Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Ulcerative Colitis


Sun, October 05, 2008 12:00 AM

My Colitis has been active for almost one year. I've tried 4 different meds. to date and none have helped. Is anyone else experiencing this problem?
JContogen

FPO jcontogen
Joined Aug 15, 2008

Sat, October 18, 2008 12:00 AM

 Reply posted for jcontogen.

From the start of uc symptoms (boatloads of diarrhea but no abdominal pain) to colectomy was about 14 months. Active the whole time.


I took about a half dozen different meds, with prednisone being the only one that had any effect.  Two of  these meds, Pentasa and 6MP put me in the hospital with pancreatitis. Remicade has the possibility of so many side effects it scared me. Luckily, I only had three infusions.

It came down to life with UC and predisone or a colectomy, as I had run out of medicinal options. No brainer of a decision there.

FPO jeffdc
Joined Aug 25, 2008

Fri, October 17, 2008 12:00 AM

 Reply posted for Yankboy51.

I would like to thank you for taking the time to reply to my posting. I have not given up on the doctors as of yet. I wish you well.
jcontogen

FPO jcontogen
Joined Aug 15, 2008

Fri, October 17, 2008 9:52 AM

Ulcerative ColitisI like all of you that replied to this post have had UC for 10+ years.  Up until about 3 years ago I bounced around from doctor to doctor all being just regular gastroenteroligists.  I took the prednisone (blew up like a ballon, gained 35 lbs., moon face the whole works), enimas etc.

My point is and I dont know where your are, but until I went to a place that specialized in IBD it just got worse.  When I finaly went to the *** I got a real work up, off prednisone, on Remicade for about a year, now on Lialda & Imuran, but I have been in remission for 2 years now. 

So my advice to you is get out of the local doctors office and go see someone who specializes in your illness and has the team and the backing to do the latest research.



 

FPO batchley
Joined Oct 5, 2008

Fri, October 10, 2008 12:00 AM

 Reply posted for jcontogen.

I feel for you. I was diagnosed in Feb 2008 and apparently i never realized that i was "active" for all these months either until i landed in the hospital about a month ago. A total remission period is when your living your life normally just like you did before you got diagnosed. I was never told that and always thought that if i using the bathroom 7 times a day was good compared to the fifteen times before. I, like you, am still trying to find that "perfect" med. I am now on Colazal after trying Lielda and Asacol for the past few months. The Colazal seems to be doing fine for now, but i am still trying to take care of my recent hospital visit so they have be on 35 mgs of prednizone (a steroid) so i guess i will not find out of this drug works for a while. Hopefully it does because the next tier of drugs of Remecade and immurran doesn't sound to great for an active collegiate baseball player.

Its all about finding what is right for you. Don't let the doctors kid you, diet (although unproven) i think plays a major role in this disease. I am currently on a "Low Residue Deit" which has been working great! As for the meds, this will take time as well. I have been told it takes some people up to two or three years sometimes before they can find the right solution to their collitis or crohns.

FPO yankboy51
Joined Feb 2, 2009

Thu, October 09, 2008 12:00 AM

 Reply posted for Bklyn04.

gosh well im new to this website/forum, but i already have found out more in these past 20 minutes browsing than from 3 doctors i've had in the past.

FPO xglitzx
Joined Oct 9, 2008

Wed, October 08, 2008 12:00 AM

 Reply posted for jcontogen.

I have UC for 7 years and I don't even know what remission is, only 1 time in the 7 years I was feeling good for about 8months and thats it. My advice just do whatever makes you happy the happier I am the better i feel. My attitude is i eat anything and I try to do what makes me happy and whatever happens happens. If I have an accident i go home and change, I also took 6MP, asacol, prendizone we are just lab rats tha doctors just keep switching the meds around and hope they work. I learned more from talking to people like me on this site than from the doctors.

FPO bklyn04
Joined Apr 8, 2008

Sun, October 05, 2008 10:32 AM

 Reply posted for jcontogen.

Trust me, you aren't the only one. I've had a really bad flare for 3 years and I've tried 6MP, Asacol, Rowasa, Pentasa, Azulfadine, Cipro, Flagyl, Prenizone and am currently taking Colazal, hydrocortizone enemas and Canasa. I've also modified my diet excluding ALL dairy. There are people out there (some I've found on here) who have gone through worse. There is light at the end of the tunnel though. Hopefully you will find yours soon! There are many meds out there so don't give up any hope. Good luck!

FPO tarheelmama
Joined Sep 9, 2008

Related Topics

IBD and trauma
Author Image Janeliza
Joined Apr 13, 2022

Hi all! I've had Crohn's since 2014 with m....

read more

Life Insurance?
Author Image Aperson1
Joined Dec 2, 2022

40 y.o. male looking to get life insurance.  ....

read more

IBD and exercise/sport
Author Image JS25
Joined Aug 14, 2023

This is my first post. I am 28 and I was diagnosed....

read more