linaclotide: ive been prescribed linaclotide... - IBS Network

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linaclotide

edwangy profile image
18 Replies

ive been prescribed linaclotide for my slow bowel transit and IBS C, anybody had any experience with this? Haven't taken it yet, does it help with pain?

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edwangy
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18 Replies
xjrs profile image
xjrs

I take this. It reduced my pain by 50%-60%. The full pain effects aren't felt until around week 10. When I took Alflorex on top of the Linactlotide the pain came down considerably more.

edwangy profile image
edwangy in reply toxjrs

Does it cause diarrea or any other side effects? do you have IBS C?

xjrs profile image
xjrs in reply toedwangy

Yes. I have IBS C. I don't remember it causing diarrhea specifically. Although I think my BMs were unpredictable until it settled. I've heard that it can cause diarrhea initially until your body gets used to it. Though everyone's reaction can be different.

edwangy profile image
edwangy in reply toxjrs

Thanks for that. What dose do you take? Can it just be taken as required? It's just that I've been reading reviews and there are some who have bad side effects with this.

xjrs profile image
xjrs

I take 290mcg. I tried it at different times. I think it says to take so many minutes before breakfast, though can't really remember. I think when I took it around 30 mins before a meal, I wouldn't get triggered for a BM for 1.5-2 hours. Since my pain is mostly at night, I now take it on an empty stomach before bed time. For me it mainly works on the pain, but didn't really help with the constipation side. I use 30 drops of ginger extract in a little water before bedtime and a very high fibre diet for motility.

edwangy profile image
edwangy in reply toxjrs

Do you know how it works for pain? It's supposed to be for constipation, softening the faeces. I have slow transit and narrowing sigmoid, so my stools are hard and dry because too much fluid is being reabsorbed in the colon, I think the pain is from powerful contractions of the colon trying to push things through. My pain is constant, it varies in severity but keeps me awake at night so I'm always exhausted, if I could sleep I could bare it.

xjrs profile image
xjrs in reply toedwangy

The pain is probably due to visceral hypersensitivity, which is to do with the brain/gut connection. The brain picking up normal activity of the bowel as pain and the bowel nerves can also be overly sensitised for instance if you have some dominant bad bugs, which was true in my case. This means you can get a combination of overly sensitive nerves in the bowel, coupled with the brain picking these signals up as pain, which is a double whammy effect. The hypersensitivity can be caused by stressful life events even going back to childhood. This is why apps such as Nerva have come out, working on the brain to gut connection. Lincalotide works the other way, by calming the nerves in the intestines so they don't send so many signals back to the brain.

edwangy profile image
edwangy in reply toxjrs

Yes, I agree. I have diverticular disease as well and I think this causes over sensitive nerves causing my brain to interpret intestinal movement as pain. I'm hoping linaclotide will help this. I've tried probiotics and they don't agree with me, I don't think I need them as I have a healthy varied diet and make sure I have at least 20-25g of fibre per day.

edwangy profile image
edwangy in reply toxjrs

Hi again sorry to bother you but can you tell me how long before it helped you with the pain? I took my first dose of 290mcg this morning and it worked within an hour for the constipation, now it's just pain at the moment.

xjrs profile image
xjrs in reply toedwangy

I can't remember, but it can take up to 10 weeks for full pain effects. Glad it's helping you with the constipation.

edwangy profile image
edwangy in reply toxjrs

Thanks for that

Gypaetus profile image
Gypaetus

Hi - I'm new to the forum. Been suffering with IBS-C for quite a few years now. The cramps, more recently (as I've got older) have really got painful. I've been hypersensitive to pain for as long as I can remember. Not on any prescribed meds, but when I have a flare up (like now) I get herbs from my highly qualified and experienced medical herbalist. So far, thank goodness, they've worked, usually quite quickly. I don't know what herbs he uses, but I guess there's an anti-spasmodic in there somewhere, and an analgesic. I recommend exploring this possible avenue, if allopathic medicine doesn't help, because I've not had any side effects from the herbs, which is a big plus.

edwangy profile image
edwangy in reply toGypaetus

Please ask him what herbs he uses next time you see him and I'll give them a try. Do they help with your pain?

Gypaetus profile image
Gypaetus in reply toedwangy

I'll ask - but usually I don't, preferring to trust him - I've known him for nearly forty years!

The mixture (tincture of several herbs) helps with IBS-C: that is, it normalises gut function. One it kicks in (for new users, probably a week or two, but for habituated users usually only a few days) the pain goes away.

I've been having a horrible, painful flare up for the last week or so - and am presently waiting for my herbs to be delivered, hopefully today. We do our consultation by phone nowdays, and he then posts the herbs out to me. I always seem to leave it too late, before calling him - so consequently spend a day or two in pain waiting for the post!

edwangy profile image
edwangy in reply toGypaetus

I only want to know so I can try them

Gypaetus profile image
Gypaetus in reply toedwangy

Of course - I do understand. But you really need a properly qualified Medical Herbalist, with lots of experience in combining herbs. It isn't just a matter of buying separate herbs and trying them out. I mean, you could do that, but they probably wouldn't help, as it's a synergistic remedy you need.

Are you in the UK? I could send you a link to my herbalist's website, if you like? And then, if you wanted to, you could contact him and do a phone consultation.

edwangy profile image
edwangy in reply toGypaetus

No thanks

Gypaetus profile image
Gypaetus

OK.

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