Welcome to this forum. It is a wonderful place to get l lots of answers, ask questions, and support from wonderful people who have all suffered and can certainly relate to all that you are going through. Sorry you have to be a part of this terrible "club" though.
Regarding, the surgery..i mean, i dont WANT it but if that's coming down to my only option
IMO, surgery is not your only option,
read the post from cologne1:
where he says " I do not have enough time to read through all of these but..... if you have not tried LDN then read my story. I posted a new message some weeks ago call 'Ulcerative Colitis in remission'. Read how I took one Remicade treatment after I had stopped bleeding (3 days prior). I feel that was a mistake but I was getting so desperate I felt what could it hurt, my choice at the time was that or snip snip. I will never know as I found out about LDN near the end of my rope. If I had the experience to do over I would jump all over LDN first !"
Sorry you're having such a tough time. UC is a terrible disease. I don't know if you've read any of the other posts, but I would recommend you read the ones on LDN.
I was diagnosed with UC and was bleeding pretty badly for close to 1 year, tried various regular meds which didn't work, they wanted me to take Remicade and I refused. Then I got the remicade or colon removal talk, and I said NO. I did lots of research and found LDN. It saved my colon, and in the process I started getting my life back.
Please do your research on it. To me, it should be the drug of first choice, rather than last resort, because it has almost no side effects, is cheap. But don't be fooled: most doctors will NOT prescribe it for you. You'll probably need to go to an alternative doc to get it prescribed. If you do decide to go for it, make sure you get the Transdermal LDN prescribed.
Here's my initial post, and a crash course in LDN:
I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.
When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me alot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.
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
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:
and if you want to find what other Crohns patients have experienced when used LDN, choose Crohns Disease at:
Hope this helps. Good luck to you.
Please let me know how it works out for you.