bkzb0y1,
Welcome to the forum.
I am sorry you are suffering so much and are in so much pain.
You've lost an awful lot of weight.
IMO, you should look into trying low dose naltrexone, LDN - which has helped many with Crohns...
Here are the informational links:
Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works!
Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937
LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!
Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you. You can reach them at: 800-553-7429 www.skipspharmacy.com
Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org
www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org
and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease at:
www.ldndatabase.com
Hope this helps. And I hope to those of you on the fence about trying LDN, give yourselves a chance...
Please let me know how it works out for you.