Bottom half of J pouch is badly inflamed

It sounds like the antibiotics helped you a lot. They aren't very expensive (except for one called Xifaxan), but you can't get any medicine without a doctor's prescription, and that usually requires a visit. 

The fact that only part of your pouch is inflamed might mean you have ischemic pouchitis. That's caused by a poor blood supply to part of the pouch. Since you have had good results when you were able to treat your pouchitis with medication, your biggest problem seems to be inadequate health care. Perhaps there are free (or low cost) clinics you could check out?

When you say the bottom half of your pouch are you sure your doctor was not talking about the rectal cuff? This is the bottom segment where the pouch connects and is rectal tissue. Most of us only have a centimeter or two, but some have several inches of retained rectum. This can lead to serious cuffitis/proctitis with a great deal of rectal bleeding. Even if you have a short cuff (1-2 cm) there can be severe cuffitis with bleeding. Mesalamine (Canasa) or hydrocortisone suppositories are usually prescribed. 

Unfortunately, you need serious treatment for a serious problem. Supplements won't do it.

Jan

Who did the scope?  Can you call back that office for refills? Hydrocortisone suppositories are inexpensive compared to others. You could also ask for samples of those as well. My GI had sample Canasa suppositories when I first tried. These are very expensive but if you could get samples to see if they help then you might figure out if your rectal cuff is the problem.  Since the antibiotics helped maybe they could give you a prescription for a generic antibiotic too. I feel for you as I went thru 5 years of hell with mine before I had it removed. I am not saying you need your's removed. 

Thanks for the replies. My specialist has put me on 40mg Prednisone. See if that helps. 

I have around 1 cm cuff left behind. But it is literally the bottom 50% of the pouch which is terribly inflamed and bloody. Horrendous. 

I have been on the steroids for a week and it seems to have made the bleeding worse, or more frequent thus far. Hopefully will improve.

So my specialist says we will systematically try all the drugs I was originally on after I was first diagnosed with UC. He also touched on the possibility that I could have been wrongly diagnosed with UC instead of Crohns.

Hopefully the prednisone works!