Question for those in Remission

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Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 11/12/2008 4:07 PM (GMT -6)   
For those of you who are in remission do you feel "good" - I mean do you feel as good as you did before UC entered your life?  Not feeling sorry for myself so much as I wonder when the day comes that I go into full remission will I be able to feel as good as I did before my flare.
 
Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 11/12/2008 4:26 PM (GMT -6)   
Absolutely. I feel as good, if not better.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/12/2008 5:43 PM (GMT -6)   
Can't remember. Except... I used to have an hour commute to work (car to bus to subway, walk), work all day, then hour commute home, and never use the restroom once...amazing...
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 11/12/2008 6:21 PM (GMT -6)   
Wonderful ! Now I know I will have something to look forward too one of these days!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 11/12/2008 7:25 PM (GMT -6)   
I am never not tired, but it could be from other health problems also.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


goften
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 11/12/2008 7:40 PM (GMT -6)   
Not to be a downer, but I've had UC for 7 years (I think my signature thing is wrong - actually diagnosed in 2001) and I've never been back to 100% of how I used to be. I've been between 90% and 95% over the years, which has been perfectly fine. But I can't say that my BM have ever been "back to normal". Always been a little soft, little bit of urgency, always need to hit the bathroom before I leave the house in the morning. I've been in enough remission to train for and ride a few centuries though (100 mile bike rides), so that is good enought for me. But at far as stool goes, it's never been the same. That's just me though.
matt
Diagnosed in 2003 with Pan UC -
last Colonoscopy was 8/20/08 - lower 8" infected
currently at the tail end of my third flare
40mg Prednizone
50mg Mercaptpurine
3x3 750mg Colazal
100mg Hydrocortizone enema twice a week
Fish Oil with Omega 3
daily vitamin
St. Johns Wart (was feeling down -thought I'd give it a shot)
 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 11/12/2008 10:06 PM (GMT -6)   
1-2 solid BMs per day, no meds for anything, soaring energy levels, no pain, active lifestyle. When in remission I am physically back to where I used to be pre-UC, which has been my goal for my post college years. Perhaps I may even be better due to taking better care of myself and watching more of what I do and eat. A small drop in athleticism/stamina but I think that is just from getting older. :(

I still have occasional flares over the years but I address them quickly and try to limit the damage they cause with no medication so I can return to remission as soon as possible. I would not recommend this action for anyone with the disease and follow one's GI advice. But it can be done...

I must admit my mind will never be the same until a cure or my colon comes out, no matter how long I stay in remission. The constant "alert" status of every bout of D, or subconsciously locating a bathroom wherever I go. This disease affects you mentally as well as physically. Maybe even more so, because even when the physical problems go away, the mental part remains.
Diagnosed w/ Ulcerative Colitis in 1995
32 years old
Living med free  
Currently in remission  


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 11/12/2008 10:21 PM (GMT -6)   
I've been in remission for over a year and a half. I feel the same, but my UC still tells me it's there. Sometimes I tend to almost forget my meds, but thankfully I haven't. I tend to have abdominal pain off and on due to stress.(Oh! The joys of working in child care.) wink When I get sick, I have the "D," but not constantly. I also tend to "live" in the bathroom in the morning, my body takes time to get it out unfortunately, maybe 3 times before 9 o'clock.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)

Post Edited (Sweetie31105) : 11/12/2008 8:24:14 PM (GMT-7)


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 11/12/2008 10:31 PM (GMT -6)   
I've been in remission almost 3 years and I feel pretty good. Not as well as I did before UC and IBS but decent. I do have off days but that is excepted being that I probably have IBS and I'm lactose intolerant. I do enjoy MOSTLY solid bms almost everyday and I only go 1-2 times a day and sometimes not at all. I still take immodium on drive trips or when I'm in a situation where I can't deal with d. Its not because I need it exactly but more as a precautionary tool because like ucwarrior said my mind is constantly aware of my UC.
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 11/13/2008 11:52 AM (GMT -6)   
I usually flare once per year in the spring and go into complete remission shortly after, I take no maintenace meds between flares (GI said no reason to if I can get into complete remission for a length of time).

I work out regularly, bike home 40km when the weather is good, other wise I am on an eliptical machine after work.

I find I need more sleep then pre UC and don't have the energy I did before but like ucwarrior stated, could be age (I am 46). UC is ALWAYS on my mind and seems to control and cause stress when I make arrangements that may not have bathrooms around.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 11/13/2008 11:59 AM (GMT -6)   
When I was in remission right after diagnosis last year, I was almost back to pre-UC normal--I just needed a little more sleep. I've been in a flare since February this year so even if I get into remission, I know I will always be paranoid about a flare.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 11/13/2008 2:38 PM (GMT -6)   
     In remission for two weeks this Sunday.  It is heaven and I cherish every moment because I know Mr. Nasty (UC) is lurking in my rectum waiting to pounce.  In the meantime, I eat anything I want and when I go, which is once a day, it really IS laying some cable (don't mean to be gross).  But it makes me so happy I could frame it.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Knight
Regular Member


Date Joined Jan 2005
Total Posts : 352
   Posted 11/13/2008 8:50 PM (GMT -6)   
Gigi,
 
You ask if I feel good, and I would say this.   My guts feel good and normal, no constant rumbling, no gas churning, no intense urge.  But my body has generally gone down hill in other ways like joint pain, fatigue, lumbar pain.  For a person my age, 44 I ought to feel a lot better.  Good news is my guts feel normal.  Hope that helps.
Knight
 
Mild to Moderate Left Side UC since 10/2002, Joint Pain since 10/2004
 
Strict SCD 7/2004-12/2005
Prednisone 8/2004-10/2004
Remission since 9/2004
Daily Meds:
 1500 mg Pentasa, 150 mg Zoloft, 30 mg Baclofen, 10 mg Ambien


perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 11/13/2008 9:37 PM (GMT -6)   
I would agree with most of the other posts here. I feel amazing compared to when I am in a flare, but it's never perfect. I go about 3 times before I leave the house in the morning, often with some pain and urgency. But then I am fine the rest of the day-have gained weight back and eating normally. I guess I have made my peace with this situation and I am just thankful every day that I am back to my normal life, so even though it's not 100% it still seems pretty good to me. Though I do still have hope that one day it will be perfect : )
-Lialda (4 pills/day), canasa, Align probiotic, kefir, multivitamin, calcium with vitamin d, iron


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/13/2008 11:35 PM (GMT -6)   
Given the fact that I'm seven years older, yes, I feel as good as I did before. I have some new things that we develop as we age - arthritis in my knees, for instance, but that's not unusual at my age. As far as the UC, I feel fine.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 11/14/2008 8:02 AM (GMT -6)   
Thank you all so much for your responses.  Goes to show us once again that this is such an individual disease.  I know I am not totally in remission, but will be interesting to see how I feel when I get there.  I am 51 so I am sure I will still have some pains - who doesn't at my age - mostly arthritis before.  You guys have once again helped - thank you!
 
Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 11/14/2008 3:17 PM (GMT -6)   
I'm 54 and 23 years older than when all this stuff started. So many things have changed, but in actual truth...my pains are less, but more mildly constant. My body has changed and now that I"m more mature....ahem...I'd say Im doing better than I was before diagnosis when my whole body was totally wonky.

My anxiety levels are improved as well as depression....therapy helped.

In reality, I'd say that although I miss my youth....I'm in a better place mentally/physically. I can work on improving them at least...

Do make sure you get your vitamin D levels checked...although I hear those tests are backlogged. Maybe an independent where you have to pay?

My vitamin D is low although I was taking supplements (I've upped it a bit)....my husbands was extremely low and since taking the vitamin D3, his mood has improved as well as energy levels. Now, his emotional state needs a bit of tweaking.....and I believe proper exercise will help.

You might also want to make sure you're eating enough healthful calories, not too much fat during your peak functioning periods. Coffee can lift your mood/clear your mind and give you some energy. Even if you have a bit of caffeine, that will help. No, I'm not talking the energy drinks either...but do the homework to see where you can improve somewhat.

Hormone imbalances can cause fatigue...get your thyroid checked as well follicle stimulating hormones...if you're in perimenopause...you can be tried from that.

Hope you feel better soon. I have days where I'm totally slugging it...other days where I'm so hyped ad doing too much. Balance helps..lol!

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec 2 or 3  +   1 or 2 Primadophilus Reuteri Pearls @ bedtime
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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