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Topic: RE: Pain "doctor" experience
I think I've had 12 surgeries in 4.5 years (starting with my RNY). I believe we have communicated before. There is a doctor our there that will treat you for your pain! If you decided to go for another pain management consult, let the office staff know that you'd like to meet with the doctor (actually HAVE a consult) to see if the two of you can work together and THEN if you and the doctor come to an agreement to treat, you'll sign the contract. About the ER, I had heard what you were told about not being able to get narcotic medication at the ER even if you've had something happen not related to your treatment for pain such as a broken leg or a car accident (G-d forbid); however, I have found that is NOT true. I have been to the ER several times (unfortunately) for abdominal pain WHILE in pain management and I tell them that I am in pain management with Dr. Good Relief and I've still been able to receive the big guns such as Dilaudid (which is the only thing that relieves episodes of pain). Dr. Good Relief is notified but I always check in with him myself. Pain is pain and it's a signal that something is wrong with your body OR it's phantom pain where the brain refuses the signals of pain and decides on the pain itself. You should research that because it CAN be treated but you are NOT helping yourself by allowing the pain all day and "only" wanting to sleep at night. The pain has to be controlled around the clock so that if this is acute pain that has become chronic, it can eventually be cured.
The abdominal nervous system is very closely tied to the central nervous system and is called the Enteric Nervous System. Look it up. It's amazing. It may help you understand some of what is going on. Also, it would be helpful to research acute pain versus chronic pain and how one can turn into the other.
If you have any more specific questions for me, please feel free to PM me. I hope that you are pain free soon!
I think I've had 12 surgeries in 4.5 years (starting with my RNY). I believe we have communicated before. There is a doctor our there that will treat you for your pain! If you decided to go for another pain management consult, let the office staff know that you'd like to meet with the doctor (actually HAVE a consult) to see if the two of you can work together and THEN if you and the doctor come to an agreement to treat, you'll sign the contract. About the ER, I had heard what you were told about not being able to get narcotic medication at the ER even if you've had something happen not related to your treatment for pain such as a broken leg or a car accident (G-d forbid); however, I have found that is NOT true. I have been to the ER several times (unfortunately) for abdominal pain WHILE in pain management and I tell them that I am in pain management with Dr. Good Relief and I've still been able to receive the big guns such as Dilaudid (which is the only thing that relieves episodes of pain). Dr. Good Relief is notified but I always check in with him myself. Pain is pain and it's a signal that something is wrong with your body OR it's phantom pain where the brain refuses the signals of pain and decides on the pain itself. You should research that because it CAN be treated but you are NOT helping yourself by allowing the pain all day and "only" wanting to sleep at night. The pain has to be controlled around the clock so that if this is acute pain that has become chronic, it can eventually be cured.
The abdominal nervous system is very closely tied to the central nervous system and is called the Enteric Nervous System. Look it up. It's amazing. It may help you understand some of what is going on. Also, it would be helpful to research acute pain versus chronic pain and how one can turn into the other.
If you have any more specific questions for me, please feel free to PM me. I hope that you are pain free soon!
I have two sides to my brain - a right side and a left side. The trouble is sometimes there is nothing left in the right side and nothing right in the left side.
Post-Op RNY 6.5 years
HW 252 GW 140 CW 140
(deactivated member)
on 3/26/09 11:43 pm - Yoe, PA
on 3/26/09 11:43 pm - Yoe, PA
Topic: RE: NESIDIOBLASTOSIS hyperinsulinemic hypoglycemia?RYGB
I have lost 245# dince my RNY surgery at Hershey, PA in 2001 (before Dr. Ku went to Wyomissing). I lost all this weight and didn't start showing signs/symptoms of Nesidioblastosis until 1-1/2 yr. ago. I have since been to Hershey Medical, York Hospital, Johns Hopkins, and University of MD to find, first of all, an Endocrinologist who would listen to me (I even went back to Dr. Ku for help). All but the one at UMD kept telling me that I had to eat mega Complex Carbohydrates which would send me crashing into LBS (low blood sugars). I was having fainting, sweats, headaches in the middle of the night, shaking, confusion, and even had driving privileges taken away from me for a while. They finally diagnosed me with Nesidioblastosis and (possibly Nesidioblastoma). they were saying that it was caused by the RNY but that didn't make any since because I had gone 7 years without any complications. Finally, my endo worked in conjunction with the Oncology Surgeons at Hershey, and after a solid year of tests, different medicines (some in the trial stages), they decided to perform the Pancreatic surgery. They told me that they were taking 2/3 of the pancreas but ended up taking 90%, my spleen, and some of the intestine that was "stuck" to the other organs. they decided at that time that my Nesidioblastisis was not caused by the RNY.
I had this surgery in August, 2008, and was fine until I got more active. then it all started again. I am now in the process of going through all of the above, again. I have sent a spread sheet chronicaling every bite I eat, when I eat it, what the reaction is, BS (blood sugar) levles before, 1 hour after, and 2 hours after I eat, exercise and BS reactions, and if I wake up in the middle of the night. There has been no reason and no telling when my sugar will drop. I can't eat fatty things at all, even have difficulties with Olive oils in cooking. The only thing that is consistent is Low-fat, low-calorie cheese, I carry it with me at all times (the normal sugar could send me into a roller coaster of BS problems all day).
the same Dr. are confused and are talking about complete pancreatectomy, which scare me because of Diabetes.
I had this surgery in August, 2008, and was fine until I got more active. then it all started again. I am now in the process of going through all of the above, again. I have sent a spread sheet chronicaling every bite I eat, when I eat it, what the reaction is, BS (blood sugar) levles before, 1 hour after, and 2 hours after I eat, exercise and BS reactions, and if I wake up in the middle of the night. There has been no reason and no telling when my sugar will drop. I can't eat fatty things at all, even have difficulties with Olive oils in cooking. The only thing that is consistent is Low-fat, low-calorie cheese, I carry it with me at all times (the normal sugar could send me into a roller coaster of BS problems all day).
the same Dr. are confused and are talking about complete pancreatectomy, which scare me because of Diabetes.
Topic: RE: Unexplained Pain on Left Side
Hi Kathryn,
My name is Tammy, I have also been having trouble with pain in my left side which is severe at times. I have had a cat scan and endoscopy which both came back normal. I have an appointment with a gastro specialist on April 2nd, so far my PCP said she ws looking for issues with my liver, or pancreas ( but blood work came back normal so prob not that) and scar tissue or adhesions of the remnant stomach to my liver, pancreas or intestines. I have read others post regarding issues with the remnant stomach ( the large portion that was disconnected) filling with stomach juices and becomming inflammed to the point where they finally had it removed and problems were solved, the other issue I haev heard about is they say after losing so much weight our bellys create pockets of empty space that USED to be filled with fat so while our food is going thru the intestines they sometimes slide into these pockets causing severe pain, which is what I suspect is happening to me, and this is very difficult to diagnose unless its actively happening and unfortunately the people that WERE diagnosed with this were only diagnosed after years of searching for the cause and finally going in for an exploratory surgery OR when thier intestines ruptured and had emergency surgery. So what I've concluded from the research I have done is this is a potentially serious thing and not to be take lightly. I am going to give you my email , I would love to hear how your doing and what results YOU get and I will relay the same to you if your interested. I wish you all the best....Tammy ([email protected])
PS This may not be related but i noticed when i stopped using splenda and sugar substitutes that the pain was less often actually was almost non existent, and 2 days ago i started using splenda again and yesterday and today the pain came back with a vengence, I'm going to play around with it and see if there could be a relation there, who knows, at this point I'll try anything! lol good luck to you =)
My name is Tammy, I have also been having trouble with pain in my left side which is severe at times. I have had a cat scan and endoscopy which both came back normal. I have an appointment with a gastro specialist on April 2nd, so far my PCP said she ws looking for issues with my liver, or pancreas ( but blood work came back normal so prob not that) and scar tissue or adhesions of the remnant stomach to my liver, pancreas or intestines. I have read others post regarding issues with the remnant stomach ( the large portion that was disconnected) filling with stomach juices and becomming inflammed to the point where they finally had it removed and problems were solved, the other issue I haev heard about is they say after losing so much weight our bellys create pockets of empty space that USED to be filled with fat so while our food is going thru the intestines they sometimes slide into these pockets causing severe pain, which is what I suspect is happening to me, and this is very difficult to diagnose unless its actively happening and unfortunately the people that WERE diagnosed with this were only diagnosed after years of searching for the cause and finally going in for an exploratory surgery OR when thier intestines ruptured and had emergency surgery. So what I've concluded from the research I have done is this is a potentially serious thing and not to be take lightly. I am going to give you my email , I would love to hear how your doing and what results YOU get and I will relay the same to you if your interested. I wish you all the best....Tammy ([email protected])
PS This may not be related but i noticed when i stopped using splenda and sugar substitutes that the pain was less often actually was almost non existent, and 2 days ago i started using splenda again and yesterday and today the pain came back with a vengence, I'm going to play around with it and see if there could be a relation there, who knows, at this point I'll try anything! lol good luck to you =)
Topic: RE: hair loss
I want to thank all of you for talking about this issue. I am 11 months post op and I started noticing some hair loss after about 5-6 months. But in the last 2 months it has gotton more noticable. I was really starting to worry. My hair has always been very fine and I've always had a problem with not having very much hair to begin with. Needless to say I can't afford to lose a whole lot. I do keep it short and that does help. Reading what some of you wrote about it growing back has given me encouragement.
Thanks Again
Abby
Thanks Again
Abby
Topic: RE: My drain is finally OUT after my 12/9/08 RNY
Hi , I had my surgery 8-25-08 I had a leak and ended up in ICU for 45 days in a coma on a ventilator. I spent 4 months in the hospital total. I still have 3 drains that are hooked to suction machines and am feed through a feeding tube. Were you able to eat anything while you waited for the leak to heal? I can have an occasional ice chip but that's it. How did you know when the leak stopped? I know how you felt with the drain, my family calls me "smelly" and we have stock in scented candles.
Topic: Maintenance Scheduled for Thursday, March 26th
Due to scheduled maintenance, all of our web services will be unavailable on Thursday, March 26th starting at 11:59PM PDT lasting for approximately one hour. We apologize for any inconvenience.
Topic: RE: Reversal Questions
Hi, My name is Kim and I had surgery Oct. 8, 2008. Have had lots of complications since then. Many bouts to the hospital, 7 dilation's, 2 ulcers, TPN and 1 revision. Have not been able to eat, so hungry. Have a new Dr, who feels he can help. Have a new dilation and scope scheduled for April 6th. Does it get better or do I have a long journey ahead of me? . I know each case is different but looking for some hope. Have lost 80lbs and only have 20lbs to go. Any info would be greatly appreciated.
Thanks,
Kim
Thanks,
Kim
Topic: RE: Unexplained Pain on Left Side
had RNY on 7/31/08 and everything was going great until October. They did an EDG the first of November and discovered I had an ulcer, was put on meds for that. But, the sharp pain still was there. Then they did a CT scan and determined I had Gall stones. I went into the hospital mid December with sharp pains and they couldn't figure out why my pain was on my left side if my Gall Bladder is on my right side.
I had surgery on Dec. 15 where they removed my Gall Bladder and also repaired a hernia and removed scar tissue on my left side (the site of my pain). Bingo! We thought my pain problem was solved. No such luck. I have the pain on a continuous basis since. I have had an upper GI where they also looked at the small bowel. That was normal. I had a colonoscopy and another EDG and they were normal. I had another CT scan about 3 weeks ago and that was normal. I have been on Carafate, Prilosec, Citotec, Flagyl and was prescribed Valium (which I did not take because I hate the way it makes me feel.)
I really feel my doc is taking good care of me but just does not know what else to do. I have to call his office again tomorrow to check in and see what they want me to do next.
At 7 1/2 months out I still am not able to eat much. I have been getting nauseous when I eat, so I am wondering if I have another ulcer. I have lost 85 pounds and am 5 pounds over my goal. They don't want me to loose any more, but I just can't eat much without having pain.
Has anyone here gone through anything like this, or every heard of such a thing? I am so frustrated with feeling bad all the time, and being afraid to eat. I would love to hear from any of you.
Thanks!
Kathryn
There is a woman on the Connecticut Forum who had all kinds of complications...don't know the whole story exactly but you might just hop on over there and ask. I know she's had surgery again an is doing a lot better. Her username is Mickey D.
Just a thought...good luck!!
"The Joy of the Lord is your strength." Nehemiah 8:10
START: 330 CURRENT: 274.5 lbs GOAL: 190 TOTAL: 55.5 lbs
On March 17, 2009 at 6:07 PM Pacific Time, KathrynC wrote:
Hi All, I am coming to all of you experts looking for help. I have been struggling since mid October with sharp pain on my left side. The pain comes and goes throughout the day and it does not seem to be related to when I eat. Sometimes it is so sharp I cannot stand up.had RNY on 7/31/08 and everything was going great until October. They did an EDG the first of November and discovered I had an ulcer, was put on meds for that. But, the sharp pain still was there. Then they did a CT scan and determined I had Gall stones. I went into the hospital mid December with sharp pains and they couldn't figure out why my pain was on my left side if my Gall Bladder is on my right side.
I had surgery on Dec. 15 where they removed my Gall Bladder and also repaired a hernia and removed scar tissue on my left side (the site of my pain). Bingo! We thought my pain problem was solved. No such luck. I have the pain on a continuous basis since. I have had an upper GI where they also looked at the small bowel. That was normal. I had a colonoscopy and another EDG and they were normal. I had another CT scan about 3 weeks ago and that was normal. I have been on Carafate, Prilosec, Citotec, Flagyl and was prescribed Valium (which I did not take because I hate the way it makes me feel.)
I really feel my doc is taking good care of me but just does not know what else to do. I have to call his office again tomorrow to check in and see what they want me to do next.
At 7 1/2 months out I still am not able to eat much. I have been getting nauseous when I eat, so I am wondering if I have another ulcer. I have lost 85 pounds and am 5 pounds over my goal. They don't want me to loose any more, but I just can't eat much without having pain.
Has anyone here gone through anything like this, or every heard of such a thing? I am so frustrated with feeling bad all the time, and being afraid to eat. I would love to hear from any of you.
Thanks!
Kathryn
Just a thought...good luck!!
"The Joy of the Lord is your strength." Nehemiah 8:10START: 330 CURRENT: 274.5 lbs GOAL: 190 TOTAL: 55.5 lbs
Topic: RE: Pain "doctor" experience
So, I decided to take another crack at a different pain clinic, this one recommended by my primary, who is wonderful, so I don't hold it against him at all. I was impressed right away, the staff was very friendly and caring, they had a whole wing of the hospital for their use for clinic appts and procedures, very professional looking, so I thought, surely they can help me with this pain until I get cured (of course I have to be diagnosed first). I was admittedly very emotional about being there, mostly because in my mind I had avoided going to the pain doc because I felt like I was waving the white flag of surrender. So, I was weepy, they provided the kleenex and reassurance, the doctor came in, he was very nice (and even after the whole episode, I can't say he wasn't nice- he's just nuts I guess) LOL I of course gave him all my info, very informative, nothing to hide, all my doc info, all my prescription history given to him. We talked about the issues of the pain, I told him that I don't take the pain meds during the day because I want to function, so I am willing to be in pain all day, but it would be nice to have relief at night so I can enjoy my time with my family and get a good night of sleep, maybe. I am not on high doses of anything at all. I also told him that having the pain meds at home, helps to keep me out of the ER when I have these "attacks" of pain/nausea after eating sometimes, although even though it is a liquid pain med, sometimes it is so bad I can't even get that to go down, and then off to the ER we go. After all this discussion, he explained to me how I am too young to be having to take these narcotic pain meds, and we need to get me off of them (which I was like, yes, let's get me something that works as well, yeah), but no...here was his plan: wean me off the pain meds, and then told me I can just take an ibuprofen or any other nsaid (Alleve) pain reliever
I was still polite, reminded him about my complicated GI history, and that I have an ulcer right now, that I was told by all of my docs to NEVER take Ibuprofen/Nsaid pain relievers because of the damage it will cause my GI tract/stomach, his response was, well better to have an ulcer than to be taking those narcotic pain meds!!! If Ibuprofen worked for my pain, I wouldn't be seeing any doctors. As a bonus to this lovely offering of "relief" that he was so graciously giving to me, HA!, I had to sign an opiate contract (anybody ever heard of/seen one of these before? I work in the ER and I never heard of it), which read more like an agreement to go into detox than an agreement to get help with pain relief, it basically outlined that while I was under their "care", and I use the term loosely, I was not allowed to seek pain treatment anywhere else, including the ER! Here was the kicker, he told me, you can go to the ER for nausea and they can give you Phenergan/Zofran, but he said, and I quote, "If you are going to the ER for pain relief, don't bother because under the terms of the agreement, they can't give you anything, so if it is pain, stay home, crawl in bed and deal with it until it passes." 
I was so vulnerable, and fried emotionally at this point, and thinking that I had no other options, I signed the stupid thing, weeping the whole time, they gave me a script for a reduced dose of the medicine I was taking, and I tried to explain to them that my tears were not the tears of an addict who was going to miss their drug, they were tears of shame and embarrassment, and wondering why am I being treated like a drug addict??? They tried to bru**** off as a formality, but in my mind I was thinking about my co-workers, people I work with, seeing this thing and wondering if I have a problem! I left there miserable, started sobbing as soon as the valet brought the car around, and continued to sob all the way down the road, my aunt tried to console me, she couldn't even understand me because I was hysterical. Well, there is a bright side to this, somewhat, when I got home I called that place, told them that I was coming back the next day, and they could have their prescription back, and I wanted my "contract" back so I could rip it up! I followed through with that yesterday, and I felt so empowered to hand that script back to them and tell them how they made me feel, and watched as she ripped the original contract up. The doctor had mentioned to me during the original visit that he only gives dying cancer patients narcotic pain meds, so when I went back I told the nurse that he should just open up a hospice unit and forget about treating the people who are truly suffering, but not dying- yet! I can imagine that others of you have had this experience, and if you haven't had it, I hope you don't, but remember that you are in charge of your body, don't be bullied by someone just because they had more years of school than you, or more initials after their name than you.
Wow!!! You are one amazing lady and I commend you!! Is there a diagnosis for this pain you're having?
"The Joy of the Lord is your strength." Nehemiah 8:10
START: 330 CURRENT: 274.5 lbs GOAL: 190 TOTAL: 55.5 lbs
On March 20, 2009 at 6:39 AM Pacific Time, jbird1972 wrote:
I posted this as a new blog post, and also on another topic message board, hoping to help someone else if they are in this situation.So, I decided to take another crack at a different pain clinic, this one recommended by my primary, who is wonderful, so I don't hold it against him at all. I was impressed right away, the staff was very friendly and caring, they had a whole wing of the hospital for their use for clinic appts and procedures, very professional looking, so I thought, surely they can help me with this pain until I get cured (of course I have to be diagnosed first). I was admittedly very emotional about being there, mostly because in my mind I had avoided going to the pain doc because I felt like I was waving the white flag of surrender. So, I was weepy, they provided the kleenex and reassurance, the doctor came in, he was very nice (and even after the whole episode, I can't say he wasn't nice- he's just nuts I guess) LOL I of course gave him all my info, very informative, nothing to hide, all my doc info, all my prescription history given to him. We talked about the issues of the pain, I told him that I don't take the pain meds during the day because I want to function, so I am willing to be in pain all day, but it would be nice to have relief at night so I can enjoy my time with my family and get a good night of sleep, maybe. I am not on high doses of anything at all. I also told him that having the pain meds at home, helps to keep me out of the ER when I have these "attacks" of pain/nausea after eating sometimes, although even though it is a liquid pain med, sometimes it is so bad I can't even get that to go down, and then off to the ER we go. After all this discussion, he explained to me how I am too young to be having to take these narcotic pain meds, and we need to get me off of them (which I was like, yes, let's get me something that works as well, yeah), but no...here was his plan: wean me off the pain meds, and then told me I can just take an ibuprofen or any other nsaid (Alleve) pain reliever
I was still polite, reminded him about my complicated GI history, and that I have an ulcer right now, that I was told by all of my docs to NEVER take Ibuprofen/Nsaid pain relievers because of the damage it will cause my GI tract/stomach, his response was, well better to have an ulcer than to be taking those narcotic pain meds!!! If Ibuprofen worked for my pain, I wouldn't be seeing any doctors. As a bonus to this lovely offering of "relief" that he was so graciously giving to me, HA!, I had to sign an opiate contract (anybody ever heard of/seen one of these before? I work in the ER and I never heard of it), which read more like an agreement to go into detox than an agreement to get help with pain relief, it basically outlined that while I was under their "care", and I use the term loosely, I was not allowed to seek pain treatment anywhere else, including the ER! Here was the kicker, he told me, you can go to the ER for nausea and they can give you Phenergan/Zofran, but he said, and I quote, "If you are going to the ER for pain relief, don't bother because under the terms of the agreement, they can't give you anything, so if it is pain, stay home, crawl in bed and deal with it until it passes." I was so vulnerable, and fried emotionally at this point, and thinking that I had no other options, I signed the stupid thing, weeping the whole time, they gave me a script for a reduced dose of the medicine I was taking, and I tried to explain to them that my tears were not the tears of an addict who was going to miss their drug, they were tears of shame and embarrassment, and wondering why am I being treated like a drug addict??? They tried to bru**** off as a formality, but in my mind I was thinking about my co-workers, people I work with, seeing this thing and wondering if I have a problem! I left there miserable, started sobbing as soon as the valet brought the car around, and continued to sob all the way down the road, my aunt tried to console me, she couldn't even understand me because I was hysterical. Well, there is a bright side to this, somewhat, when I got home I called that place, told them that I was coming back the next day, and they could have their prescription back, and I wanted my "contract" back so I could rip it up! I followed through with that yesterday, and I felt so empowered to hand that script back to them and tell them how they made me feel, and watched as she ripped the original contract up. The doctor had mentioned to me during the original visit that he only gives dying cancer patients narcotic pain meds, so when I went back I told the nurse that he should just open up a hospice unit and forget about treating the people who are truly suffering, but not dying- yet! I can imagine that others of you have had this experience, and if you haven't had it, I hope you don't, but remember that you are in charge of your body, don't be bullied by someone just because they had more years of school than you, or more initials after their name than you. "The Joy of the Lord is your strength." Nehemiah 8:10START: 330 CURRENT: 274.5 lbs GOAL: 190 TOTAL: 55.5 lbs
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