Ulcerative proctitis and rectal cancer

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Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5507
   Posted 8/15/2009 1:28 PM (GMT -6)   
     I am getting a bit paranoid I suppose but I've been in a flare with ulcerative proctitis since the end of May.  My flares are getting closer and closer together even on the Colazal and the 6MP had to be stopped for two weeks to see if my white count will increase (it was 1.4 on 100 mgm).  Prednisone is 15 mgm one day and 20 mgm the next.
     My GI performed a sigmoidoscope early on in my flare and took biopsies which just showed inflammatory disease, but my paternal grandmother died from cancer of the rectum and that thought still lurks in the back of my mind.  So, I guess I am looking for some reassurance...lol.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


quincy
Elite Member


Date Joined May 2003
Total Posts : 25764
   Posted 8/15/2009 1:34 PM (GMT -6)   
Hi Christine....when was your last c-scope? Do you have any inflammation around the cecum?

Have you tried Asacol in the past or just Colazal?

Can you not use any 5ASA enemas?

I agree the fear of cancer is with most of us....I would say that all you can do is be checked regularly and have blood tests, although some cancer markers are false positives, so that sometimes is a fear enhancer.

Maybe not reassuring, however.....it would be nice for you to have a break from all this crap.

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd 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 : 5507
   Posted 8/15/2009 3:01 PM (GMT -6)   
     My last colonoscopy was May of 08 but the doctor did a sigmoidoscope with biopsies this past May.  When I was first diagnosed back in 98 I was put on Asacol but since my problem is strictly in the rectum my GI doctor said Colazal works better and in 2000 I was placed on Colazal.   Since then my flares have occurred in 2002, 2003, 2005, 2007, 2008 and 2009.  Each flare seems to be lasting longer too.  I was placed on 6MP in 2002, so you can see it really hasn't kept me out of flares at all.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


quincy
Elite Member


Date Joined May 2003
Total Posts : 25764
   Posted 8/15/2009 4:14 PM (GMT -6)   
There's also apriso or Pentasa or Lialda...not all get along with Colazal.

I would also suggest the 5ASA enema instead of the cortenema...

What exactly are your symptoms?

Have you tried to add any fibre supplements to your intake?

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd 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 !!!
 


lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 244
   Posted 8/15/2009 6:01 PM (GMT -6)   
Hi Christine....I too have ulcerative proctitis. I was diagnosed in October 2007 and never have been in remission since the August 2007 when my symptoms started. This disease is an awful thing to have thats for sure. In April of this year I had a colonoscopy and it showed it was severe ulcerative proctitis with a cecal patch. I was then put on prednisone and still to this day am on it. This last thursday I had a sigmoidoscopy and it showed that it went from severe to mild ulcerative proctitis......so we know that the prednisone is working (Gosh....i would hope so....its been 5 months straight of being on it). My dr took me off of asacol and just has me taking proctofoam and prednisone because the ASA and colazal have had no effect at all on me. After the sigmoidoscopy I was supposed to start remicade but because of the progress we are holding off....and he wants me to start weaning off prednisone.  sooo....I am scared of flaring extremely bad again....I really want to get off pred because its a nasty drug and ive been on it so long....but once im off of it I will still be inflammed with blood, mucous, and L sided pain like I am now...and I just can't see how I won't go severe again.  It just seems as though my dr is going to settle with me being mild inflammed and then wait for me to become severe before finding something that will totally put me in remission.  
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
 
Meds:
proctofoam
prednisone (15 mg)- staying at that for this minute
Vitamin D
Calcium
Discussing Remicade
 
Azathioprine (50 mg)   serum sickness reaction 
pentasa, canasa, asacol  didn't work
 
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5507
   Posted 8/16/2009 7:24 PM (GMT -6)   
     Lovemyboys....prednisone has given me osteoporosis.  My GI doctor calls it the best/worse drug.  I have a close friend who suffers from COPD and when she has flare ups she also is put on prednisone.  Of these two diseases....I think you and I are better off, even though it is painful, it sure beats not being able to breathe.
     I am now tapered at 15 mgm of prednisone.  The doctor took me off the 6MP for a few weeks.  He had me on much too high of a dosage...100 mgm.  My WBC dropped to 1.4.  At the end of next week I have to go for a stat CBC.  I have concerns about going back on the drug.  I was at a maintenance dose of 50 mgm for seven years, but after the first two years on it, I still started flaring, so guess my body developed an immunity to it.  Remicade is not an option for me.
     I have an appointment with a GI specialist at the Univ of PA hospital on Sept 24th.  Hope he can give me a solution, but I heard he is a Remicade specialist and I flat out refuse to go that route.
     Have you ever gone to a GI surgeon and gotten his opinion on your condition?  I saw one after my hospitalization last year.  He said my condition was moderate (hate to see what severe is like) and with surgery comes a whole new list of complications which would be worse than my present condition.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 244
   Posted 8/16/2009 7:43 PM (GMT -6)   
I am afraid of getting osteoporosis because of the prednisone that i have been on for 5 months now. I am only 26 years old and my joints and body already hurt like I am in my 90's some days. I have mentioned it to my GI and he says that it could possibly be from the prednisone but it could also just be from inflammation in my body attacking joints or something along those lines.

I have to agree I rather have UC then COPD thats for sure! I try to live my life as if nothing is wrong with me. Sometimes thats easier said then done. I have 2 little boys ages 6 and 1 that I have to keep up with so thats a nice distraction most of the time. I have read that people say not to get pregnant even if you have mild inflammation or minimal symptoms because they can come back in full force from hormones. I accidently got pregnant with my 1 year old 2 months after I was diagnosed. The GI I had took me off of all of my medication and so I was off of all meds for over a year..... I wonder if thats why I cant get into remission now.
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
 
Meds:
proctofoam
prednisone (15 mg)- staying at that for this minute
Vitamin D
Calcium
Discussing Remicade
 
Azathioprine (50 mg)   serum sickness reaction 
pentasa, canasa, asacol  didn't work
 
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5507
   Posted 8/17/2009 2:21 PM (GMT -6)   
     How did you feel while pregnant and off meds?  My daughter's friend has RA and developed it after she gave birth to her son.  I feel so bad for her, she is now 37 yrs old and they only have the one son.  She said she is on so many meds she is afraid to get pregnant again.  The boy is ten years old.  My heart goes out to all you young people who are suffering so with these autoimmune diseases.  Years ago we never heard of all this stuff.  Wonder if it is the environment or in the foods we eat...so many preservatives.
     I believe I had IBS as a youngster...my mother said I had a "nervous stomach".  If I got nervous before a test in school I would get diarrhea, but usually I suffered with constipation.  I can remember mom giving me enemas!  This was in the 50's.  I did like Castoria though...that was a physic but tasted pretty good.  At least I would be able to move my bowels the next day.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 244
   Posted 8/17/2009 4:41 PM (GMT -6)   
I felt ok when pregnant....had lots of bleeding which isn't normal but just dealt with it. I started having more problems with symptoms when I was breastfeeding and led to heavier bleeding and stomach pain and joint pain also. My bleeding is soo much better because of the prednisone but when I drop the dose it slowly increases. I would love to get pregnant again within the next year but we will have to see. After one more...i will be done and get my tubes tied. We will have to wait to see if I am feeling better or not so I can make the choice.
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
 
Meds:
proctofoam
prednisone (15 mg)- staying at that for this minute
Vitamin D
Calcium
Discussing Remicade
 
Azathioprine (50 mg)   serum sickness reaction 
pentasa, canasa, asacol  didn't work
 
 
 
 
 
 
 

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