Visit to GI office today

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Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 8/27/2009 10:47 AM (GMT -6)   
     Went to my GI doctor today.  He had taken me off the 6MP a few weeks ago because my white count had fallen to 1.6.  Happy to report that my repeat white count was up to 5.0 and my liver tests have returned to normal...whew.  He now wants me to start back on the 6MP but at 50 mgm instead of the 100.  I am now tapered down to 5mgm of prednisone and continue with the Colazal, Cort enemas, Canasa and probiotics.  Needless to say, my prolonged use of prednisone over the past eleven years has done a lot of damage.  I developed osteoporosis, high blood pressure (very well controlled though) and this past round of prednisone has raised my blood sugar levels (well controlled now with strict diet).  I still am in a bit of a flare, slowly getting better.  Remicade and surgery not options.  Seeing a specialist at Univ of PA Hospital on Sept. 24th.  Hopefully I will be in remission by then.
 
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.


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 8/27/2009 11:02 AM (GMT -6)   
Glad things are slowly getting better! Why aren't surgery or Remicade options?

23 year old female from the UK. Diagnosed with Ulcerative Proctitis Jan '08 (plus mild inflammation in sigmoid) Hospitalised Jan '09 for 3 days; Hospitalised Feb '09 for 7 days.
  
Currently taking daily: 
(Recently finished course of Prednisolone), 100mg Azathioprine, Asacol suppository x 2, 1g Pentasa granules x2
Motilium (anti sickness), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Fybogel.
                             
                             


quincy
Elite Member


Date Joined May 2003
Total Posts : 30704
   Posted 8/27/2009 1:55 PM (GMT -6)   
I would definitely consider surgery....long before the meds you've been on considering the permanent side effects that have already been established.


I guess quality of life is what I'm thinking....

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~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 !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 8/27/2009 3:13 PM (GMT -6)   
     I went to a GI surgeon last year after my hospitalization.  His opinion was that my case was considered moderate, not severe and surgery at my age and with my risk factors would be prone to a lot of complications and my quality of life, if I survived the surgery, wouldn't be any better than it is now, if not worse.   At the moment, my only complaint is that I have rectal discomfort, no bleeding, no diarrhea, no nausea.  From reading the posts, there are a lot worse cases than me.  My GI doctor said that if it were possible to just cut out the affected area it would be a cinch but unfortunately ulcerative proctitis has a tendency to move up the intestinal tract.
     I was exposed to the TB virus and test positive on the skin patch test.  My chest xray is normal but the TB virus is dormant in my system and Remicade could activate it.  Also, from what I have read in the posts, Remicade doesn't work in a lot of cases or stops working after so many infusions.
    
 
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.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/27/2009 7:22 PM (GMT -6)   

Christine - I think you are doing exactly right.  We who are over 60 have to look at UC a little differently, I believe.  I would not consider surgery unless life threatening problems occurred.  My new specialist said at my age (69) Remicade and similar would be a great risk and he would never recommend it - I think most he said was chance of infection - extremely serious at my age. 

Keep moving in the right direction, Christine!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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