Am I Lucky, or is the worst to come?

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Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 1/27/2008 1:03 PM (GMT -7)   
 
 Have been reading the posts on this site for about 2 weeks now. (Just found site). I must admit and I truly don't want to sound mean, but they scare me. I was dia. with Pancolitis in March 2004. Never really knew what UC was until it hit me. Totally out of the blue. After I was dia. I was put on Colozal 3 tabs 3x a day. I went into "Remission" in about 3 months and have stayed there ever since. I now take 6 tabs a day as a precaution as per my GI. I, (thank God) have never really experienced the type of "Flares" described here (YET), and hopefully never will. I do admit however, that it's always on my mind. Very upsetting. You all seem to be a very supportive group and I admire your strength.
 So, am I lucky, or is the worst to come? Has anyone else had this happen to them?
  Good health to all, and thanks for letting me vent. As stated it is always on my mind.
                                                                
 
                                                   Cozy

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/27/2008 1:26 PM (GMT -7)   
Staying on your maintenance drugs should help keep you from flaring (even while in remission), especially severely, maintaining a healthy diet and regular exercise as well as taking a good probiotic daily can also greatly increase your chances of staying healthier.

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


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 1/27/2008 1:27 PM (GMT -7)   
I hear what your saying I was pretty suprised by how badly some people here were dealing with their UC.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


bk1579
Regular Member


Date Joined Sep 2007
Total Posts : 100
   Posted 1/27/2008 2:20 PM (GMT -7)   
I am also very fortunate...I have never had any of the severe symptoms that many people have or have had in the past...I wonder sometimes if I really do have UC...I read on here all the time (almost every day) and I read about all of these terrible symptoms that people have and I thank God I don't have all that...Not to say I will never have them, but so far, I have been very fortunate...

28 Yrs old
Dx UC 3/07
4 Asacol 3x/day (when I remember to take them)
5mg Prednisone
Remicade (only had three infusions)
Fish Oil supplements
Multi-vitamine
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 1/27/2008 2:29 PM (GMT -7)   
I, too, am blessed to have a relatively problem-free experience with my colitis. Relatively. I've had a couple of flares over the past six or seven years since diagnosis, and while they can be upsetting and cause me lots of problems, I am so fortunate that I don't have the problems that some folks here deal with daily. I just cannot imagine.

I agree with what someone else suggested, that by staying on your maintenance meds, you have afforded yourself the best possible hope of staying well.

I only wish my fellow posters here could have as much success as I have in keeping this monster caged.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/27/2008 2:37 PM (GMT -7)   
Yes, you're lucky, and hopefully you'll continue. A small percentage of people never have another flare after their diagnosis. Keep taking your meds to help increase the chance of this. Even if you do have a flare, for most people they're not too long and easily managed with drugs. Naturally, people who hang out on the message board tend to be those who either have or have had really bad flares. Most people don't come around as often when they're feeling well.

So at this point, you have every reason to be optmistic. Don't let our war stories make you too anxious.
Judy
 
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


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 1/27/2008 2:39 PM (GMT -7)   
Remember the people on this site are not an unbiased group in relation to how bad their symptoms are. By the very nature people who have problems and who are new to UC will frequent sites like this and post their questions and comments.

When I first used this site I remeber a comment from someone "if 60% of UC cases are mild then where are all the people with those mild cases on here"

which got the answer

"living life normally and not having time to worry nor post about their UC".
800 mg Asacol a day
500 mg Asacol suppository now and then!
Fibre supplement, Iron supplment,Probioitcs
Balanced Diet, Reduced Stress
 
"There is no greater tragedy in life than doing nothing for fear of doing too little. May you live all the days of your life."
 
 
 
 
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/27/2008 7:34 PM (GMT -7)   
I think it's awesome that things are going good for you! :) But I have to agree with the others. If your life is good then please (don't take this the wrong way) stop reading these posts unless you have something on your mind. What you are reading are the ones that have had a rough go with their Uc but it doesn't mean that you are going to have it as rough as some of us. Consider yourself lucky and go live your life! :) But we are always here for you if the need arises.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2201
   Posted 1/28/2008 8:39 AM (GMT -7)   
My advice would be to learn as much as you can about promoting and maintaing digestive health and take good care of yourself so you can PREVENT major flares, rather than reacting to them once they happen. This would be a better approach than sitting back waiting for the other shoe to drop. I would highly recommend you check out the book Optimal Digestion.

A healthy diet, active lifestyle incorporating cardio and weight training, maintaining optimal weight, taking a regular probiotic supplement... all of these things can help you maintain your current state of health.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


*Jen*
Veteran Member


Date Joined Jul 2005
Total Posts : 514
   Posted 1/28/2008 10:17 AM (GMT -7)   
The exact same thing happened to me during my first flare. You want to read as much as possible about this disease and you start freaking out that your UC is going to turn into this and that you will have to have surgery, blah blah blah. I've had UC for almost 5 years. I've had 4 flares, one because I stupidly thought I "didn't have UC anymore" and got off my meds and 2 because of pregnancy hormones. Other than that I lead a relatively healthy, normal life. I eat pretty much what I want. I take my meds. Life is good! Even some doctors scare you into thinking that UC is horrible. I went to a UC specialist and she had a med student there that saw me first and he was so used to seeing people who had horrible UC problems that he scared me pretty badly. I wish there was more information/statistics on the folks that have mild/moderate UC and how long the regular maintenace drugs worked for them. Asacol has been great for me and I am just wondering if/when it will just suddenly stop working. Great question!

Just know that there are folks like you out there and please KEEP TAKING YOUR MEDS!!!
Diagnosed: 
Officially Diagnosed with UC in June 2003.  Have had stomach issues since 1989.  Unknown if they are related or not.  Have mild/moderate UC.  Have had 4 flares, the last one caused by hormones from stopping breastfeeding.  Currently back in remission!  Only taking 6 Asacol a day.   Will take Rowasa enemas as needed. Colozal did not work for me.  Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!
 
 


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 1/28/2008 12:20 PM (GMT -7)   
On average (and i stress this is on average) if you don't take any maintenance drug you have a 1 in 2 chance of a flare over a 12 month perdiod. With Asacol you have a 1 in 3 chance of a flare over a 12 month period. So Asacol offers (on average) "15-20% extra protection" to you per year.....on average!!
 
With reference to princesa's comments above I'd also like to mention that of all the people who write regularly on this forum I find princesa's comments to be the most informative, balanced, intelligent and most commen-sense driven. The advice is always excellent for newbies and those who ask questions about their UC. Neither are his/her comments biased. I find his/her additions to the site very helpful.
 
I think we should have a regular prize for the contributor of the month!
 
D
 


800 mg Asacol a day
500 mg Asacol suppository now and then!
Fibre supplement, Iron supplment,Probioitcs
Balanced Diet, Reduced Stress
 
"There is no greater tragedy in life than doing nothing for fear of doing too little. May you live all the days of your life."
 
 
 
 
 
 
 

Post Edited (damo123) : 1/28/2008 12:26:46 PM (GMT-7)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/28/2008 12:49 PM (GMT -7)   
UC is unpredictable at best. Even with staying on maintence drugs and leading a healthy lifestyle you are not guaranteed from flaring. You might live the rest of your life in remission, or have very few incidents of flares, or you could end up having to opt for surgery. There really is no way to foresee what will happen. The best you can do is follow your GIs advice and take advantage of each day of life that you feel well.

Sue
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
 

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