# IBS-C and a living hell. Options limited



## comptalk (Sep 17, 2010)

Hey all,

I'm male and 39 years of age. I've been battling IBS-C since my teens. The docs think it was caused by taking Vicodin after I was seriously injured in a car accident when I was a child and my digestive system didn't fully develop or is just way too sensitive. Zelnorm and Vioxx were savors for me for a few years until both were pulled from the market. Since then, it's been pure hell. I've have to switch careers, work for myself, lost relationships and a marriage due to this hell. Tried Linzess and Amitiza, but both caused diarrhea; which is actually worse than constipation. My normal go to regimine which worked for years was six capsules of Now 500MG fiber, 1000G of magnesium, vitamins, oatmeal and a cup of coffee with some Miralax usually produced a bowel movement in the morning and I can usually get on with my day. However, if I do not get the Miralax dosage correct, it would have either a bloating effect or the waste would be too soft (sorry to be graphic). I also suffer from chronic pain and chronic migraines for which I get injected in my spine and head with the BOTOX by the neurologist and I inject myself twice a month with Amovig and that makes the migraines bearable. In order to now have a bowel movement, I now seem to need to take Milk of Magnesia every other day along with a quarter cup of Miralax. That seems to work right now. However, if it doesn't I don't leave my house. Since I work from home, that's not a big deal work wise, but I basically live in my home 24/7, 7 days a week. I joking call my home the prison palace. No friends, only two people left in my family, but they don't understand the pure hell life is. I am so afraid of digesting, I try only to eat when necessary. I still eat 1500 or so calories a day, but if I can get away with not eating so I do not have to digest, I try to go for that. Within the last year, I've lost around 45 lbs. It wasn't because of cosmetic reasons, it's mainly because it's just too painful at times to digest. If I said suicide hasn't passed my mind several times a week, I'd be lying. However, I am not depressed, just in pain 24/7. While my mom and brother is still around, I wouldn't consider something like that, as I cannot leave them alone; nor want to hurt them either.

Doctors say, aside from the migraines, chronic pain, and IBS-C, I am very healthy and should live a long life. Sadly I frown when they say that and say living to 40 or 50 should be good enough. As I get older, pain gets worse and IBS-C gets worse as well. No social life doesn't help either. It's not that I don't try, as I do, but my body doesn't want to get with the program. Everyone seems to be afraid of death. I, on the other hand, feel it will be very relieving as I do not have to be in pain any longer. I basically work to pay for my medical bills, food, home and utilities. There's little enjoyment out of life. Tried marriage, but my ex-wife couldn't deal with my chronic pain. It got to the point where she started to ridicule me in front of family. God only knows what she said to other people when I wasn't around. I got very sick because I caught the flu, and she basically left me for dead. There were rumors she was unfaithful and refused to work on the marriage, so I filed for divorce and left. All in all life sucks and I cannot wait until it's over. No one should have to live in hell like this. I joke to my mother I am Danny DiVito in the 1988 movie, Twins.

For a few years, when Vioxx and Zelnorm was available, I had a more normal life. Since they took Vioxx off the market in 2004 and then Zelnorm in 2007, life has been down hill since then quality of life speaking. I was a bit upbeat when I heard they were going to reintroduce Zelnorm, but not some POS attorney group is campaigning against it. I cannot get a break. I tried to get emergency status from the FDA, but the doc didn't want to fill out all the paperwork and go through the steps in obtaining the meds. I am losing hope. I am tired of being in medical prison. This is not a life. This is a life sentence. No one understands. They think IBS-C is just a stomach ache, it isn't. They think a migraine is just a headache, it isn't. Unless they experience them, they'd not understand. I guess I am just babbling on here. Thank you for reading my rant.


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## Checkneed (Jan 26, 2019)

Hi , i just created an account because your message resonates with my state of mind 
Living with severe ibs c is unbearable to me as well. 
It seems you are feeling very low. I don't know how much zelmac/zelnorm helped you in the past 
But i just wanted to tell you that it is still available in mexican pharmacy , you can order it online

If it made really a difference to you it might be worth looking at it


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## annie7 (Aug 16, 2002)

comptalk---so sorry your ibs-c is so severe. and yes, i agree. living with chronic C is miserable.

like checkneed said, you can order zelnorm from mexican online pharmacies. when they took zelnorm off the market i and some other people here on the board ordered it from medsmex.

it definitely was zelnorm, too--the real thing--and not a fake drug. one thing though--if you do order from medsmex, be sure you pay for it with a money order or some other form of payment. don't give medsmex your credit card number, which is what we all did at first. medsmex then used our credit cards to make fraudulent charges. it was a nightmare to straighten out. from then on we took precautions. i have a bank of america credit card and used their shopsafe program --it gives you a virtual credit card number. other people used visa gift cards with limits on them or money orders or a debit card tied to a checking account with only enough money to cover the purchase. all this happened quite a while ago. i don't know if medsmex is still like that but you might want to take precautions just in case they are.

also--prucalopride has recently been approvedby the FDA. like zelnorm, prucalopride is a high affinity selective serotonin type 4 (5-HT4) receptor agonist--a prokinetic med that stimulates colonic peristalsis. it's supposed to have a better safety profile than zelnorm. it should be available the first half of this year. you might want to give that a try. this med is definitely not like amitiza, trulance or linzess. it's a prokinetic very similar to zelnorm.

https://www.ibsgroup.org/forums/topic/348977-fda-accepts-new-drug-application-for-prucalopride-for-cic/


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## flossy (Dec 8, 2012)

Hi comptalk -

Sorry to hear about your migraine and digestive woes.

You want to try something you'll probably really like for your constipation? Try this (click on below link to read):

http://www.ibsgroup.org/forums/topic/239065-finally-a-product-i-can-recommend/

Good luck & keep us posted!


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## comptalk (Sep 17, 2010)

Checkneed said:


> Hi , i just created an account because your message resonates with my state of mind
> Living with severe ibs c is unbearable to me as well.
> It seems you are feeling very low. I don't know how much zelmac/zelnorm helped you in the past
> But i just wanted to tell you that it is still available in mexican pharmacy , you can order it online
> ...


Yea, it's unreal. I am sorry to hear you have to go through it as well. I just don't trust the international pharmacies. I tried once with a Canadian one, they sent sugar pills. I disputed it with my CC and got my money back, but it was a hassle.



annie7 said:


> comptalk---so sorry your ibs-c is so severe. and yes, i agree. living with chronic C is miserable.
> 
> like checkneed said, you can order zelnorm from mexican online pharmacies. when they took zelnorm off the market i and some other people here on the board ordered it from medsmex.
> 
> ...


Yes, I am waiting for Motegrity to be available, but some client advocate put up a comment and is challenging the approval. They want a whole new review or something.



flossy said:


> Hi comptalk -
> 
> Sorry to hear about your migraine and digestive woes.
> 
> ...


Yes, I ordered it on Friday when I saw it on this forum when I was reviewing the topics. It's not cheap, but I will ty it. I see it has Senna in it. I just worry that Senna would make me dependent on it in order to have a bowel movement.


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## flossy (Dec 8, 2012)

comptalk said:


> Yea, it's unreal. I am sorry to hear you have to go through it as well. I just don't trust the international pharmacies. I tried once with a Canadian one, they sent sugar pills. I disputed it with my CC and got my money back, but it was a hassle.
> 
> Yes, I am waiting for Motegrity to be available, but some client advocate put up a comment and is challenging the approval. They want a whole new review or something.
> 
> Yes, I ordered it on Friday when I saw it on this forum when I was reviewing the topics. It's not cheap, but I will ty it. I see it has Senna in it. I just worry that Senna would make me dependent on it in order to have a bowel movement.


Let me know what you think of it. I think it's best when taken *in the middle *of your main meal of the day. Take one extra capsule every day until you find the correct amount for yourself.

I currently take 3 capsules, regular strength, every day, but used to take way more (7 or 8 capsules) my first year or two of using it. Good luck!


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## wgbutler (Mar 15, 2018)

Comptalk,

I'm very sorry to hear about your struggles. I can empathize to a great degree. I also frequently find myself counting down the days until I'm finally dead and don't have to deal with any of this anymore. Since I got this problem again (after suffering from it as a teenager and young adult) my quality of life has diminished by at least 80%. Things I used to love to do I no longer do. My social life has completely plummeted, and the thought of doing normally fun things like going on trips with my family fills me with dread now. Just getting through a week of work is often challenging.

I agree that the D from Linzess and Trulance sucks, but I have decided to pretty much live with it as its better than being chronically painfully constipated. What I have been doing lately is taking these medications very early in the morning (setting my alarm clock for 4:00AM and then going back to sleep), and then usually by mid-morning its worn off and I can enjoy a good part of the day.

Prucalopride didn't get railroaded by the attorney group. That was Zelnorm. And I agree that sucks but Prucalopride should be available the first half of this year. And Tenapanor should be available by the end of the year. So we've got some things to look forward to. I agree with you about the foreign pharmacies, but if your life is really this bad, might be worth a shot. What do you have to lose?

Flossy posted a (small) study that found that taking Senna over a long period of time didn't affect your large intestine muscles or create dependence. At any rate, you could try it for a couple of months and see if it helped. If it doesn't do much you can always stop taking the IF #1 and I'm sure that trying it out for only a couple of months wouldn't cause any long term issues.

Hang in there. You are not alone and lots of people are going through the same sorts of things. We are all in this together and we will continue to help each other until we have good solutions for this medical problem.


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## annie7 (Aug 16, 2002)

comptalk said:


> Yes, I am waiting for Motegrity to be available, but some client advocate put up a comment and is challenging the approval. They want a whole new review or something.


hmm. i have read that a client advocate is challenging the approval of zelnorm .

hopefully they are not also challenging the approval of motegrity, too. there a lot of people here who've been waiting for this drug. someone here called Shire, the pharma, and they said motegrity should be available sometime during the first half of 2019.


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## annie7 (Aug 16, 2002)

wgbutler said:


> Flossy posted a (small) study that found that taking Senna over a long period of time didn't affect your large intestine muscles or create dependence. At any rate, you could try it for a couple of months and see if it helped. If it doesn't do much you can always stop taking the IF #1 and I'm sure that trying it out for only a couple of months wouldn't cause any long term issues


that's true--using stimulant laxatives does not cause dependence or damage your colon.:

https://www.ncbi.nlm.nih.gov/pubmed/15654804

https://www.ncbi.nlm.nih.gov/pubmed/12702977

https://www.ncbi.nlm.nih.gov/pubmed/8234421


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## wgbutler (Mar 15, 2018)

annie7 said:


> hmm. i have read that a client advocate is challenging the approval of zelnorm .
> 
> https://www.ibsgroup.org/forums/topic/352782-troubling-delay-in-re-approval-of-zelnorm/
> 
> hopefully they are not also challenging the approval of motegrity, too. there a lot of people here who've been waiting for this drug. someone here called Shire, the pharma, and they said motegrity should be available sometime during the first half of 2019.


I'm 99% sure he got Zelnorm confused with Motegrity. There is nothing on the website to indicate that anything has changed in their 1st half 2019 launch date:
https://www.motegrityhcp.com/?gclid=CjwKCAiAyrXiBRAjEiwATI95meqN7rVzEl7fIcLMSVxqSRrSXkEBwA1ggIiMJ7YWlVnGMb3eMfzbZhoCGlsQAvD_BwE

Zelnorm will also get back on the market eventually.

EDIT:

There's finally some mention of Motegrity on the Express Scripts website (my pharmacy):

http://lab.express-scripts.com/lab/insights/industry-updates/fda-update-january-2019

It's definitely going to be available soon. Here's hoping that it can make a big difference for a lot of people (especially me!).


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## annie7 (Aug 16, 2002)

thanks for posting this and the links.

and yes, i'm sure motegrity will help a lot of people--and hopefully you, as well.







we've been waiting for this med (and the return of zelnorm) for a long, long time.


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## comptalk (Sep 17, 2010)

flossy said:


> Let me know what you think of it. I think it's best when taken *in the middle *of your main meal of the day. Take one extra capsule every day until you find the correct amount for yourself.
> 
> I currently take 3 capsules, regular strength, every day, but used to take way more (7 or 8 capsules) my first year or two of using it. Good luck!


I've been using Senakot on and off. It usually does the job well, but I was afraid of dependency so my doc suggested Miralax and Milk of Magnesia. I will try it when it comes today. The biggest issues with Senakot, Miralax and Milk of Magnesia, at least for me, is the gas and bloating. It's goes away after things move, but that takes a 12 - 16 hours for me. I have a very weird system. I have a high metabolism, but slow transit system. Very strange.


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## comptalk (Sep 17, 2010)

wgbutler said:


> Comptalk,
> 
> I'm very sorry to hear about your struggles. I can empathize to a great degree. I also frequently find myself counting down the days until I'm finally dead and don't have to deal with any of this anymore. Since I got this problem again (after suffering from it as a teenager and young adult) my quality of life has diminished by at least 80%. Things I used to love to do I no longer do. My social life has completely plummeted, and the thought of doing normally fun things like going on trips with my family fills me with dread now. Just getting through a week of work is often challenging.
> 
> ...


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## comptalk (Sep 17, 2010)

annie7 said:


> that's true--using stimulant laxatives does not cause dependence or damage your colon.:
> 
> https://www.ncbi.nlm.nih.gov/pubmed/15654804
> 
> ...


Good to know. Without milk of magnesia or Senna, it would take days to eliminate for me "naturally". So embarrassing.


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## comptalk (Sep 17, 2010)

I wanted to try Resolor ahead of time. Does anyone know if a trusted Canadian pharmacy I can order from? I am sure I'll have to fight my insurance company to pay for the med as well. If I can have some sort of normal life, it' worth the money. Just not too trustful of Mexican pharmacies. I could be wrong of course.


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## wgbutler (Mar 15, 2018)

comptalk said:


> I wanted to try Resolor ahead of time. Does anyone know if a trusted Canadian pharmacy I can order from? I am sure I'll have to fight my insurance company to pay for the med as well. If I can have some sort of normal life, it' worth the money. Just not too trustful of Mexican pharmacies. I could be wrong of course.


Try this: https://www.northwestpharmacy.com/product/resolor

I tried to get my GI to write me a prescription for Prucalopride (Motegrity) so I could get started on it without having to wait for it to be released in the U.S. but he wouldn't do it.

I wish I had a GI that let me try anything to try to relieve my suffering, but I don't. If you have one, that is great.

Some other ideas:

* Have you tried out Amitiza? That works in a similar way to Linzess but the D is not as bad.

* Have you tried Miralax? I've found that that it sometimes helps and it has basically no side effect that I can detect.

* You could try taking Linzess/Trulance only 2 days a week when you know you are going to be home just to give yourself a couple of days every week to "reset", so to speak.

* Have you experimented with fasting? That's the single best thing I can do for myself. Helps tremendously, especially with the chronic abdominal pain.


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## annie7 (Aug 16, 2002)

comptalk i suffer from migraines, too. they are utterly miserable, aren't they. i was just reading that one of the side effects of Aimovig is constipation.

https://www.rxlist.com/aimovig-side-effects-drug-center.htm

hopefully aimovig is not making your C worse.


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## pukka (Nov 28, 2004)

I am in the middle of a flare right now and noting is working. I ran out of Linzess but the last time I took it (2) days ago it did not work. MOM not working too well either. I managed my IBS-C well for a long time but the stress of looking for work has caused a flare. What has worked until now is 500 mg magnesium, colace or Linzess (145 mcg) or MOM. Sorry, I dont have a lot of suggestions, I am looking for suggestions also.


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## Mary9874 (Mar 7, 2018)

Make sure you're eating enough. I know everyone's underlying issues are different. But for me, when I started keeping a food log, I realized I wasn't eating enough. The worse the constipation got, the less I would eat because it would diminish my appetite. I have slowly increased my calories (through lean carbs) and been consistent with it, and it has helped to upregulate my metabolism. My bowel movements are much better. I can't believe my GI doctors or nutritionist never broached the topic of eating enough. I searched the world for answers, even going to an Ayurvedic center in India. Who knew the answer was so simple. I'm not cured by any means, i still have my off days and I'm still bloated. But I'll take it compared to where I was before.


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## wgbutler (Mar 15, 2018)

Mary9874 said:


> Make sure you're eating enough. I know everyone's underlying issues are different. But for me, when I started keeping a food log, I realized I wasn't eating enough. The worse the constipation got, the less I would eat because it would diminish my appetite. I have slowly increased my calories (through lean carbs) and been consistent with it, and it has helped to upregulate my metabolism. My bowel movements are much better. I can't believe my GI doctors or nutritionist never broached the topic of eating enough. I searched the world for answers, even going to an Ayurvedic center in India. Who knew the answer was so simple. I'm not cured by any means, i still have my off days and I'm still bloated. But I'll take it compared to where I was before.


That's interesting. For me it is the opposite. I found that by eating LESS I have less pain and less issues with constipation. On days when I go whole hog and eat like I used to, I'm virtually almost always signing up for several days worth of agony afterwards.


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## comptalk (Sep 17, 2010)

wgbutler said:


> Try this: https://www.northwestpharmacy.com/product/resolor
> 
> I tried to get my GI to write me a prescription for Prucalopride (Motegrity) so I could get started on it without having to wait for it to be released in the U.S. but he wouldn't do it.
> 
> ...


No luck for me either. I was told to wait. Amitiza and Linzess caused diarrhea and profuse sweating. IBC-C is bad, but if I had IBS-D, I'd just kill myself. I try to eat only when necessary. Eating is fine, digesting is the issue. I was thinking on switching to Soylent, but the gastrointestinal issues people are facing killed that idea. Miralax either makes stool too soft and/or causes severe bloating pain.



annie7 said:


> comptalk i suffer from migraines, too. they are utterly miserable, aren't they. i was just reading that one of the side effects of Aimovig is constipation.
> 
> https://www.rxlist.com/aimovig-side-effects-drug-center.htm
> 
> hopefully aimovig is not making your C worse.


I figured that too. Usually, after the two injections, I have a slight heading and some constipation issues for a couple of days. Happens after Botox too. Prior to the Botox and amovig, I was having migraines near daily. Both have helped a lot. The IBS, chronic pain and the migraines make me feel like less of a person. I do get jealous sometimes of people who do not have these issues and can live a normal life. As bad as it sounds I sometimes hope I pass on in my sleep. Sadly, this never happens (obviously).



pukka said:


> I am in the middle of a flare right now and noting is working. I ran out of Linzess but the last time I took it (2) days ago it did not work. MOM not working too well either. I managed my IBS-C well for a long time but the stress of looking for work has caused a flare. What has worked until now is 500 mg magnesium, colace or Linzess (145 mcg) or MOM. Sorry, I dont have a lot of suggestions, I am looking for suggestions also.


My new regime is the following. If I follow daily, I'm usually okay. Miss one day, throws my digestive system out of wack.

morning: 6 phylum husk 500MG pills with a cup of coffee.

Nature Made Digestive Probiotics Ultra Strength Capsules: 12 Strain, 30 Billion CFU

GNC multivitamin

Night:

Kijimea IBS probotic (2 pills)

Dr. Schulze's | Intestinal Formula #1 (1 to 2 pills)



Mary9874 said:


> Make sure you're eating enough. I know everyone's underlying issues are different. But for me, when I started keeping a food log, I realized I wasn't eating enough. The worse the constipation got, the less I would eat because it would diminish my appetite. I have slowly increased my calories (through lean carbs) and been consistent with it, and it has helped to upregulate my metabolism. My bowel movements are much better. I can't believe my GI doctors or nutritionist never broached the topic of eating enough. I searched the world for answers, even going to an Ayurvedic center in India. Who knew the answer was so simple. I'm not cured by any means, i still have my off days and I'm still bloated. But I'll take it compared to where I was before.


Makes sense. I know I do not eat enough veggies. I do eat some whole grains, pears and avocados, but since the romaine lettuce recall, I do not like salads anymore.


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## flossy (Dec 8, 2012)

wgbutler said:


> That's interesting. For me it is the opposite. I found that by eating LESS I have less pain and less issues with constipation. On days when I go whole hog and eat like I used to, I'm virtually almost always signing up for several days worth of agony afterwards.


I agree with ya, wgbutler: Less in, less out, less constipation.


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## annie7 (Aug 16, 2002)

comptalk said:


> . As bad as it sounds I sometimes hope I pass on in my sleep. Sadly, this never happens (obviously).


i hear ya... and i sympathize. i have migraines, chronic pain and empty nose syndrome. way too much pain. i'd love to just pass in my sleep...

well, hopefully they'll bring zelnorm back. that's too bad your gastro doc wouldn't write you a script for prucalopride so you could order it online. hopefully Motegrity will be available here in the usa soon. i don't know what is taking them so long to release it.


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## wgbutler (Mar 15, 2018)

annie7 said:


> i hear ya... and i sympathize. i have migraines, chronic pain and empty nose syndrome. way too much pain. i'd love to just pass in my sleep...
> 
> well, hopefully they'll bring zelnorm back. that's too bad your gastro doc wouldn't write you a script for prucalopride so you could order it online. hopefully Motegrity will be available here in the usa soon. i don't know what is taking them so long to release it.


I called Shire up again today. You can get their number from their website. I talked to a customer service representative who basically just read the information off of their website, which says its going to be released in the 1st half of this year. So nothing has changed.

I don't know why its taking them so long to launch. As I've said before, this drug has been available in Canada, Israel, and Europe for years so it seems to me that as soon as it was FDA approved all they had to do was print some boxes with the new brand name on it and go. Oh well, at least we know that sometime in the next 3 1/2 months it will finally be available.


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## annie7 (Aug 16, 2002)

wgbuttler--thanks for keeping us updated on your calls to Shire.

it's just crazy that this drug is taking so long to launch! especially, as you say, because this med has been available in other countries for such a very long time. so frustrating!

as i remember, linzess was available fairly quickly once it was approved.


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## Friedrich (6 mo ago)

If you are interested, I too am experiencing a situation of extreme suffering in which it has almost disappeared from my life, there is a post of mine in which I express all my considerations perhaps a little different from the norm IBS C incomplete evacuation. my testimony and theory


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## annie7 (Aug 16, 2002)

Friedrich said:


> Se sei interessato, anch'io sto vivendo una situazione di estrema sofferenza in cui quasi è scomparso dalla mia vita, c'è un mio post in cui esprimo tutto le mie considerazioni forse un po' diverso dalla norma IBS C incomplete evacuation. my testimony and theory


please post in English. this is an English speaking board. thank you.


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## Pajarorose (10 mo ago)

annie7 said:


> comptalk---so sorry your ibs-c is so severe. and yes, i agree. living with chronic C is miserable.
> 
> like checkneed said, you can order zelnorm from mexican online pharmacies. when they took zelnorm off the market i and some other people here on the board ordered it from medsmex.
> 
> ...


Try altering your diet. This works better and is much safer than your medications. Most IBSC is caused by fructan, found in grains, Cut out all fructan containing grains. I noticed that you eat oatmeal, which contains fructans. Use alphagalactosidase with gos vegetables. Your constipation will be gone.


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## Sunstar (5 mo ago)

I’m sorry you have to deal with this. You are right people don’t understand. I have a rare genetic disease that causes severe ibs c and migraines and I think those are some of the worst parts of my condition. I don’t have any answers, but I’m here to listen.


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