robray said...
passer, I am scheduled to have bacteriotherapy done in Syndey in May. I can update you through this thread in June. I am very optimisitc on the procedure, but I also know that there is no guarantee. I have been treating my symptoms for a very long time and feel this is the best shot at getting some relief from this nasty disease.
relativelyquantum, if you have a doctor that is open to this procedure you are very lucky. I tried for three years to get this done locally (Vancouver) and have had no luck. I have even approached doctors who are doing the procedure for c. diff., but they have refused. My GI must be close to 70 years old now and he used to do the procedure 30 years ago for what he guesses was c. diff. They didn't have a test for c. diff. back then. He is not open to it.
Pan UC 17 years, Dipentum, Entocort
I thought I would update this thread with the results of my HPI (Human Probiotic Infusion) treatment. I am not much of a writer so feel free to ask me any questions or email me in private if you like.
I went to the Centre of Digestive Diseases in Sydney Australia during April and May. The HPI treatment involves stool testing for parasites/bacteria, anitbiotic preparation and finally the actual human probiotic infusions. In total it takes several weeks to complete. Everything with the treatment went very well. The staff at the CDD were amazing as well as the facility.
At the start of the infusions I stopped taking Dipentum (5ASA) and Entocort Enemas and started taking a small dose of prednisone and Pariett (proton pump inhibitor). The Pariett is not part of the procedure, but I had an endoscope done at the CDD because I was complaining of acid reflux. The endoscope showed an ulcer at the end of my esaphagaus and the CDD recommended that I take Pariett to allow it to heal. I really didn't feel much different during the infusions, except for a definite increase in bloating and gas which seemed to indicate that something was going on. I was still going to the bathroom about twice a day and they weren't very formed. This is normal for me when I am in so called remission. This was a little disappointing as I had heard that some patients experience normal bowel movements after even the first infusion.
It has now been 11+ weeks since my last infusion and I have had a few ups and downs during that time. But overall I have had a steady decline leading me to the point I am at now which is cramping, bleeding, and diarrhoea 8-10 times per day. The two month timeframe of stopping Dipentum and going in to a flare is pretty consistent as I had experienced that in the past when I tried to reduce the dosage of my Dipentum. I am back on Dipentum, Entocort Enemas and prednisone.
I hate to say it, but HPI did not work for me. I still believe that UC is caused by an unknown bacteria. I would be willing to try HPI a second or even third time before I completely give up on it. I hope this doesn't stop anyone from trying HPI, but I wanted to tell people what happened when I tried it.