Hi Jan,
I do hope that things have calmed down a bit.
1. I never had bleeding with pouchitis, as far back as I can remember.
2. I have had bleeding for other reasons like an irritated stoma, granulation on the stoma (little white or red bumps that grow and build up on the pink tissue of the stoma). I have to cauterize them regularly. It doesn't hurt but afterwards it bleeds quite a bit for 1-2 days...then fine.
3. Everyone has different symptoms with pouchitis and different causes. Sometimes it isn't pouchitis but a reaction to something that you ate, take as meds or another medical condition.
4. I just wrote a long post on it on my Poucherlifestyle Facebook group...don't run for the flagil...try clear fluids, no wheat, dairy or fried foods for a few days...an elimination diet...slowly introduce back into your diet things like chicken or fish...easy proteins. Avoid any fake sweeteners or chemicals...if that helps you at all then you know that it is 'reactive pouchitis' and not a bacterial infection.
5. Heating pads, hot baths, tea, filtered water or hydrogen water help. So do homemade juices. Try carrot juice or anything green. Make homemade green soups...just cook green vegetables til soft and blend...I add fresh herbs (previously washed with vinegar) and reblend...they help a lot.
6. I've gone gluten-free and it helps too.
You need to be your own best doctor and scientist to see what works for you. Antibiotics are sometimes necessary but I avoid them IF I can. If I can't I bite the bullet and take them.
PM me if you can.
Sharon