After your "cured".........?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 1/27/2009 12:28 AM (GMT -6)   
Does anyone know if after your colon or dz is gone, will you still get extraintestinal symptoms? I had u/c and lots of ex-i symptoms (erythema nodosum, eye probs, arthritis, geographic tongue). I'm hoping they go away now-I'm still on steroids, so I don't know if they have b/c steroids always treat them. My Dr. can never answer this question. It's always we'll have to wait and see.

Also, I know that auto-immune dz has a higher risk of blood clots, but if I've been "cured" of my colitis, then do I still have that higher risk? What if I still have my rectum? Am I "cured" yet or not.

These may be tough questions. But y'all are so smart. And if you don't know, make something up so i feel better
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 1/27/2009 5:21 AM (GMT -6)   

I had erythema nodosum on my legs, and they cleared up. I ended up with eye glasses and tho my RX improved each year after surgery (until I got old and need bifocals now). I'm hoping that all will clear up for you. I just don't know a lot about the other items but I'm betting someone will come along with some answers for you!
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 1/27/2009 11:13 AM (GMT -6)   

There's no easy answer for this.  Some UCers continue with extra-intestinal manifestations post colectomy, others don't. 


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 1/27/2009 12:34 PM (GMT -6)   
you know what, my RX on my contacts is less now than it was. I never even connected the two.
I had this stuff on my hands, and i still have it but not nearly as bad

Regular Member

Date Joined Jun 2004
Total Posts : 231
   Posted 1/27/2009 3:55 PM (GMT -6)   
I have been post op since 05, but I had spots on my legs till last year. I think finally they are going away. I went to a dermatologist but he didn't have any clue what they were. I just hope my liver has calmed down since the surgery. My enzymes used to be pretty high then. I have started taking hyalauronic acid once a day and it seems to help my skin. It is a supplement. I sent you an e-mail, cause I think we met at the meetings at the hospital for the CCA.
Leslie in KC
Les and DB from KC(Les is a member of UC and Ostomy forum also)
DB diagnosed 11-01-07
psa high for several years from 4 to 10, but last one before surgery was 8.6
Gleason 3+3
Da Vinci on 12-14-07

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 10:30 AM (GMT -6)
There are a total of 3,006,051 posts in 329,296 threads.
View Active Threads

Who's Online
This forum has 161820 registered members. Please welcome our newest member, Dogsitter2.
267 Guest(s), 9 Registered Member(s) are currently online.  Details
Steph6n, Naples, HeartsinPain, Artist Mark, songlady, InTheShop, Hugo18, cppoly, Fresh