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Reply to "Pouchitis - My story some hope"

Yes I tried probiotics, people in the UK are lucky enough to get VSL#3 free of charge, but I found it made me really gassy, bloated, increased frequency so I never touch probiotics at all now. I keep a permanent supply of Cipro and Metro and just drop a few here and there when I feel I need them, and generally its very infrequent.

The whole way the drugs are prescribed is ridiculous. If you immediately stop taking once you hit that plateau of feeling better then the drugs remain effective for the next time, even if its a short time later to begin with. I found once you take them for weeks at a time and they are ineffective and you STILL have bad pouchitis, you are stuck with nowhere to go. I was so fed up that I was ready to have a stoma again, and I was so glad that I found a better way than the blind prescribing of these medications by the professionals. Very interesting your son experiences the same plateau. 

I would never, ever take Cipro and Metro for 30 days, not in a million years. These are serious drugs, with serious long term side effects, especially Metro which can cause permanent nerve damage.

The fact your son feels better after 5 days is great news at least. All I take now is Codiene Phosphate to keep the frequency down, and as detailed above, the odd Cipro as and when required. I think my record was a whole year without needing a single tablet. Pretty big change from the state I was in.

 

Last edited by rcrossco_1
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