not getting better-anyone know of trials

my daughter had about 2 weeks since november where it looked as if things were going in a good dirction, but here we are again with all night diarreah and blood. she will be coming home thursday to see her dr, and the dr will determine if she will do a colonoscopy friday or early next week.
if anyone knows of any trials out there that are real and being done by reputable institutions please let me know, i know there are still more drugs to be tried and i'm sure we will be doing that, but i need to know what's out there i know her disease is advanced and i don't want more time to go by without knowing all i can
and more tissue is damaged. if there are trials worthy of it i 'd like to see if we qualify before she ends up on the drugs that usually exclude you from a trial. i read and read, but now i feel as though i am failing her. i've got to do something-thanks.

PLEASE,
You are not failing your daughter. You are doing everything you can to help her, this disease is not your fault and not her fault. Being there for her is doing more for her than you know, probably more than she can express. This disease is hard for all of us and I think more so for our families sometimes. Not being able to take away the pain of someone you love is worse than being in pain. I'm sure she knows that you would take this for yourself if it meant she could be disease free.

As for trials...
I believe there is a humira trial going on now. Have you asked her Gi about trials? mayo clinic also has a few going on if you go to there sight you can get a better idea of what they have

http://www.mayoclinic.org/ulcerative-colitis/clintrials.html

Where are you located? My GI does tons of trials but we are near chicago. I've done a few with great results.

Has her GI discussed remicade as an option?

kelly, thanks- i will look up the mayo clinic- i hadn't asked her dr yet becuase i thought this being her first flare that she was on the way out of it, but i will ask on thursday and research her instituion too

I am not sure about what trials are out there, but I wouldn't risk being on a placebo and getting sicker. It seems like the next step medication-wise would be to try Remicade or Humira. Does your daughter ever take anything like Lomotil? It is not a cure, but sometimes when I am having too much D, the lomotil stops it so my poor colon and rectum can rest. Sorry to hear she's not better. Sometimes the medicines just don't work, it's nobody's fault.

PLEASE, I’m sorry to hear about your daughter. From your signature it appears she has not tried most of the conventional meds and it has only been a few months since her diagnosis. Under these conditions she may not be eligible for any trials. Most trials are looking for patients that do not respond to conventional medications and have had a diagnosis for a minimum amount of time, usually 3 to 6 months. Your daughter should continue to look for something that works for her and give it a reasonable amount of time. Many treatments take weeks to 6 months or more to start working.

When I was first diagnosed it took me over 2 years to achieve my first remission. That lasted about 2 ½ years. My current flare has lasted almost 3 years. I’m currently in my second clinical trial it has not helped yet. I don’t understand why so many here are against clinical trials because of the possibility of getting the placebo. Most trials eventually give you the real treatment.

A list of clinical trials for UC can be found at:

http://clinicaltrials.gov/ct2/results?term=ulcerative+colitis

I've been without a flare for a little over 4 years, and I still show blood occasionally. People can flare for a long, long time it seems.

Please - A flare doesn't necessarily mean you're bleeding. A flare means your disease is in an active state, meaning there is inflammation and/or ulcers. I believe having any UC symptoms usually means you're flaring (blood, D, excessive mucous, urgency, etc.), unless, of course, they're being caused by something else, like IBS, lactose intolerance, an infection, etc. If I'm wrong about this, please feel free to correct me anyone. I think the length of flares really varies from person to person and can even vary with each individual throughout their lives.

I agree with the above posts that it takes time for UC meds to work. It took me a few months of consistent Asacol and Rowasa to get my symptoms to a manageable point. Still not quite into remission, b/c I have some mild inflammation in the rectum, but I'm very close. I know it's really hard to be patient with this, especially while your daughter is suffering. Also, I personally would feel safer going on 6-mp or Remicade than going on a trial, because these drugs have already been tested.

Traditionally gastros have ordered flaring patients off dairy, as if it caused UC. That's silly! Many people suffer discomfort after consuming dairy if they are lactose-intolerant; it's pretty easy to determine whether that affects the individual, in which case one can try lactose-free dairy products and/or yogurt containing beneficial organisms. There is also the option to be tested for food allergies. The point for UCers is to keep up calcium/ vit D intake, especially while on steroid drugs.

I agree with the above comments that clinical trials are something to consider if/when a patient fails to respond to conventional meds. Your daughter was diagnosed only 2 months ago; she hasn't exhausted the conventional meds yet, though it might seem that way from all the enemas & suppositories 2nd gastro prescribed. Nor has she been using this stuff in combo with cautious diet & rest long enough to say definitively that they don't work!!!!!! I strongly believe that a UCer cannot be running around here, there, & everywhere while trying to put out a flare. You have to think meds, diet, rest, & then prioritize other activities, including medical appointments, to conserve strength. I write this sympathetically, thinking back to my 1st flare, when I wasted energy going to hospital emergency room, where not even the resident on call could get hold of my gastro on the weekend! We all tend to freak out over D with blood, but we do better to calm down, take the meds, & rest as much as possible-- while trying to think positively about healing. It takes time-- so PATIENCE is necessary. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

I took this blood test, it gave me a print-out of my food sensitivites. Unfortunately, my insurance wouldn't cover it and it was expensive, but worth it. It turns out that I am highly "reactive" to apples and oats, things I was eating daily. Now I rarely have a migraine, before the test I had them almost every day. It has also helped some with diarrhea, although when I am flaring bad, nothing helps. I got the "True Guts" movie yesterday, I think it would be a good thing for you to get, it seems mostly to target the younger/newly diagnosed UCers and their parents. Also, as many others said, it usually takes a while on the medicines to see effects. It took me 3 months or so on Asacol till I felt any better. It is even harder when you are flaring bad at the time to see a change, I think. The only med that will give you an almost instant change is Prednisone, and maybe Remicade.

Link to the allergy testing:       http://www.nowleap.com/