- Joined
- Nov 11, 2010
- Messages
- 12
Hello to all,
After reading several posts here this morning, all I can say is, I hope that everyone is having a good day today. Although like most everyone else I have arrived at this Forum after much suffering, it is plain to see after some reading here that I should count myself as lucky that things haven't been worse for me. I have good health insurance coverage, and I am fortunate to have a wife that cares and helps me every step of the way. Again, I just hope that everyone is having a nice, good day.
Ok, here goes...
I have been battling a fistula for over a year and a half now. It started in May 2009 as a very large abcess that was drained and packed by a general surgeon on an emergency basis. Although the abcess was pronounced healed after a followup exam, for months afterwards I felt the ebb and flow of the elongated lump hiding deep in the soft tissue on my left side. If I pushed on it, I could feel a 'squirting' sensation just up inside me, and some drainage would come from my rectum... I am sorry if that is too graphic. More than one doctor here in the area examined me and told me there was nothing there to address. I live in Connecticut, and last January I went to Yale New Haven hospital/University and was seen by the Director Of Colo-Rectal Surgery and Teaching, and in March of 2010, after an MRI to "map out" the area, he performed surgery on me and cut the fistula out - leaving a huge gaping wound and a seton drain in place. After ten weeks or so, all looked good but I was having intermittent bouts of fairly severe bleeding from the seton drain, so they removed it and have seen me about every six weeks since.
But the problem never really seems to go away. The middle of the gash where the seton drain exited the wound has some "quiet time" but, then it puffs up or swells up (it's hard to describe but it is very uncomfortable) and then it pops open, and pinkish sticky pus drains out for a day or two... and then it sort of closes up and the cycle starts over again. It seems like its less drainage as time goes by, but it also seems like the frequency of the popping open has increased from around every ten days to around every couple or few days. It has now been over eight months since the fistula operation, but every time my surgeon at Yale has poked and prodded it he has said to let it keep healing; that he is optimistic that it will heal and stop blowing open someday. While it still opens and drains externally from the scar area, so far I have not felt the 'internal squirting' feeling inside, so I am hopeful that at least part of the fistula has healed. Anyway...
My regular physician recently referred me to a "Wound Center" that has experience in helping stubborn wounds heal. They examined me, and during the exam I pulled out some of the pus-and-blood smeared gauze pads that I had taken to placing in zip-lock baggies and writing the dates on to keep track of the eruptions - because I was tired of being told things were great when they really weren't - and the wound specialist told me that I really needed to get a second opinion from another surgeon, and that there was nothing else they could do for me. SO....
Last week I went to see a colo-rectal surgeon here in the local area who has a good reputation. He listened to my continued drainage woes, and after examining me with some sort of probe/torture device, he told me that in his opinion the fistula is still there, and that it will not heal on its own without additional surgery. However, he stated that modern methods are moving away from the severe cutting procedure that Yale used, and he wants to knock me out in the operating room and look around in there, and he thinks he will most likely end up performing a two step procedure that will involve putting in a fistula plug from the inside opening (which may or may not be closed now) and then sewing a skin flap over the plug, that I guess he will take from another part of my insides. Talk about terrifying! The surgery is tentatively scheduled for early December. I don't know what to do, every time I think I have made a correct decision in dealing with this thing I end up second-guessing myself after the fact. What if another six months will heal it? What if another surgery will maim me for life? I mean, I can see that something like a plug and a flap could work - but could it work on someone that has already had a fistulotomy? The area is already thin from the extensive tissue removal - I am not a doctor but it seems to me that it would be like plugging a bald tire.. dangerous territory.
Meanwhile, over the past couple of weeks my G.I. doctor (I see him for the decades-long explosive diarrhea that noone can ever seem to explain, even after extensive testing) has had me on Flagyl to try and help close the wound. He is a good guy and he didn't want me to get the first surgery, and he definitely doesn't seem to like the idea of a second invasive procedure. He thinks highly of Flagyl, and it does indeed seem to be causing some subtle changes for the good in the structure and activity of the "fistula/wound/whatever-it-is-now" that is still stubbornly in residence down there. Although my gut feeling is that Surgeon #2 is most likely right about my needing the second surgery with the plug/flap procedure, I am also haunted by the seeming reluctance of Surgeon #1 to go back in there, and by the assertion by my G.I. that more surgery should be avoided at all costs if at all possible. Whew... three weeks to go, time for a sitz bath and another dose of Flagyl... I guess, after all this babbling, that my questions would be:
- Does anyone have any positive experiences in regards to long term use of Flagyl or other meds closing stubborn fistulas over time? I asked my G.I. about Remicade, but he said that Flagyl was a better choice for me because they have not found evidence of actual Crohn's in me, only the chronic, unexplainable diarrhea and resultant abcesses and fistula. I have had barium x-rays, two colonoscopies, blood tests, stool tests, you name it - but no explanation or treatment other than "have more fiber, drink Metamucil, eat a balanced diet" for the ever present diarrhea. But, the damn fistula is my main concern right now, never mind the diarrhea.
- Does anyone have any knowledge of or experience with the fistula plug and/or advancement flap procedures? Success stories, hopefully? I go back and forth from minute to minute on whether to postpone this second operation and to just try and let the Flagyl keep doing its thing. It is so tough trying to figure all this out, with every doctor seeming to say something different, and it has just been complete hell throughout this whole ordeal. Much thanks for any advice or opinions that anyone can offer.
Sincere thanks to everyone who read this post and best of luck to everyone here.
The Unfortunate Seeper
After reading several posts here this morning, all I can say is, I hope that everyone is having a good day today. Although like most everyone else I have arrived at this Forum after much suffering, it is plain to see after some reading here that I should count myself as lucky that things haven't been worse for me. I have good health insurance coverage, and I am fortunate to have a wife that cares and helps me every step of the way. Again, I just hope that everyone is having a nice, good day.
Ok, here goes...
I have been battling a fistula for over a year and a half now. It started in May 2009 as a very large abcess that was drained and packed by a general surgeon on an emergency basis. Although the abcess was pronounced healed after a followup exam, for months afterwards I felt the ebb and flow of the elongated lump hiding deep in the soft tissue on my left side. If I pushed on it, I could feel a 'squirting' sensation just up inside me, and some drainage would come from my rectum... I am sorry if that is too graphic. More than one doctor here in the area examined me and told me there was nothing there to address. I live in Connecticut, and last January I went to Yale New Haven hospital/University and was seen by the Director Of Colo-Rectal Surgery and Teaching, and in March of 2010, after an MRI to "map out" the area, he performed surgery on me and cut the fistula out - leaving a huge gaping wound and a seton drain in place. After ten weeks or so, all looked good but I was having intermittent bouts of fairly severe bleeding from the seton drain, so they removed it and have seen me about every six weeks since.
But the problem never really seems to go away. The middle of the gash where the seton drain exited the wound has some "quiet time" but, then it puffs up or swells up (it's hard to describe but it is very uncomfortable) and then it pops open, and pinkish sticky pus drains out for a day or two... and then it sort of closes up and the cycle starts over again. It seems like its less drainage as time goes by, but it also seems like the frequency of the popping open has increased from around every ten days to around every couple or few days. It has now been over eight months since the fistula operation, but every time my surgeon at Yale has poked and prodded it he has said to let it keep healing; that he is optimistic that it will heal and stop blowing open someday. While it still opens and drains externally from the scar area, so far I have not felt the 'internal squirting' feeling inside, so I am hopeful that at least part of the fistula has healed. Anyway...
My regular physician recently referred me to a "Wound Center" that has experience in helping stubborn wounds heal. They examined me, and during the exam I pulled out some of the pus-and-blood smeared gauze pads that I had taken to placing in zip-lock baggies and writing the dates on to keep track of the eruptions - because I was tired of being told things were great when they really weren't - and the wound specialist told me that I really needed to get a second opinion from another surgeon, and that there was nothing else they could do for me. SO....
Last week I went to see a colo-rectal surgeon here in the local area who has a good reputation. He listened to my continued drainage woes, and after examining me with some sort of probe/torture device, he told me that in his opinion the fistula is still there, and that it will not heal on its own without additional surgery. However, he stated that modern methods are moving away from the severe cutting procedure that Yale used, and he wants to knock me out in the operating room and look around in there, and he thinks he will most likely end up performing a two step procedure that will involve putting in a fistula plug from the inside opening (which may or may not be closed now) and then sewing a skin flap over the plug, that I guess he will take from another part of my insides. Talk about terrifying! The surgery is tentatively scheduled for early December. I don't know what to do, every time I think I have made a correct decision in dealing with this thing I end up second-guessing myself after the fact. What if another six months will heal it? What if another surgery will maim me for life? I mean, I can see that something like a plug and a flap could work - but could it work on someone that has already had a fistulotomy? The area is already thin from the extensive tissue removal - I am not a doctor but it seems to me that it would be like plugging a bald tire.. dangerous territory.
Meanwhile, over the past couple of weeks my G.I. doctor (I see him for the decades-long explosive diarrhea that noone can ever seem to explain, even after extensive testing) has had me on Flagyl to try and help close the wound. He is a good guy and he didn't want me to get the first surgery, and he definitely doesn't seem to like the idea of a second invasive procedure. He thinks highly of Flagyl, and it does indeed seem to be causing some subtle changes for the good in the structure and activity of the "fistula/wound/whatever-it-is-now" that is still stubbornly in residence down there. Although my gut feeling is that Surgeon #2 is most likely right about my needing the second surgery with the plug/flap procedure, I am also haunted by the seeming reluctance of Surgeon #1 to go back in there, and by the assertion by my G.I. that more surgery should be avoided at all costs if at all possible. Whew... three weeks to go, time for a sitz bath and another dose of Flagyl... I guess, after all this babbling, that my questions would be:
- Does anyone have any positive experiences in regards to long term use of Flagyl or other meds closing stubborn fistulas over time? I asked my G.I. about Remicade, but he said that Flagyl was a better choice for me because they have not found evidence of actual Crohn's in me, only the chronic, unexplainable diarrhea and resultant abcesses and fistula. I have had barium x-rays, two colonoscopies, blood tests, stool tests, you name it - but no explanation or treatment other than "have more fiber, drink Metamucil, eat a balanced diet" for the ever present diarrhea. But, the damn fistula is my main concern right now, never mind the diarrhea.
- Does anyone have any knowledge of or experience with the fistula plug and/or advancement flap procedures? Success stories, hopefully? I go back and forth from minute to minute on whether to postpone this second operation and to just try and let the Flagyl keep doing its thing. It is so tough trying to figure all this out, with every doctor seeming to say something different, and it has just been complete hell throughout this whole ordeal. Much thanks for any advice or opinions that anyone can offer.
Sincere thanks to everyone who read this post and best of luck to everyone here.
The Unfortunate Seeper
