Anyone have an experience with a fistula?? Freaking Out!!

Hi all, I am 10 months post-op and had been doing great until now. I am down close to 100 lbs but am now nervous!! I have been having what I call "attacks" for several months now. They have been triggred by liquid percocet (3 x's) a pill, liquid contrast etc. I feel a burning, seering pain in my pouch that radiates through my chest to my back. I feel it come on, in a matter of minutes and brace myself. I cannot even explain how bad and frightening the pain is. I hypervenilate, turn a horrible whitish/ gray color, turn totally clammy, sometimes attempt to vomit (usually dry heave) and have almost fainted before. Sometimes it can last for several minutes to several hours. I basically sit on the floor in the fetal position until it passes. VERY SCARY!! So, ran this by my GB surgeon. He does not know what it is. Their thought was that I had an ulcer. I have been on nexium 40 mg twice a day, drinking Maalox like its water etc. I finally was having these episodes along with pouch discomfort and random abdominal pain. It is very odd. I would be fine for a few days, then terrible for a few. Finally I had an upper GI which showed an ulcer with a fistula from the new pouch all the way through to the old stomach. From what I have read, this is very rare. (less than 1 %) It seems to be small, but I am freaking out! They have upped my nexium, put me on sucralfate 4 x's a day and put me on an antibiotic for possible intestinal infection. The hope is that this will seal on its own. If not I may have to have an endoscopy to seal it with a type of surgical "glue". My surgeon seems confident that this should not lead to another surgery. My fears are based on the fact that I also have my third reccurance with thyroid cancer, no gallbladder, a benign liver tumor removed etc. I am a medical disaster at the age of 28, and panic at the thought of having something now screwed up with the GB surgery! My weight has also been hovering at the same number for months, give or take a pound. I still have about 40-50 more lbs to go. Everything I have read about fistulas prevent people from losing or cause them to gain weight. I also was just put on depo-provera for ovarian cysts (another new problem post GB surgery). So, I worry about this weight gain as well. Where is all of this coming from? To top things off, for the last 2-3 weeks I have had bright red rectal bleeding and sharp pain with bowel movements, a lot of blood! My doctors seem to not be concerned since it is bright red. I guess darker stools mean it could be coming from the upper GI tract. Could this be from the fistula or is something worse! Any advice or similar stories would be greatly appreciated. Thanks from a panicked Jaime

I'm surprised at your doctors' apparent ambivolance with respect to your bleeding. I had bleeding from an ulcer, and passed out one morning. My hematocrit was down to 26, and it's taken a while to get it back up. I elected not to be transfused, why take the extra risk. But the doctor said that if I saw any more blood in the stool, to take the next car to the ER. We have been treating the ulcer with Prevacid 30mg BID. I had a colonoscopy which was unremarkable, but the endoscopy showed a stomal ulcer. We did not see any fistula however. I'm going for another endoscopy in a week to see how it is doing. I haven't had any blood show up since then, and it's been six weeks so I'm hoping it is healing. I understand that in some studies, stomal ulcers and fistulas have occurred in 15% of patients, so it's certainly one of the complications. Other studies show a smaller percentage. However, since you're already 10 months out, it's more likely just a persistent ulcer that can likely be treated, but may require a change in diet, perhaps even liquids only for a month or two and maybe a permanent change. Alas, if there's one thing we've all learned first hand, it's that nothing comes without a price. I am not a physician. I would recommend you be proactive, be your own advocate. If you're scared or uncomfortable, insist that they see you, or find someone that will. --Steve

Jaime, As usual, I have to agree with Steve. I've been talking to him a lot about his own struggle with this and he is very proactive with his docs which I believe helps a great deal. I have been down your road in a different way, but the same theme. I've had problem after problem since my GB surgery. I can't say I regret having the surgery, since I know my problems being morbidly obese would have killed me, but I do know this surgery comes with a price. Please please, keep on pushing to find out what is causing this for you and don't give up. If you feel your concerns are not being addressed. GO, run to a different doc. I had to do that before I was taken seriously. Wishing you the best, Cheryl