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SO FREAKING UPSET ABOUT A DRUG STUDY I WAS PARTICIPATING IN! AAARGH!!!!!!!!

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Ulcerative Colitis
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Posted 4/24/2012 10:22 PM (GMT 0)
Thanks for your support everybody!!!

UPDATE: Just talked to my GI dr.  She said there is nothing she can do to get me back into the study, it is out of her control.  Then she told me something I am not supposed to know.  For the past 5 days i have been on the placebo.  I was kicked out because i was not having clumps of blood, just streaks while on the placebo!  I need to be worse on the placebo, with clumps of blood.

Now mind you on the study (5 days) i was having the same amt of bm's 3-5, and urgency but no blood at times to faint streaks.  I had a sigmoidoscopy last week the day before starting the study and it showed the same old patch of inflammation in my sigmoid from my feb colonscopy. So the inflamamtion is not in my head.

My GI thinks the the foam delivery may have been helping. I have tried hydrocort enemas and they worked great for the first week and then not anymore.    she does not want me to continue on rowasa, does not feel it is helping anymore.  i explained to her that with the rowasa i have streaks of blood andwithout it i will start to have clumps of blood.  I have never used foam rectal meds before but they are easier and less irritating than retention enemas and canasa( they always leaked on me).  She suggested i try protofoam and hopefully i can pick it up from the pharmacy tonight.

I forgot to ask about ldn, but i want to see how the proctofoam works first  anyway. 

**hug****

 

Posted 4/24/2012 10:25 PM (GMT 0)
whoah, the above post, from UCin NJ is me, I-_love-coffee.  I usually post from my computer at work, but i am home right now and when i logged in it must be from when i forgot my sign in info and signed up again.

 

thanks!!!

 

I_love_coffee

Posted 4/24/2012 10:47 PM (GMT 0)
Funny, I was thinking about proctofoam as an option. It is a pretty low dose steroid in that foam (I think less than even the steroid supps) I hope it works great for you. Keep us posted. BTW, I am in NJ too.
B
Posted 4/25/2012 12:06 PM (GMT 0)
thanks hateuc, where in NJ do you live, I'm in the south end about 20 minutes from Philadelphia.

Posted 4/25/2012 12:11 PM (GMT 0)
I'm in Central NJ. Is your GI in Phila? I think there is a well known UC GI (Dr. Chaudhary--or something like that ) in Phila. Small world...we've talked to people in other countries and right here in good ole NJ!
Posted 4/25/2012 12:29 PM (GMT 0)

my gi is in the same town i live in.  Going to Philly is a pain in the butt,(pun not intended) although I have thought about it, after reading some things about Thomas Jefferson University.

I do like my GI dr, she is spot on about alot of things but i think her failings are that she is not open to diet mod/alternative treatment, mainly because she hasn't seen any consistant results with them.  

Occasionally I toy with the idea of seeing a doctor at the Cooper IBD Institute for a second opinion. There is a dr there Dr Adam Elfant who i see always gets hightly rated iin local mags, etc.  Even thought Cooper Hospital is in Camden, the IBD Institute is in Mount Laurel which is one town over from me.  I keep thinking that maybe because it is a IBD specialists that maybe they are open to different things.

Do you like your GI?

Posted 4/25/2012 12:33 PM (GMT 0)

hateuc;

i just googled dr chaudhary, she practices out of Thomas jefferson.  what have you heard about her?

]thanks!!

Posted 4/25/2012 12:36 PM (GMT 0)
Great advice and comments Collicat and Killcolitis. What a joke, doesn't make sense. Either totally unethical, or a mistake. Either way, you need to pursue this....for the very least to get back the med that works for you. Remember, "squeaky wheel gets the grease".
Posted 4/25/2012 12:53 PM (GMT 0)
ilovecoffee im so sorry...i know what that feeling is like when you keep restricting yourself further and further and uc just doesn't abide. It's a crazy feeling and makes you feel like this disease really controls your life. And yes i hate it too how some people can eat all sorts of junk and still be ok. I long soo much to be able to do that.

Have you tried Curcumin or Boswellia?
Posted 4/25/2012 12:54 PM (GMT 0)

trojen: thanks for your comments, I posted my update above under my other screen name, ucnj- apparently i was on the placebo the first 5 days!  and they were only keeping people in their study who had  alot of blood in their stool,  and those first 5 days i either had just streaks or none.   So on the one hand i am really bummed that i didnt get the real med to try (50% get real 50% placebo) and on the other hand wondering why i had barely any blood for 5 days. trying proctofam next as gi thinks that maybe it was the foam delivery soothing and coating the area???  last night i did a hydrocort enema and today so far only 2solid bms no blood very minor urgency... 

 

 thanks killcolitis for your offer of budesonide enemas, and while i am tempted i am also afraid i will not be able to get more. did they help you at all?

Posted 4/25/2012 3:10 PM (GMT 0)
To me it still sounds unethical to remove someone from the study who improved on the placebo... So in the end they can say "80% of patients on the drug improved but no one on the placebo improved". Taking you out skews the results; it still seems fishy to me.
Posted 4/25/2012 4:54 PM (GMT 0)
I like that my GI partners w/ me on drug decisions...gives me my input and is cool w/ rectal meds. He however does not specialized in IBD and has never mentioned anything about alternative as well. I have def. done my own research w/ that. He is not my dream GI, but he is low key, gives me my Rx for rectals. I hated my first GI, who was condescending and obnoxious.

As far as Dr. Chadhary,...I heard she is knowledgable...I read a presentation where she was talking about the mistakes Dr's make when not prescribing rectal meds etc.... You can probably google her and get info. There is a girl on here too who used her for very resistant UC-while she still needed surgery--Dr. Chadhaury actually said, it is time for surgery as opposed to keep pushing for drugs that weren't working. I have never met w/ her personally, but if I were closer I might have given her a shot.
B
Posted 4/27/2012 7:08 PM (GMT 0)

thanks again everybody!

conquer uc: no i have not tried curcumin or boswellia, but i may. 

serenity now: yes i agree exactly with what you are saying, but i dont have the time or energy to fight this battle right now.

 

i started the proctofoam 2 days ago and so far have had *knock wood* 2 good days, 3 bms a day, less urgency than usual and no blood except one time i thought i saw a spot of blood and some mucus so i am having improvements.  the proctofoam makes me dizzy the next day but i can live with that.  i had my doubts that the foam would reach my recto sigmoid where my inflammation is. so we'll see. *keeping my fingers crossed*

my doc thought the rowasa was no longer helping me, and in fact i have noticed an improvement since stopping it. rowasa has always gotten me out of flares beofer i guess its no longer helping, sigh.

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