Hi, what meds are you on currently? What have you tried?

Lialada, pentaza,endecort,humaria and now only endecort. Waiting to get apt a @ U of I hospitals & clinics with GI specialist. Surgeon said I was NOT a candidate for surgery. Your history rmb ?

I have moderate UC but I’m one of those lucky ones who has always responded to meds. They’ll work for a long while, years. Right now, I’m on aziothioprine. I’ve been on it for 9 years or so.

I’m sorry you’re suffering. Why aren’t you a surgical candidate?

Good for you ! Thanks for your concern. A med that has a track record of longterm success I love it. The med aziothioprine is new to me. I will research it. I am told by a surgeon a good outcome would not be likely as I have inflammatory bowel disease and surgery causes inflammation , bad and bad. I got the impression the GI Dr, I am going to see will want a new scope with biopsies to make their own prognosis. And to decide what meds to treat me with. Last one was in 2015. Another doctors tests and procedures is nothing new to me. Can't happen soon enough.

I have only been diagnosed for 4 years but looking back had many symptoms my whole life. I ended up in a flare that put my in the hospital for 5 days and a few months later 10 more days. Nothing helped. I couldn’t even drink water without pain and IBS symptoms. I was on 80 mg of prednisone per day and one of those weird people you hear about that lost weight on it. It only seemed to slightly mask my symptoms. They finally started me on Remicade and I have been able to find a new normal. It is not perfect but every one is so different that you just have to find a doctor that listens to you and will help you find what works. Hang in there. I hope this helps. I know one day it will come back and I will be back at square one but now I know I am not alone and there are people surrounding me that will help me fight this when I am just to tired to fight for myself.

Thanks Electric for your story. I hope you can stay in remission for ever !! Remicade is give through a iv isn't it ? How frequent do you administer it?

Hi Searcher, I have never had remicade but was told that the infusions are once a month, right now I take Lialda, Mercaptapurine and Humira shots and still not in remission but am able to at least work a part tiem job. My GI sent me to another specialist downtown and I have lots of blood work and will get another colonoscopy by this new Dr. and hoping she can improve my condition. Best of luck!! I hope your new Dr finds the right med for you

Hi Jean , Thanks for your story and good luck to you too. I have this idea my new Dr. will want another scope done and probably labs. It just seems endless sometimes and you wonder who knows what. Like I said its been a long road. I hope you have a great thanksgiving !!

I was also on Remicade and the dose is given every 8 weeks unless it doesn't keep you healthy. When I was on it I received treatment every 6 weeks.
I was lucky in that my UC was under control for 9 years with asacol and only two times having to use prednisone. 4 years ago my body stopped responding to the Asacol and I was prescribed Imuran which gave me pancreatitis. Then we switched to Remicade. It worked for me for nearly three years but in July of this year it stopped keeping me healthy. So now I am on a new medication that is also given through IV called Entyvio. It is a gut specific drug that blocks a specific protein in the gut. I've read and heard good things about it and am waiting to see if it works for me. I've only had two doses of the medication so far and have read that it can take up to 5 before you start noticing a difference in symptoms.

I am not sure where you live, but here in Canada this drug is covered by the province. But I know it can be quite costly for places that don't cover the cost, or even part of the cost. I hope that you find something that works for you!

Thanks firefly719 for your story. It is interesting to here everyones story as to all the different meds that have been used. I hope you have good luck with the Entyvio. I'm seeing some people are on a combination of meds while others are only receiving one. I wonder the Dr.s reasoning in both regards. Searching for understanding of this horrible disease is easer to endure when we share our stories. Wishing everyone a Happy Thanksgiving this day. Hugs back at you Jean.

I found a site called painfreefoods.com- they determined it is the food we are eating and we cannot combine them- check out the website- they are on Facebook too

It is good to know that we aren't alone in this, even with 3 meds I have never totally gone onto remission, maybe I should check out that site mentioned above. I knoow that food triggers it but have never been told what to eat, was just tld not to eat a few things llike red meat annd corn and nuts because they are hard to digest and I stay away from foods with skins and seeds and I know from experience that my body doesn't like ruffage but maybe there are other things that i shouldn't be eating as well.
I hope you all had a nice Thanksgiving and hugs to all who are suffering!!
I getmy colonoscopy Tuesday, :-( God I hate them, lol