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Ulcerative Colitis
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Posted 10/25/2009 10:07 PM (GMT 0)
Long story --try to make it short...

When I was 47 I was hit with UC----stayed in a flare for nearly 4 yrs.

During that time was under extreme stress.

No drugs worked....and I mean none!

Fast forward 5 yrs.

Have been on 6-MP and Xanax.

Flare free for 2 yrs and counting.

The funy thing is---I feel like pre-UC....I'm THAT normal!

Question of the day-----Is it possible this is a 1 time deal?

Can I be rid of the disease for good?

Keep thinking in the back of my mind that I don't need the drugs anymore.

Your thoughts????

Posted 10/25/2009 10:11 PM (GMT 0)
I don't know if the 6-MP is like Remicade, where you can't stop it and then start it again if it turns out you need it.
That's the only reason it wouldn't be worth a try, in my view.
Posted 10/25/2009 10:17 PM (GMT 0)
Everyone is different when it comes to IBD, but one thing's for sure, once you have it, you have it, it can go into remission for yrs even decades but that doesn't mean it's gone for good.

:)
Posted 10/25/2009 10:44 PM (GMT 0)
Intermittent rectal bleeding, crampy abdominal pain and diarrhea can be symptoms of ulcerative colitis. Ulcerative colitis characteristically waxes and wanes. Many patients experience long remissions, even without medication. Ulcerative colitis may mysteriously resolve ("burn out") after a long history of symptoms.

Post Edited By Moderator (Admin) : 8/7/2010 11:04:24 PM (GMT-6)

Posted 10/25/2009 10:50 PM (GMT 0)
BTW, you should NEVER stop taking your meds.  They are the reason you are in remission and feeling good.  My DD doctor told me people feel good and start thinking they do not have the disease and stop taking their meds, this is the number one reason people come out of remission and into a very bad flare. 
Posted 10/25/2009 10:51 PM (GMT 0)
It's certainly your choice as to whether you want to try to make it without medication. Knowing that this is a disease of flares and remissions, I would simply suggest that you weigh the benefits and potential consequences.

Often when people flare after stopping medication, it can be very hard to get back into remission. Are you prepared to face another four or more years of symptoms?

Have you had a recent colonoscopy? That could help to determine whether your colon is healed. You should have periodic scopes anyway, because we do have a somewhat increased chance of developing colon cancer.

There are a very small number of people, I've read, who never have a second flare. However, I don't know if that refers to people who remain on medication or those who don't.

Good luck, whatever you decide.
Posted 10/26/2009 11:52 AM (GMT 0)
First, I would like to thank all the members of this website for all the information I have received from reading your posts. Your willingness to share your experiences has helped others more than you will ever know.

After almost two years of lurking on this website, your post is the one that prompted me to register, Capt. Chuck! My husband had his initial flare and was diagnosed with UC about 15 years ago. Was put on Sulfasalazine, Folic Acid and Prednisone, the flare was brought under control within a week or two (and he was tapered off of the Pred) and he has not had a flare since. All of his colonoscopies now show no sign of UC at all. As the years went by he started to taper the sulfasalazine on his own without consulting his doctor.....and a few years ago he decided to stop taking it altogether. He started feeling a flare coming on (gastro pains, more frequent trips to the bathroom), and before it turned into a full-blown flare, went back on his meds (the Sulfasalazine and Folic Acid). He currently takes two 500MG tablets of Sulfasalazine once a day and 1 mg folic acid. Not a huge amount of medication, but it works to keep him in remission.

My 14 year old daughter also has UC, diagnosed in December 2007, she has it much worse than my husband and we are still waiting for a remission for her. She has tried pretty much every UC med and some of them seemed like miracles at first but the UC always manages to find a way to come back in worse ways than before.

I don't think you should stop your meds, Capt. Chuck, they are probably the reason why you feel so good! And I think 6MP would be a very difficult medication to mess with...it takes months to build to the level you need, if you were to stop taking it I don't know how soon it would start working again if you needed to start back up.
Posted 10/26/2009 2:40 PM (GMT 0)
I used to think the same thing, its gone. its never coming back....i was in remission for over 4 years. then 2 months ago bam. some blood, etc, etc... i forgot what a flare was. i was totally off meds for years. Im pretty close to remission again but i thought it was a one shot deal and i was cool.
Posted 10/26/2009 2:51 PM (GMT 0)
I was in remission for 13 years, no maintenance meds, it settled into irritable bowel (mostly constipation) instead, and the UC came back after a long and harsh round of antibiotic treatment.
Posted 10/26/2009 3:41 PM (GMT 0)
I've heard too many horror stories where people went off their meds after being in remission for a while, only to have a flare start up, and then have the meds that worked before (such as Asacol or 6MP) no longer work, so they had to move on to stronger drugs like Remicade or have surgery. No way will I ever go off my meds. I'm enjoying remission right now and feel COMPLETELY normal. I won't risk it.
Posted 10/26/2009 6:52 PM (GMT 0)
I was in remission for 5 years and I thought my UC was history but it came back and I have never been in remission since
Posted 10/26/2009 10:28 PM (GMT 0)
thanks for your replies--I will stay on my meds...
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