Stopped taking Linaclotide (Constella/Linzess) for chronic (idiopathic) constipation, a new medicine for me to try.

[Meleber]

So I finally had my consult ('second opinion') in Leuven (Belgium) at the gastroenterology unit of the university hospital, after I did see a specialist at the gastroenterology unit of the university hospital in Groningen (The Netherlands) beginning this year.

The specialist I spoke with also doesn't think that my bowel problems, chronic constipation, in my right lower abdomen, is caused by pseudo-obstruction (CIPO).

Therefore, the first working diagnosis from 2019 still stands, a functional bowel disorder (FGID) leading to chronic constipation in the first part of the colon, the ceacum in my case. I think the nowadays more appropriate naming is a disorder of the gut-brain interaction.

I told the specialistg in Leuven that I use bisacodyl 5mg, 3-4 times daily to keep the chyme/bowel content flowing. He said that I should better use linaclotide, a secretagogue (Constella/Linzess) (better transit/may lower abdominal pain/stimulates secretion of chloride/bicarbonate/water into the intestinal lumen) on a daily basis and maybe 1-3 times during the week bisacodyl 5mg, if still necessary.

Unfortunately linaclotide is only available in one dose, 290mcg capsules in the Netherlands. After my consult with a GP and the pharmacist yesterday, I will try to open the capsule and divide the content over smaller capsules so I can start with a somewhat lower dose.

Lower dosages than 290mcg linaclotide (145mcg and 72mcg) for chronic constipation have already been approved by the FDA in the USA.

[Meleber]

Took the first capsule with a minimal dosage of linaclotide this morning. About 120 minutes later I had a first bm and about 180 minutes later a second, watery bm. Bit the same effect as with the bisacodyl 5mg I used to take.

Not sure how it will feel during the rest of the day since I only can take one dose a day. When using bisacodyl I used to take 3 or 4 tablets of 5mg each during the day to keep my small intestine 'clean', pushing the chyme/bowel content to the end of the colon, of course also resulting in multiple visits to the bathroom. But this regime did help somewhat.

[Meleber in reply to Meleber]

Not happy at all with the effect of one capsule with a low dosage. Yes, it helps in first instance but when I start eating the symptoms like pain, distension and sometimes nausea gradually appear again. My symptoms/problems are located in the right lower abdomen. So I needed to take extra bisacody during the rest of the day too.

That is what me made think that it might not be a functional problem, the first working diagnosis, but still an underlying anatomical anomaly with this part of my bowel, the caecum/ascending colon. I will contact my GP again to ask for a referral to a gastroenterology surgeon to discuss this idea.

So yes, I can use linaclotide but I need to take a low dosage multiple times during the day and will try this regime as from tomorrow. Today I will just continue with my old friend bisacodyl.

[xjrs in reply to Meleber]

I have been taking Constella for a while now. For me it helps more with the pain rather than BMs, but everyone is different. I am aware, though, that the full pain effects aren't felt until after week 10. I am not sure if this also applies to the constipation side. I take mine as one capsule before bedtime at night, since my pain is more night time/early morning. Hope it improves for you in time.

[Meleber in reply to Meleber]

Made a huge mistake, miscalculation 🫢😱. My scale only can weigh milligrams and not micrograms, a huge difference of course. So I can't do it myself, the weighing, but can open the capsule and try to divide/split the content using an new empty capsule. So instead of taking 73mcg yesterday morning I probably took 150mcg because I think the other half of the content is still in the original capsule.

[Angie11]

Hi, I’ve taken constella off and on for years. At first it took about 7 days before it started to work. 290 dose. Somedays it doesn’t work , I think it depends on how constipated I am.

You might want to take it every other day if you think that dose is too strong, my gastroenterologist said it was okay to do that.

Like you we only have 290 strength here in Ireland.

Hope it works well for you.

[Rumours]

Hi Meleber I have a diagnosis of IBS/C and slow transit colon and was prescribed Linaclotide which I tried for a month at 290mcg however it had no effect apart from severe bloating so have gone back to Bisocodyl 10mg and 2mg Prucalopride (Resolor) at night I don’t know if that is available in Belgium. I still struggle with constipation and don’t like taking stimulant laxatives every day but if I don’t take them I don’t go - maybe you need to try different combinations of different medications to see what works for you - it’s all trial and error and very debilitating and demoralising. Otherwise go back to your Gastro for further advice - good luck and let us know how you get on

[Bicester in reply to Rumours]

Hi

You mention severe bloating after taking Linaclotide. Could I ask how long did this last for? My daughter had them for two weeks but they caused severe bloating. Dr then put her on Prucalopride. She’s getting extreme bloating with these too. She’s had to come off them. How long did the bloating last for please thank you.

[Meleber]

Linaclotide helps treating my symptoms somewhat but for me the effect it has in alleviating symptoms isn't much different than when using bisacodyl, so at the moment I don't see why I should continue to use linaclotide. I'll go back to the GP to discuss it but will also ask for a referral to an experienced, senior gastrointestinal surgeon. I would like to discuss underlying congential anomalies as possible cause of my chronic problems with the intestines, located in my right lower abdomen. In the past a Meckel's diverticulum was already surgically removed, without solving the symptoms, so there could be other congential anomalies in my abdomen causing the daily partial obstructive symptoms I suffer from (pain, nausea, distension, some 100 minutes after I did eat a little).

[Meleber in reply to Meleber]

I've received an invitation for a consult with a gastrointestinal surgeon 🙂

Besides, I've stopped taking linaclotide because in my situation it wasn't more effective than bisacodyl. I try to split the very little tablet bisacodyl 5mg in half whith a very sharp litte knife and put the two pieces in seperate empty capsules so it will dissolve in the bowel and not already will be made useless in the stomach by the acid. I do take a small amount of bisacodyl because one tablet of 5mg gives me too much side effects. I do need to take it multiple times daily to make sure my bowel won't get 'blocked' halfways with all the consequences.

[Meleber in reply to Meleber]

Surgeon couldn't help me. But to update my medical situation, the rheumatologists in Leuven I did see about a month ago told me based on my all over the body symptoms, that I probably have Sjögren's disease, that might also have led to my function bowel problems / dysmotility. In about 3 weeks I have a new appointment at the university hospital of Leuven, Belgium to speak with a specialist docter for Sjögren's disease / also known as Sjögren's syndrome. Already had a Schirmer test for my dry eyes.

[Meleber in reply to Meleber]

I've been in Leuven again to see the rheumatologist. After the additional tests, they concluded that it is not Sjögren's. So still the functional gastrointestinal disorder (FGID) as working diagnosis, probably IBS C, nowadays named as a disorder of the gut-brain interaction (DGBI) mayoclinicproceedings.org/a... . It's just that I still can't settle with this diagnosis for the moment, also because it's a working diagnosis. For me it feels intuitively that there is still something hiding in my body that needs to, wants to be found, the causative factor. Curable or not, I'm not giving up yet my quest. Too curious, tenacious and yes, maybe too willful to 😉.

[Meleber in reply to Meleber]

Addition, it's officially IBS C now, according to the gastroenterologists of the university hospital Leuven (UZ Leuven, Belgium). In first instance they said probably IBS but later, after I did ask some additional questions and after they also had a discussion with the rheumatologists I did see, they have written IBS C as diagnose in their final report, without the words probably or working diagnosis.