Post by maggiesara on Jul 31, 2014 13:20:16 GMT -5
As many folks here know, I've had something of a really good news/really bad news post-surgical experience. The good news: Down 140 pounds (says my friend Maureen: "Basically, you've lost my husband"), and complete resolution of my diabetes, high cholesterol, high triglycerides. Bad news: A hernia that looks pretty much exactly like I'm 9 months pregnant (yesterday a woman asked if I was carrying twins), and chronic, incredibly debilitating diarrhea. Those rather clinical terms don't really convey the reality, so let me put it bluntly: On an average day, I will have to use the bathroom 10-12 times. A pretty bad day (and I have....oh, maybe an average of one or two a week) is perhaps 20 times. An incredibly terrible day (and thankfully, I don't have more than one of these every month or so): More than 40 times. For whatever reason, the problem almost always kicks in at night, so we're talking about, roughly, a 12-hour period. I have fallen asleep on the toilet, I have been suicidal more than once, I spend much of my time, MUCH of my time, with my ass throbbing, my stomach distended with gas, and nauseated. I have been diagnosed with C Diff (a GI infection common after abdominal surgery), for which I was treated five times with four different antibiotics. I have been diagnosed with bacterial infections, for which I have been treated with other antibiotics. I have made a series of elaborate tweaks to my diet, none of which has produced any meaningful change. I have been on pancreatic enzymes (Creon), on bile salts, I chew Immodium like candy...bupkis. Nada. Niente. My GI is out of ideas.
My first surgeon (Surgeon #1), who did the DS, spent several months vascilating between telling me that I was blowing things out of proportion, chiding me for eating "all that gluten and dairy" (I was eating none of either), and telling me that the only thing he could do was lengthen my common channel, though he noted that he had never had a patient respond like this. So my confidence in his proposed fix was somewhat limited, shall we say.
Surgeon #2, whom I want to see to talk about fixing the hernia, left me so upset that in the seven blocks I walked, after leaving his office, to get to the bus, three people stopped me to ask if I was alright, because I was shaking. Well, and because they thought I was about to give birth. Anyway, he told me that this was the most challenging hernia he had ever encountered, that he was not at all sure that a "cosmetically acceptable' fix could be achieved (translation: I might well look pregnant for the rest of my life), that there was nothing he could do to help me with the diarrhea, and that I should have the hernia fixed (an open surgery, which he estimated would take seven hours, followed by approximately 3-4 months recovery), and then perhaps a revision of the DS, even though he didn't think that would help (another open surgery, with the same recovery estimate). Like I said, I was shaking. And then I went to see the plastics guy he works with, who was very nice....and who hadn't bothered to look at my operative notes, the result of my recent CT scan, or Surgeon #2's notes, even though they were all available in his system and I had had the appointment booked for more than two weeks. Frankly, I found this meeting a total waste of my time.
I happened to have to recount the whole sorry story to, of all people, the managing agent of my apartment building, a guy named Elliott, with whom I am somewhat friendly. He said he had had a horrendous hernia a few years ago, he had gone to see this surgeon at Sinai (Brian Katz, for anyone needing a hernia doc), he saved Elliott's life, etc. etc., I should call him. And I said yeah yeah, the way you do when people give you those recommendations. And then, three days later, the phone rang, it was Elliott, he said "Look, this is really intrusive and presumptuous, but I'm serious about this. Here's the guy's number, he's in the office today, I told him to expect your call." So what the hell, I called, I made an appointment, I saw him two days ago, and I am in LOVE.
First, he said something that made enormous sense to me: DO NOT HAVE ANY FORM OF ABDOMINAL SURGERY UNTIL YOU GET THE DIARRHEA UNDER CONTROL. Why? Several reasons. One, trying to heal from abdominal surgery while using the bathroom 20 times a day will be miserable (yeah? tell me about it). Two, if it looks like the only way to fix the diarrhea is to revise the original DS, that will restrict the number of options for fixing the hernia, and will take off the table the most effective options. Three, if down the road you do have to revise the DS to fix the diarrhea, you will have to completely undo the hernia-fix and the abdominoplasty (the plastics part of the hernia fix). And finally, while neither a hernia repair nor an abdominoplasty directly affects the intestines, if your bowels are as massively inflamed as they appear to be, and there are significant problems in that area, the potential for infection during or as a result of the hernia surgery is radically increased. MUST GET THE DIARRHEA UNDER CONTROL FIRST.
I can't tell you how much sense this made to me. And THEN he gave me two new medication protocols, using meds I had tried before, but in a different way. With the Creon, for example, he told me that taking pills -- even as many as three -- after a meal was going to be useless for me, because my "transit time is so short" (meaning the amount of time that food spends in my body before exiting): If I wait until after the meal, the food's already on its way out and the pills have no chance to work. I'm supposed to take them before and during. With the bile salts, he wants me dissolving them in water and slugging it back before the meal. I'm waiting to get the bile salts from the pharmacy, but I've started taking the Creon in the new way, and the result is astonishing. MAJOR improvement. He wants to see me in a week and a half, if the problem isn't largely cleared up, there's a clinic in North Carolina that specializes in diarrhea, and he wants to send me there. I just......I feel as though someone is taking this issue seriously, for the first time in nearly a year.
And then, to compound my astonishment, he called me this morning A) to ask how the meds were working, and B) to tell me that he had read in a journal about a new medication that was showing some signs of effectiveness w/r/t absorption issues, and if by this coming Monday I don't feel that things are really improving, we can try that. I am just gobsmacked. In my world, surgeons NEVER reach out. That this guy called me to say How are you doing AND By the way, I've been thinking about your case....I'm just stunned. So, he's the surgeon for me. He works with a plastics guy (a different plastics guy) also at Sinai, and I'll make an appointment to talk to him. OH, and my GP left a message telling me that Katz had called him to discuss my case. For the first time, I feel like I am not having to run the show, and the relief is just staggering.
No, he's not a bariatric surgeon: He specializes in hernia repair. But he's done bariatric surgery, he knows about the DS.....he gets six thumbs up from me. Dr. Katz, you're my BFF. And I hope you're not seriously Kosher, because I want to bake you a cake (and if he's seriously Kosher, he can't eat anything that comes out of my distinctly non-Kosher kitchen).
My first surgeon (Surgeon #1), who did the DS, spent several months vascilating between telling me that I was blowing things out of proportion, chiding me for eating "all that gluten and dairy" (I was eating none of either), and telling me that the only thing he could do was lengthen my common channel, though he noted that he had never had a patient respond like this. So my confidence in his proposed fix was somewhat limited, shall we say.
Surgeon #2, whom I want to see to talk about fixing the hernia, left me so upset that in the seven blocks I walked, after leaving his office, to get to the bus, three people stopped me to ask if I was alright, because I was shaking. Well, and because they thought I was about to give birth. Anyway, he told me that this was the most challenging hernia he had ever encountered, that he was not at all sure that a "cosmetically acceptable' fix could be achieved (translation: I might well look pregnant for the rest of my life), that there was nothing he could do to help me with the diarrhea, and that I should have the hernia fixed (an open surgery, which he estimated would take seven hours, followed by approximately 3-4 months recovery), and then perhaps a revision of the DS, even though he didn't think that would help (another open surgery, with the same recovery estimate). Like I said, I was shaking. And then I went to see the plastics guy he works with, who was very nice....and who hadn't bothered to look at my operative notes, the result of my recent CT scan, or Surgeon #2's notes, even though they were all available in his system and I had had the appointment booked for more than two weeks. Frankly, I found this meeting a total waste of my time.
I happened to have to recount the whole sorry story to, of all people, the managing agent of my apartment building, a guy named Elliott, with whom I am somewhat friendly. He said he had had a horrendous hernia a few years ago, he had gone to see this surgeon at Sinai (Brian Katz, for anyone needing a hernia doc), he saved Elliott's life, etc. etc., I should call him. And I said yeah yeah, the way you do when people give you those recommendations. And then, three days later, the phone rang, it was Elliott, he said "Look, this is really intrusive and presumptuous, but I'm serious about this. Here's the guy's number, he's in the office today, I told him to expect your call." So what the hell, I called, I made an appointment, I saw him two days ago, and I am in LOVE.
First, he said something that made enormous sense to me: DO NOT HAVE ANY FORM OF ABDOMINAL SURGERY UNTIL YOU GET THE DIARRHEA UNDER CONTROL. Why? Several reasons. One, trying to heal from abdominal surgery while using the bathroom 20 times a day will be miserable (yeah? tell me about it). Two, if it looks like the only way to fix the diarrhea is to revise the original DS, that will restrict the number of options for fixing the hernia, and will take off the table the most effective options. Three, if down the road you do have to revise the DS to fix the diarrhea, you will have to completely undo the hernia-fix and the abdominoplasty (the plastics part of the hernia fix). And finally, while neither a hernia repair nor an abdominoplasty directly affects the intestines, if your bowels are as massively inflamed as they appear to be, and there are significant problems in that area, the potential for infection during or as a result of the hernia surgery is radically increased. MUST GET THE DIARRHEA UNDER CONTROL FIRST.
I can't tell you how much sense this made to me. And THEN he gave me two new medication protocols, using meds I had tried before, but in a different way. With the Creon, for example, he told me that taking pills -- even as many as three -- after a meal was going to be useless for me, because my "transit time is so short" (meaning the amount of time that food spends in my body before exiting): If I wait until after the meal, the food's already on its way out and the pills have no chance to work. I'm supposed to take them before and during. With the bile salts, he wants me dissolving them in water and slugging it back before the meal. I'm waiting to get the bile salts from the pharmacy, but I've started taking the Creon in the new way, and the result is astonishing. MAJOR improvement. He wants to see me in a week and a half, if the problem isn't largely cleared up, there's a clinic in North Carolina that specializes in diarrhea, and he wants to send me there. I just......I feel as though someone is taking this issue seriously, for the first time in nearly a year.
And then, to compound my astonishment, he called me this morning A) to ask how the meds were working, and B) to tell me that he had read in a journal about a new medication that was showing some signs of effectiveness w/r/t absorption issues, and if by this coming Monday I don't feel that things are really improving, we can try that. I am just gobsmacked. In my world, surgeons NEVER reach out. That this guy called me to say How are you doing AND By the way, I've been thinking about your case....I'm just stunned. So, he's the surgeon for me. He works with a plastics guy (a different plastics guy) also at Sinai, and I'll make an appointment to talk to him. OH, and my GP left a message telling me that Katz had called him to discuss my case. For the first time, I feel like I am not having to run the show, and the relief is just staggering.
No, he's not a bariatric surgeon: He specializes in hernia repair. But he's done bariatric surgery, he knows about the DS.....he gets six thumbs up from me. Dr. Katz, you're my BFF. And I hope you're not seriously Kosher, because I want to bake you a cake (and if he's seriously Kosher, he can't eat anything that comes out of my distinctly non-Kosher kitchen).
Such great news Maggie! I am happy for you.
