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1ST HOSPITALIZATION WITH UC

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Ulcerative Colitis
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Posted 9/18/2013 2:10 PM (GMT 0)
i was just discharged fromt he hospital yesterday 9-17-13 i went in on 9-13-13.  here is my story i was diag. with mild uc back in 07 treated with 5asa and meslamines worked great for about a year.  stopped working they gave me prednisone for a bad flare worked great at 40 mg have been having in anf out of flares ever since i try to come off steroids.  was given azathiproine worked great for about 2 years and had me in my longest remission, then it gave me pancratitis.  was just recently given uceris which my colon laughed at and did nutin for me have been taking lialda the entire time i have had uc, which they told me to stop taking now bc they think it was increasing my diarhea.  finally after being discharged from the hospital after being givin 4 days of iv steroids 2 bags of blood and one bag of iron i am still bleeding and still goin d not as much as when i went in but i mean if it keeps up ill be back in the same situation i was just in in another month.  my current meds right now are prednison 60mgs and humira 40 mg shot every 2 weeks which seems to do absolutly nothing.  i went to thomas jefferson univ which is one of the best in the united states for ibd.  i still have inflammation in my colon and have terrible ugency all the time the next step for me is surgery which i am almost ready to get now, but they try to avoid al options first before actually removing the colon first.  just lookin for any similar experiences or what i should or shouldnt b doing.

current meds 60mgs of pred. humira 40 mg shot every 2 weeks. renew life critical colon 80 billion .

past meds-azathiprine(pancreatitis disct'd), lialda, colozal, meslamine enemas, uceris, vsl#3

everytime i ween off steroids i flare up immediatly.  im missing alot of time at work and with my family bc of this disease, so seriously weighing surgery btw i am a 29 year old white male 186 lbs.

Posted 9/18/2013 2:24 PM (GMT 0)
Hey, glad to know of another philadelphian. I am in West Chester (go to west chester gi).

Sorry to hear you are having such a tough time. Did you try remicade? I had my 2nd infusion yesterday and am hoping it will do something for me. The success numbers look better for remicade vs. humira.

Also, there is vedolizumab awaiting FDA approval which will hopefully come early 2014.
Posted 9/18/2013 2:49 PM (GMT 0)
They said they might try remicade but im already on humira which isnt much different but diff bioligcs to act different in every humans body, so i may try it but already have a feeling it would take the same path a humira.  yes nice to know u r close nice to meet u thomas jefferson was great for gi but i was dont wanna keep having the same issues every months with losing blood and needed this and that transfused and stuff its tough to work and hold things together then explain it everytime i got miss days
Posted 9/18/2013 3:11 PM (GMT 0)
Yes, it is another biologic, but the effectiveness numbers were better for remicade over humira which is why I chose it of the two.

But, I understand about missing work. I have taken 8 sick days this year, and left early/came late a bunch of times to go for Dr. appts, blood work, scopes, etc.... The combined previous 3 years, I only took 2 sick days.

Right now, I wake up an hour earlier than normal so I have sufficient toilet time and then eat nothing all day just to try and make it through the days.

You may want to get surgical consults. I've been debating doing this. I know others have mentioned it is always better to do this and be prepared so that if the time comes, we aren't having to make a hurried decision without proper time/information.
Posted 9/18/2013 3:19 PM (GMT 0)
You should give Remicade a chance.
I was in a very similar situation, was on Humira for 9 months and couldn't get off Prednisone. Started Remicade and was able to taper off the Prednisone. Have been in remission for the past 14 months.
Posted 9/18/2013 4:30 PM (GMT 0)
THANKS FOR THE INFO GUYS AND Y I WAS IN JEFFERSON I MUST HAVE MET WITH 25 SURGICAL CONSULTANTS SO WE TALKED ALOT about IT BUT THEY WANT ME TO TRY TO A COUPLE OTHER OPTIONS BEFORE SURGERY BUT I NO ITS GONNA LEAD TO THAT EVENTUALLY.  IT MAKES ME FEEL BETTER IM NOT ALONE HERE AND OTHER PEOPLE DO EXPERIENCE THE SAME PROBLEMS.  MAYBE I WILL TRY REMICADE I NO IT DOES WORK IN THE BODY DIFFERENT FROM HUMIRA
Posted 9/18/2013 4:50 PM (GMT 0)
Are you sure that the renew life critical colon 80 billion is helping you? I took that once and had to discontinue because it made me much worse.
Posted 9/18/2013 4:54 PM (GMT 0)
I have heard that Dr. Goldstein is one of the best colorectal surgeons. I know he is at Jefferson, did you speak with him?
Posted 9/20/2013 1:15 PM (GMT 0)
HI,
I was in a similar case when I was in the hospital for 5 weeks in 1986.I was not getting any better & also had transfusions.I was transferred to Mass General in Boston to have surgery. The gi doctors wanted to try different meds there before any surgery was to be done.I was very lucky that I got better.Some of the meds I was on back then was azzulfidine,imuran,prednisdone,& cimedadine for stomach acid.Excuse my spelling.Try to be patient & let the doctors do their thing.I am now on asacol hd 800mg 3 times a day.
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