Linaclotide

[Profound15]

I’ve just been prescribed the above for my symptoms which are constipation (probably slow transit or lack of peristalsis), excess gas, nausea (in the morning due to build up,of gas I think), bloating and trapped wind. She told me I had IBS C and I take a laxido every second day and use Peristeen plu irrigation. Could anyone tell me what to expect with this medication please. I’ve read it can cause diarrhea which is fine. Does the movement of stool happen the first day I take the tablet please. Any other info would be gratefully received

Thank you

[xjrs]

I take Linaclotide, but it is a while since I first started taking it. From memory there was a bedding in period of a couple of weeks when BMs were less predictable. However, I don't remember having diarrhoea with it and actually it tends to help me more with IBS pain than motility. However, everyone's reaction to a specific drug is going to be unique to them, so what happens with one person won't necessarily happen with another. I know it helps a lot of people with BMs.

I use dietary measures (fibre) including ginger extract for motility. Tips here:

ibsresearcher.com/constipat...

By the way full pain effects aren't felt until week 10, so it is something that needs to be trialled for a little while to see how you get on with it. Follow the instructions but you may also be able to play a bit with the timing of taking it. For instance, it is instructed to take a certain time before meals. However, I take mine before bedtime since I feel the most pain overnight (and also for me it won't have me going to the loo in the night). But as I said everyone is different. Good luck.

[Profound15 in reply to xjrs]

Thank you

[nicky54]

I have it to take but haven't started yet as need to find a zone where diarrhoea sides effects can take place - first two weeks are meant to be acclimatization period One month supply is meant to work as a trial

The effect I have been advised is that it should pull water into the colon and keep the stool soft to aid transit - movement in first two weeks varying person to person

If it causes too many harsh side effects after week of use e.g pain constant diarrhoea then stop

Good luck

[Profound15 in reply to nicky54]

Thanks Nicky. I’m going to start taken it tomorrow. Will take the first dose early morning before breakfast. Hoping it’ll help as I have an issue with lack of peristalsis fairly regularly.

[Harley1020 in reply to Profound15]

Hello, hope it helps.

Can you please let us know how you are as I’ve been thinking of asking my GP for a trial period due to slow transit,

Good luck.

[Profound15 in reply to Harley1020]

Hi Harley

Will do. Think it has to be prescribed by a consultant

[Harley1020 in reply to Profound15]

Many thanks, greatly appreciated.

[Krisbetty in reply to Harley1020]

It can only be prescribed by gastroenterologist,

[Profound15 in reply to Harley1020]

That’s two days I’ve taken linaclotide. Yesterday using peristeen irrigation produced good results albeit was watery (Bristol stool chart 7). I don’t think I’m still constipated and apart from the watery stools so far feel ok. Today I took it well before breakfast. Nothing really happened apart from some trapped gas. Used peristeen at lunchtime again and had a good result probably not as much as yesterday but seemed to be what I was needing. Again was very watery with tiny stool bits (sorry for the details).

[Profound15 in reply to Harley1020]

Hi Harley

Been on linaclotide now for 9 days and I can advise that I haven’t had diarrhea but have had very watery defecation. I’ve also suffered from bloating and trapped wind although yesterday was a bit better. I believe that it’s a slow working drug which takes time to settle in to your system. I’m using peristeen irrigation daily and have been able to go every day to the loo. Up until today it has been diarrhea like but not spontaneous explosions. An hour or two after taking the capsule I feel a need to go to the loo but generally nothing happens. I know as I think it’s gas when in fact it’s watery stool. Today was interesting as I did go twice and released some watery stool (v small amount) but when I used my irrigation it really did clean me out and it wasn’t all watery. Think one of the keys is to drink plenty of water after taking the capsule I think. I’ll keep taking it and see how things go. Encouraged by today though.

[Harley1020 in reply to Profound15]

Many thanks for information, greatly appreciated.

Glad to hear you were encouraged by today’s results. Hope it improves with more water. Take care.

[Hennen]

I find this medication very helpful, but I have to take a lower dose that what is typically recommended. I take 72mcg daily. The higher doses caused too much gas and loose bowels.

[Profound15 in reply to Hennen]

I’ve been prescribed the 290mcg so I’ll just have to see how it goes.

[Dudders123]

I am in a similar position, and eager to hear about experience with linaclotide - never been suggested by my team - hoping for useful replies, this is an amazingly helpful group .

[Profound15 in reply to Dudders123]

Think for IBS C the prescription is 290mcg. The smaller 145 tablets I thing are for CIC. Not sure about the 72’s. In the U.K. it’s the 290 that’s available and used I’ve been told.

[Beakybird58 in reply to Dudders123]

It’s been suggested by my colorectal surgeon as an alternative to moventig( which caused dreadful pain) I am interested how everyone gets along with it. It’s a bit of a faff having to go to the hospital to collect but I think Gp can prescribe after first prescription by consultant.

[Profound15 in reply to Beakybird58]

Yes that’s my understanding as well. My GP has asked for confirmation from the consultant that it works for me. That’ll be somewhat down the line.

[Beakybird58 in reply to Profound15]

Same here sadly. It’s all a waiting game 😢

[Krisbetty]

Been taking it for over a year, whilst i dont have a BM everyday i have one at least every 2 days which was normal for. Just drink alot of fluids to assist the tablet too work more efficiently. Take it at least an 1 hour before breakfast.

[Profound15 in reply to Krisbetty]

Thanks Krisbetty. Took my first capsule (290mcg) this morning. Are you taking the 290 and do you have IBS C please. I also have a problem with rectal dysfunction but biofeedback is helping that a little bit

[Krisbetty in reply to Profound15]

I was diagnosed with IBS C and 290mcg linacoltide also jad biofeedback yold o wasn't using my muscles correctly. But it works out I have knacked hips so thats why my muscles are not working correctly hence leading to constipation. The linacoltide still helps until i get my hips replaced. I also have gallstones amd awaiting for surgery to have my gallbladder removed.

[Profound15 in reply to Krisbetty]

Thanks Kribetty. I’ve been to the loo this morning after taking my first capsule. What was very pleasing was I managed to evacuate without irrigation. I was told it can take a week to have a bowel movement so it did come as a pleasant surprise and wasn’t diarrhea but just loose (sorry about the graphics)

[Profound15 in reply to Krisbetty]

Hi Krisbetty

Now two days on linaclotide and had bowel movements both days. Used peristeen irrigation and that has worked for me. My movements are watery with small bits (sorry about the graphics) and wondered if yours were the same pls.

[Rumours]

Hi I’ve had slow transit constipation for many years and tried numerous laxatives.

I know everyone is different and what suits some won’t suit others so basically it’s just a case of trial and error.

I have tried Linaclotide in the past and I had awful bloating and unpredictable diarrhoea, I felt extremely unwell.

I am now taking Prucalopride (Resolor) 2mg and Bisocodyl 5mg every night which I am able to tolerate better.

Wishing you the best of luck x

[Profound15 in reply to Rumours]

Thanks Rumours. I tried prucalopride and it made me feel pretty lousy. Hence on Linaclotide now.

[Profound15 in reply to Rumours]

I only tried prucalopride for one day and felt lousy although it worked the next day. Could you advise what you experience with it please Rumours

[Rumours in reply to Profound15]

Hi I remember the first week of taking it I had bad headaches but I persevered and now take 2mg every night together with Bisocodyl 5mg. To be honest I can’t really say if it helps much but together with the Bisocodyl I manage to have a bowel movement most days. My GI advised to stick with it to avoid any future problems with impaction. As I mentioned before some things work for some people and not others it’s all trial and error but I hope you find some relief soon.

[Profound15 in reply to Rumours]

Hi Rumours been on it now for over two weeks and whilst it’s made my stool watery, it’s also caused trapped wind I think. I still struggle to defecate without peristeen. Being watery now means it evacuates when I release the water but there’s little solid poo. I was hoping it would reduce the amount of excess gas I had and would cause more peristalsis. It doesn’t seem to have done that. Maybe it’s too early but I’m not convinced it’s doing what I was hoping for.

[Rumours in reply to Profound15]

I really feel for you it’s miserable taking loads of medication and still not feeling any better maybe you should try and bring your next outpatient appointment forward if you can

[Profound15 in reply to Rumours]

Thanks. The crazy thing this morning is that I did a spontaneous defecation just after I posted my previous note. Is this the sign of things to come with Linaclotide 🤔

[Profound15 in reply to Rumours]

I only tried prucalopride for one day and felt lousy although it worked the next day. Could you advise what you experience with it please Rumours

[Meleber in reply to Rumours]

Hi, also take 2 mg prucalopride and 5 mg bisacodyl for my IBS C. I take the bisacodyl first thing in the morning. Also take simethicone/simeticon for the functional bloating. Besides I take some cascara sagrada/rhamnus purshianus during day time. Diet is low fat/low fibre, works the best for me. Tried linaclotide too but it didn't agree with my bowels. Still trying to find underlying cause of my dysfunctional gastrointestinal tract and this could be because of a form of dysautonomia, nerve/muscle problem.

[Profound15 in reply to Meleber]

Thanks Meleber. It’s a struggle for me at present. Are you allowed to take bisacodyl every day. I was told it can cause dependency. I’ve asked my specialist about using a suppository regularly as I feel this could help as a rescue medication. My only other option is to go down the road of a colostomy. My rectal muscles are still not 100% and I’m having to strain significantly a lot of the time even with the irrigation.

[Meleber in reply to Profound15]

Yes, I may take it every day if needed but not more than twice 5 mg daily the gastroenterologist told me. It helps to push the fecal material up through the ascending colon.

[Rumours]

good luck with it I hope it helps you x

[Profound15 in reply to Rumours]

Thank you

[Profound15]

It’s been 12 days on this drug now and I’m suffering from watery stools every day. First thing in the morning I feel a need as if I’ve got diarrrhea but struggle to evacuate anything (little dribbles is how I’ll call it). So I don’t have anything that I can’t control but it’s quite uncomfortable as, due to rectal dysfunction I struggle to release it.

I’ve also been getting a lot of trapped wind which takes me time to release through exercises my pelvic floor physio has shown me.

To sum up, I can’t say it’s been a success so far as I was expecting to have complete & spontaneous BM’s which I haven’t had. I’m still having to use peristeen irrigation every day. Whilst I don’t want to go down the road of a stoma I feel I’m heading in that direction.

[Beakybird58 in reply to Profound15]

Hi, I’m in a similar situation to you.

I’ve finally got my hands on LINACLOTIDE but due to rather alarming pr need when I douched, think I popped a large internal haemorrhoid. So I’ve cut back the amount & temp of water I douche ( I add a bit of salt to the warm water and douche more gently) sometimes I can’t even release the water so have to insert a finger up gently. I always get v loose stools as take sennacot every night. I was prescribed cosmocol but that gave me dreadful gut ache following a BM.

Can you still take sennacot or similar with LINACLOTIDE? I have a large rectocele, I constantly want to ‘go’ but sometimes there’s nothing there. It’s keeping me wall night. I have a silicone pessary insitu… can’t say it’s doing much. I don’t have stress incontinence but have interstitial cystitis, so I’m up peeing several times a night aswell! I’m seeing pelvic physio friends 14/2 so will check with her . I’m doing all the exercises she’s taught me.

It’s miserable not being able to poop naturally. A stomach has been suggested as last resort as I have a dysfunctional bowel from years of taking opioids for neck surgeries x3, and now have developed a lumbar scoliosis with wedge fracture. I just want a posterior vaginal wall repair first… I want to avoid a colostomy at all costs!

Wishing you all the best. X

[Profound15 in reply to Profound15]

Well that me taking Linaclotide for nearly a month. So far it’s worked fine with me at least having watery stools spontaneously daily. Today was great as I did a full bowel movement spontaneously which I’m hoping is a sign of things to come. This has happened a few times now so I’m happy that it seems to work. However, I play golf twice a week (havent for last few weeks due to the weather) and wonder if I don’t take the Linaclotide on the two days a week I normally play, what impact that would have. Has anyone got experience of this please. Thanks