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Can UC get worse?

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Posted 1/11/2009 10:10 PM (GMT 0)
Hi All,

Can an individual's UC get worse as time goes on.  For example, if you are diagnosed with rectal inflamation can it spread to pancolitis over time?  Also, what may affect that (is this known)? 

Thanks

Posted 1/11/2009 10:18 PM (GMT 0)

I'm sure it can. My guess is that there will be examples of this in here.

It's my biggest fear as I am also "only" affected in Rectum. However I can tell you that I've had it since 1999, og still no major spread knock-on-woods !!!)

Still why take the chance? that's why I am here in this forum - to look for dietary recommendations !!

Posted 1/11/2009 10:18 PM (GMT 0)
Yes, in some cases proctitis can become left-sided or even pancolitis. Some people report this has happened after they discontinued medications when they reached remission, but I'm sure there are others in whom it spread even though they took the meds as prescribed.

The inflammation of UC in any flare almost always starts in the rectum and spreads upward. So people who have had pancolitis diagnosed with previous flares could show only proctitis on the next flare, especially if they treat early and effectively to prevent the inflammation from getting worse and becoming generalized. This why you will see so many people here who start or ramp up rectal meds whenever they feel they may be starting to flare.

On the other hand, there are those of us who have proctitis or left-sided UC who have horrific flares and yet the inflammation never spreads beyond the rectum or descending colon. Why? I'm not sure anyone knows that.

Posted 1/11/2009 10:33 PM (GMT 0)
It can vary from flare to flare for each patient but there are definitely patients that just simply have severe or moderate or mild cases throught their life with the illness, it's a very individualistic disease but researchers do say that they have found genes that actually predict the severity and behavior of the disease for each patient over time.

:)
Posted 1/11/2009 11:37 PM (GMT 0)
I think mine may have spread over time. I began with proctitis but recently my symptoms have gotten worse. I haven't been able to get a colonoscopy to confirm whether it has spread or if the inflammation is worse. Not quite sure what the story is but I remember reading statistics on this in the past. Only a small percent of people with proctitis end up with inflammation in other parts of their intestines. I wish I could find the #. I think it was between 10 and 20 percent. Maybe someone will find the source of that info.

I thought mine had certainly spread but after reading posts by others with proctitis and their symptoms, I think I could still have proctitis but the symptoms are effecting me more for whatever reason. Maybe I just didn't treat it enough and it's gotten worse.

Posted 1/11/2009 11:51 PM (GMT 0)

I believe I am an example you are looking for.  May, 2008, a colonoscopy showed me to have proctosigmoiditis - rectum and up left side - forgot how far.  I took several medications and rectal meds and because I became sensitive to them had to stop all mesalamines which were helping.  Then my gastro doc wanted another scope to see how it was and how to treat it further - if I needed strong drugs or steroids, etc.  He did another scope in November and found it now confined to rectal area.  He said it starts in rectal area, moves up and usually heals from top to bottom. Rectal area, however, is so often the hardest to get healed and into remisiion.  My next move is hyrocodone enemas starting next week for two weeks at least.

I am 68 and have IBS and a sigmoidocopy (first 5 feet of colon) about 8 years ago showed no sign of UC.

ElaineNY

Posted 1/12/2009 2:41 AM (GMT 0)

And UC that spreads doesn't necessarily mean it's worse.  My UC was limited to my rectum but yet still severe enough to warrant surgery.  I think what's more important than the degree of disease is the need to keep inflammation down and periods of flares to a minimum.

Sue

Posted 1/12/2009 2:52 AM (GMT 0)

Yes, Sue - you are so right - even a small ulcer can be deep and very dangerous.  I ask my NP about just "living" with what I have since I could do that at my age.  She said that is dangerous and spreading could mean more than surgery! 

ElaineNY

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