Hello all,after suffering IBSc (undiagnosed so labelled as IBSc) for a year now, trying lots of various meds and being hospitalised on numerous occasions I was prescribed linaclotide a couple of months back but held off on taking it as I'd had a few things switched around by my doc and I wanted to see how I got on.
Things have improved I'm eating more and feeling more healthy in general apart from my tummy. I get bad lower left hand tummy pain near my waist bone accompanied by a milder right hand pain in roughly the same spot. It keeps me up most nights and BM's are a huge struggle every day.
Does anyone have any experience of linaclotide (Constealla) for IBSc and how did it work for you?
I've got to the stage I'm nervous about changing anything or starting something new for fear of making things worse.
I currently take a half scoop of optifibre and a half sachet of laxido each night.
When I start the linaclotide I'll stop the laxido but was planning on continuing with the optifibre.
If anyone has experience with linaclotide any and all feedback and information would be massively appreciated.
Thanks for reading,
John.
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John_70
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I found linaclotide far too strong and I couldn't tolerate it. Felt ill with terrible cramps till lunchtime and had to stop it. But the specialist did prescribe the very highest dose. I now take recommended Milk of Magnesia which I buy on line as bottles are 350ml and adjust the dose accordingly.
Great info thank you, I've seen that it can make some peoples cramps worse and was hesitant to start it for that reason. The last thing I need is making anything worse. Thank you for taking the time to respond, much appreciated 🙏
I take 290mc daily from the gastroenterologist recommend, following endoscopy. It didnt help my pain but does seem to normalise bowel functionality. I also have diverticulitis and gastritis and im due to see if a neurological team for referred pain.
I've read as much about it and some of the comments indicated it actually made their pain worse. It may be worth the trade off if it restores normal function, thank you!
If it restores function because like with all medication, it seems to affect people in different ways. I understand its an expensive drug so NHS foots most of the bill but i dont believe its a cure. Best wishes on whatever you decide to do.
Linaclotide doesn't exert its fullest pain relieving effects until week 10 of taking it. At this point it reduced my pain by 50%-60%. Unfortunately it didn't help me with BMs and I use dietary measures for this instead. With Optifibre I found that I had to be careful with the amount since it can be gas forming. After 10 weeks of Linaclotide, I also added in Alflorex probiotic. That reduced my pain to zero after 1 week and I became more tolerant to a wider range of foods (though some intolerances still remain). I tend to get pain back again if I eat too much of a particular food or if I am challenging with new foods, until my body gets used to them or I need to continue to eliminate them. I now remain on both Linaclotide and the Alforex.
I've read it can take a while for the full effects and benefits, what troubles me more than any cramping is will I still be able to manage a BM during this period of adjustment? I also have alflorex but stopped them a little while ago as my tummy became so sensitive I couldn't tolerate virtually anything. I've tried slippery elm for the first time today too, I'm hoping this reduces bloating pain and discomfort and maybe it might be a good combination with linaclotide, alflorex and optifibre or do you think all that maybe a little too much? I'm desperately trying to improve my motility and food intake volume so I can get some sort of normality back in my life. Do you have any experience with slippery elm? I'll start these things one at a time with a few days in between so as not to bombard my digestive system. Thank you for taking the time to share your experience with it, it's very much appreciated 😊
Yes, it's best to try only one new thing at a time and also keep a diary of any reactions (this also relates to food). This way you can specifically keep track of what is helping and what isn't, otherwise if you have a reaction, you won't know what is causing it.
I tried slippery elm a while ago, but this was more for reflux. I didn't continue with it, so it wasn't worthwhile for me, but everyone is different.
Regarding constipation (and keeping things moving) and bloating you may find my two (xjrs) answers to the below post helpful:
In addition to that, there is the gut/brain communication side of things. There is the Nerva gut directed hypnotherapy app. Also any form of meditative or mindfulness practice.
I do keep a diary already to keep a record of what I've eaten at what time etc and found it useful for eliminating problem foods. I'll try the slippery elm for a few days and if there's no improvement I'll give it a miss too. I've heard about and signed up with nerva and get the newsletter but have been reluctant to try it, does it actually help? I know my toilet anxiety is now a factor and may be the main problem now just I've spent so much money trying to get things back on track I don't want to pursue what could be another dead end. Oh one last bit of advice if possible, it says to take linaclotide on a morning 30 mins before eating but I've never ate breakfast and always ate late in the day usually around 7pm, should I hold off taking it until that time or still take it on a morning regardless?
Thanks for all the fantastic information it's very much appreciated.
I did find the audios that come with Nerva extremely relaxing. You could also try some free guided meditation downloads from the internet.
I think the 30 mins before breakfast is normally around the time that a bowel movement is triggered, which is why they recommend then. You might need to try different times and see what works best for you.
I used to get my IBS pain overnight / early hours of the morning. Since Linaclotide didn't trigger a BM for me, I take mine just before bedtime on an empty stomach, since this is the nearest time to when I used to get the pain.
If you still have a BM in the morning, you could try first thing in the morning. Could you even try a little breakfast and have the pill 1/2 hr before? Breakfast is a good thing to have but you know your boundaries.
I know from reading online that other people have tried different times for Linaclotide to see what works best for them.
I might give the Nerva app a go to see if it helps, thank you. Night time is usually my worst time for pain too and I'm always up in the early hours, mornings are my usual time for BM's so maybe I could take it in the hours leading up to me getting up, at the minute that's any time from 4 to 5am onwards but sometimes I'm up with pain as early as 2am and spend the entire night on and off the toilet trying to go. If it reduces pain and induces movements maybe it might be the best time for me too or I could just take it before I eat but I'm worried it might then start to cause me to need the toilet as I'm going to sleep. It's all such a midfield at times. I think I should perhaps try it on the morning after a bm so I can have a small amount of rice crispies or something like it. I've tried a lot of different approaches and at times just feel like trying to forget there's a problem and just eat what I want when I want, how it used to be. Thanks again for the excellent info it's all very much appreciated.
Only one small thing to add but as a person who didn't used to eat breakfast, I now do....it does help stimulate a morning bowel movement, together with a hot drink.
I take Linoclotide every morning. In the UK they only prescribe 290micrograms which I find far too strong, so I open the capsule and make a line of the powder and split it into four, just taking a qtr (approx 70microgms) does the trick, although it can still cause a bit of diarrea, it wares off after a few visits to the loo. It cn take a few hours to work and make sure you take it at least half an hour before food. If it doesn't work, try upping the dose gradually until it does. Hope this helps.
I have the 290 microgram capsules so I think when I try it I will do as you are and split it into 4 and see how I get on. Diarrhoea isn't ideal but I think I'd rather have that than constipation. I don't usually eat each day until around 7pm which is my first meal, should I hold off taking it into on the evening as it says to take on a morning on an empty stomach 30 mins before food but I've never eaten on a morning and rarely through the day. Thank you for the feedback it's so very much appreciated 🙏
Hi again, I take mine in the morning btween 8-8.30, it takes about 2=3 hourd to work on me, I eat some toast about 11am and that starts my gut working. I think eating some thing gets the gut moving. If you take it at night it may work whilst you're trying to sleep.
Hi edwangy,I haven't tried the linaclotide yet but plan on doing so later tonight or in the morning. You said in your previous reply that you empty the capsule and split it into 4 smaller doses, how do you then take each dose do you just add it to water or fruit juice?
I'm just a little dubious about initially taking the full 290 microgram dose given it can be quite strong from some of the feedback I've had including from yourself.
Hi John, I just make a line of the powder with a bit of card, then cut it into 4, then just dab it on the end of my finger. Make sure you drink plenty of fluids before you take it, I drink 2 cups of tea when I've taken it. It takes about 2-3 hours to work on me, eating something gets the bowel moving
Thanks for the advice, I'd rather try it in the smaller dose first and build up if necessary. I decided to hold off until Monday as my tummys not in great shape at the minute and I don't fancy any more trips up to the hospital after calling NHS 24 for advice and that happening on so many occasions over weekends. I'll update this next week and let you know how I got on. Many thanks 😊
Hi Edwangy sorry for the late response I've not been doing so good this last week or so.
So after much worry and procrastination I tried the linaclotide yesterday for the first time opening the capsule and halving the contents as best I could and taking what I would say was the larger half.
I had some scrambled egg with toast and a slice of bacon then had an extremely loose movement around an hour to an hour and a half after eating, though I still had to push to move my bowel.
I had the linaclotide again today at 10.30am and had some home made lentil soul around 12pm but nothings happened today, just cramping.
Is this normal to have days where nothing happens?
I've not been eating lots leading up to yesterday yet had quite a large loose BM then I ate a lot more than usual yesterday without overdoing it and nothings happened today and I have a bad pain in my lower left tummy which is the spot that usually aches but is really painful today and also new pain in my right between my ribcage and my hip going into my hip bone on both left and right.
Tomorrow will be day 3 and I'm already worried about eating any more today, is it normal to expect days without a BM with constella/linaclotide and do you think it may be that I had a large-ish loose movement yesterday and I've possibly cleared things through that nothings happening today?
It's all new and worrying territory for me so any advice would be massively appreciated,
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