Fistula update - Surgery / I could use some advice
The news is bleak. I left the surgeons office gobsmacked and with a huge decision to make before next Wednesday, which is the day I am scheduled for surgery (December 18). I took a Xanax so I'm pretty mellow at this point, but I've had my share of tears already.
Option 1: Come off of TPN entirely and continue to deal with the leak the way it is for the rest of my life. Pain management would occur during times when I get a collection of ick and my stomach gets all sore and swollen. This happens about once every 4-6 weeks. Usually it knocks me out because I feel totally crappy and then for a week I deal with pain, swelling and much tenderness in my abdomen. The reason to continue to deal with the leak is that it still could heal on it's own someday, or not. Potentially I could have it the rest of my life. This is the lower risk option. Things to be considered would be abscesses and potentially infection since I do have an opening going to my stomach organ.
There was discussion regarding my eating and how difficult it is. I asked if he thought that my stomach would stretch at all allowing me to take more than a couple of bites of food and he felt that there is probably a lot of scar tissue on my stomach organ (what's left of it anyway) and that it is unlikely that my volume will ever increase much beyond what it currently is, especially given that I have been eating and I have in terms of volume not increased at all.
The leak it seems is low output and therefore manageable, but I have to decide if it's livable. Some days it is, and then other days like today it isn't.
Option 2: Surgery to excise out the fistula and the hole in my stomach. This is not w/o peril because of scar tissue. It's possible that there would not be enough stomach or esophagus left to sew the new incision back together. There may be poor blood flow in that area and potentially it could leak again and create another fistula, or cause me to become septic if the leak was contained in my body cavity. Worst case scenario is that the fistula and the gastric leak hole are not viable to be fixed he would have to do a complete removal of my stomach and I would be left with some intestine attached to my esophagus. The malabsorptive part of my DS would be left alone. I would have to eat 6 or more times a day. Everything would have to be well chewed and only small amounts could be swallowed to avoid impaction. Pills would need to be taken one at a time and with 10 minutes spread between them. More than likely he said that I would not gain weight, but I would lose weight and would probably have to fight to keep my weight at a normal level and to maintain nutritional competency.
If he is able to fix the leak hole and the fistula I could end up with a stricture (he suspects I have one now, hence my inability to eat a "normal" bite of food and the pain I feel when I have on occasion exceeded my limit.) making eating even more difficult. He said I could get another gastric leak. He said that surgery may make eating better, but it might not. There is no way to know.
I really don't know what to do. On one hand I could live with the fistula for a few more months, but frankly, I really am tired of getting sick every month and feeling sore and miserable. When I do feel good it's all great and I forget I even have a problem, but then there is always something that reminds me I'm not completely normal. I don't know how much longer I could put up with the leak and the fistula.
On the other hand, surgery potentially could fix all my issues, but it could make eating worse, or better. Or worst case I end up with no stomach at all, just the malabsorption part. of my DS and if I lost too much weight I would have to have my common channel revised to a longer limb to reduce malabsorption.
I'm scared.
I don't know what to do.
Knowing what you know, what would you do? It's such a crap shoot. I feel like I am damned if I do and damned if I don't.
Maddie
Option 1: Come off of TPN entirely and continue to deal with the leak the way it is for the rest of my life. Pain management would occur during times when I get a collection of ick and my stomach gets all sore and swollen. This happens about once every 4-6 weeks. Usually it knocks me out because I feel totally crappy and then for a week I deal with pain, swelling and much tenderness in my abdomen. The reason to continue to deal with the leak is that it still could heal on it's own someday, or not. Potentially I could have it the rest of my life. This is the lower risk option. Things to be considered would be abscesses and potentially infection since I do have an opening going to my stomach organ.
There was discussion regarding my eating and how difficult it is. I asked if he thought that my stomach would stretch at all allowing me to take more than a couple of bites of food and he felt that there is probably a lot of scar tissue on my stomach organ (what's left of it anyway) and that it is unlikely that my volume will ever increase much beyond what it currently is, especially given that I have been eating and I have in terms of volume not increased at all.
The leak it seems is low output and therefore manageable, but I have to decide if it's livable. Some days it is, and then other days like today it isn't.
Option 2: Surgery to excise out the fistula and the hole in my stomach. This is not w/o peril because of scar tissue. It's possible that there would not be enough stomach or esophagus left to sew the new incision back together. There may be poor blood flow in that area and potentially it could leak again and create another fistula, or cause me to become septic if the leak was contained in my body cavity. Worst case scenario is that the fistula and the gastric leak hole are not viable to be fixed he would have to do a complete removal of my stomach and I would be left with some intestine attached to my esophagus. The malabsorptive part of my DS would be left alone. I would have to eat 6 or more times a day. Everything would have to be well chewed and only small amounts could be swallowed to avoid impaction. Pills would need to be taken one at a time and with 10 minutes spread between them. More than likely he said that I would not gain weight, but I would lose weight and would probably have to fight to keep my weight at a normal level and to maintain nutritional competency.
If he is able to fix the leak hole and the fistula I could end up with a stricture (he suspects I have one now, hence my inability to eat a "normal" bite of food and the pain I feel when I have on occasion exceeded my limit.) making eating even more difficult. He said I could get another gastric leak. He said that surgery may make eating better, but it might not. There is no way to know.
I really don't know what to do. On one hand I could live with the fistula for a few more months, but frankly, I really am tired of getting sick every month and feeling sore and miserable. When I do feel good it's all great and I forget I even have a problem, but then there is always something that reminds me I'm not completely normal. I don't know how much longer I could put up with the leak and the fistula.
On the other hand, surgery potentially could fix all my issues, but it could make eating worse, or better. Or worst case I end up with no stomach at all, just the malabsorption part. of my DS and if I lost too much weight I would have to have my common channel revised to a longer limb to reduce malabsorption.
I'm scared.
I don't know what to do.
Knowing what you know, what would you do? It's such a crap shoot. I feel like I am damned if I do and damned if I don't.
Maddie
HW (pre RNY) 430 / HW (pre DS) 302 / SW 288 /
Lowest weight 157 / CW 161 / GW 150
"I'm just one stomach flu away from my goal weight"
Barbara - Ex-Crapbander to DS. Love you Dr. K. 
Awww man, Maddie!! You know... I have been reading this form since before you had your revision and I've watched you the whole time and I swear; I have not seen you catch a break!!
Honestly, I'd think about it longer than just a week. I understand that you're sick of being sick. But the surgery might make things worse.
Is there anyway they can check out the width of the lining of your stomach to see if it can make it through a surgery without leaking again?
Can you get a second opinion?
(((((HUGE HUG)))))
Is there anyway they can check out the width of the lining of your stomach to see if it can make it through a surgery without leaking again?
I asked this same question, to do an endoscopy and he said it would not help show anything other than where the hole is. All the scar tissue and bigger issues reside on the outside of my stomach organ.
I asked this same question, to do an endoscopy and he said it would not help show anything other than where the hole is. All the scar tissue and bigger issues reside on the outside of my stomach organ.
HW (pre RNY) 430 / HW (pre DS) 302 / SW 288 /
Lowest weight 157 / CW 161 / GW 150
"I'm just one stomach flu away from my goal weight"
have you considered a second opinion, perhaps at one of the university hospitals in NYC ,,, all of the famous DS doctors denied me surgery as too complex, high risk, ya yaya, ,,,, Dr Anthone did exactly what Dr Gagner planned in 04, no hitch, not even pain really, Im angered at those doctors for denying my good health for 6 years. There's a cure and a doctor you just haven't found him yet.
. I have a friend who is a transplant surgeon in Florida (livers, kidneys, pancreas) who works closely with GI doctors. He works at the Mayo clinic and offered to have another gastro surgeon who deals with this sort of issue frequently, usually due to cancers, but other reasons as well, take a look at my CT scans and paperwork and to call me. I mailed everything from the last year, all my scans and medical records, fedex to him yesterday after I got home and got advice to get a second opinion. He should get it today. I should hear from him by tomrorrow or Friday.
Thanks!
Thanks!
HW (pre RNY) 430 / HW (pre DS) 302 / SW 288 /
Lowest weight 157 / CW 161 / GW 150
"I'm just one stomach flu away from my goal weight"
Sorry Maddie~ I hope your health takes a turn for the better. I would do what i felt would be in my best interest for the long haul (Dr's approval of course) do we ever know what is 'right" to do? I can only say for myself if I suffer and don't take any course then I suffer... that's it ..I am on my own.
I think you know deep down what u should do for u......
I think you know deep down what u should do for u......
ROSE 78
I wish I did know deep down what I should do. When I decided to have an RNY it was as though the universe said YUP...go for it. I never felt so sure about a decision in my life. When I decided to have the revision I had a lot of reservations, but went ahead and did it anyway and well, I am not saying I jinxed it because I don't believe in such stuff but I did have a LOT of complications.
I really want to have that peace, that the decision I am making is the right thing to do and that it will all work out. Unfortunately, I don't have that peace. I don't have bad feelings or reservations, I am scared, that is all. In the end I don't know how much longer I can deal with the leak and the fistula and feeling ****ty. I'm having a lot of buyers remorse right now, but I can't do anything about it. It's water under the bridge and I must deal with it because I made the decision to have a revision. I try to keep a good thought about it and never give up trying because hope is what keeps me going. I get frustrated that I cannot eat much, but I don't stop trying. I have come to realize somewhat the hard way that my life may forever revolve around protein drinks. I can deal with that. I must deal with it. If I don't deal with it I might die. That is not even an option for me.
I'm not a religious or spiritual person, but I'm praying to the universe or God or whomever for peace in my decision. Whatever happens just doesn't affect me, it effects everyone around me, my husband, my stepdaughters and stepson. I love them all too much to leave them with a stepmother who cannot be there for them. I never had kids of my own, and though I know that my steps have their own Biomothers, I am more of a mother to them than their own female parental unit.
I really want to have that peace, that the decision I am making is the right thing to do and that it will all work out. Unfortunately, I don't have that peace. I don't have bad feelings or reservations, I am scared, that is all. In the end I don't know how much longer I can deal with the leak and the fistula and feeling ****ty. I'm having a lot of buyers remorse right now, but I can't do anything about it. It's water under the bridge and I must deal with it because I made the decision to have a revision. I try to keep a good thought about it and never give up trying because hope is what keeps me going. I get frustrated that I cannot eat much, but I don't stop trying. I have come to realize somewhat the hard way that my life may forever revolve around protein drinks. I can deal with that. I must deal with it. If I don't deal with it I might die. That is not even an option for me.
I'm not a religious or spiritual person, but I'm praying to the universe or God or whomever for peace in my decision. Whatever happens just doesn't affect me, it effects everyone around me, my husband, my stepdaughters and stepson. I love them all too much to leave them with a stepmother who cannot be there for them. I never had kids of my own, and though I know that my steps have their own Biomothers, I am more of a mother to them than their own female parental unit.
HW (pre RNY) 430 / HW (pre DS) 302 / SW 288 /
Lowest weight 157 / CW 161 / GW 150
"I'm just one stomach flu away from my goal weight"
Maddie, I agree with Walter--get a second opinion. Not that I think you have been steered wrong or anything like that, but this is a major decision, one that could affect your health forever. There is nothing wrong in hearing what another voice of experience has to say.
Based on what just what you have presented, I would probably opt for surgery, but I don't envy your decision. I'm so sorry you have had to go through all of this.
Based on what just what you have presented, I would probably opt for surgery, but I don't envy your decision. I'm so sorry you have had to go through all of this.
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