Linacotide

[AfricanSheila]

Has anyone been prescribed linacotide (constella)? If so how did you get on with side effects?

[Huston]

Yes was prescribed this and resulted in explosively loose bowels everyday for a fortnight .far to strong for my needs so stopped using it .however if IBSC gets really bad a useful product to get things moving again !

[AfricanSheila in reply to Huston]

Thanks - I haven't even got IBS-C - so I'm not suer why I've been prescribed it!

[Huston in reply to Huston]

Well it is specifically formulated for people who suffer from constipation predominant IBS sounds like you need to speak to your doctor !

[AfricanSheila in reply to Huston]

A consultant prescribed it - I wonder if he was listening?????

[Huston in reply to AfricanSheila]

Probably not ! Constella works by stimulating your gut to absorb more water to aid transition and soften stools . Ok for IBSC but not so good for IBSD which I imagine would make it worse . Just look it up on the net and talk to your GP with the evidence if you can't get to see the consultant . All part of life's rich pageant for us IBSERS !

[polly2000]

Got terrible pain which I couldn't stand to gave it up - I take Prucalorpride and VSL3 and Oxypowder - both of which I have to buy myself.

[AfricanSheila in reply to polly2000]

I had Prucalorpride and came out in a rash all over. Currently taking VSL - but what is oxypowder? Sounds interesting! What dose of VSL do you take?

[polly2000 in reply to AfricanSheila]

Sorry to hear the prucalorpride had that effect - haven't had any side effect it's just got less effective though since first use. Oxypowder is a form of magnesium and oxygen in capsule form in which the magnesium is not absorbed by the body but it helps to keep bowel flowing - dose is from 1 capsule a day up to five. It can give loose stools on higher doses but it helps my bowel to keep working which it doesn't otherwise. Finchley Clinic sell it and have lots of similar products in case one doesn't suit you can try another. They offer loads of advice too on website. I take two VSL a day when I can afford it and this helps me a let too. Good luck

[AfricanSheila in reply to polly2000]

Been away so sorry not to get back to thank you. How soon did you notice the VSL helping?

[polly2000 in reply to AfricanSheila]

Took two weeks for the VSL to start working - but needed to increase it to two sachets a day to really help. Good luck

[AfricanSheila in reply to polly2000]

Thanks for your help. What difference did taking 2 sachets make?

[polly2000 in reply to AfricanSheila]

big difference - less bloating and discomfort, easier to to loo - still have to take oxypowder due to severe constipation but vsl helped me cut down visits to loo to just once in morning instead of several times - i had to build up to two sachets over two weeks but it really helps

[AfricanSheila in reply to polly2000]

You've been very helpful - thank you - 2 more questions - did you build up to 2 sachets by taking half a sachet at a time? And did you do this on medical advice or because you worked it out yourself?

[polly2000 in reply to AfricanSheila]

Hi African Sheila, I took one sachet VSL3 for two weeks then after that two sachets - a nutritionist (private not NHS) recommended it. Asked my GP if she could prescribe as it is expensive - she tried but not allowed to - has to come from hospital consultant which i hope mayhappen in future. I also have regular colonics which I find really help - I know this is controversial but it really works for me and helps a lot when I'm feeling crap. I try to stick to sugar free diet and as much raw and vegetable juices as I can which again suits me but if I do fall off and eat rubbish then getting back to juicing and eating mostly raw and colonics really helps me feel much better. Good luck - I know its all very individual. I've also heard really good reports of Mayr Clinic in Austria and hippocrates institute in states if you can afford these - I can't at present but Mayr might be possible in future as it's not completely expensive for treatments - just hotel costs can i think be a problem

[AfricanSheila in reply to polly2000]

Thanks again. I was suggested VSL by a consultant - but still couldn't get it on prescription even though he's proved by tests that I've got a deficiency of gut bacteria!

[polly2000 in reply to AfricanSheila]

I think it's really bad - sometimes you get really expensive useless meds on prescription or treatments on nhs and other ones which are often cheaper and more effective you can't get - it's crazy but good luck with it all - i'm still w aiting for referral after a year and all the tests as the hospital can't even put me on waiting list - tests having identified the specialist i need to see - one recommended a colostomy which thank god i refused as more tests showed it wouldn't have helped but i think off all the poor people who are really desperate and at wits end and might take this option then find it doesn't help or even makes things worse.

all the best

[AfricanSheila in reply to polly2000]

Yes - I've had loads of meds which made me worse and were prescribed with no clinical evidence at all!

[Pat1 in reply to polly2000]

Hi polly200 I asked the wrong person the question. How much Oxypowder do you take and do you take daily? I find sometimes 2 works but often need more. Also do you take it daily? I do as I can't go comfortably otherwise.

[Pat1 in reply to polly2000]

I have also used Prucalopride but had to pay privately. About £90 a month. I now only use the oxy powder and highly recommend it if you have constipation. Loose stools is better than not going and a fraction of the price of Prucalopride.

[AfricanSheila in reply to Pat1]

I had an allergic reaction to it - so that's out now. I did get it on the NHS though.

[Pat1 in reply to AfricanSheila]

With regards to the Oxypowder, how many do you take and do you take it daily. I find that sometimes 2 is enough but often not. Also do you take at bedtime or early morning?

[Di-Mc in reply to polly2000]

Hi Polly

I have also been prescribed Constella......took it for two days, first day went like a rocket, thankfully was at home at time....second day stomach was like a balloon and I felt sick and rumbled all day and felt generally unwell but nothing happened.......I had a hectic week ahead so stopped taking but consultant wants me to try again.......I'm not sure what to do, may try again if I can find a time when I don't have to be out and about so much.

The Oxypowder sounds interesting, I started taking Magnesium tablets recently too but just plain Magnesium as I heard that so many of us are lacking in it which causes no end of problems, including the bowel and also migraines which I also get.

Good luck all. x

[PatV]

I use Movicol which is brought to me from UK (equivalent to Miralax in US--which triggers my ab pain)!