What to blame?

[krazy-girl]

Has anyone gone on cholestyramine for the itch of PBC and then had trouble with it changing your bowel habits? Since my recent increase of the cholestyramine things are different and I don't know if its the medicine or just the ibs I also have.

[butterflyEi]

Hi krazy-girl

I started Questran (cholestyramine) last year and found it left me very bloated so I asked for Questran Light instead and found it better. I have a high fibre diet but when my bowels are troublesome I eat nuts and organic undyed dried apricots which get me going.

If you know what triggers your IBS could that be causing the problem. Have you been tested for trigger foods?

keep well

best wishes

[Hidden in reply to butterflyEi]

Helloo butterflyEi.

Doesn't Questran Light contain artificial sweeteners? I seem to recall checking the patient info leaflet quite some time ago and I think I'm right in saying this can upset the bowels.

Pre-PBC diagnosis I tried to avoid artificial sweeteners as I didn't deem them to be, well natural. I loathed the taste of the saccharin anyway. Then it seemed to be replaced by aspartame but it's not fully known if this can be a problem. I prefer to leave these things out and that is my 3rd (the first 2 have been cited on my reply to the poster) why I haven't yet resorted to asking for anything for the itch.

[butterflyEi in reply to Hidden]

Hi Hidden

I see in your answer to @crazy-girl you have mentioned diarrhoea as a side effect of colestytramine - this is something I have never had - thankfully

To answer your question, and if my memory serves me right we have had a similar conversation before, yes Questran Light contains the dreaded aspartame - however for me it is a trade off, when I first started with colestyramine I had Questran which made me feel very uncomfortable in several different ways but no diarrhoea. For me personally the so called itch of PBC was not an itch but a deep sword fight of many cutlasses tearing away internally sharply intruding on my muscles, I also get a burning sensation which comes with the known prickles. Needless to say the impact on my daily and nightly living was huge.

I have been fortunate to be included in a study by Perspectum Diagnostics and have had to MRI scans a year apart. In 2016 my liver could be seen to be inflamed, in February this year I returned and following a change in diet and exercise regimen I was pleased to be told that my liver inflammation is noticeably and re-markedly improved so I am hopeful that the aspartame which I have been taking for at about 6 months is being tolerated by my liver.

I have never used saccharin as a sugar substitute nor have I had much use for sugar unless it is disguised as chocolate

best wishes

[Hidden]

Hello crazy-girl.

The reason I haven't took the route to medications regarding the itch is because the first line is Questran (or colestryamine as it is known in the UK generically) is because the side-effect of it tends to be diarrhoea.

Pre-urso (December 2010) I never had any bowel issues at all but after starting the urso I started going through periods of constipation. I had to readjust my already fibre-rich diet but I resolved it myself hence I didn't feel like going down the Questran route. Plus with this Questran it's not guaranteed or I might have thought differently.

I can feel prickly during the day at times but it's around 11p.m. every day the itch surfaces and it is with me until around 6a.m.

I'm no doctor but to me could well be that having IBS is another reason alongside the Questran. There are other medication routes you can go down if Questran isn't helping. I posted on here about 10 days or so ago a clipping from latest newsletter of Liver North (Newcastle, UK) and it shows on there the route that tends to be taken for the itching where medications and therapy are concerned.