Oh No... it's Back Again!

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treej
Regular Member


Date Joined Jun 2005
Total Posts : 47
   Posted 8/30/2009 4:53 PM (GMT -6)   
Well, I had been symptom free since spring 2007, and recently have feeling healthier than ever ("cured!?"). I turned 50 (yikes) this summer, and had been diagnosed with UC way back in 1993. I have suffered with bouts of severe UC which resulted in many hospitilizations , and almost had THE surgery several times. Over the years I have tried the full array of meds., except remicade.
I am shocked and disappointed that just last week, seemingly out of nowhere, my UC is back! I began bleeding literally over night, and am back on 40 mgs. of pred.  I had always stayed on a minimum of 6MP for maintenance, and upped that to 100 mgs.
I am not sure how to process this relapse; I really thought that I was done with this! I am happily remarried to a terrific guy, have two great step-sons and a little dog that I adore... no stress that I can see. So, now the questions come from well meaning people ... is it stress? Is it something you ate? What causes it? Boy, if I could answer those tough ones I would certainly stop doing whatever and fill you guys in on the secret, huh?
Well, just reaching out to others in this club that none of us want to be in!!.....
tree
 

psychocolon
Regular Member


Date Joined Jul 2009
Total Posts : 118
   Posted 8/30/2009 5:03 PM (GMT -6)   
So sorry to hear that it is back!!! Here is a BIG HUG! That seems to be the terrible problem that you can not pinpoint what starts the flare a lot of the time and it is such a roller coaster disease. Right now I am in a flare and one day I think I have it beat and am getting better and the very next day......bingo it is worse. Hang in there and let us know how you are doing. Hope you get better soon.

jazzgtrl4
Regular Member


Date Joined Aug 2009
Total Posts : 302
   Posted 8/30/2009 7:05 PM (GMT -6)   
Yep ive been in remission for 4 years or so, then bam just about a week and a half ago i start seeing a light red in my stool and muscus. Mind you i was on no "maintenance" drugs at all, drug free for over 3 years. Ill be darned its coming back. good luck with it and i hope you feel better soon. take care

sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/30/2009 8:31 PM (GMT -6)   
Did you stay on your maitenance meds?
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 2xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


treej
Regular Member


Date Joined Jun 2005
Total Posts : 47
   Posted 8/30/2009 10:11 PM (GMT -6)   
Yes, I had been on 6MP, only because my doctors warned me not to be too cavalier. I had been gently warned that this could come back, despite how terrific I felt. I was directed to take no less than 75mgs of it, but I had dropped for a year to 50 mgs.
Who knows what brings it on.... hopefully this will pass and I'll be back to spinning at the gym, hiking, and feeling strong. Be well .....
tree

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/31/2009 7:20 AM (GMT -6)   
That is one of the reasons that make Uc an unpredictable beast! We never know when it's going to come back. I've learned over the years to not let the feel good days "go to my head". I just take the good days as they come but in the back of my mind, I know that my Uc is always going to be there. Since I've done this, the disappointment isn't as harsh.
 @--->--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 ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/31/2009 9:58 AM (GMT -6)   
Well, two years is a pretty good run! I personally am never affected by stress, but more by changes in the season. Why that would affect the body, who knows!

I understand the disappointment! I too always thought some day my body would get over this with age but it never happened...
I hope you can recover quickly.
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/31/2009 10:27 AM (GMT -6)   
Ah yes, I totally understand. I sometimes wait for the big ax to fall again too but it's buried somewhere deep in the back of my mind. Although I just received fantastic results from my colonoscopy, I never know what could swing things into action again. I too am 50, and hope that the ole' hormones don't make things change! Best of luck to you; I hope the pred puts you back on track to being symptom free once again. ps, I love to hear how happy and healthy you sound...makes me smile and gives me the incentive to get moving again!

Carol

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


treej
Regular Member


Date Joined Jun 2005
Total Posts : 47
   Posted 8/31/2009 10:52 AM (GMT -6)   
Thank you for the kind and empathetic comments...I am hanging in there! Just made appt with Dr for tomorrow; in the meantime I am keepin' positive. We all have our ups and downs, and this kind of week sure makes me appreciate the ups, and look foward to my healthy days returning. I'll def. keep ya posted... THANKS again!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/31/2009 5:55 PM (GMT -6)   
    So sorry to hear you are flaring again after enjoying remission.  Isn't remission wonderful!!! yeah     I have had UC for almost eleven years.  After my first bout, I had a two year remission but I was bad....took myself off the Asacol (that was my maintenance med) because I actually thought the UC wouldn't come back.  WRONG!  It leared its ugly head again in 2000.  This time the doctor put me on Colazal instead of Asacol because my problem is in the rectum.  Another two years of remission.  In 2002 the doctor added the 6MP while I was still on the prednisone for that bout.  Well, 6MP has not kept me in remission.  I wonder why I still take it.  I have a flare every year but this past year I had two flares within eight months of each other.  The flare I suffered in May of 08 was a doozy, had to be hospitalized for ten days.  That flare lasted seven months.  Seven months later in May of 09...boom, another flare.  Slowly coming out of this one.
     I wonder also what triggers each one.  I know I was under a a lot of stress in 2003 thru 2005, daughter went through a bad divorce, etc..  However this past May we were vacationing....maybe eating too much red meat...pizza???   Who knows?  Doctor said it isn't diet related but I think diet plays some kind of role.  Actually, when I first came down with UC in September of 98 I was following the Atkins diet!  Too much red meat?  Hmm..
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/31/2009 6:01 PM (GMT -6)   
Hi tree! Glad to see you've got such a positive attitude! I hope that I'll be like you when I get my next flare. So far I've just had the one. I've been telling myself that it won't be as bad "next time" because I'll know what's happening and will be able to nip it in the bud. Hopefully it's a good long while before it happens again, though! :)
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).

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