Posted 18 January 2013 - 01:31 PM
So anyways, I started out with the higher dose of Linzess (290mcg) and I took it in the morning. Later, after I ate lunch, I had mild cramping and a half hour after those cramps I was in the bathroom 6 times. I had about a 2-5 minute break between each BM before I went running to the bathroom again. After that stopped, I would drink water and a second later have the urge to go again. It was awful and the same thing happened when I tried it again the next day. I even tried it before I went to bed instead of in the morning and I still had watery diarrhea 6 times.
I moved to the lower dose (145mcg) and I took it at night time because I like to have BMs in the mornings and hoped that Linzess could help with that. When I awoke I thought a miracle occurred. I had a normal looking BM and it felt completed and I felt empty and it was great. This greatness continued for the next three days. I even sometimes went after lunch which was nice too. But then I decided to take my Omega-3, VSL #3, and Vitamin D supplements before bed too with Linzess and I woke up and had diarrhea and went to the bathroom 3 times in a row and had cramps all day. The next night I decided not to take all those supplements with Linzess like I normally didn't and I woke up with diarrhea and went twice. I really hope this goes away I was feeling so great. This diarrhea makes my stomach sore and gurgley and I always feel like I'm going to get the urgency to run to the bathroom again
Posted 18 January 2013 - 02:30 PM
thanks for the update. sorry it's been so problematic for you. it sure would be so wonderful if it worked better.
my gastro finally got his linzess samples in. he didn't give me too many and they're just the 145 mcg--guess that's all they got in. i'm not going to start taking it for a while because i'm still trailling cytotec. currently i have so many other health problems, doc appts, tests etc etc going on now as well as some road trips that i'll have to hold off on linzess for awhile. i have colonic inertia, a twisted colon and a rectocele so i really don't think linzess is enough for me--i need dynamite to get stuff moving and out--lol---but i'll get to trying it eventually--probably february when things calm down a bit around here.
hope it starts working better for you!
Posted 18 January 2013 - 07:46 PM
i really hope that it starts working better soon too, i don't understand what happened with it.
oh wow you sure have a lot on your plate this month . i'm sorry you have to deal with all that. But at least you got some samples for Linzess! I definitely don't think the 145 would be strong enough for you but if you take two together that's like the higher dose. So at least you can try both which is great! Let us know how it works for you when you finally get the chance to try it.
Posted 19 January 2013 - 05:28 AM
oh yes i'm definitely going to start with two of them--the 290 dose. he only gave me 16 pills but at least i'll have enough for a week's trial. from what i've read about the clinical trials, most people had results within the first week of treatment and some the very first day.
i do hope it gets better for you. that's so disappointing when something works well and then it tanks. it's always so hard to figure out why--especially with these new drugs, where not that much is really known about them and not a lot of people have tried them yet.
Posted 20 January 2013 - 03:10 PM
Hi I am a new member with a very long term IBS-C problem. About my Severe C; am totally dependent on enema to go; live in the bathroom 3-5 hours a day and still work. It is horrible. I started Linzess 3 weeks ago, and my first week I had cramps and gas, no bm. This past week I had strong urgency but my colon is so bad that nothing will come out without enema (warm water and soap). I have had the benefit of it reducing my time in the bathroom, but not by much. I take it at night, since I am only able to go in morning. I am also on Probiotics and use 3 stool softeners a night. I am so tired of living in the bathroom!
Has anyone had such severe IBS-C (20+ years) like me out there and any luck with Linzess?
Thank you to all of you.
Posted 20 January 2013 - 04:49 PM
Posted 22 January 2013 - 10:43 PM
Hi all! I was just browsing for reviews about Linzess as I'm considering trying it, but I'm hoping that maybe I can also help some of you out as well. I have had IBS-C for almost 19 years so AliP, I understand how debilitating this is for you. I have tried numerous things (as I'm pretty much beyond the help that doctors can give me) that would help me temporarily but have never been completely normal. I am a big advocate of probiotics because most of us don't have enough good bacteria in our guts to begin with. In the last 6 months or so, I've discovered Phillips Colon Health Probiotic Caps, and I've never had more positive results. I am now regular (daily or every other day). This is a different type of probiotic than I'd ever taken before (bifidobacteria as oppose to lactobacillus). I take it once before bed and go in the morning. Now, it still sometimes requires a conscious effort. Sometimes, I have to sit before I get the feeling that I have to go but not for hours. It can sometimes require that you "train" yourself to sit at approximately the same time each morning. The reason I'm inquiring about Linzess is that although I'm finally going, I'm still dealing with distention and gas that I'd like to get rid of. For anyone interested, Phillips' Colon Health is a little pricey but worth it if it works for you. I usually buy it at Walmart, but Target also carries it. I hope that this information is able to help as many of you as possible because honestly, my quality of life was severely diminished for many years when my symptoms were at their worst. I wouldn't wish this on my worst enemy.
Posted 23 January 2013 - 10:14 PM
thank you for sharing your experience with Phillips Colon Health I'm really happy it's working for you! How long did it take before you became "regular" with this probiotic. I would like to try it out.
Posted 23 January 2013 - 11:18 PM
Posted 23 January 2013 - 11:22 PM
Posted 28 January 2013 - 03:55 PM
I just got my prescription for Linzess, but haven't tried it yet. I'm glad I read this post, because I thought you could only take it in the morning and I hate having to go to the bathroom at work. I'm one of those people who can usually only "go" in my own house. I got the 145 dose, so I am thinking of taking one at night and if it doesn't work too well, I'll take another one in the morning and I guess if it works at work, I will have to "suck it up" and go at work even though I hate to. I just hope I don't get the "trots". I'll report back in a few days.
Posted 30 January 2013 - 03:35 PM
I'm trying it out tomorrow morning. We'll see what happens.
Posted 31 January 2013 - 11:50 AM
Took it at 8:25 this morning. (The lower dose.) It's 10:48AM now, and I've had diarrhea twice. My face and scalp feel rather itchy right now, and I just felt another urge. Not impressed, so far, though I do feel "cleaner" inside. More updates later.
Posted 31 January 2013 - 03:22 PM
Now 2:17PM. No diarrhea since just after 11:00AM. Had low-grade nausea, bloating, near-zero energy, and a dull headache around lunch time. Lower GI now plugged up and/or completely shut down. Dry mouth. Remaining at home, in the event something violent happens, though it doesn't seem likely now. Still not impressed.
EDIT: I'm doing some research online, and I'm seeing that Linaclotide has a short half-life. So, this stuff may already be out of my system for today? I have to remember that medicines can take weeks to reach full effectiveness.
Posted 31 January 2013 - 06:32 PM
Now 5:26PM. Cold. Chilled to the bone, which is a hot sign of an impending IBS attack. (Chills are also a side effect of this medicine.) Nose has been stuffy and/or drippy all day, and that is a noted side effect, as well. Digestion still locked up/shut down; no bowel activity at all since around 11:00 this morning. Dry mouth continues. Felt some indigestion about an hour ago. With the understanding of medicines taking awhile to reach full effectiveness, I'm still not impressed. I don't feel any better.
Posted 01 February 2013 - 12:09 AM
Now 11:09PM. Just had horrific gas pain and cramping. I'm not taking any more of this medication!
Posted 01 February 2013 - 03:26 PM
dr just gave me some to try but my dr said you have to be fully cleaned out for it to work properly .. so I will do the go lite and then start the Linzess ... Only 1 tablet a day . will let everyone know how it does for me ....
Posted 01 February 2013 - 03:36 PM
dr just gave me some to try but my dr said you have to be fully cleaned out for it to work properly .. (snip)
Oh. Hadn't heard that. Thanks for the heads-up. My doctor and I are playing phone tag this afternoon. I'll mention this to him.
Posted 01 February 2013 - 04:30 PM
Razzle--yes your doc is right--good advice
linzess is not a laxative but a bowel regulator. so if you're backed up, do a clean out first before trying it and it will work better.
Posted 03 February 2013 - 03:06 AM
I iwas at my primary care and she was very hopeful about the possibility of Linzess working for me as my IBS-C was getting worse. I was given samples of the lower dosage Linzess which I took for a week and made no difference. I have moved on to a GI doctor who said I needed the higher dosage. Linzess now comes in 30 day samples and its reps are telling the docs that it may take time to normalize the GI system and patients should stay on the medication for an extended period of time to tell if its working or not. I have now been taking the higher dosage for about a week and have extreme discomfort bloating and diarrhea. I hate constipation but with the amount of discomfort I'm having I think it's just as bad. As anyone taken this medication for longer than a week and noticed the GI symptoms regulating as time goes on?