IBS - LINACLOTIDE

[Amb194]

Been diagnosed with IBS C since december 2019... been on linaclotide everyday since, the pain side of it has been fab as I very rarely unless I am due on my period get pains.

Just wandered what things do people have for breakfast after taking the linaclotide capsules? As I cant seem to find anything that helps everything I eat an hour after taking it I get bad diarrhoea for a couple of hours and I mean I could go about 20 times to the toilet and eventually I have to hold it in and stop going and deal with how uncomfortable it is until I no longer need to go. I have maybe 1 good week a month max where it settles and my bowel movements are fine.

Should i still be suffering from this after being on the medication for 6 months?

Thanks.

[xjrs]

I have been on Linaclotide since September 2019. After the initial settling in period it doesn't help with constipation for me but it does help with the pain. Maybe the dose you are on is a bit too strong for you? I think in the UK it is only available as 290mcg but in other countries I believe it is possible to get it half that dose. Perhaps book a phone consultation with your GP to discuss your issues. I would have thought any diarrhea/urgency should have settled by now. I was once told by a GP that I could open the capsule and put 1/2 the amount in water (when I was having symptoms when first taking it) and close the capsule again for the next dose, though this isn't the ideal way to take it, but maybe worth a try after discussing with your GP. I also take Alflorex probiotic which is helping with the pain - I got 50-60% pain reduction from the Linaclotide.

[Amb194 in reply to xjrs]

Thankyou, yeah maybe worth a phone call to speak to my gp if I can get through to them, I wonder whether theres a different medication. It's such a shame when it does help for pain but not anything else. I've wrote that post yesterday and starting my diary free now and already today been better so maybe I also need to work on my diet.

[xjrs in reply to Amb194]

Yes. That's very true. You might want to try a probiotic such as Alflorex which has been scientifically studied for IBS or Symprove before dietary measures. I've found I've been more tolerant to a wider variety of foods since taking Alflorex. Sometimes in people with IBS bad gut bacteria bugs might have the upper hand over good gut bacteria - these bad bugs may cause symptoms such as pain or disordered bowel movements.

Alternatively there is the fodmap elimination and reintroduction diet. Have you tried this? Normally guided by a dietitian but in the absence there is a lot of info on the internet about it. If you download the Monash University FODMAP app it will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities and wait 2-3 days for symptoms. I go much slower than this - only introducing a small amount of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms. I've read your microbiome can adapt to handling a new food if introduced very slowly. Ideally you want to eat as many FODMAPs as you can since they are good for your health.

[Amb194 in reply to xjrs]

Yes, when first diagnosed was told to try the fodmap so I did for a month or so and nothing happend so I just started eating what I would normally eat and within a couple weeks my pain went but saying this I didn't start the linaclotide till after trying the fodmap as was awaiting a prescription...

If any of that makes sence haha.

When first trying the fodmap I was currently going through about a 2 month flare up which got extremely bad and ended up with anti sickness tablets ect as I got really unwell from it (this was whilst trying fodmap) so I dont know what caused this to happen

[Amb194 in reply to xjrs]

Also what are probiotic? Never heard of them before

[xjrs in reply to Amb194]

It's this one:

precisionbiotics.com/uk/alf...

It's recommended by theibsnetwork.org and is available on a free two month trial on joining them for £24 annual subscription:

theibsnetwork.org/become-a-...

[Jenny3267 in reply to Amb194]

Please take care with probiotics. If you have SIBO or slow gut transit they can make you worse. This has happened to me and I’ve ended up with chronic constipation.