Hubby had a local GI for a few years who went "by the book" treating him. I also got a lot of insight and helpful info and advice on the HealingWell UC forums which helped me keep my sanity and his throughout the ordeal. Once he landed in the hospital for 5 1/2 days she asked our permission to submit a referral to Shands and Mayo Clinics. She felt she had done all she could and felt these 2 hospitals were more "cutting edge" and might be able to do more for him. She didn't want to see him suffer any longer.
Mayo Clinic answered first so we began a relationship with them. Within a year or so and failed Remicade his GI Dr (and local Dr) felt surgery was the only option at this point.
It still took about
2 more years for him to make up his own mind that was the way to go after an honest talk with his local GI that we kept in the loop regarding his care at Mayo Clinic.
Fortunately he had 2 GI Dr's who treated him that seemed to be more concerned with him personally and not like some Dr's that just keep you coming back and treating you (or try to) and dissuade you against surgery. Both his Mayo and local GI Dr's you could tell felt very bad that all the various meds and infusion therapy could not help him as they knew he did not want the surgery. His Mayo Dr would speak with me and ask "is he coming around to the surgery decision yet?" and I would say "don't even go there...he is not interested in it". He would mention it at each visit but it fell on deaf ears.
Fortunately his local GI Dr is a straight shooter and a bit more blunt in her approach (in a good way) and she just put it out there and honestly said if it were her father or husband in his same situation she would recommend surgery. She felt that the amount of pain medication he needed to just function (under the care of a pain medication specialist he saw every month) since he was on the highest doses of UC meds and having failed Remicade it was definitely time. She felt it was just a matter of time it could turn cancerous. Maybe it was just that particular day for whatever reason my husband decided right there and then it was time.
I was soooooooooo proud of him that day making that decision. Six months later after getting all the paperwork lined up and a 2 week vacation we had planned for that Oct. he had the surgery Dec. 2010.
His colo rectal surgeon at Mayo we liked immediately. He was very caring and detailed everything concerning the surgery and the whys and wherefors on the possibility of why a j-pouch might not be possible but would not know that until he was in there operating. He only scheduled his surgery that day...good thing...took 7 1/2 hrs. A very tough surgery and he more than earned his salary that day! He met with me in a private room some 8 hrs after the surgery to explain and detail on a board what he did and why the j-pouch was not possible. He knew I was disappointed (and totally drained and exhausted too) and couldn't even speak and ask questions as I was too emotional. He came into the hospital room 2 days later to visit and explain to hubby as well. My husband told him not to worry as he knew he did his absolute best and had no qualms with the end result. The detailed operative notes certainly opened our eyes too and really explained even more just how difficult a surgery it was.
In his case the 3 doctors involved in his care and surgery are very important people in our list to be thankful too.
Also the WOCN staff before, during and after have been awesome also. Fortunately we did not need them much after the surgery...just a few phone calls....as a lot of trouble shooting I have gotten from here and the UOAA forum from other ostomates who are so generous sharing their information which is invaluable.
Post Edited (Another UC wife) : 3/18/2012 8:11:51 AM (GMT-6)