Linzess

[kathyd]

Hi All,
Does anyone have luck with the new drug Linzess for constipation and or bowel issues caused by opiate pain meds?
One group member said Linzess works great for her at the lower dose.. taken in the AM.
I know are all different.
Linzess ia not not technically a laxative but a bowel regulator which sounds like a plus to me!

I feel like the use of various pain suppositories as needed plus other opiate meds have really screwed up my digestive system and motility and increased my rectal nerve and pain and pressure. I also wonder if the strong laxative I take is causing a constant urge to defecate.. I also need laxative supps at times which I hate.
All from use of opiates for severe pain.
Right now I'm at a low dose of opiates overall, yet still have this problem.

Hoping to try Linzess but need something that works well and fast so I don't have that "feeling" of always being backed-up with stool --- even when I know Im not!
Any success with Linzess anyone! ..pls post! These bowel issues are as almosst bad as the pain issue that preceded them.

Any advice most appreciated! Thx so much
Kathy
Thx!

[janetm2]

Kathy,
I am taking Linzess 290mcg at least 1/2 before eating in the morning. I will say it works but every now and then I get a slight diarrhia for a few hours in the morning. The tough part was getting aclimated and not realizing I would still need to tkae a stool softenger in the morning and 1 dose Miralax in the evening. I actually stopped the extra stuff when I satrtee the miralax so I got the constipation. Once I got the right mix I am doind well.
Janet

[kathyd]

Thanks Janet,
for your thoughts ..I wish it didn't affect us all so differently. I know one lady who can handle low dose Linzzess while the other is too much, My body seems to need a lot of anything, and Im a small person who doesn't eat large amts.
Im up to quite a few Duclolax to help with bowel issues ---from a tiny amount of opiates and then some Marcaine in my pain pump.--- plus the rectal supp (opiate)..
Doc swears its the rectal supps causing bowel issues which- makes sense except
that I was taking them for a years with larger amounts of opiate and didn't have as bowel prblms as bad as now. Hard to know!!

I agree that stool softeners are needed The first doc who gave me Linzess samples mentioned Miralax too.
--maybe larger amts of Miralax for me maybe will create more "regular" result".
Will see.
Thx!

[kathyd]

Hi Guys
Same subject again. Having trouble with Dulcolax ...for awhile not working well enough ..long story ,but lately I was glad to see my dose was working for the most part.
But the down side is its very dehydrating and output is (excuse the TMI!) very watery,,,Thus its pulling very needed water from my system.
Now I have the opposite effect... cramping diarrhea when my there's not in there today after same results yesterday. When I drink water I cramp up more.

I can titrate down to less Dulcolax (was "stable" at 3 pills at bedtime) or can switch to something els,--. which i prefer...I think this drug is not for me.

My reasons for having trouble with defecation are partially due to tight pelvic floor I believe, and Im re-starting PT ...as soon as we can work out the logistics.

Meanwhile Linzess sounds like a safer drug.
Ive been told you need to be "cleaned out" in order to start it...
But if took it at this moment, after my many visits to the bathroom ,I worry it would cause more diarrhea or 'urgency to poop sensation",, which I had from apparent spinal cord windup (or so Ive been told) re: the later.
anyone know the best way time to start this Linzess?
Have heard different opinions from different doctors -very confusing..
Thx so much--you guys know so much more!

[kathyd]

Hi Folks.
So sorry for all the questions! I really appreciate anyone who takes the time to read this..
I feel so bad always asking for advice lately; I have been struggling with a very upset digestive system ever since starting opiates for pain, and it's been even worse (it seems) since I've been on the pain pump).

I have one more question to go with my previous post.
The gastro-enterologist who has been advising me on my bowel issues has suggested that I be on a program which requires a daily Dulcolax suppository to get things "out".
(BTW the Fleet ones did not work.)

His program instructions are:
Step 1 .... 3 laxative pills at bedtime.
Step 2... now that the laxative has done its job in moving the stool down...the laxative suppository completes the job (sometimes!)
Since my most painful problem is anal rectal pain at the anal opening and on the right butt cheek near theopening, I HATE the idea of constantly putting suppositories in that area.

I already use pain suppositories as needed, so I think that more suppositories could only add to my anal rectal pain.
Doctor's opinions vary on this..One pain doctor agreed about it being too much suppository use.
But my gastro doc does not seem concerned, and feels the daily laxative supps are my answer----- but he has little knowledge of Pudendal Neuralgia, which is sadly the roadblock we all face with conventional doctors. They just aren't familiar with this rare syndrome, nor can they relate to how painful this is.

I would prefer a bowel stabilizer like Linzess rather than Dulcolax!
Since I asked for Linzess, my gastro doc is rxing it for me, but reminded me it won't produce quick results like Dulcolax...( I feel horrible anal pressure If I don't get stool out regularly each day, and sometimes even if I do! This is a new and painful symptom for me this summer.
This "anal pressure sensation"-- according to my Physical Therapist---- is a common complaint among her PN patients.

I am concerned---I don't like taking Dulcolax. This drug has really messed with my digestive system. And I would prefer not to do daily laxative suppositories. Its not pleasant, and it doesn't always work.
I need to get things out FAST and regularly. So hence the Dulcolax ,but I want to do what's best for my health and do it safely. I don't want to ruin my digestive system on top of everything else.
I have a low level of opiates in my pain pump, but also I have Bupivicaine (Marcaine).
It takes a lot to get things moving for me! (even tho I am very thin and am not eating as much as I would like to.
I know we are all different .
Would it be worth trying Linzess and dealing with the anal pressure sensation until the Linzess has a chance to work?
Exercise -wise I can walk around our neigborhood (we live in a suburban development with lots of places to walk), .. but being on my feet causes my pain (God- willing we will find something that helps! )
Meanwhile trying to get the stool out has become almost as bad a problem as the pain itself!
I like Miralax, but it also seems to work SLOWLY
Maybe I need to drink more water at the time I take it Miralax.
I know I am de-hyrdrated. My husband is worried about that, and begs me to drink more water, but I find that when my stomach is cramping--- the water makes it worse, and I am then running back to the toilet and loosing more water in each defecation (watery loose stools are what Dulcolax causes.) Such a vicious cycle...Dulcolax works but Ive had to up the dose to at least 3 pills to get results. Sorry for the graphic details!
If anyone can advise me on a safer but effective regimen (such as Linzess or Amitiza, or something more natural,
I'd really appreciate it.. I feel like Ive tried it all, but there's got to be something that will help!

Prior to this illness I was fairly normal in bowel habits. I never gave it a second thought.
I did have a touch of Irritable Bowel Syndrome (constipation dominant), but it only flared up once every few months --no big deal.
Once my IC symptoms began in 2006, the IBS stuff went away... until I began using opiates for pain.

Thx again for any guidance you may offer me. If I could break this daily vicious cycle it would really help in putting me on the road to recovery.
I'm so sorry to be asking for help so often . I appreciate the vast knowledge of everyone here and the responsiveness!

My best wishes to all, and Thanks so much again.
Kathy

[janetm2]

Kathy,
The Linzess did take time to kick in so to avoid constipation you may need to continue some laxative help. Then even after it did start working I still use miralax once in the evening and a stool softener in morning. If I needed more help I use senna laxative because it seemed less brutal than a ducolax laxative which sometimes makes me nauseous. I am trying to figure how to adjust for a once a week minor 2-3 hour diarhia but that is less stressful than the constipation!
Janet

[kathyd]

Janet,
thx for your response and yourthoughts.
I assume for me it will be a couple ofdays before the Linzess helps to induce bowel movement.
Like you I would need an additional laxative at the start (maybe a certain amount of sennakot and some Colace.) I think the Dulcolax along the Linzess might be too much.
(such guesswork --which laxative and how much.
Hopefully once the Linzess takes effect I can go down to just the Miralax.. and Linzess.
I know what you mean about the stress of constipation. I too would much prefer the diarrhea (at least I know Im going!)
than that full "back-up" feeling..I get more scared when that happens -of more pain and pressure etc- and and that only makes things tighter.

My issues seem to be a combo of a severe pelvic floor dysfunction ...making it hard to empty bowel and bladder completely, and the effects
of the opiates.
Tho Ive been told to try to rely on my pain pump meds and push a button which release a bit more medicine every few hours...this doesn't help, so I have no choice but to use the 12mg rectal dilaudid suppositories , which helps briefly only...but its something.
Docs feel its the source of my "back-up" but Ive been using these since 2012 and didn't have the above daily backup issue until this spring , I have to wonder.
Dulcolax can be nauseating a bit as Ive noticed too as I've upped the amount.. I feel a bit queasy too, until I lie down..
Sometimes even 3 Dulcolax won't produce a good output for me ( just small "cluster" bms all all day ) This tells me my pelvic floor isn't releasing. Very scary not knowing..Its no way to live..
Im hoping a new Physical therapist Im about to re-start with soon who sounds savvy,, will help with the tight pelvic floor.
She uses some of the methods covered in the latest edition of "A Headache in the Pelvis." BTW I just bought this latest edition -- #6 and its got some new info that I can surely relate to.. its $25.00 but worth it to have as reference...
I read the earlier edition back in 2007 when my symptoms were new. Back then the book then was geared more towards men, but has been updated considerably over the years and now deals with womens pelvic pain as well.
Janet thx for your input and good luck.
Kathy

[Violet M]

Kathy, I was thinking the same thing as Janet -- that if it's OK with the doc you could continue with your current laxatives until the linzess kicks in. I have to take something regularly or I run into problems so I know what you mean about not getting backed up.

Violet

[janetm2]

Kathy,
Glad to help amd I wish you the best in geeting things under control!
Janet