does your experience support this Mayo Clinic statement?

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Veteran Member

Date Joined May 2007
Total Posts : 528
   Posted 2/22/2008 5:02 AM (GMT -6)   
hey all. 4:30am and am wide awake for some reason. Thought I'd do some UC research since my GI recently told me he thinks I may have left-sided UC, not pancolitis. I was looking at the difference between the two, and stumbled upon thie statement from the Mayo Clinic.

"The course of ulcerative colitis varies, with periods of acute illness often alternating with periods of remission. But over time, the severity of the disease usually remains the same."

Do you agree that the course of the disease usually remains the same over time? I heard the head of the GI clinic at UNC-Chapel Hill say the same thing last year. specifically, he said that the first year after diagnosis can be tricky, getting the meds sorted out, but that, after that, whatever course the disease takes for the next 3 years is usually representative of the experience with the disease that you are likely to have forever. In other words, if, during those first 3 years, your disease is stable and you're in remission, you can likely expect long periods of remission and not too much UC activity. But, if you're often flaring during those first few years, you probably will continue to flare frequently, forever. does your experience with UC support these claims?
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!

tooth fairy
Regular Member

Date Joined Jan 2008
Total Posts : 98
   Posted 2/22/2008 8:00 AM (GMT -6)   
I can't speak for the remission stuff, since I've only had my diagnosis for 18 months, but I had a second colonoscopy that showed my current flare is just in my rectum and a bit of my sigmoid colon. My first scope was pancolitis. My GI said that my primary diagnosis is still pancolitis, but that this flare is limited to the bottom portion of my colon-which to him meant that my current med regimen was effective in controlling the bulk of my disease. I had an 8 month remission with the imuran last year, which is my longest since diagnosis. Wow, if this research says I can count on an 8 months good, 6 months bad pattern, I want to start talking surgery! Thanks for the mayo clinic info.
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Still on prednisone (10 mg) taper, two more weeks
Experimenting with low residue diet, live culture yogurt and probiotics

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 2/22/2008 8:41 AM (GMT -6)   
Since it took more than four years to achieve remission, and I've now been in remission for two, no. But they're speaking of statistics for thousands of patients, and my body never does the typical thing. I'm hoping this applies to the first three years after you get into the first remission, though.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
Co-Moderator UC Forum

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 2/22/2008 9:02 AM (GMT -6)   
I had left sided colitis. I was diagnosed during a minor flare and had complete remission for 10 years. At year 10 I went into a severe flare (totally from scratch, flare did not go from min to severe but straight to severe) and ended up losing my colon after a 2 year battle. I did nothing (like dropping maintenance meds) to induce the last flare. I really do not believe that doctors know anything more about UC than you and I. I have met hundreds of others who have had very mild or minimal disease over long periods of time only to end up losing their colons.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 2/22/2008 10:03 AM (GMT -6)   
I was extremely ill for the first couple of years - weight loss, constant pain, constant D and bleeding. Now that I've learned how to manage my condition, I only experience very mild flare ups of symptoms. I haven't had any bleeding in years.
Diagnosed with ulcerative colitis spring 1999.
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.

Veteran Member

Date Joined Jan 2007
Total Posts : 1015
   Posted 2/22/2008 10:12 AM (GMT -6)   
When i was dx'd it took almost three years to get it fully under control. I then had a five year remission. Now I am at about 18 months with this flare. The severity of the flares is about the same. I don't really get mini flares or anything. If once i get into remission i flare like this again I wll have surgery. I am hoping that I won't have a flare as serious as this or my first again. If what you heard is true I should expect my next flare to be just as bad. But I have hope that it isn't true.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08
Prontonix once daily for acid reflux, zofran twice daily for nausea

Veteran Member

Date Joined May 2007
Total Posts : 528
   Posted 2/22/2008 11:44 AM (GMT -6)   
I feel like sharing this info was kind-of a bummer, so I apologize if it bothered anyone. as Judilyn said, it's statistics, which is way different than real life. anyway, thanks for sharing your experiences.
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Cortfoam in AM, Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!

Old Hat
Veteran Member

Date Joined Feb 2007
Total Posts : 5190
   Posted 2/22/2008 12:57 PM (GMT -6)   
The jury is still out on predictable patterns, I think. As Judy writes, there are so many individual differences that can come into play, like reactions to specific meds and/or drug combos. Some inferences can be made during the 1st yr in treatment based on response or non-response to basic meds like 5-ASAs. I know someone in 20+ yr med-free remission from fistulizing Crohn's who believes that IBD patients have "triggers" that bring on flares & that identifying these (foods, antibiotics, etc.) so as to avoid them + developing a personal stress management program are the keys to achieving true long-lasting relief from our ailments. This person believes that divorcing her irritating hubby, scrupulously eliminating all chocolate permanently from her diet, plus exercising at frequent lap-swimming sessions enabled her to completely overcome her form of IBD. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Elite Member

Date Joined May 2003
Total Posts : 30993
   Posted 2/22/2008 1:28 PM (GMT -6)   
There are so many variables regarding type of meds, patient recognition of symptoms, tolerance of symptoms, consistency of med usage, misdiagnosis...etc, that the statistics could mean very little in the real scheme of things.

I think the best defense is to keep inflammation as low as possible no matter where it's extended to...and to protect all the areas above.

From what I've seen on here...there are many who have had original diagnosis with UP and it's spread to pancolitis in a fairly short period of time. Could it be because of initial meds or lack of meds initially? who knows. would be obvious if your whole colon were affected through a c-scope and biopsies. Were you diagnosed originally through a c-scope?
If yes, your original diagnosis would stand, and that now you're at left-sided probably now that you're goes in a bottom-up spread pattern, top-bottom healing pattern.

I've never been as bad as my original doctor did say that statistics state that I might never have it extend past that point...but I'm on Asacol to help keep everything above that clear just well, because it can help prevent cancer..that's an added plus to keep on the meds.

I do treat any flare symptoms flares are very minimal, but still obvious.

*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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