Surgery for crohns/ulcerative proctitis

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Regular Member

Date Joined Sep 2008
Total Posts : 41
   Posted 8/22/2009 11:22 PM (GMT -6)   
Hi I am wondering if there is anyone out there that has had surgery for ulcerative proctitis that has not responded to treatment.  I was dx with crohns in 1994 have had a few peri-rectal abscess surgeries and mainly my disease remains rectal. I had great results with Remicade and Tysrabri both but allergic to Remicade and couldnt tolerate side effects of Tysrabri. I am running out of medications do not respond to steroids, asacol, imuran, 6 MP, flagyl, and basically everything even tried Humira. I am going to the Cleveland Clinic this week for the first time and am so frustrated with treatment and doctors that I am already setting myself up for disappointment. Any advice??? Thanks in advance
Jen G

Veteran Member

Date Joined Aug 2008
Total Posts : 5965
   Posted 8/22/2009 11:40 PM (GMT -6)   
     I know your pain.  My flares of ulcerative proctitis are getting closer and closer together with my last remission only lasting from Nov of 08 to May of 09.  Still flaring but down to 10 mgm of prednisone.  I am not a candidate for Remicade but from most of what I read here, I am glad I am not.  The doctor had me on 100 mgm of 6MP this last time but it sent my WBC down to 1.6 and now he stopped it for a few weeks to see if it will come back up.  I really doubt I will even go back on does nothing to keep me out of flares.
     Sorry I cannot offer you any advice except for the fact that you are going to the best place for treatment.  Do you live in Ohio?  My GI doctor is sending me over to the Univ of PA hospital in Philly.  I have an appointment with a Dr. Leichenstein on Sept 24th.  Waiting since the beginning of July to see this guy. 
     My bowel movements are formed but usually have pain while passing normal sized stool.  I am not bleeding anymore though.  Good luck to you.
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****.

Regular Member

Date Joined Sep 2008
Total Posts : 41
   Posted 8/24/2009 8:52 AM (GMT -6)   
Thank you for your reply. I live in Michigan and am so hoping that Cleveland will have some answers for me. I am trying to work full time and right now am off again on medical missing alot of work related to the proctitis. Right now I cant even eat without it running right through me and the blood and mucus is crazy.
Crohns since 1994, inflammatory arthritis
Allergic to Remicade which helped me so much for about 3 years
Allergic to Imuran
Taking Asacol and Aciphex, rowasa enemas, prempro, synthroid, xanax, darvocet, elavil, cymbalta, folic acid and vitamin D

Forum Moderator

Date Joined Mar 2003
Total Posts : 10407
   Posted 8/24/2009 10:40 AM (GMT -6)   
Wakabo, the surgery for Crohn's would likely be different from that for UC. People with UC have the entire colon removed, because if only part is removed the UC will almost always develop in the part that is left. People with Crohn's have resections, or removal of the affected part only. This is because the Crohn's can affect any part of the digestive tract, so it is likely to recur no matter how much of the colon is removed. Also, I believe J-pouches and K-pouches don't work for Crohn's patients.

Good luck with your appointment.
 Ulcerative colitis forum co-moderator
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"

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