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J's Mom
Regular Member

Date Joined Oct 2008
Total Posts : 109
   Posted 3/3/2011 5:40 PM (GMT -6)   
Just got home from J's second opinion at Cleveland Clinic with Dr Strong. First let me say we were impressed with the whole experience. Everyone was very nice and there was not waiting. Best news is Dr Strong says there is not reason for J to have surgery at this point (he was scheduled to have surgery today at another facility!). He said that the daily mucus and the bloody mucus that he has occasionally is ok. He explained that the blood is probably not the UC as normally the UC basically "burns itself out" once the diseased colon is gone. He only has approx 5" of rectum/colon or whatever remaining. He said the blood was likely caused because the stool that normally passes thru the rectum/colon nurishes the mucosa and since it no longer gets that nourishment it can become irriated from time to time (i get a litte irritated when I don't get nourishment too smilewinkgrin ). His said that they don't start watching for the increased risk of cancer until someone has had the disease for at least 5 years. His recommendation was to return in 3 years and they will scope the remaining colon/rectum and take biopsies. They will continue to do this every few years. The only reason he would need to have surgery would be if dysplasia (precancer) was present with the biopsies, if J seemed to not feel well  or if the rectum started to stenosis off so they could not get the scope in. He said if the surgery would be needed anytime in the future that they would get all they could thru the outside and would get the remainder if needed laparoscopically.
I can not tell you the emotions that Daddy and I went thru on our 3 hr drive home..thinking that had we not decided to go get this second opinion we would right now be sitting in the surgery waiting room while J was having a major abdominal surgery.
Praise God for guiding us in the right direction. Thanks to everyone here for offering recommendations to go to the Clinic.

Post Edited (J's Mom) : 3/3/2011 3:51:51 PM (GMT-7)

Veteran Member

Date Joined Oct 2008
Total Posts : 938
   Posted 3/3/2011 6:42 PM (GMT -6)   
This is great news! I was also very impressed with the staff and facility at CC. I'm glad you guys had such a great experience and your son is able to avoid surgery. :-)
UC dx 2/08
Former treatment:

Asacol, Rowasa, Prednisone, Canasa, Cortenema

Current treatment:

Lialda (4 pills 1xday), Prednisone, Rowasa nightly, B-12 Supplement

Unable to stay off Prednisone for more than 4-6 weeks without flare up. Looking at other options.

Veteran Member

Date Joined Apr 2009
Total Posts : 587
   Posted 3/3/2011 6:56 PM (GMT -6)   
Great news!!!
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Another UC wife
Veteran Member

Date Joined Jun 2007
Total Posts : 2111
   Posted 3/4/2011 9:32 AM (GMT -6)   
Awesome news. What a weight off all your shoulders.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 3/5/2011 1:36 PM (GMT -6)   
Thanks for sharing your joy!! God Bless
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 3/5/2011 3:11 PM (GMT -6)   
Glad to hear! Well worth the drive to hear THAT!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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