Linaclotide experience?

[XDjames]

There are some old posts on this but folk may not notice additions so excuse a new thread.

I started taking Linaclotide (L) last Friday. I'm more IBS-D than C but if I get blocked up it causes me so many problems so I try to stay loose.

I found that after a few days I was getting very bubbly guts, with a lot of wind and by the end of the next day very watery (and windy) diarrhoea. So I dropped to alternate days and found the second day I got blocked up, even with other measures.

I think this is too much for me and it destabilises me (right now it's pretty horrific) so I'll take a break.

Anyone have not so good experiences with it?

[xjrs]

I've been on Linaclotide for some time now. I think initially it may have caused a bit of upset, but then settled. Unlike for others, for me, it doesn't help with the constipation, but helped with the pain, reducing it by 50%-60%. The full pain effects aren't felt until 10-12 weeks. Not sure if it is worth your while persisting to see if it settles e.g. for a couple of weeks? Depends on whether you can put up with it. If you are truely D, this may not be for you. However, since you mention you have C as well, could it be that you are really C with overflow diarrhoea and you do need to work on the C? Hard to say. Is your D urgent and seeps out without warning often? That may be an indicator of overflow D.

Also, did any doctors or gastros say that you had backed up stool when they examined you (indicating C more)?

How did you get on with the heated pad?

[XDjames in reply to xjrs]

XJRS, the effect was pretty severe; bubbles and wind non-stop. I just couldn't handle it.

I'm now trying to stabilise things but it's hard. The pain is constant, often agony, variable relief with BM. I am now unable to sleep without a pill, although I can usually get off to sleep naturally for 1-3 hours until about 1AM. It's not good as my head is a mess and I'm very weak, just about hanging on TBH, getting some dark thoughts.

I don't think I have overflow: I had that before, so maybe Linaclotide is for consultation with IBS rather then the reverse.

Theopne I bought was too big and restructive. I got a smaller one for period pain, irises a compact battery and is more comfortable, helps a bit.

[xjrs in reply to XDjames]

So sorry to hear that.

What have hospital investigations uncovered regarding the root cause of the pain? I seem to remember that yours is a more complex case - did you mention prior surgery or colitis or something? They should at least be able to narrow it down to visceral hypersensitivity or something physical about your colon.

Does your local NHS Trust offer capsule endoscopy (pill camera)?

Have you been referred to pain management?

[XDjames in reply to xjrs]

They can't identify the cause.

They offer pill endoscopy -at least privately- but that's really for small bowel, my issue seems to be colon (but I'm not sure, although the areas of the pain fit colon location). The procedure requires two early morning visits with the full 3 days of diet and then clearout. That was traumatic last time, not sure I can endure that twice more, and there is a risk of the cam getting stuck. The first one is a soluble same size dummy to check, and the 13-ish mm scope could not get through the anastomosis (which they mistook for hepatic flexure as they didn't realise I'd had a hemicolectomy). So it's a real risk.

Yes, referred to pain team, waiting another four weeks, or I could shortcut a bit via private. I asked here about the lignocaine infusion, seems dubious..

[xjrs in reply to XDjames]

Wondering if the diarrhoea and the pain are related to the hemicolectomy. There seems to be some mention of adhesions. Complications can also include gastric hernia. A relative of mine had gastric hernia complication from this type of surgery and the nurse initially put this down to a bout of gastroenteritis, which was wholly untrue.

[XDjames in reply to xjrs]

That was always a possibility, but they keep saying 'nothing to see here'. Nothing on the CT scan. Nobody has suggested anything like that. One thing was suggested was go into the abdomen via keyhole and rummage around outside the gut. Very risky in may respects and that was not even mentioned in the followup letter from my private consultant.

...Actually a huge problem is wind. I'd uncontrollable and quadruples the pain. I'm so desperate to get it out. I've tried so many things to stop it, nothing works.

[xjrs]

The most promising research I've seen in this area is here (all links about the same study):

nutritioninsight.com/news/i...

quadram.ac.uk/1-8m-study-in....

nottinghambrc.nihr.ac.uk/ab...

Not sure if it is worthwhile contacting them to find out about their human trials and whether you can get involved. Just a thought.

[XDjames in reply to xjrs]

thanks!

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I was originally prescribed linaclotide for my IBS-C which worked very well, but found that after taking Alflorex- a very good probiotic- the correction of my dysbiotic microbiome, resulted in me having severe diarrhoea with the Linaclotide which I had to stop. Its interesting that studies from Japan have shown that Bifidobacteria help reduce constipation in the over 65’s. I think finding a good, reliable probiotic can sometimes correct the intractability of the constipation