Love affair with Humira is over. :( Clinical Trial or Surgery...

     Sorry to hear this Matt.  My personal opinion....have the surgery and be done with it.  I suffered with UP for twelve years and ran the gamut of meds...6MP, Remicade and then Humira....all failed.  I became prednisone dependent (which sounds as though you may be too) and it was killing me...literally killing me.  It gave me full blown osteoporosis, uncontrollable high BP and type 2 diabetes.  I had surgery June 28, 2010, total colectomy with end ileostomy because I was not a candidate for j-pouch...best decision regarding my health I ever made.  At least your GI doctor suggested surgery....all mine wanted to do was try more and more drugs!

     I had the surgery at age 63.  I am now 66 yrs old and only take 1 pill a day for my well controlled BP.  I no longer have diabetes.  Living life to the fullest.  My youngest daughter (age 35) got married Saturday and I enjoyed every minute of the reception, ate anything I wanted and danced the night away.  Pics are on photobucket.com, login crohnsdisease, password 6mp3asa!

     Wishing you the best of health.  Don't let this disease take control of your life.

My opinion, skip the clinical trials and go for the surgery. If your condition is that bad that all these meds have failed for you, then Most likely you are just putting off the inevitable. I have been there and done it all and surgery is the ONLY thing that has actually worked! And now I'm done with UC for good and you could be too and let me tell you, it's a wonderful thing.

I know all too well how scary making that leap to have surgery is but it was a blessing in disguise for me. Just wanted to lend some encouragement that surgery isn't the end of the world.

All the best to you.

Thanks, guys. I'm flat out terrified of surgery. The Clinical trial is the "easy" choice because the ramifications or a drug are often time not immediate. The down side is that I could be giving myself cancer. Surgery is not an easy choice especially because my symptoms are a far cry from what a lot of you experience. On a bad day I'm in the bathroom 5 or 6 times. At my worst, in the hospital, I was going 10-12 times a day. The surgery seems like I would be committing myself to a potentially higher frequency of bathroom visits. The doc says my colon looks shot, though. I'm also scared of the "oops, we meant to say that it's Crohns, not UC" diagnosis. Prometheus labs says there are no indications of Crohns but my UC is labeled indeterminate because it is patchy and on both the left and right sides. I really am conflicted as I met with surgeons in February and was ready to do it when the Humira kicked in...

You could always look for other trials. I am sure the one your GI offered isn't the only one around... I saw people posting about helminthic trials and fecal transplant trials recently.

Biopsies have always been UC and never crohns but since the pattern is inconsistent, they call it indeterminate colitis. He says that the small intestine is unaffected at this point but would want to do a capsule endoscopy before committing to surgery. Also, I think the GI means that everytime I've had a scope the ulcers are deep and angry. I'm going on 3 years of almost constant flare with the exception of the 5 months where Humira was "working." Even then, my scope wasn't perfect. I've tried all of the meds and tons of homeopathic stuff. I've been on the SCD and it almost killed me. I would have the surgery in a heartbeat if it wasn't for the fact that it just might be the worst decision I could ever make. I'm afraid that the outcome - that some here may find a Godsend- would be worse than what I'm dealing with on a daily basis.

Hi matt
A few years ago I decided on a clinical trial, ended up working well for some time, then I developed a rash and had to end it. Then I decided on remicade, surgery for me just wasn't an option. I was in denial. The concoction of lethal drugs and infusions were certainly working on the outside, but not on the inside, the disease spread and the polyps multiplied. I was kidding myself. I've just had surgery, and unfortunately for me I didnt have enough bowel to make a j pouch once the surgery was underway. I never thought I could live with an appliance (bag), but I am living, I have another shot at life...and its honestly ok..don't be afraid.

Matt, I was in your position a couple of years ago.  Only difference is that Remicade had quit working for me.  My doctor offered surgery or a clinical trial.  I would have tried the clinical trial except that it required going off of all maintanance meds like Asacol and 6mp.  I was already doing really bad and the prospect of purposely causing my condition to deteriorate further did not seem like a good idea.  Also, concerning the clinical trial, there was a 1/3 chance I would get a placebo, a 1/3 chance I would get a dose that was not effective and the remaining odds that the study meds would not work.  I didn't like those odds and I certainly didn't like the surgical options.

I was so lucky that I found my releif in a herbal supplement.  I was basically disabled at the time I started.  I couldn't work, I couldn't sleep, I couldn't leave the house, I had awful abdominal cramping, etc.  So, don't give up.  There are options out there.  Mary

I participated in a clinical trial for asacol (5-ASA) more than 20 years ago. My University-based GI got a special protocol from FDA for me to try it, since it was only being tested for Crohns, as I recall. I was very sick and he was talking surgery, but the 5-ASA pulled me out of it.

Once the actual trial started, it was blinded and I was lucky to continue getting the real drug and not the placebo. I had to keep track of every bowel movement, get blood tested and have flex scopes every few weeks. You're welcome.