Who gets Diarrhea?

[john]

Hi,
Sorry to bring this nasty subject up, but I need some information!
I was doing my voluntary job at the clinic today and the subject of diarrhea was raised by three of the patients.
I have this chronic problem myself and have had it ever since I was diagnosed and began IvIg many years ago.
Same story for one of the others, and a third has had it chronically since getting giardia in Thailand in the nineties.
Nothing seems to be able to prevent this debilitating problem except loperimide, taken each time we're out and about and away from a loo, to prevent embarrassing ( actually beyond embarrassing!) accidents.
Downside is that loperimide brings its own problems in the form of excruciating gas pains after eating later in the day.
Am I telling you something you already know about, and if so have your team ever looked into this and found an answer?
I'd love to hear your thoughts on this.

[willo]

Hi

I have the same problem it started after I was diagnosed but before I had any treatment. Loperimide doesn't seem to have side effects on me; I take one every day and the most I take is two.

[s162216]

Had it pretty much since I was a baby although in recent years it has stopped being a routine thing (with the potential to come back with a vengeance as it does sometimes). I eventually found out this year (after having god knows how many tests and possible diagnosis's over the years) after having a colonoscopy that the reason was Lymphocytic Colitis, where for unknown reasons lymphocytes accumulate on the surface layer of the large colon and prevent absorption of water so diarrhea results. Technically speaking I shouldn't have it as 99.9....% of cases are in over 65's!

Theres no real treatment for it apart from taking loperimide or trying a low potency systemic corticosteroid to theoretically reduce the lymphocyte surfacing, neither of which are really known to work according to the consultant so I decided not to have anything. Besides it has subsided to a great degree in the last couple of years (it just stopped one day suddenly and has only returned to how it was for a few months or so a couple of times) so I think I made the right choice for now.

Sam

[liz2mac]

Hi John,

I'm one of the lucky ones for whom this isn't a problem. Alan though battled with this and with malabsorption all of his adult life. I'm guessing that all parasitic and bacterial causes have been ruled out? I'd hope that any of us who had diarrhoea would first ensure that all of these causes were ruled out before making assumptions that it is just something that we have to live with. It must be horrible to have to cope with this on a day to day basis.
Liz

[crocker]

Curtis has suffered chronic diaherra for 8 years now.At first he was tested for all the usual things but then a gastro doc by chance found norovirus living in the gut so make sure they test for the unusual as well.He is still suffering though as so far there is no treatment and immudiom and such like has not worked for him. Lorraine

[willo]

Lorraine reminded me we are Zebras.

[mims]

I too am suffering big time and like Curtis, I also have the norovirus. I am waiting delivery of an antibiotic, the vetinarian sort!!! Its either been extracted from pigs/cows or given to them. Will get seriously worried if i develop a curly tail and start snorting. Its un-licenced in this country is coming from the states. Watch this space!!!!

[liz2mac]

Lol Mims, we'll watch for the tail and find a way to discretely tell you :- ) . I have felt for many years that we zebras should be recgnised as being pioneers of new treatments, which then lead on to improvements in the care of the general population. I'm sorry that you're suffering like Curtis is Mims, life must be tough.
Liz

[keziah]

Mine improved greatly after being diagnosed coeliac and following a gluten free diet for the last 2 years or so. I suffered a lot after having cryptosporidium years before, so took ages to realise I was coeliac and not just suffering long term effects from the cryptosporidium.

[john]

I'm interested to hear that Kez, I'll ask about it on Wednesday at my clinic.
I re-read a report I got 18 years ago when the gastrologist concluded I was not absorbing fluids properly, ( could be for the reasons Sam mentioned) , and the good doc recommended a dietary change to include lots of fibre and bran.
I started having a big bowl of All Bran for breakfast on Saturday, and yesterday and today I could kid myself that it's a bit better, but I still daren't go out without my loperimide, wind or no wind!

[s162216]

Dec 3, 2012 19:44:58 GMT keziah said:

Mine improved greatly after being diagnosed coeliac and following a gluten free diet for the last 2 years or so. I suffered a lot after having cryptosporidium years before, so took ages to realise I was coeliac and not just suffering long term effects from the cryptosporidium.

They thought I was ceoliac for a long time as my mum has it (and is one of the unlucky 5% who also get the associated dermatitis hepetformis) and despite having multiple gastroscopies, blood tests etc which were negative, they were still pretty certain I had it and it was causing my diarrhea. Of course if you have practically no recordable IgA then the blood test won't work anyway and in the end that was what brought about my unexpected CVID diagnosis as they tested the levels and then all the Ig levels.