Care to share Constella (linaclotide) experiences?
Posted , 7 users are following.
Hi, am interested to hear from other constella users but also hope my story helps others debating about whether to try it.
Some background: have suffered from constipation most of my adult life ( now in my 50s) and tried all the usual stuff, Fybogel, OTC drugs, supplements, senna, diets etc etc etc and nothing seemed to help. As an anxiety sufferer too, being constipated seems to be my natural state! Couldn't ever go without some form of help. I have some really bad flare ups where I just can't go without straining no matter what without aggressive combos of senna, stool softeners, syrup of figs etc.
Two colonoscopies over the years both fine. GI Cons wanted me to try Constella a couple of years ago but reading reviews put me off. I'm also on long term lansoprazole for non ulcer dyspepsia so wasn't keen to be on another potentially lifelong drug. However after last flare up I decided to give it a go. I was prescribed 290 dose, the lower dose doesn't seem to be available here in UK?Initially not good with diarrhoea and slight loss of control so I gave up again for a month. Then thought t I'd experiment to lower the dose. I started breaking up the capsule and would just take about a third of the powder in a small glass of water before breakfast, after a few days this was working well, though since then I've upped to half a capsule. Not very scientific I grant you but effectively now the same as taking a capsule every other day ( tried that but dose too much).
I can now now go comfortably without taking any other meds or supplements other than a single stool softener every day. Other than an occasional cramping and gurgling when I need to go it's pretty good indeed. So what's my problem? Well the side effect for me is bloating! Worse than I ever had with normal constipation!
I look, and feel, totally inflated round my stomach and some days my bra is sooo tight. It isn't constant but there more often than not. I had a CT scan during my latest flare up which was fine so no concerns about other organs. So it's down to the bowels and the Constella. Abdominal distension is certainly given as a recognised side effect. Can anyone on the drug relate to this? I wonder did the bloating put people off continuing with the drug?
Its so so frustrating as the drug clearly does work for me, as long as I half the dose, but the bloating is annoying. I'm continuing for now as the joy of not having to take anything else to go daily is obviously great,but if anyone can suggest ways to manage the bloat I'd be interested. My GI doc was unconcerned and just said it was great I was going without laxitives for the first time in years. I'm also really annoyed I can just get the 145 mcg dose. It only seems to be in US.
0 likes, 8 replies
pippa58442 Shinygal
Posted
Perhaps go back to the doctor and ask if there is a different medication that works as well but doesn't cause bloating.
Shinygal pippa58442
Posted
Unfortunately Constella is a fairly unique drug in terms of treatment for constipation. Not sure there is an alternative other than going back to laxatives etc
pippa58442 Shinygal
Posted
I would go back on the laxatives and stop the Constella if it stops the bloating. I don't think I could put up with bloating. Ask your doctor if there is an alternative if you are unsure.
pat35683 Shinygal
Posted
Hello Shinygal,
First congratulations! I also take constella.It doesn't work for me on it's own whether taken before or after a meal. Then I read a post on some site suggesting that you can try combining it with a laxative and it works for me if taken with a hot drink straight after dinner together with large doses of dulcolax pico liquid. However, the output is diarrhoea and sometimes cramping which means I'm up most of the night as the output is in stages over several hours. I take the combination every third evening so at least I'm not up every night. Like you with the bloating, this is better than the alternative!
.I have a long colon and diagnosed slow transit constipation so I'm used to not performing every day. That said, I would like to go more frequently so I'll experiment with your regime. I tried taking a capsule daily and combining it with the pico liquid on the third night but the effect was the same as just taking the capsule with the liquid on the third night so that's what I do. No point taking mediction unless it's having an effect. Incidentally, I also have bloating but that was the case before I took constella. I don't think contella has increased the bloating but to me it would be a price worth paying. That's a personal decision of course.
Good luck and I hope this is of some interest even if I don't have practical suggestion about the bloating.
Best wishes,
Pat
Shinygal pat35683
Posted
Thanks Pat, always interesting to hear other experiences of the drug. It seems to work so differently for everyone and in Scotland (also maybe rest of UK?) it is only being prescribed on advice of GI Consultants so I don't feel there aren't that many users posting experiences yet. My GP only has 3 other folk in the practice on the drug. One gave it up due to side effect of diarrhoea, one loves it and the other just said it had no effect at all. Funnily enough I've found it a bit less reliable the last few days but could just be a hangover from eating a bit differently over the Xmas hols and a bit of anxiety over some family issues going on just now. I don't think it's a wonder drug by any means, more just a different weapon in your armoury :-/
nisha06753 Shinygal
Posted
Hi Shinygal! I recently started constella because after 4 years of severe IBS with no known cause i started getting constipation in February (i was usually diarrhoea). its like constipation and forced, it feels like my bowel is both really tight and really lazy. like it wont relax to let stools out but its also not moving things along? ive have to manually remove them. Ive only been taking it a week and i had to call into work sick because it puts me completely out of action when i take it. he told me to take it every other day but when i dont take it i cant poop and have to remove it manually and when i do take it im having to go to the toilet 4/5 times and cant work or leave my house. i called him to discuss and he told me to stop taking it and that he cant do anything medically. he bascially told me to just deal with it. take laxatives when im constipated and imodium when i have diarrhoea. its just so unhelpful and i have no control over anything if im just randomly taking laxatives and impdium. And! that can make a lazy bowel worse so idk what hes on about
how do you all manage work and uni and all that? im only 20 and i already feel like my life isnt worth living. im at a complete loss. does anyone have any advice??? I had to leave school at 17 and ive spent these last years trying to get help. and ive gotten no help.
Shinygal nisha06753
Edited
hey Nisha, sorry you are having such a rotten time, you are so young but there will be a better solution for you I suspect. Have you actually seen a consultant or is it just your GP who is treating you. I would insist on a referral to a GI specialist if you haven't been seen already. Since Constella was launched there are at least 2 other new drugs that treat the same thing and one of those might be better. Also have you tried dietary changes, more fruit and veg, loads more water etc? Those of us with lifelong IBS will always say it can be a long haul of trial and error. Modern diets aren't great so do some googling into IBS diets and do a bit of experimenting. You do seem to be struggling through though so in terms of getting through this in the short term you need to go back to your GP and insist on more support and a consultant opinion. Best wishes, hope you get some relief soon.
sam18386 Shinygal
Posted
hi shinygal, tell me about constipation! i have been in hospital with it! agony isn't it? i think doctors see ibs and think diarrhoea. i was told off by my doctor the other week because my bowel gets so sore! i think you should try buscopan but speak to your chemist 1st then try ginger on top. ask to see a dietitian, ask for bloods and insist on a doctors appointment. good luck. 🤞👎😿😁