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ColitisBoy
Regular Member


Date Joined Aug 2009
Total Posts : 35
   Posted 8/21/2009 9:30 AM (GMT -6)   
Hello wise ones,
 
I have browsed the boards for a while, but this is my first time writing.
 
Just curious to get everyone's take on my story:
 
I'm 31 yrs old and was diagnosed with mild UC in 1995.  The ignoramus of a doctor immediately put my on 50mg of prednisone as a first line treatment.  That was my first and last time on the drug.
 
Since then I have gone in and out of mild flares.  When I am not flaring I usually go a couple of times in the morning. My worst times are always in the morning right after waking up.  Even when not flaring my stools are not like before UC.  They have form, but are soft and occasionally on the thinnish side. I am then usually fine the rest of the day (no cramps or movements).
 
When flaring, I go a few more times in the morning before leaving the house (maybe nerves have something to do with it).  I have cramps that usually persist over the course of the day.  I would say they are moderate cramps, but they are enough to cause me discomfort and make me anxious about emergency trips to the bathroom.  I never have diarrhea, just the soft stools. Then later in the day (about 4-6pm) I will have 1-2 more BMs.  In some flares there is a little bit of blood and mucus but nothing major.
 
I was quiescent for a few years and then after having kids (maybe stress because of lack of sleep) I started going in and ut of mild flares. I am currently in a flare (extra BMs in the AM, usually 1 extra BM in the PM.  Cramps from 6am-3pm, they usually disappear after that. I don't see any visible blood and sometimes there is a touch of mucus).  Overall I try not to let it affect my quality of life, but in reality it does. I am nervous to go on trips, especially places without restrooms and I am always making mental notes in public where the nearest facilities are.
 
I am routinely on Asacol (maxed out) and Azathioprine (maxed out).  I usually add the Rowasa enemas when I feel symptoms coming.  This time it didn't do much to alleviate the symptoms, so I used the cortenemas and they seemed to do the trick.  Now I am trying to wean from them by alternating with the Rowasa and symptoms are starting to break through again. I am getting quite frustrated going in and out of these flares.
 
I understand that compared to some these symptoms may seem mild, but they do cause me a good deal of both mental a physical discomfort.  At my last visit with the GI, he mentioned that if I have trouble weaning from the cortenemas, it is probably time to try infliximab.  I'm not a big fan of biologics and do want to avoid this.  Do you guys feel my options are running out and I should give it a shot?  I don't want to spend my life going in and out of these flares, but I'm not sure these mild-moderate flares warrant more aggressive treatment.
 
I have also been taking cuturelle and recently added curcumin and have not noticed and difference.  I tried aloe gel capsules (I couldn't get down the liquid) and that seemed to irritate my stomach.
 
I apologize for the rambling post, but just wanted to see what everyone thought about my story.  Thank you for your time.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/21/2009 10:35 AM (GMT -6)   
Where is your colitis located? If it's not throughout your colon, maybe it would be worth trying Colazal. It's *basically* the same thing as Asacol, but it dissolves differently and does a better job targeting the left side and distal part of the colon. Also, I'd highly recommend you use enemas even for maintenance. I tapered (first to every other night then to twice weekly) from nightly use after I got into remission, and plan on staying at twice weekly permanently as my maintenance dose. I've done some research, and quite a few studies have been done that show patients stay in remission for longer stretches when they use enemas twice weekly.

Is there any way you would consider using prednisone (short term, of course) to get out of this flare? I know that a lot of people are resistant to the idea, but it does wonders in getting people into remission. I think it's one thing to be steroid dependant (I'll move on to remicade before I stay on steroids to control symptoms) and another thing entirely to use them on occasion to get out of flares.

If you think anxiety plays a big role in your symptoms, maybe it would be worth exploring cognitive behavorial therapy and/or an anti-anxiety medication.

I would also be hesitant to try a med like remicade with such mild symptoms as you have.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 8/21/2009 12:34 PM (GMT -6)   
I agree with frutigirl, try using rowasa for maintenance. My symptoms are probably the same level as yours, and it's been helping me immensely.
22, female, diagnosed 3/6/2009, symptoms for 2 years beforehand
Mild ulcerative colitis from rectum to mid transverse colon
Currently taking Asacol (1200 mg 3x/day), Rowasa and Calcium/D supplements


quincy
Elite Member


Date Joined May 2003
Total Posts : 30993
   Posted 8/21/2009 12:42 PM (GMT -6)   
Hi..welcome to the forum!

How long did you try the Rowasa continually nightly for this flare?

What do you mean you have trouble weaning off the cortenema....how long were you using them before starting to taper?

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


ColitisBoy
Regular Member


Date Joined Aug 2009
Total Posts : 35
   Posted 8/21/2009 1:10 PM (GMT -6)   
Thank you all for the fast replies.
 
Fruitgirl: As of my last scope, the inflammation is left sided, with some focal inflammation in the transverse colon.  I would prefer not to use prednisone, but would consider that if I was out of options.  It's funny that you mention CBT, my wife is a psychologist and CBT therapist. Perhaps the Colazal is a good idea.  I will definitley bring it up with the GI.
 
Malkavian: I will certainly try the Rowasa for maintenance in the future.  The problem is coming out of this flare now.
 
Quincy: I used Rowasa for a month nightly before the GI suggested I switch to Cortenemas. I have been using the Cortenemas for about 2 months.  I should mention I take the cortfoam in the mornings as well.  For weaning, I alternate between the cortenemas and Rowasa nightly.  When I start doing this alternating I become symptomatic.  That is what I meant by trouble weaning.
 
Thank you all for your time

quincy
Elite Member


Date Joined May 2003
Total Posts : 30993
   Posted 8/21/2009 1:20 PM (GMT -6)   
Yes, your symptoms definitely seem much more stubborn than the norm...I understand now about the trouble tapering/returning symptoms.

Are you doing any working out at this time?

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


ColitisBoy
Regular Member


Date Joined Aug 2009
Total Posts : 35
   Posted 8/21/2009 1:26 PM (GMT -6)   
Hi quincy,
 
I'm embarassed to admit that since having kids ~3 yrs ago, I haven't had much time to do anything athletic.  The most I really do is walk back and forth 2 miles to work (not the most fun to do during a flare).  Do you think excercise would help???
 
If I could just get rid of the urgency and extra BMs I would be golden.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/21/2009 1:31 PM (GMT -6)   
Maybe ask your wife what she thinks of doing some CBT (not with her as your therapist, though, as I imagine that could cause some marital strife!) and/or trying an anti-antiety med. The people on here who flare because of stress seem to find them very helpfu. I am currently weaning off of zoloft, which I went on due to post partum anxiety.

I also fogot to add that you should definitely try a probiotic supplement and also consider a fiber supplement. I personally haven't tried a fiber supplement and am doing well, but many people on here use them.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


ColitisBoy
Regular Member


Date Joined Aug 2009
Total Posts : 35
   Posted 8/21/2009 1:41 PM (GMT -6)   
Hi Fruitgirl,
 
I don't think I flare because of stress.  I just meant that I feel anxiety about urgency and finding restrooms.
 
I do take culturelle but it doesn't seem to make too much of a difference at least with me.
 
When I was first diagnosed I took fibercon, but that led to bad cramping and lots of extra BMs.  I'm not sure I am a high fiber kind of guy?
 
Thank you  for your suggestions

calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 8/21/2009 3:42 PM (GMT -6)   
Hi, I am new here too, but from what I've read you might have to try different probiotics before you find the one that is right for you (if any). I am on Align and it is making the stomach discomfort better. Now I'm not saying it will get you out of a flare, but for me, it helps quiet my stomach, if that makes any sense.

And about the fiber, I think that can go either way and I don't do well with high fiber either. Normal amounts in wheat bread or whatever don't bother me but if I specifically add fiber by supplement, etc then things get worse.
*Amy, 32, dx with idiopathic colitis July 2009. Dysplasia found also.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3694
   Posted 8/21/2009 5:20 PM (GMT -6)   
Your story is not unlike mine, either. I resisted going on the short course of Pred. last fall and have ended up doing cortenemas every since - weaning down, then having "something happen" (like a vacation to the in-laws! lol - verrrry different food, and stress, and tiredness) that seemed to make symptoms come back again, so I went back up on the cortenema dosage, got stable, started weaning down again...... Right before I moved a doc in my old group said she'd recommend 6MP if I couldn't get off the cortenemas - but my symptoms are not dramatic, so I'm not sure the more powerful med is warranted.
What I'd like to try is one of the other 5ASA drugs and Rowasa before going to stronger meds. I'm hoping my new doc, when I meet him next week, will think similarly...... :-)
I have found that this site is great to help me learn about some of the medical options I'd not heard about before.
Also, I tried a number of probiotics before finding the combo that seems to help. And when I have a bad day, a dose of slippery elm seems to help a lot. Also, very careful eating helps, even though it's not fun.
I've taken Metamucil daily for 23 years and it definitely helps. We're all different!
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills a day
Metamucil - 2 doses a day
Cortenemas or Rowasa from time to time
VSL#3, Ultimate Flora Critical Care
Canasa as needed

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