aug 16, 2002)

oh that's great that that combination worked so well. and yes--right--trial and error.


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## sjw596 (Feb 19, 2014)

annie7 said:


> thanks for the update! adding a small dose of MOM (or even trulance) sounds like a good idea. good luck!


I asked the GI's FNP about Trulance + Motegrity. She advised against it, only because the drugs are so new that there isn't much research available. So, what seems logical may have unknown implications. However, she agreed that using MoM with Motegrity should be fine.


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## annie7 (Aug 16, 2002)

sjw596 said:


> I asked the GI's FNP about Trulance + Motegrity. She advised against it, only because the drugs are so new that there isn't much research available. So, what seems logical may have unknown implications.


oh, that's unfortunate. well, at least the MOM with motegrity is helping.


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## sjw596 (Feb 19, 2014)

Just to update, I've been on Motegrity for almost a month, and my experience has been positive. The only issue is that I must take 20-35 ml of MoM every day before bed to keep adequate liquid in my colon. Unlike the other CIC meds, Motegrity is a prokinetic and not an osmotic. Hence, I presume that I lacked sufficient water to prevent my stools from being a little hard. My GI said that I also could use Colace or something similar. I take Motegrity when I get up, and typically have a complete BM within 2.5 hours. The big improvement over Trulance is that my BMs are complete. However, Trulance's effect also was quite good while it lasted. I guess we'll see how long the Motegrity works.


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## annie7 (Aug 16, 2002)

thanks for the update! so happy to hear that motegrity (with the MOM) is working for you! fingers crossed that continues.


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## GJMody (May 11, 2019)

Does prucalopride/motegrity work for men with chronic constipation. When I searched the net, it says it does. Also it says it induces "spontaneous" bowel movement. Does that mean I need to rush to the restroom. Your reply will be appreciated.


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