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UP now UC... now what?

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Ulcerative Colitis
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Posted 10/9/2012 5:55 AM (GMT 0)
I was diagnosed with UP in February of 2008. I "flared" for about 3 months and then went into remission. I thought I was done with it forever and even questioned the skill and education of my GI. I started passing blood again about 2 months ago and went in for a full colonoscopy 2 weeks back. Now I have colitis in the left colon and I am wondering if I am on some glacial voyage to toxic mega colon? It is as if the disease is creeping. Curious if anyone else has experience with this? Am I looking at another 4+ years in the sun before I wake up with full on UC? Thoughts??
Posted 10/9/2012 10:47 AM (GMT 0)
That is how mine started but it took a long time to spread to the entire colon.  Maybe 10+ years.  I suppose it's possible that your UC won't spread if you can maintain remission?
Posted 10/9/2012 11:33 AM (GMT 0)
bull4t,

Welcome to the forum.

I am so sorry that your proctitis has spread into UC.

WHat had put you in remission from the procticis?

And have you been on meds (if so which ones) all this time?

IMO, if you are proactive and control various factors, you could get this under control. It's not a given that UC progresses further.

Are you on any probiotics?

Any supplements?

What are your vit. d3 levels like?

Posted 10/9/2012 11:55 AM (GMT 0)
it's pretty common for proctitis to turn into UC. that's what happened to me, too. it took 4 years for this to happen, but once it started, it got bad. a little left sided inflammation turned into pancolitis after i did 3 months of mesalamines- very bad decision.

if you can get a handle on what helps your flares or makes them worse, it might not get bad.
Posted 10/9/2012 1:21 PM (GMT 0)
Did you stop your meds? If so, I have to say I'm not surprised it'll spread. As for how likely it is that it'll spread, who knows? Sometimes it does, sometimes it doesn't. And I was diagnosed with pancolitis and still have only had one flare. However, I am very dedicated to taking my meds.
Posted 10/9/2012 1:52 PM (GMT 0)
Ahhh one of the great mysteries of having Uc - will it spread or not? No one really knows if it will spread, how bad inflammation is going to be or how long a flare will last. It's like the colon is an ill tempered little child.

I was originally diagnosed with UP, but because I didn't take my meds like I should have, it spread to left sided. I don't know if it would've happened anyway, meds or not.

Are you on meds now?
Posted 10/9/2012 3:11 PM (GMT 0)
I was originally diagnosed with UP. Then I developed skipped inflammation (cecum and ileum). Now I no longer have UP or cecum inflammation, just ileum.

What the?
Posted 10/9/2012 3:41 PM (GMT 0)
UC can spread. Once diagnosed, mine just kept spreading and spreading despite good med adherence. I've heard of others that have had just UP for 10 years or more.

The best thing you can do is take control - take your medication, if you start flaring stay on top of getting it treated, and if you think it will help look into alternative approaches such as diet modification.
Posted 10/9/2012 8:19 PM (GMT 0)

Thanks for the responses. To be perfectly honest I never took any meds when diagnosed with UP. I have been an extremely hard drinker for 8+ years. I never even slowed down when going through the initial flare up with UP. Drank right on through it - up to a full pint of 80 proof per day. I guess if anyone deserved UC it would be me. I have never even tried to live a clean life.

So... now I am 42 and the one silver lining to this is that I have stopped drinking, 3 months, and started thinking. The GI put me on Balsalazide, taking it for 4 days now. Not sure it does much, but 4 days is hardly a bench mark.

I was curious if any of you could recommend a starting place for affecting remission? Is listen to your gut worth the cost? It seems that everyone is unique in what has put them into remission?

Posted 10/9/2012 8:46 PM (GMT 0)
Don't blame yourself for getting UC. Alcohol (even hard drinking) is NOT going to cause you to get UC.

There are people on here that developed UC despite being very healthy individuals - athletes, vegetarians, vegans, other types of clean eaters.

However, some people find that diet, alcohol, and coffee can influence their disease severity. These things are not the cause, but possibly an influence. Watching you diet and alcohol intake is great for overall health though.
Posted 10/9/2012 8:57 PM (GMT 0)
You need rectal meds in addition to the oral meds. Listening to your gut is always a good idea, but I don't think it will get you into remission without staying on your meds.

Glad you stopped drinking and started thinking!
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