# Doctor Prescribed Me Linzess



## HelpPlease87 (Aug 7, 2014)

Hello, I suffer from severe IBS. I have used lomotil, questran, bentyl, levbid, immodium, calcium carbonate to try to help with chronic diarrhea. The only thing that has even really come close to helping is lomotil and I still can't live a functional life even taking 8 tablets a day. My ibs d has gotten. So bad over the past 18 months I lost my job and I have become pretty much a shut in. A new GI doctor I am seeing prescribed me Linzess and said that it would help my symptoms after I had a series of tests done and an upper and lower scope done. He told me to drop the lomotil and questran and start taking the linzess. Now when I looked up what this drug was for I saw that is was prescribed to patients with ibs c or chronic constipation. I am baffled as to why he would prescribe this drug to me knowing I suffer from severe diarrhea, telling me it would stop all my symptoms. I've had enough of the colonoscopy and GI doctors telling me there is nothing more they can do. Ibs d has literally ruined my life and I have lost all hope of living a normal life ever again. I suffer from this condition every day of my life, and spend several hours every morning in the bathroom. Now I have a doctor giving me a drug that treats constipation and it's most common side effect is diarrhea. Should I even try this drug, after what I read about it, this seems ridiculous. I have seen no information that indicates this is a drug used for ibs d but I have found information stating that this drug should not be used by people with ibs d.

What should i do?


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## annie7 (Aug 16, 2002)

i'm totally baffled by this too. i have chronic constipation. i've read a lot about this med, discussed it with my gastro docs and of course tried it (long story--didn't help) but yes you are right--D can definitely be a big side effect. it is not recommended for people with D--at least that's what the drug manufacturer says. from the linzess website:

Diarrhea


Diarrhea was the most common adverse reaction of LINZESS‑treated patients in the pooled IBS‑C and CIC double‑blind placebo‑controlled trials. Severe diarrhea was reported in 2% of LINZESS‑treated patients. The incidence of diarrhea was similar in the IBS‑C and CIC populations.
Patients should be instructed to stop LINZESS if severe diarrhea occurs and to contact their healthcare provider, who should consider dose suspension.

ADVERSE REACTIONS


In IBS‑C clinical trials, the most common adverse reactions in LINZESS‑treated patients (incidence ≥2% and greater than placebo) were diarrhea (20% vs 3% placebo), abdominal pain (7% vs 5%), flatulence (4% vs 2%), headache (4% vs 3%), viral gastroenteritis (3% vs 1%) and abdominal distension (2% vs 1%).
In CIC clinical trials, the most common adverse reactions in LINZESS‑treated patients (incidence ≥2% and greater than placebo) were diarrhea (16% vs 5% placebo), abdominal pain (7% vs 6%), flatulence (6% vs 5%), upper 

https://www.linzesshcp.com/

really, if i had D i'd be afraid to take it.

can you call the doctor's office to mention your concerns and ask why he prescribed it? and maybe try another doctor...

i do hope things get better for you.....take care.


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## HelpPlease87 (Aug 7, 2014)

Thank you. This is 3rd GI doctor I have seen now. I've had 3 colonoscopies. And both of my past GI docs basically told me there was nothing else they could do but prescribe me lomotil and questran since antispasmodics do nothing. I don't know what to do anymore. I'm sick of going to these doctors and going through the whole routine again. They blatantly lie to my face and now I have a doctor that could be prescribing me a drug that could worsen my condition.

I am starting to understand why people commit suicide over this condition. I don't want to live like this any longer, I express my concerns but these doctors don't seem to care. My best shot, apparently, is to purchase narcotics illegally and try using them to treat my condition.


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## BQ (May 22, 2000)

Hi Help... yeah I would not take the Linzess if I were you. I know it is more than frustrating. But.. I have learned that once a diagnosis of IBS is reached via a Doctor there isn't really a whole lot more Dr's can do for us. Treatment & management of symptoms is largely done via trial and error by each individual patient because all of us are different. Most patients find that a combination of treatments working in concert helps them best. (And no.... narcotics is *not* a good treatment and could actually cause worse things to happen) You just need to find that combination.

Have you looked into the Calcium Carbonate?? (See the 1st page of the "Linda's Calcium" thread pinned to the top of this forum for info) Have you used the imodium preventatively.. with meals? (If it causes cramping.. use an anti-gas (simethicone) product with it) How about probiotics??? etc..


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## HelpPlease87 (Aug 7, 2014)

I've tried everything you mentioned. Immodium does nothing. And I have to take 6-8 lomotil to leave my home. I've tried calcium carbonate. I have a very severe case of chronic diarrhea. My ibs d wasn't always this bad but the last. 18+ months of my life have been hell. My social life, job, everything has been ruined. At first I hoped it was something that would pass in time. When it didn't i got scared and asked GI doctor for another colonoscopy. Of course it showed nothing. He ended up prescribing me lomotil which actually makes it possible to leave my house at all. I have exhausted every treatment I have researched except for rifaximin and deodorized opium tincture. Since I cannot afford rifaximin and insurance won't cover it, it is off the table. Unfortunately my only option is to use a stronger anti-motility drug which would be a narcotic. I hoped maybe there was something out there that could help but I've been actively trying different treatments with no success for over a year and a half. Only thing I haven't tried is rifaximin and some sort of narcotic. I'm tired of struggling, I want relief, because honestly the life I am now living is no life at all. I am absolutely miserable and get no enjoyment in life. I never felt like this until my ibs got this bad.

Probiotics make my diarrhea a lot worse. Calcium carbonate does well nothing for me. I take 6-8 lomotil to venture out of the house and even then I may experience ibs symptoms. I taper down off the lomotil and take very little on days I am not leaving the house so that it doesn't lose
It's effectiveness.


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## BQ (May 22, 2000)

Well continue to use the lomotil then as you are and add other things. Have you looked into using Omega 3's or Oleic acid?

See this:

http://www.ncbi.nlm.nih.gov/pubmed/11281167

It can really slow things down. Worth a try since you have tried everything else.

Here are some food sources:

http://wholefoodcatalog.info/nutrient/oleic_acid/foods/high/


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## Trudyg (Aug 16, 2002)

I had the same thing happen to me. I wanted Lotronex, the dr kept telling me that 'this is the newest thing on the market for ibs' and was clueless about the different kinds of ibs. i documented all of it, told Blue Cross that I'm not paying his bill. They didn't pay him, either. I wrote to the pharm company, they told me follow my dr's advice(!) what moron's. I sent certified letters to everyone I could think of, kept the copy and receipts--I'm waiting for a lawsuit so I can get in there and say I told you but you didin't listen, pay up. Now, You need to go to your pharmacy, see who is prescribing Lotronex and go to that dr. That's how I did it and have been taking it ever since.


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## BQ (May 22, 2000)

Yup... amazing isn't it Trudy? I mean I thought it was first do no harm???


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## HelpPlease87 (Aug 7, 2014)

I called the pharmaceutical company that makes linzess and had someone call me back and tell me that it is only for people with ibs c or chronic consptipation. She said that I should not take the drug and that it will most likely make my condition worse. I believe she said that 20% of people who used it developed diarrhea. I am amazed that I was told to take this. I can't seem to find a decent GI doctor in my area.


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## BQ (May 22, 2000)

Unreal! But like I said.. once a diagnosis is reached.. there isn't much they can do for us anyway. Try the oleic acid and see if that helps.


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## HelpPlease87 (Aug 7, 2014)

Is lotronex effective for men. I believe I read it is only prescribed to women and a waive has to be signed.


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## BQ (May 22, 2000)

Some Dr's prescribe it for men. Ask your pharmacists if they know any local Dr's prescribing it.


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## AIRPLANE (Mar 15, 2004)

I wasn't prescribed Linzess but I was told to take Milk of Magnesia or Miralax by the young intern I saw at Mayo two years ago even though I have loose stools and tend more to the diarrhea side of things. I did have severe cramps and strictly diarrhea for many years so I know how miserable and life changing it can be. I am now what I would call alternating IBS and if I'm not careful I can have either D or C. My biggest issue is with things getting trapped in the sigmoid area- probably due to prolapse issues no Dr. wants to consider as an issue- maybe because of the mesh problems and lawsuits. Doesn't matter if I have C or D- things get stuck and can cause discomfort and urgency. The only type of laxative I will ever use is suppositories. If I took any oral laxatives I would be totally homebound. I actually had tried Milk of Magnesia years ago when I heard the theory that some diarrhea is really constipation (like a violent washing out effect) but that was a big mistake! It was like having a stomach virus until the effect wore off.

I don't think Drs really understand chronic diarrhea or believe it is as common as it is. They are much more familiar with constipation even though it can be equally as difficult to treat. I had really hoped that Mayo would have been willing to let me try Rifaximin- I would be willing to shell out for it once. I had the SIBO test but they said it was negative. However, it did show I had hydrogen and was a non-methane producer which fits in more with diarrhea than constipation so when the young intern there said "I know what's going on- your diarrhea is really constipation!" I knew I was dealing with a loser. And for the second time in seven years all they wanted to do was push the old PFD diagnosis on me and soak me for about $10,000.00 for nothing! I think not. But $900.00 for Rifaximin- I would have done if given the option.The SIBO test is not reliable anyway plus I had been on a very low-carb diet. I think that restricted diets and certain supplements might effect the accuracy of the test also but Mayo wasn't interested in that.

Were any of your Drs willing to let you try Rifaximin? I know you said it wasn't in your budget. I know that using it for SIBO has been considered off-label but I thought they were trying to get it approved. Wonder if they are making any progress. But for me it doesn't matter since the Drs I have seen are not willing to try it anyway. When I had a bad bout of gas, cramps and loose stools a few years ago a sympathetic Dr prescribed me Flagyl and Cipro for two weeks and after I finished taking it I did have improvement for awhile. And he did it without an office visit- he was on-call and did it over the phone and he wasn't even a gastroenterologist! Sometimes I think that gastroenterologists are the worst in their field of specialty!

At least my regular Dr. is willing to prescribe Tramadol for pain which helps. Just having pain relief helps, plus it has a slightly constipating effect but not as bad as narcotics. I do keep Imodium on hand and use if necessary. I avoid aspirin and all Nsaids as I think they can be irritating to the GI lining even though they are supposedly absorbed in the stomach. Ibuprofen and Naproxin definitely make my diarrhea worse. So does eating too much sugar. And I avoid anything with carrageenan- used as a thickening agent in foods- as it is also thought to be irritating to the GI tract.


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## HelpPlease87 (Aug 7, 2014)

I get the morning rush and I take 6-8 lomotil to slow things down. It takes 3-4 hours to get ready to leave my house because of D. But after about 6 hours the feeling of urgency leaves. I believe the lomotil just takes to long to kick in but works. Maybe it has to do with the long half life. I need something that works faster (immodium doesn't work) and I can basically piggy back it with the lomotil. A single dose of codeine in the morning plus some lomotil might be all I need. In many developed countries codeine is OTC but not in the US.

Apparently my GI doctor prescribed the Lizness because he thought my colon was impacted with stool because of x ray. The issue (apparently in some cases) is that the impacted stool causes spasms and excess mucus and water to be released as the colon is trying to purge itself. This causes the motility issues and urgency and mucus.

I do not believe this is the problem but based off the findings I can understand why he chose this approach. If I know I have an appointment or somewhere to go I prepare for it the day before. Usually I wake up a few hours before I have to leave to wait out the morning rush, and I take my lomotil intermittently between trips to the bathroom. I also consume a couple bottles of water when I wake up as well to speed things up. However, the day I had the x ray I took lomotil the night before, and when i got up I didn't have time to do my normal ritual and took 2 lomotil immediately upon waking and 2 before I went to the bathroom. I did not eat or drink any water. I took 3 more before leaving. I believe this caused the results that were misleading. I did feel rather bloated that morning and my gut felt heavy because I didn't pass nearly as much stool as usual.

Anyway, sorry for the disgusting details. I had a pharmacist and another doctor explained why he may have prescribed the medication and I understand. I just think that the x ray was perhaps inaccurate because of what I did. I did end up taking the Lizness for a few days, dropped the lomotil and was housebound or should I say tolietbound the whole time I took it. Needless to say I stopped.


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## bushja1 (Apr 23, 2003)

I get so frustrated with everything that is supposed to help, seems to make matters worse for me. I was just joking over the weekend that I'm going to ask my doc for something should make matters worse...I seem to respond in the opposite manner.


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