I had a wonderful doctor in the very beginning of me getting sick.  I was 500 miles out out of my hometown and hospitalized for my first major malfunction of guts.  He told me to take notes on everything every Dr said to me, to write down any and all questions I could think of and to take those questions with me to every doctor appointment, and to never let a Dr leave the room if I had any questions remaining.  He also suggested that I do my own research on things both before and after every meeting with my dr.  Sounds elemetary, huh?  So many people with crohn's and colitis just smile and nod politely and actually end up knowing less about their issues after an appt than when they walked in.  Following the suggestions of my first doc, I am able to speak to my Dr's in their lingo, rather than as a layman.  This actually encourages the dr to be more detailed and forthcomming with their explainations.  For these reasons and through my own efforts there have been no surprises with my j-pouch.  Not one.  It floors me that people would agree to go under the knife with questions left unanswered or simply on the suggestion of a fallible human (the Dr) without doing some sort of research on their own.  Most every doctor I've been to has helped me get into contact with prior patients so I can talk to someone who's been through it.  The Dr's have since used me for the same reason and it it's a very rewarding experience.  The point being, don't let anyone touch you until you are 100% certain that you have covered all your bases.  Going under the knife is scary and risky, so all the more reason to leave no stone unturned.  I really feel sorry for all those who are forced to welcome surprises in their post-op life, but understand that talking about some things is embarrassing.  Do it anyways.  You can never be uncut.  Ask  questions...even stupid ones.  Take notes on every word spoken.  Do your own research.  Learn the lingo and speak it.  

***One more thing--Never stay with a Dr that doesn't respect you.  If you are uncomfortable with your Dr for even the slightest reason, DROP THAT DR IMMEDIATELY.  In the end, you, alone, are responsible for your treatment, good or bad.

 

Backround:  I am 21 years post surgery.  I knew everything that was going to happen for over a year before the surgery because my docs had strongly recommended it, but I refused (Did the research anyways).  When it came time for the surgery, I had only hours to live.  The surgery was no longer an option.  I was hemhoraging (-sp?)   I either did it, or died before morning.  As a newly wed 19 yr old soldier on a military life flight, I weighed only 80 lbs that night.  I don't regret the surgery ever.  I would never go back.

I am 15 yrs. post pouch surgery. It changed my life for the positive. I sometimes forget how sick with UC I was prior to life with pouch. Sounds like experience for everyone is different. Also sounds like choice of Dr. Is critical. Dr. Fisher was awesome.

My surgery was done at the Mayo Clinic in Phoenix. My colectomy was in July 2013 and the takedown surgery was in the following October. Dr. Tania M. Young-Fadok is surgeon who performed my surgery. She is the Chair of Colorectal Surgery at the Mayo in Phoenix. There are a number of videos on the Mayo site and Youtube that have been done by Dr. Young-Fadok. I did a lot of searching on the web when the decision was made to have the surgery and I was fully prepared with questions regarding the procedure and what to expect after the surgery. All of my questions were answered and more information was provided regarding pre, during and post operation. I  have nothing by the highest regard for Dr Young-Fadok and all of the staff at the Mayo Clinic in Phoenix.

There is not always going to be a lot of black and white rules with surgeries like this; everyone is different.  I followed the recommendations provided and also wasn't afraid to push myself beyond the norms (exercise, different foods and beverages, etc.). I'm 100%- it'll be 2 years next month that I had my surgery.  Thanks doc!

I feel the exact same way Mesa Poucher! To hear you say that validated what I have felt for the last 14 years! Makes me cry! I've always felt I was a guinea pig for my doctor. He just kept telling me "let's do it..you'll love it " but i was never told why i would love it....and I still wonder to this day if i could've controlled it by What I ate and medication. I cant imagine anything being worse than what I go through now. 

I had a very great surgeon and I only have gratitude for the job he did on me; especially after some of the horror stories I've heard from other patients. I don't think my surgeon or my GI Dr. fully explained what life would be like post operation. I spent years figuring out my situation and becoming more frustrated all the time, especially since I am self employed and changed insurance constantly. I remember asking one Dr. if food played a role in my situation and he said, "there's been no studies linking diet to flare ups". And when I told him how much better I felt after restricting my diet he was like "I've heard that from many patients".  Excuse me? Then why didn't you say that?

 

Anyways, to end this rant; as soon as I owned my situation and stopped relying on medical professionals opinions, I've had a lot more peace of mind. I have come to accept that I will never be 100% like i used to be but I have competed in triathlons, traveled all over the world with my job, and having a j-pouch hasn't made much of a difference at all.

Actually my Dr  did something wrong with my surgery and it leaked and caused a massive abscess. ..so when my family filed a complaint with the hospital. ..he removed himself from my case and I was actually discharged with no follow up doctor.  So I had absolutely no clue what to do or expect except from the visiting nurse that came and seen me everyday...and he didnt say a whole lot. 

 

SO really even 14 years later i still don't understand what or the why of it...and still searching for that perfect dr who can explain it to me. I'm so lost and frustrated. 

I don't think I was given the reality scenario vs the perfect scenario. I don't think my surgeon explained truly how things would change. I kept getting the you'll wish you had done it sooner. I regret everyday having had it done. Although 8 years later I've learned to  cope with it. I'm not sure had I had someone to give me their perspective on this like a fellow poucher I might have not had the surgery. I only found this  group after my surgery.

Sideshow - You make a good point (and well stated, too). I forgot to mention that I also did a ton of research on my own, but isn't that kind of the norm these days for people who have serious medical issues to deal with. I hope.

Surgeons are only the mechanics; the rest is up to your treating physician.  My GI gave me lots of good information and I did a ton of research on my own.

Only in hindsight did I realize how little my surgeon did to explain the road ahead. My guess is he thought that he was there to do surgery and the rest would be up to me and others. Fortunately, my local gastro guy is good. And the J Pouch forums are so very useful.

No idea what was happening post op. Would gave been nice to know what to expect.  Maybe from others who had same.  Think maybe a plan of action would gave been good