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Ulcerative Colitis
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Posted 1/2/2014 6:30 PM (GMT 0)
Hello all,
I am new to this forum and I'm looking for some advice. I was diagnosed with ulcerative colitis (pancolitis) in 2010. I have been on as Asacol which did nothing but increase my symptoms, sulfasalazine which had the same results as asacol and then I was placed on 6-mp. On some occasions that seemed to help the most but I was never symptom free by any means. All the while I was on random doses of prednisone. That was the only drug that truly seemed to relieve my problems. But the side effects were too much and I was taken off. After being fed up with nothing working I stopped all meds and surprisingly achieved remission for 6 months. I didn't change any of my habits.
It has now been over a year since remission and I've been having a bad flare for awhile, with no medication. It's time for me to go back to the doctor but my next step was Remicade and I'm terrified of starting it.

Are there any other options for me besides Remicade?
Should I start the process of those lower dose medications again and see if they help this time ?
In the mean time is there any diet I can try to help relieve my symptoms? I want to enjoy my meals again!

UC has kept me from moving off to college and even taking on new job offers. I want to regain my freedom!
Sorry for the long post, but please any advice is welcome!
Thanks!
Posted 1/2/2014 6:34 PM (GMT 0)
I wish I had some for you. It looks like there are so many diets....its a bit overwhelming. There are lots of people here with great ideas and patience, so hopefully they can hook you up!
Posted 1/2/2014 6:55 PM (GMT 0)
SCD diet is a good place to start. Lots of information on the web and in the book,, 'breaking the vicious cycle'. The diet did not help me but there are many others that it helped greatly.

Also, biologics can be pretty scary, especially the unknowns about future side effects. You have to decide if your quality of life right now is worth staying off the bigger guns. If UC is preventing you from acheiving then you might want to consider them. Good Luck!!
Posted 1/2/2014 7:15 PM (GMT 0)
What exactly terrifies you about Remicade? I ask this because side effects are extremely rare with Remicade. What you need to do is balance the risk against the benefit of Remicade helping you. The odds of Remicade helping you are 60% of uc patients initially feel better after taking Remicade. The odds of Remicade giving you lymphoma are 6 in 10,000 (or 0.006%). For uc patients on 6mp, the odds of lymphoma are 4 in 10,000 (0r 0.004%). The odds of the average person walking down the street (no meds, no uc) are 2 in 10,000 (or 0.002%).

A good read is "Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases" by the Crohn’s & Colitis Foundation of America:

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Remicade was approved for use in the USA in 1998, 16 years ago, so there is a good amount of historical data on it.
Posted 1/2/2014 9:00 PM (GMT 0)
I would do what you did before.
Posted 1/2/2014 10:09 PM (GMT 0)
Well for one thing just the side effects of remicade and where it comes from just sounds so scary and foreign. Also 6-mp caused me to get sick quite often obviously and I'm afraid remicade would do the same. But the main reason right now is I have no insurance and remicade is not cheap.. I'm in the process of trying to get a new policy but it doesn't have the best benefits. I just don't want to struggle to pay for something I'm already afraid of taking..:(
Posted 1/3/2014 6:24 AM (GMT 0)
Also as far as food and diet goes, I feel like whatever I eat causes horrible systems. Some days a glass of water can send me running to the bathroom. I'm sure I'm low on all sorts or vitamins but every brand I've tried upsets my stomach. Is there another way to help that? Because I'm not getting any nutrition from the foods I eat either
Posted 1/3/2014 4:18 PM (GMT 0)
remicade saved me! i was scared of it too at first but i havent really had any side effects. i think most people dont get any side effects. in 2012 i had 3 flares in a row and on top of that having to take care of a newborn baby. they tried to give me 6mp but that alone couldnt keep me out of a flare. i started remicade in april 2013 and ive been in remission eversince. i dont regret whatsoever going on this med because i actually get to enjoy doing things with my daughter.
Posted 1/3/2014 9:52 PM (GMT 0)
I'd recommend Paleo.
Posted 1/4/2014 12:00 AM (GMT 0)
Apply for remistart.
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