Seeking Advice - J-Pouch Surgery for FAP - Weight Concerns & Surgeon Issues

Hey all!

I am about at my wits' end right now and I thought I would reach out and see if anyone can help me out. You see...to make a long LONG story a bit shorter...I suffer from a genetic disease called FAP. After having a colectomy done in 2007, it was found that I was still growing way too many polyps in what is left of my intestine. So...at the suggestion of my wonderful gastroenterologist, I went to see the surgeon who did the 1st surgery for a consultation on getting a J-Pouch constructed. At the time, I weighed about 245 lbs. NOTHING was said about my weight being an issue, and the surgeon scheduled the surgery.

I went in for what I believed was the 1st in a 2-step procedure to build the pouch, leaving me with a temporary ostomy. I was fine with that. Well, the surgeon attempted to do it in just 1 step alone. I was cleared to go home after a week in the hospital but returned to the ER just 2 days after coming home in dire pain. Turns out I was growing septic because the pouch did not have enough time to heal itself and sprung a leak. I was immediately put into emergency surgery. I woke up with a HUGE hole in my stomach and a sucking machine attached to it. I was horrified!!! I was told that I was "too big to have a successful pouch done or a successful ostomy placed" and I was taken off foods and put on IV nutrition for a person weighing only 125 lbs. Basically, my surgeon was starving me in order to get my weight down. I was in the hospital for 2 very long months while I waited for him to decide I was small enough to redo the surgery. Finally, in September, he cleared me and back into the operating room I went. I woke up with an ostomy which I figured I would. What I didn't count on was being told that he didn't rebuild the pouch and I would have the ostomy until I got to his "ideal weight".

I have been struggling to lose the weight needed for him for 3 years now. I finally resorted to getting the Lap Band placed in March (best decision ever) and I managed to go from 245 lbs to 200 lbs between March and now. But...sadly...it is STILL not good enough for him! He wanted me to be 190. Then it changed to 185. Now it is 175! I asked to have a CT scan done to see if the "passageway" is clear enough for the surgery...and he refused me because I am not skinny enough!

My question to all of you is this. Do you know of anyone my weight or heavier that has had a successful J-Pouch surgery when it was done in the 2 steps that it should be? Do you know of anyone my weight that has had successful reconstruction surgery? I have talked to 2 different surgeons who have both said that I have lost enough weight for it to work, but they would not do the surgery because my surgeon happens to be the head honcho at the hospital. Needless to say, I am searching for another surgeon out of a different hospital. But I am more than positive that people heavier than me have had success...
My goal was to have the 1st surgery in December (even if I had to spend Christmas or New Year's Eve stuck in the hospital)...and I have worked so very hard to lose this weight...practically starving myself!!! I think that I should at least be given a CT scan to see what's going on!!! AND...to top it off...I have had a hernia at the stoma site for over a year...which he refuses to mesh because he claims that it will just grow back due to...again...my size...and it causes me almost constant pain. It is getting worse now that I am losing weight because my stomach is starting to hang down, causing the hernia to move. I am on heavy painkillers every day. There is no reason for this that I can see.

Please help!!!
Thanks for reading my novel!
Allie

Sweetie,
Sounds like this surgeon has issues and is making them your problem. The fact that you have lost weight and have gone as far as a lap band shows him that you're serious about your weight loss. Yes, being thinner would make his life easier, but if this man keeps changing the goal posts, how can you have any kind of rapport with him? I think it's time you found another surgeon. Maybe speak to your stoma nurse who will know who is a bit more laid back about weight issues.

Good luck.

I definitely agree you should get as many opinions as you can and find the best surgeon before you agree to any more surgery. I made sure I had the best bloke for my surgery and am extremely pleased with him. Would love to recommend my surgeon, I'm sure he'd be able to help you. But Perth's probably a bit too far away to be practical.
Hope things get better for you soon.

I agree too. Talk with an ostomy nurse about another surgeon, one who is willing to work with you as you are. Geez, I hope it isn't the same head honcho that's doing mine in January!

Geezus, who the hell do they think they are playing with our lives like that? It really makes me sick. I don't know weights in pounds, and you have to starve yourself. And hunny, I do have 2 big hernias. I know how painful they are as well. That's just plain negligence to me. I'm having my stoma nurse look at my surgery too. Ask one, as these people have said. XXX Good luck, hunny. XX Mooza XX Australia XXX. It really makes you wonder. They really can ruin lives too.

Living with Your Ostomy | Hollister

Allie, if you are looking for a really good surgeon, I recommend Dr. Stephen Wexner at the Cleveland Clinic in Ft. Lauderdale, Florida. He deals with a lot of FAP patients and has patients come to him from out of the US. He is no-nonsense, matter-of-fact. And I have FAP, had stage 3c cancer before it was found, and had him do a permanent ileostomy after my pouch also failed. But that pouch was not used until 9 months after it was created, so it could heal but leaked anyway. If you have to have your duodenum removed for the FAP, I would recommend a hepatic surgeon in Atlanta - Sarmento. Good luck and do not let someone with little experience do surgery that they think they can do. Go to the specialists.

ALLIE...sounds like you have been really put through the mill..your surgeon's!!!! Hope you can find another one real soon. Your gastro doc should be able to tell you of other surgeons, plus like the others have said, check with your ostomy nurse. You have been through too much pain...emotionally and physically!!!! Hope things change for the better for you REAL SOON.

Allie - I used to live near you (wonder if we had the same Dr). When I needed surgery, I was sent to a general surgeon. I'm sure he would have done the job, but was planning on cutting across my abdomen. I called the Crohn's and Colitis Fdn and they recommended Dr. Joel Bauer. He did the surgery using an old scar in a crease and 14 years later, I had to point out where the surgery was to doctors since they couldn't see the scar. There was one floor of one wing at Mount Sinai in NY just for GI patients. On the door to each room was the name of both the patient and the doctor. The great majority of doctors were Dr. Bauer or one of his partners. The only partner name I remember is Dr. Gorfine. The surgeon here (in CA) made a mess. I have a great GI doc here but plan on bringing my records to NY and see Dr. Bauer before scheduling my reversal. Would love for him to do my reversal, but at the very least I want his opinion. Btw, when he did my surgery, I was steroid dependent and weighed 180. I think so highly of this guy, I went back to him the following year when my gall bladder had to come out and a year after that, he did a difficult procedure on my mother - and you send your mother to the best doc you can find. Give his office a call. They're located off 5th Ave around E. 61st St. Good luck. Keep us posted.

Thank you so much! I would have replied sooner... I thought I had my email set to let me know when someone replies. You don't happen to know his phone number, do you? The surgeon I have is Dr. Rolendelli out of Morristown Hospital. I would never recommend him to anyone. I have gone down from 245 pounds to just 200, and he said I am still too fat to have a reversal done and a pouch reconstructed.

Allie

Did you get the reconstruct in January? Was it done at Morristown? My surgeon is Dr. Rollendelli out of there...the head of colo-rectal surgery there. I would NEVER tell anyone to go to him again. I mean...I am down to 200lbs...and I am more than sure that people of my weight have had successful pouch reconstructions!
Allie