What is concidered remission? also remicade question.

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JOVIGIRL71
Veteran Member


Date Joined Sep 2003
Total Posts : 659
   Posted 7/18/2009 7:42 PM (GMT -6)   
Hello again,
I mean I've  had UC most of my life but never really have been in remission. To me its when you take a normal bm and go once a day.
I think this has happened to me maybe 12 times in 21 yrs of having this disease.
I don't have blood , some times mucus and cramping and lower back pain and weakness. I concider this to be in a flare.
Cay you guys tell me what your remission is to you?
 
Also how does remicade work for you guys who are on it. What is the difference you have in your bms and uc in general?
 
thanks donna
~~ Donna ~~
 
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)
 


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 7/19/2009 2:10 AM (GMT -6)   
UC in remission is the same definition as you have described. Remicade has worked well for me so far now that I have started taking Asocal with it.
Female, Left-sided colitis diagnosed at age 28 in 2001
Remicade stopped a major flare for me I am now off all meds except the remicade.


mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/19/2009 4:18 AM (GMT -6)   
remission for me was virtually symptom free with 3-4 bowel movements a day but never has it been only 1 bm a day. Consider yourself lucky that you dont have blood and that your colitis is far from severe.
Age:31 Married with children.
--
Ulcerative Colitis cause: In 2003 I took Accutane for about 4 months, strong side effects of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC -should have understood the IBD warning and should've never taken the dangerous drug
known as Accutane.
May 2004- May 2009: Prednisone, Asacol and many other med's that did not work well-Remicade was great for 16 months then suddenly stopped working.
---
May -June 2009: Pancolitis- chronic 2 month flare up that put me out of work and made me seriously think about surgery.
June 24th 2009: elective colectomy/ileostomy at Barnes/Washington University.
August 2009: planned rectum removal and j-pouch construction.
October-November 2009: planned Reversal.
----
Summary: Suffered 5 long years with severe Ulcerative Colitis, Anxiety and depression.
No more diseased colon. No more running to the bathroom 20+ times a day. No more cramping and bleeding. Satisfied with first surgery.


seldom_seen
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/19/2009 6:13 AM (GMT -6)   
To me, remission means a return to my symptom-free, pre-UC state -- maybe one BM a day, ability to comfortably hold it if need be, no unreasonable urgency, gas, blood, mucus, etc.

In 11 years, I have never gotten there. One thing that irks me about my GI -- whom I really like, overall -- is that after my last two colonoscopies, he proclaimed me to be in "clinical remission." I don't care what the camera or histology say, if I am hitting the can 3-4 times a day with occasional blood, malformed stools and above-average urgency, then no description of my current state should include the word "remission" -- I don't care what adjectives you sprinkle in front of it.
Dx'd left-sided UC in 1998
-Lialda 2.4 g qam; Fish oil 5 g qam; Metamucil 1 tsp BID
-omeprazole 20 mg qam; alprazolam 0.5 mg BID (for anxiety, not UC)
-calcium-magnesium-zinc 1000 mg, 500 mg, 200 IU qpm


JLG45
Regular Member


Date Joined Feb 2009
Total Posts : 114
   Posted 7/19/2009 8:24 AM (GMT -6)   
I've had about 4 doses of Remicade and now down to 2-3 BM per day. One first thing AM, another after lunch and maybe one in the evening. Aside from the morning and lunch I rarely have any urgency. It's nice being able to hold it until I find a washroom.

No blood or mucous altough my stool is very loose. Once and awhile I form a good log but it's rare. Is this the same experience of others?

Since I've been on remicade (only started working after 4th dose), my diet has been a little poor. I'm eating a little too much fat and likely far too much beer.

Prior to developing UC I had a extremely healthy diet although it's not conducive to healing a rotten colon ( high fibre etc ). I would also have 1 BM a day, or 1 BM every 2-3 days. Can't say I was very regular.

So, I think I'm in remission but it's hard to tell since my stool is loose.
Diagnosed U.Proctitis 07

Flare Feb 09 - Diagnosed with Severe Pancolitis
Remicade, 50mg Prednisone, Cortenema PM, 1g 5 ASA suppository AM


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/19/2009 8:45 AM (GMT -6)   
Remission for me is no more than three formed BM's a day and no other symptoms. That's what Remicade has given me for the past three and a half years.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 7/19/2009 9:44 AM (GMT -6)   
I'd say my daughter is in remission: 1-2 formed stools, no urgency or blood, and the ability to eat all of the no-no foods---fruits, seeds, raw veggies, etc. Energy returned, pink cheeks, and the strength to even exercise. Remi is the magic, for now.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16277
   Posted 7/19/2009 10:30 AM (GMT -6)   
I have one BM a day but it's slightly urgent and sometimes less than formed. I don't think I am quite in remission but I am a lot better off than I was and a lot better off than a lot of people. I am thankful to be doing as well as I am.
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...


JOVIGIRL71
Veteran Member


Date Joined Sep 2003
Total Posts : 659
   Posted 7/19/2009 8:53 PM (GMT -6)   
Thank you so much for all your input. I really appricate it. I won't say i'm in remission because I still get cramping but NO BLOOD that I guess to me is my remission but I still go up to 10 times a day.
I think the next step will be the remicade I have a colonoscopy August 13th. So we'll see how it looks.

To better health for all of us

donna :-)
~~ Donna ~~
 
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/20/2009 3:47 PM (GMT -6)   
No blood, but no urgency is the best part. And I seem to have control over when I poo, depending on how long I sit. I even have gone a day or two without pooing at all, and that's a miracle.
I'm still getting used to being able to pass gas without needing to run to the bathroom!
I don't do it when anybody's around, but when I'm alone it's kind of exciting :)
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 7/20/2009 4:00 PM (GMT -6)   
Hi Donna....you should consider to do the retention enemas...either 5-Asa (Rowasa or Salofalk or Pentasa) or steroid liquid or foams.

Is there a reason you're not using them? I'm sure I've asked, but don't remember the answer...maybe put the reason in your siggie if you cannot use
them.

Remission would be NO symptoms, one bm a day or two, depending on what I eat.

One doesn't have to be bleeding to constitute a flare, but it's great that your bleeding can be reduced.

Oh, forgot to mention there are also suppositories, but I don't classify them as a treatment option as much as a maintenance option...but that's a personal opinion.

quincy
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~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 !!!
 


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 7/20/2009 8:23 PM (GMT -6)   
What do you guys think about having 3 or so BMs a day? That's what I had pre UC. I'm back to that now, so I would consider that to be my remission.

I have been really constipated the last few days. I hope that's not a sign of bad things to come.
Age 34, Diagnosed with UC September 2008
Current Meds:
Prednisone currently on 5 mgs, will quit on Wednesday 7/15/2009!
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa


Basilpuppy
Regular Member


Date Joined Jul 2009
Total Posts : 28
   Posted 7/20/2009 9:44 PM (GMT -6)   
Jen O , the natural foods folks say that once a day is not enough if you are eating a healthy diet of whole foods. I have been cured for a year and a half after twenty years of UC and I go about 1-3 times and day.

Peety, I understand. Passing gas without being scared is so great. Also, when your bowels are normal, the peeing is great!! Most of the liquid used to go the other way - ! Has anyone else noticed this?

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/21/2009 1:15 AM (GMT -6)   
Remission to me is no blood, no mucus, no diarrhea, minimal gas, no bloating, no hot abdomen, and one formed stool a day. My body still needs time to heal after a flare; so there may be some urgency, which gradually goes away the longer I'm in remission. I also need additional time for my energy level to return to normal, but that's because I loose a lot of blood when I flare. I can't eat foods high in fructose, because I'm fructose intolerant, which is probably due to a liver issue, not a colon issue.

Currently, I'm in remission. I no longer have urgency, but it's been six and half months and my energy level isn't completely back to normal yet although it is still improving.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had 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.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).

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