So I'm 23 and I have ulcerative colitis. I've had it for about maybe 10 yrs now. The doctors started trying me on different medicines about 2-3 yrs ago now and I've tried, it seems like, everything under the moon. Asacol, Colazol, Imruran, Rowasa, and I was on Prednisone for a little over a year and a half. All of those meds made it worse or made me sick to my stomach, or gave me some sort of pain... since then I've been on Remicade for a year now. I like it, ya know have a occasional episode if I stress myself out way too much but other than that its been wonderful. BUT my new insurance doesnt want to cover all of it like my old insurance. So Im stuck paying $400 out of pocket. AND I CANT AFFORD THAT!!!
So I went to the doctor on thursday and of course we talked about our other options and he seems to think that there is only 3 things.
1.) I can try this shot thats out on the market, but its still really expensive 2.) I can go back on prednisone and try to maintain a specific diet, but I really dont want to do that!
3.) I can have surgery to have my colon removed. And Im only 23 I dont want to do that....
So right now Im completely confused and scared. I dont know what to do. I was thinking about maybe getting another oppinion but the dr Im with now was my original 2nd oppinion. The other thing I dont get is why cant I come off of the Remicade if I've been in remission for so long??? I figure if I get sick again then we can go back to meds...
And why would our last alternative be surgery? I mean I want to have children and go back to school, wouldnt that put a hold on my life? Would I still be able to have children??? I would have asked my dr all of these things the other day but after he told me there wasnt much we could do I just started to cry and wasnt able to think of the questions I had.
Re: Down to my last alternatives with Colitis...HELP!
You will be able to have children, so don't even think that is out of the question. I would also see if you could get a 3rd opinion about everything. A diet change sounds like its needed though. I would also look for a dietician to help you plan out meals. It will seem hard at first but it will eventually be your way of life, and become natural.
Re: Down to my last alternatives with Colitis...HELP!
Harry,
Thanks for that option! I found the website that offered info on it, I guess I've never thought about using a vitamin type medicine. I'll bring it up to my dr. Have you tried the VSL medicines? If not how do you know about it? Just a little curious about it and other people!
Re: Down to my last alternatives with Colitis...HELP!
ainedwyn,
I first read about VSL3 being used to help IBS here on the IBS board.
There is a Sticky thread at the the top of the page on the IBS board -- "95% Improvement with VSL3" started by cathy1 on 7/31/08 - just a little over a month ago.
I have since done some research about VSL3 and found that it is also useful in curing UC.
A member (ThankfulCOLO) has since posted on that thread with UC-- on page 3 post # 12 and had UC and was having bloody BMs 22 times daily and went to the ER at a hospital to die. He was being treated with high doses of steroids. And, he changed his diet and started taking VSL3 -- and now is in complete remission from UC.
Of course the Hospital personnel never heard of this probiotic supplement that contains 8 active friendly bacteria culture strains that help your intestines function properly but he got some samples from his GI doctor. And has not bled since! He is one happy dude-- he says.
There is alot of information available online about VSL3 an Option I think you would be extremly intrested in it not just a little curious. I think the Options your present doctor gave you are not at all complete- At your age there has to be a better way. Removing your colon is a very significant life changing event!!
I have been on the Bowel boards for almost 9 years -- I have read alot about IBS, Bowels disorders and Digestion as well as shared my experiences on these boards.
I have had hemorrhoid surgery, gastritsis, acid reflux, candida/yeast infections gallbladder removed and
had 2 1/2 feet of my colon removed on 3/4/02 because of chronic diverticular bleeding. I have had IBS but under control with diet and fiber therapy. Have not had UC or Crohn's. But-- been here with suggestions when I think I can contribute.
I wish you well---Harry
Last edited by Harry; 09-13-2008 at 11:25 PM.
Reason: Typos
Down to my last alternatives with Colitis...HELP! 
I mean I want to have children and go back to school, wouldnt that put a hold on my life? Would I still be able to have children??? I would have asked my dr all of these things the other day but after he told me there wasnt much we could do I just started to cry and wasnt able to think of the questions I had. 
