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 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 re-do 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 dead 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 pain killers every day. There is no reason for this that I can see.
Please help!!!
Thanks for reading my novel!
Allie
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 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 re-do 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 dead 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 pain killers every day. There is no reason for this that I can see.
Please help!!!
Thanks for reading my novel!
Allie