long-term outcomes with UC?

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/24/2009 10:45 AM (GMT -6)   
hi people! so after being refused my infusion last week, I'm scheduled to go again tomorrow. The past few days/nights have been a drag, pretty uncomfortable. So getting the infusion a week later than usual really makes me see just how dependent I am on the Remicade. So I got to thinking about long-term outcomes with UC- does anyone know of any quick stats/info? Like, what percentage of people go into remission eventually, clinically? I know the percentage for surgery is 30-40, but at what point do these people opt for it, after XXX amount of years, or after dysplasia shows up or when? Obviously I'd prefer not to have surgery- but I'd also like to know some #'s!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/24/2009 10:54 AM (GMT -6)   
It's likely too individualistic to give you any concrete answers that you're looking for...according to the CCFC there are a cluster of at least 9 different genes that define the severity, behavior and development of IBD. As far as the surgery Q, that might be hard to pinpoint as well, since everyone has their own breaking point of deciding it's time for surgery.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/24/2009 11:07 AM (GMT -6)   
 
well the first section of this article is sort of what I'm looking for. The rest is interesting too!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/24/2009 11:09 AM (GMT -6)   
Do you have to be a member to see that link?
UC since 1996 (age 20)
Mommy of 2 sweet little girls.

Asacol (12/day)
Azathioprine (175 mg)
Prednisone (currently 80 mg)
Rowasa nightly
Immodium daily
First Remicade 6/22/09 [discontinued 8/12/09, not helping]


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/24/2009 11:15 AM (GMT -6)   
isn't that weird! I googled longterm outcomes in UC, & that was one of the results. I was able to read it fine- then, when I copied & pasted the web address you get the member log-in request! I'll try to cut & paste the text instead, just the first part.

Why Is Maintenance of Remission Therapy Necessary?

Ulcerative colitis is an idiopathic chronic inflammatory disease of the colon with clinical symptoms of rectal bleeding and diarrhea. Epidemiologic studies in patients with ulcerative colitis have reported that over 90% of patients have symptoms of active disease during the first year following diagnosis, and that in subsequent years, approximately 50% of patients will be in symptomatic remission in any given year, with the remainder of patients either having active disease or having undergone colectomy. If the window of observation is widened from 1 year to 5 years, then 25% of patients will have disease continuously in remission over a 5-year period, 18% of patients will have continuously active disease, and the remaining 57% of patients will alternate between symptomatic remission and relapse. Thus, without maintenance therapy, the majority of patients will experience symptomatic relapse over a 5-year period. In addition to clinical symptoms that patients experience with relapse, relapse also puts the patient at risk for colectomy and colorectal cancer. The 10-year cumulative risk for colectomy in patients with ulcerative colitis ranges from 9% to 21%. After 30 years from diagnosis, the cumulative probability of colorectal cancer in patients with ulcerative colitis approaches 15% to 20%, as compared with less than 5% for the general population. Chronic endoscopic and histologic inflammation is a risk factor for ulcerative colitis-associated colorectal. cancer. Maintenance therapy is indicated to prevent symptomatic and endoscopic relapse and to minimize the risk for colectomy and colorectal cancer.

well, that worked ok!  the rest of the info was all about maint. therapy with various meds, but intersting too.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/24/2009 11:28 AM (GMT -6)   
Very interesting! Thanks for cutting/pasting.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.

Asacol (12/day)
Azathioprine (175 mg)
Prednisone (currently 80 mg)
Rowasa nightly
Immodium daily
First Remicade 6/22/09 [discontinued 8/12/09, not helping]


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/24/2009 11:31 AM (GMT -6)   
so basically, stay on your maintenance meds! ;)
Lialda 4x a day (2x in the morning, 2x at night)
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes B-12, Vitamin D, Vitamin C) 1x a day
Diagnosed with Pancolitis (Moderate in 4/5th of the colon, Mild in 1/5th) in July 2009


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 8/24/2009 12:42 PM (GMT -6)   
have you done any surgical consults, yet, Eva Lou?  I have now and if nothing else, it makes me feel at ease knowing I have the green light to throw in the towel whenever I want.  I am trying phase 2 now of my last ditch efforts- my first was fecal infusions- that actually flared me a bit- and currently I am plugging away at human whipworm, which may take months to have any effect at all- so I'm not sure I am going to be able to hang in long enough to know.  But since Remicade is working for now for you, you do have more time to decide... But it would be a good time to get the consults out of the way for peace of mind if you simply get fed up.  I am just not quite there yet.
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, hookworms, maybe surgery this year REAL soon
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/24/2009 1:42 PM (GMT -6)   
I'm right there with you, probiotic- I've had 2 surgical consults, & actually had surgery scheduled, did my pre-ops, then cancelled like a week before the big date! So while I'm pretty ok with surgery, if it comes to that, obviously I'd rather not go that route. I just recently learned that I'm not a candidate for a jpouch, so that sort of shook me up a bit. While I had always leaned towards a perm ileo anyways, to hear that I can't even try a jpouch is sort of a downer. I totally agree that meeting with a surgeon is one of the best, most informative things you can do for yourself. The Remicade is sort of working- I'm on the max dose at the max dosing schedule, & I still have accidents at times! I get symptomatic around week 4 of my infusions. Prior to meeting a surgeon I was terrified of the whole deal- now I sort of look at it as a relief, most likely! The down time would be rough- I work, my husband does, we have a school age child....  about that article though- it is funny, we get a lot of posts from peole thinking about going off their meds- don't do it! I did it myself, was doing great on Asacol alone so figured I'd quit them. Big mistake! Big, BIG mistake.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 8/25/2009 7:21 AM (GMT -6)   
We sound in a very similar place, Eva Lou. Now, though I am considered a good candidate for j-pouch surgery, the 3 step requirement in my case has me freaked- not only that, but I went over to jpouch.org to check out 3-step experiences and see that every step was rough in terms of recovery. I also see the usual multiple posts by people whose post-surgery life is just like having UC. It is making me consider a permanent ileo, which I see you had been leaning towards earlier anyway. After all these years that jpouch surgery has been around, and it still sounds like a savage, 2 year reocvery ordeal for many... Such tough calls to make. That is why I am plugging away with worms (and low dose pred to buy time) one last time. Good luck with your own decisions. What made you pull out of the surgery at the last sec?


Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, hookworms, maybe surgery this year REAL soon
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/25/2009 12:45 PM (GMT -6)   
My Remicade dose was upped to the higher dose at a shorter dosing interval- after 1 infusion at that dose, I had to stop & ask myself "Are my symptoms bad enough to go thru with this surgery right now?" And the honest answer was no. The surgeon was totally understanding- I'd go back to him in a heartbeat if I need to. So now, about 16 months later, the Remicade is wearing off- I'm still on the high dose, etc, but only get relief for about 4 weeks. My reservations about a jpouch are similar to yours- getting your colon out is no easy surgery! I feel like I'm only good for one big surgery, not 2 or possibly 3. Plus, so many people get pouchitis, leakage, etc. My surgeon told me his patients come back to him & say "The UC has come back!", with pouchitis- and they're devastated! You do see a lot of people on jpouch.org who are still on pred, Remicade, Imuran, etc. Getting off these meds is a big factor in opting for surgery in the first place! Plus, when all is said & done, the ONLY reason to do a jpouch over an ileo is aesthetics- & I had to ask myself then, "Do I really care about how it looks that much, that I'd be willing to undergo 2-3 surgeries, & who knows how many other possible problems?". Again, the answer is No. If I do go for surgery, I want it done & over with, have my 6-8 week recovery time, & go on with my life. No pouch scopes, no leakage, no issues. I know not all people experience this, but the majority do- the surgeon I went to see recently about my fistula said that getting a jpouch is a huge lifestyle adjustment. I truly believe too, that in 25-30 years, the jpouch will no longer be considered the gold standard for UC surgery. Sooo..... I'm just pluggin' along, waiting for the Remicade to stop working entirely, then we'll see! I have to say though, that I fully expect to get my colon removed within the next 5 years or so.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 

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