Great News!! Update on Me

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Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/29/2009 8:06 PM (GMT -6)   
Well, as most of you know I have not been posting about myself lately.  For good reason.  Since I started Remicade & azathioprine over 3 years ago I have been in a great remission.  (knock wood)  I went for my first colonoscopy since my last horrible flare (4 years ago) just to see if things are looking as good on the inside and they are on the outside.  And great news!  He said aside from a few polyps (which he says are 99.9% benign and very common with those who have had severe UC) my colon looks as normal and healthy as regular one!  There are signs that UC used to be there but nothing now!  I am ecstatic.  Based on that news we are going to stretch out my remi cycle to 12 weeks and if I do okay then to 14 weeks and then I will stop.  I know many feel that stopping remi is a bad thing but my doc is really tops in this field (even goes on speaking engagements to teach other GI's his methods on treating UC & crohns) and prefers not to keep me on this indefinitely if I'm doing so well.  I still do enjoy reading all the posts even though I don't respond as often as I should.  I will definitely try to pop up more often as I know how much I appreciated it back then when I was so sick.
 
Hope the rest of you get to this point real soon! :)
KTM


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 1/29/2009 8:37 PM (GMT -6)   
Thats awesome news...good for you. One question for you though...while on the Remicade, are you one other maintence drugs as well?
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Currently on Asacol 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Daily Green Tea and 1 Multi Vitamin a day


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/29/2009 8:40 PM (GMT -6)   
I take colazal 3x3 and 125mg of azathioprine.

KTM


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 1/29/2009 8:41 PM (GMT -6)   
LIght at the end of the tunnel. Love it!!

Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg tapering ... 25mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/29/2009 8:49 PM (GMT -6)   
Yup!  Gotta keep trucking.  3 years ago I couldn't imagine not being married to the toilet seat.  And actually having to worry about losing weight (I was way too skinny - lost over 30 pounds with that one - pred has forever fixed that for me though :( )!  And here I am.  Just gotta keep the faith!
KTM


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16422
   Posted 1/29/2009 8:53 PM (GMT -6)   
That is wonderful. I hope you continue to have success in treating your UC. If only all of us were doing so well. smilewinkgrin
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30677
   Posted 1/30/2009 3:06 AM (GMT -6)   
WooHoo!!!...hope it keeps up for a looooong time!
q
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/30/2009 8:38 AM (GMT -6)   
KTM, that is truly awesome! I will keep my fingers crossed for you that things remain this good! Since you are in this great remission did your energy level come back? That is my biggest thing at the moment. I am in remission but I am just so tired and fatigued all the time.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/30/2009 8:45 AM (GMT -6)   
Glad to hear about the remission. Are you still taking the Imuran? I was taking it for over a year, and my GI took me off of it due to cancer risk if taken for long periods of time. Been off of if for 3 weeks and doing great without it.
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/30/2009 10:02 AM (GMT -6)   
Wonderful news... so happy for you!
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/30/2009 1:22 PM (GMT -6)   

Thanx for all the well wishes. 

Red - I think I have more energy during the day - but come 9 pm I'm ready for bed.  So we don't do much late nights around here (Saturday nights sometimes we'll go out with friends - but otherwise...)  My husband laughs at me that I can't stay up to watch 24 with him.  Within 10 minutes I'm sound asleep!!  But I think that exhaustion is from the azathioprine cuz it's not the same as my UC exhaustion was. 

Sweetie - my GI feels that it is safer to stay on just the azathioprine than the Remicade.  He's a frontrunner in this field and he has tons of experience with long term Imuran/6mp use and not as much from Remicade since it's so new.  So I am going to eventually stop the Remicade and just stay on the azathioprine.  Keeping my fingers crossed that this will work.


KTM


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/30/2009 8:42 PM (GMT -6)   
KTM, that is wonderful news and I'm so glad you shared it...now I'm full of my hope and actually looking forward to my colonoscopy this spring. I have been feeling as well as you have and hey...this is great news! I remember when you started Remi! :-)
Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/30/2009 8:53 PM (GMT -6)   
cool   cool cool
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/31/2009 7:27 PM (GMT -6)   
Lonelylane - I remember when you started too.  Hope you come away with the same great news!! :)

KTM

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