Your comments please

I wrote a writer who wrote an article in the LA Times on UC. She mentioned to me that she had UC and sent me this comment.

"I outgrew it. It happens. UC, as you know, is an auto immune disorder and your body chemistry changes as you get older. This was a long time ago--at least 40 years ago. So perhaps I had the wrong diagnosis. But I am auto immune. I have psoriasis and my father had ankylosis spondilytis, which is an auto immune joint disorder. As you know, auto immunity runs in families."

Does this make sense?

Well, for a writer I think it's laughable that she said, "But I am auto immune." I mean, you'd think a writer would know that one can't be "auto immune."

I'd also be interested in seeing what she had to say in her article, so can you please post a link? :)

As for outgrowing UC, I think that's a bunch of crap and I think she was misdiagnosed, or was maybe diagnosed with "colitis" and not "ulcerative colitis."

I've met people who've told me they were diagnosed with UC at some point, had one episode and "outgrew" it. I figure they were misdiagnosed - or are in a long remission.

Yeah, my mom calls it a "condition"

I think I straightened her out.

That article is so full of misinformation that it's ridiculous!

No, you don't outgrow an IBD. It can go into remission for years but ultimately it's still there. Also as you age, your immune system weakens so that in itself might cause a long remission.

I'd say it's MUCH better that you spent your time straightening out your mom...that's wonderful she's more supportive. :)

I think her choice of wording "outgrew" is off, she's likely been experiancing remission, many people get one bout of a flare with IBD and then go into remission and can stay there for yrs and yrs, it's different for everyone, but "outgrew" is not the appropriate term, it would be remission. Great for her though, I'm just the opposite, ever since I've gotten sick, that's where I've stayed going on 19 yrs next month.

Well, considering that UC is a genetic disorder, it may be possible for your body to adjust itself.
This is one of the things that made me want to become a biochemist/biologist. I believe that there has to be some other way to treat UC other than Remicade/Humira. I think these drugs are good, but there has to be something else.

I get a lot of how are you feeling today. Because I respond well to pred, essentially I feel great. I wish they would say, "how are you managing today" That is more appropriate for me and shows greater understanding.

Quincy, yes. I originally wanted just "Serenity" but that was taken so instead of adding a number, I added the "Now" instead at the last second. That is my favourite Seinfeld episode.

...I think it's important to keep an open mind. The simple fact is we still really can't answer certain questions b/c there
are just simply no conclusive answers (except when your looking at gene's or hereditary factors)
If you look up U/C you will find that there are results that show different strains of the disease. I have read before that episode's of colitis
can happen only once. WISH THAT WERE ME!! LOL
But, it's important to remember as we always say...everyone is different. I just think it's also important to point out that although research
about U/C has progressed as of late...there is alot more to come. I think we should keep an open mind.

It's not the fact that she is stating that she has outgrown her Uc so to speak but rather that she can't seem to get her facts straight as to what IBD actually means. Her article in itself can confuse a lot of people that are newly diagnoed when it comes to Uc and/or CD. I mean, I understand where one can think they can outgrow or burn out their Uc because I truly believe that at a certain age some peoples immune system can slow down which in turn can cause spontaneous remission in an IBD patient (which makes them think that they "outgrew it or it burned out"). But I would think that if a reporter is going to state facts that she should at least get her terminology right. I don't know where she got her terminology from but I truly hope that it's not from a respected GI.

BabeintheWoods said...
How would we know about the long term remissions. Once UCers are 'cured' or at least in semi-permanent remission then they leave this forum and we never hear from them again. I have only been on this forum since January and my question is where is TAP, Nuffinbutttrouble, or lookingforthecure? They claim to be in remission without meds and I no longer see their posts.

Just for the record, I have never claimed to be without meds. I have continuously been on Asacol since the beginning of 1999. I don't think that it is effective since I have flared twice a year regardless but I continue to take it based on my GI's recommendation.

I will note that I have not yet had a flare this year which normally would have occurred in the February/March time frame. I give credit to the psyllium seed powder. I will post more information about my status after I get my colonoscopy results back although I don't have my colonoscopy for another week and a half.

As to the question of whether anyone has been cured of UC, until we understand what causes the disease, we won't know conclusively if anyone has ever been cured. Personally, thinking that someone has been cured and we just can't prove it yet is very uplifting.

I continue to read this forum but I had been off with my family in sunny and warm Orlando and Tampa over the past week enjoying a Spring break vacation.