does UC ever just "go away"?

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Euphrosyne_Rose
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/17/2009 9:10 PM (GMT -6)   
I am a 30 year old female who was diagnosed with UC/IBS back in 2002. After having all the usual horrible symptoms and problems, I finally saw a gastro doctor and had a flexible sigmoidoscopy that came back with no problems, just the confirmation of the UC diagnosis. I was put on Asacol 4x daily and prescribed the Rowasa enemas. Long story short, I've been on/off the meds for years now and last year finally had my first colonoscopy. The results came back fine and my Asacol was decreased from 3 pills 3x daily to 2 pills 3x daily. The misery I go through is partly my fault this past year b/c I am REALLY bad at remembering to take the medicine. about 2 months ago I was of course having some issues (the gas, bloating, cramps, urgency to go, etc) and having the usual horrible diarrhea and made a promise to myself to start taking my medicine regularly even if I had to set an alarm to help me remember. Now before, if I started to get better and stopped taking the meds, I usually had a window of about 2 weeks before it flared up again. After the last small flare up 2 months ago I managed to drop a ton of my pills down the sink and then got sick so I was unable to go right away to refill the prescription. I have yet to take any of the meds and I've had NO flare up, no issues whatsoever and it's been almost 2 months! The only little thing I've noticed is that I feel super bloated  even though I've been able to have normal BMs and very little constipation. I know it's horrible that I haven't taken my medicine like I should but I would have thought by now I'd be having a bad flare up. Any insight or suggestions or advice? Has this happened to anyone here? Thanks!

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/17/2009 9:51 PM (GMT -6)   

Ulcerative Colitis does not "go away" but it does go into remission.  Remission can be spontaneous and without using medication.  But most likely you will flare again.  I have met UCers who have had 20+ years of remission only to flare again.  The disease is unpredicatable.

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


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 6/17/2009 10:06 PM (GMT -6)   
I am very suspicious of Asacol for one in making people bleed and actually causing flares more often. I see more than once people state a similar story to yours. Look and see how many people on this board take Asacol and steroids to control bleeding, if Asacol works like it should they shouldn't need steroids or immune suppressors. I think the allergic reaction to Asacol are far understated than what is really happening.

Maybe your doctor will let you switch to Sulfasalazine or some other drug, and/or go with natural anti-inflamitories and diet.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 6/17/2009 10:55 PM (GMT -6)   
Sounds like you may be in remission or you were misdiagnosed. Were you diagnosed via a colonoscopy with biopsies? I haven't had any luck getting my UC to go into remission. My symptoms are managed but they would return if I stopped taking Asacol. I would probably continue to take Asacol even if I had a few weeks of not flaring without it. I am too worried about having a horrible incurable flare. I hope you continue to feel good.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 6/17/2009 11:33 PM (GMT -6)   
The fact that you are super bloated means that something is not right. What are you eating/drinking? Are you watching your diet, avoiding foods/beverages that are known to cause gas?
Joy - 47 yrs and counting; Colitis Dec 06 (also have IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

Lexapro (for stress), Probiotics and Vitamins, Anti-inflammatory foods, No pro-inflammatory foods when flaring, No HFCS, No foods high in fructose, No artificial sweeteners -- Fecal transplantation worked, Prednisone stopped working, Colazal stopped working, Asacol stopped working


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 6/18/2009 1:34 AM (GMT -6)   
E_Rose..welcome to the forum!

Well, what you're describing are actually "classic" early flare symptoms..low in the rectum inflammation.

You could wait until it gets worse, but the fact that you were actually maintaining a status quo in the past says it was working.

Inflammation doesn't spontaneously erupt...it's a process, and for some, symptoms are obvious, others not.

UC can go into a remission where many are able to go off their meds....only to go back on when they flare. The only "problem" is that there can be a consistent creeping of mild inflammation upward that doesn't have many symptoms until there are some and eventually consistent where the UCer seeks treatment...sometimes to have the entire colon affected.

I've used Asacol and Salofalk retention enemas for over 20 years, I increase the enemas during flares and taper for maintenance. So far, so good...so really, look at the long-term and what they "can" do for you now rather than having them being able to do nothing for you in the future.

In saying that...not all can use 5ASA meds...but it seems you've had success...hopefully, you'll listen to your body (and early symptoms) and start the meds sooner than later.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Euphrosyne_Rose
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/18/2009 8:22 AM (GMT -6)   
Thanks everyone. Actually, I was diagnosed after the first flex sig and biopsies I had back in 2002. I've had 2 more flex sigs since then and then last year was my first colonoscopy. I'm on my 3rd gastro doctor now. The first doctor prescribed Sulfasalazine which I took for about a year and then he took me off of it. He wasn't one of those doctors with a great bedside manner so I went to another doctor who prescribed the Asacol and the Rowasa which I couldn't afford at the time. I moved several years ago to a different city and found a doctor here where I live. When she did the colonoscopy and biopsies, she said everything was fine and decreased my Asacol dosage and stopped my Canasa she had prescribed months before.
My main problem like I said before has always been that I have such a hard time remembering to take it and I have wondered in the past if Asacol was really the best thing for me to be taking. I've just been a little amazed that I've lasted this long so far with no flare up and no medicine since in the past I usually flare again after only 2 weeks. I guess it's time to make yet another trip to the doctor!

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/18/2009 10:09 AM (GMT -6)   
As you have such a problem remembering to take your Asacol, perhaps you should ask your GI about Lialda or Apriso. They both contain the same active ingredient (mesalamine) as Asacol, but are coated differently so that you only have to take them once a day.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Euphrosyne_Rose
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/18/2009 10:42 AM (GMT -6)   
I plan on making an appointment soon and asking about a medication like the one you described, Fruitgirl. I was hoping there was something out there that would only involve me taking it once a day since 3x seems to elude me too much!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 6/18/2009 12:22 PM (GMT -6)   
3x daily would never work for me either....I told the doc I could do 2x...so that's what I've been doing for the entire time.
Of course...plus the rectal meds...which I strongly encourage you to use.

q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 6/18/2009 2:25 PM (GMT -6)   
Your symptoms sound similar to mine intially. I immediately had trouble after finishing a long course of abx (after the birth of my second child by c-section). I made an appt, but by the time I had it, things were getting better on their own. I was diagnosed with UC, which was a surprise to both me and the GI doc, by flex, then had a colonoscopy to see the full extent of the inflammation. But by the time I had the colonoscopy, I was back to normal. I was put on Colazal after the flex, but had trouble remembering and never felt it was helping much (I wasn't taking it regularly,so I never felt it was helping the symptoms-I was barely bleeding when I had the flex as it was, and I was definitely in denial about the entire thing).

Anyway, I gave up taking it altogether that summer. But things got stressful when my husband was out of a job and such, and I started having problems again. I tried to go back on the colazal, but it didn't even make a dent. I tried managing it with natural remedies and such, but it just got worse and worse until I landed in the hospital the following spring. Now I am on Asacol (6/day) and Humira through a trial, and use suppositories for flares when needed. I will most likely be on these meds, or others similar, for the rest of my life. I thought it had gone away, and it did...for a little while. But when it came back, it came back with a vengance, and knocked me OUT.

I never miss my meds now, I can tell you that. What I find works for me, since I only take them 2 times/day, is that I have two of those pill containers-one in white and one is blue. I put my morning pills (I also take some vitamins and other supplements) in the white one, and the nighttime ones in the blue. I refill it once a week, and all I have to do is open a little slot and grab my meds.

I would love to be able to manage my disease without all of these meds, and I still have a tiny glimmer of hope that somehow that will one day happen, but for now-meds it is. If I could go back, knowing what I know now, i would have been a lot more dilligent about my meds. I am not sure it would have made the difference, but it would have been worth it if it had.
Laura
 
34 years old, stay at home mom of 2 girls, ages almost 4 and 2.5
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Off of canasa because of severe joint pain (side effect)

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