Oh Poo! Doc doesn't know if it's UC or Crohn's!

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Regular Member

Date Joined Feb 2007
Total Posts : 420
   Posted 9/20/2007 2:18 PM (GMT -6)   
After doing the pathology on my removed colon, the surgeon and my Doc can't say for certain that it was UC I had. Now they think it may be Crohn's. Ugh. The specialist who is supposed to do my j-pouch is hesitant to do it now, because he says if it's Crohn's I can have problems with the j-pouch. But lots of people who have Crohn's have had the j-pouch done, and they don't ALL have problems, right? Phooey. I guess I have to prepare myself for the thought of having this poop bag forever.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
Surgery August 24, 2007. Home now!

Regular Member

Date Joined Apr 2007
Total Posts : 385
   Posted 9/20/2007 2:50 PM (GMT -6)   
What did the path report say?
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's and UC at 17 (now 20). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.

Regular Member

Date Joined May 2004
Total Posts : 277
   Posted Yesterday 8:27 AM (GMT -6)   
I'm in the same boat as you. Took my colon and can't figure out which it is. Although i was told from my surgeon about all the risks involved with the J-Pouch and i'm not sure i'd go through with it even if i had the chance. Although i do know i have colitis down near the rectum area and will have that removed sooner or later, none of the docs seem to know if i had or have Crohns or colitis.
Ahhhh what do they know anyway
Crohn's for what seems like forever
Bagged in August 2006

New Member

Date Joined Sep 2007
Total Posts : 4
   Posted 9/24/2007 2:38 PM (GMT -6)   
I am replying and asking Nikki2 or anyone else who's child or they themselves have had a Cecostomy for Severe constipation?

My 14 year old daughter has been struggling with severe constipation for a couple years. We've tried Sennakot, Miralax,Stool softeners,enemas,reglan.....the list goes on and on.

The only thing that works now is Go-Lightly (used for colon cleansing ) She has to drink an 8 oz. glass every 10 minutes until she's drank 1-2 liters!!!! This test is pre-ceeded by taking two Duclolax tablets 6 hours prior to drinking the Go-Lightly. Then we start ALL over again with the constipation.

We just returned from Mayo Clinic in Rochester, MN. We go back on Thursday, Sept. 27th for a pelvic ultra sound. The Pediatric G.I. Dr., mentioned a cecostomy at our intitial appt., before her test were completed.

All test last week were normal, except the Gastric,small & large bowel nuclear emptying study, which showed slow transit time.

The G.I. Dr. is consulting with an Adult G.I. motility Dr. as I right this, to see if he'll see my daughter.

The only diagnosis she has at this time, which may or may not be related are : Asperger's & Tourettes syndrome, Ehler's Danlos syndrome, anxiety & depression.

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 9/24/2007 5:17 PM (GMT -6)   
i'm in the same boat,,,,been indeterminate since 1991 UC or crohns and even with the colon out they still don't know. my surgeon said i'd be back for an ileostomy if i went with a jpouch this time....so ileostomy (&only one surgery) it was =D glad i did it..

Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 9/25/2007 2:16 PM (GMT -6)   
I've read that surgery is a cure for Ulcerative Colitis, but not for Crohn's. So, for those of you who don't have a definite diagnosis, I hope you have UC, so you don't ever have to be sick again.
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