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You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/7/2013 11:24 PM (GMT -6)   
What is usually the last symptom that lingers around for you before finally hitting remission.. Mine seems to be the diahreaha but I'm unsure what's common and what's not.. How about for you?
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

Madcat25
Veteran Member


Date Joined Oct 2012
Total Posts : 1111
   Posted 2/7/2013 11:55 PM (GMT -6)   
Not sure what you mean by remission? ( as in med free or pred free) but anywho... Logically fatigue would be the last to go. Need time for body to replenish fully.
ASK THE CAT
UC Forum Moderator

Ulcerative Colitis diagnosed Oct 2007. Prednisone for flares until Oct 2012. Half-remission from Remicade.
Currently on: Prednisone 10 mg, Imuran 50 mg, Remicade 300 mg (4 infusions)
Supplements: Ultimate Flora x 1, L-glutamine 1500 mg x 1

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9989
   Posted 2/8/2013 12:03 AM (GMT -6)   
Mine is urgency. I had urgency for such a long time. It's usually one of the first symptoms to bug me when a flare is starting. I can deal with a lot of things but I HATE urgency. It's almost worse than frequency, at least if it weren't urgent, you would have a good chance of making it to the toilet. It's truly evil to experience those 2 symptoms together.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: 6mp (25mg) + Lialda (2400mg) + Canasa (1g PM)

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 12:03 AM (GMT -6)   
I'm on prednisone and asacol, synptoms are clearing up, I was wondering what the last symptom most people usually deal with before returning to 100% or synptoms free of the disease
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 12:05 AM (GMT -6)   
Yeah I agree with the uncontrolable urgency being the toughest symptom, it starts to control your everyday life and makes social settings that much more harder to attend, being on the road is always nerve racking for me not knowing if I'll make it from point A to point B without needing a bathroom immediately
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

Conquer UC
Veteran Member


Date Joined Jan 2012
Total Posts : 1158
   Posted 2/8/2013 12:36 AM (GMT -6)   
Urgency. Sometimes bleeding too.
25 yo female Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

Scarecrow
Regular Member


Date Joined Aug 2010
Total Posts : 214
   Posted 2/8/2013 6:52 AM (GMT -6)   
For me it was abdominal pain/cramping.  The urgency and bleeding went away pretty quickly but it took about 2 months to control the pain.  Most of the pain was at night while trying to sleep.  Mary
I have had this disease for 15 years now. Tolerable at first as I went into remission with drugs like prednisone and finaly Remicade. A few years ago, all of these drugs stopped working for me and my UC became much worse. I am currently on Chinese herbs and doing great. Good bye prescription drugs! Daily regiment of supplements:

CCherbal
Metamucil
Ultimate Flora Probiotics

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1197
   Posted 2/8/2013 7:10 AM (GMT -6)   
Bleeding
MODERATOR-UC FORUM
54, female - diagnosed with ulcerated proctitis/mild colitis
Anucort AC - 25 mg; once a day
Canasa - once a day
Lialda - twice a day
VSL#3 DS - 1/2 pack a day
Zocor - 40 mg
Boniva - once a month
Calcium with Vitamin D
Glucosamine
Magnesium
Herbs -
Valerian - when needed for sleep
St. John's Wort, Black Cohosh, ginger

canadagal
Veteran Member


Date Joined Jan 2011
Total Posts : 596
   Posted 2/8/2013 7:35 AM (GMT -6)   
bleeding... i get everything else under control (urgency, frequency, consistency, cramping, energy... ) but I bleed for a long time. I try to think of it as a bad case of colon acne.... lol
40yr old female
1st symptoms 2006, UC diagnosis 2007.
1st flare - 1 year. Solid remission with Mesalamine for 3 yrs.
2nd flare - 1 year (Jan 2010 til 2011). steroids (dependant -didn't work) Eventually 4.8g mezavant and 4g salofalk enema and sunflower/spinach got me into remission.
3rd flare - Mid-Aug 2012 - just finishing up now Dec 2012
(mezavant, enemas, mutivitamine and probiotics)

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 7:37 AM (GMT -6)   
I don't see any blood anymore but still have diahreaha, still waiting for formed stools
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6790
   Posted 2/8/2013 8:53 AM (GMT -6)   
Have you considered adding mesalamine enemas?
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 10:22 AM (GMT -6)   
My GI doctor told me enemas will do nothing for my due to the inflammation being severe and all the way up to the ascending colon
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6790
   Posted 2/8/2013 10:36 AM (GMT -6)   
That's a bunch of hooey. I was diagnosed with pancolitis (entire colon affected) and was in a pretty severe flare when I was diagnosed, and the enemas made a tremendous difference for me. Sure, they won't treat the entire colon, but they do an absolutely wonderful job of treating the distal portions of the colon and rectum, which the oral meds aren't always so great at treating.

Study after study shows the benefit to using both oral and rectal meds to treat UC instead of using just oral meds.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 10:38 AM (GMT -6)   
What would the enemas being doing for me as far as alleviating symptoms, seeing blood isn't a concern of mine but the frequency, urgency, and diahreaha is
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6790
   Posted 2/8/2013 10:41 AM (GMT -6)   
The enemas (at least the ones I'm talking about) contain the same active ingredient as the oral meds you're taking -- mesalamine. Mesalamine is an anti-inflammatory. You have frequency, urgency, and diarrhea because of the inflammation. The enemas will do a better job of treating the distal colon than the oral meds. One study I read suggested that even if the upper portions of the colon are healing, your symptoms won't really improve so long as the distal colon is still a mess.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 10:43 AM (GMT -6)   
Ahh I see, well if my doctor won't prescribe me then then I'm kind of out of luck then huh? And are these Pills that are inserted in the rectum? Or the liquid that you squeeze into it
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6790
   Posted 2/8/2013 10:48 AM (GMT -6)   
Enemas are liquid, but there are also mesalamine suppositories (Canasa). However, the enemas are generally preferred because they reach much higher.

I'd just tell your GI that you want to try them and that you want a prescription. You can tell him that you've done some reading about them (I can easily send you some research papers, if you like) and that you want to see if they'll help.

And if he refuses, it's time to find a new GI. As far as I'm concerned, you should have a great deal of say in what medications you try, especially when it's a medication with such a good safety and efficacy profile. It's not like you're asking to be put on a drug with a lot of potentially serious side effects.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 10:57 AM (GMT -6)   
Thanks for all your advice, I have heard good things about oral pills and enema combination working well which is why I mentioned it to him but he steered me off of it.. I will def ask for a prescription next time.. How often do you take these?
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6790
   Posted 2/8/2013 11:01 AM (GMT -6)   
When I was flaring, I used the enemas nightly. I stayed on them nightly until I was off prednisone and had zero symptoms for several weeks, because I didn't want to risk coming off of them too quickly. Then I dropped down to every other night for a few weeks, then to twice weekly, which is where I've been ever since. I've chosen to stay on them for maintenance because studies also show that people who use them twice weekly in conjunction with daily oral meds stay in remission longer than those who only use oral meds.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 11:19 AM (GMT -6)   
Interesting, this information was very helpful.. Now if I can just convince my doctor to prescribe me this.. He wants to go right to remecade if I'm not 100% by march first which would then make 2 months of me being on 60mg pred 800mg asacol daily with synptoms remaining (diahreaha, blood, stomach discomfort) I feel my days are getting better but I have yet to see a normal stool in months.. Gas diahreaha and usually blood Everytime
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6790
   Posted 2/8/2013 11:20 AM (GMT -6)   
If he tries to put you on Remicade before you even have a chance to try the enemas, RUN!
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

You-See
Regular Member


Date Joined Jan 2013
Total Posts : 152
   Posted 2/8/2013 11:22 AM (GMT -6)   
Lol how long were you on prednisone for before getting off? And how many Mg, I feel like me going on 2 months with 60mg a day is a dangerous amount of time to be on them.. How long tends to be too long?
22 year old male, diagnosed with severe ulcerative colitis on Jan 7th 2013, still remain in flare.. Currently taking Asacol Hd (800mg, 6 pills a day) and Prednisone (20mg, 3 times a day)

Dawn89
Regular Member


Date Joined Jan 2013
Total Posts : 108
   Posted 2/8/2013 1:18 PM (GMT -6)   
Scarecrow - are those the only 3 you took to gain remission? 
CCherbal
Metamucil
Ultimate Flora Probiotics
 
My son's doctor doesn't want to try him on enemas either, but I am going to ask in person next visit.

My 12 yr old son:
Apriso morning, Canasa nightly, 80 billion probiotic renew life, Greek yogurt, L glutamine, multi, slippery elm, fish oil, biotin, coconut oil, aloe, ginger
Mainly rice, potatoes, fruit, honey for carbs
No gluten, red meat, pork, corn, soy, cow's milk

jazzgtrl4
Regular Member


Date Joined Aug 2009
Total Posts : 157
   Posted 2/8/2013 1:48 PM (GMT -6)   
Bleeding for me, i think im at the end of this flare hopefully but cant knock out the light bleeding. I have solid stools etc. but there is this little bit of blood i cant shake. My UC is really down low too

Dawn89
Regular Member


Date Joined Jan 2013
Total Posts : 108
   Posted 2/8/2013 2:27 PM (GMT -6)   
No gluten, milk, and very little sugar stopped my sons gas and he only goes 1 or 2 x a day now. Lots of cooked carrots and chicken broth with meat helps every flare. Blood is hardest to get rid of, eat soft healing foods like bananas and no added sugar applesauce. Maybe white rice.
My 12 yr old son:
Apriso morning, Canasa nightly, 80 billion probiotic renew life, Greek yogurt, L glutamine, multi, slippery elm, fish oil, coconut oil, aloe, ginger
Mainly rice, potatoes, fruit, honey for carbs, turkey, chicken, eggs
No gluten, red meat, pork, corn, soy, cow's milk
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