13 years out & some 'issues' to pass along for others
(deactivated member)
on 3/27/11 11:27 am - Charlotte, NC
on 3/27/11 11:27 am - Charlotte, NC
I am 13 years S/P proximal RYGB. I have kept almost all of my weight off all these years and have been happy ALWAYS in that aspect. I have been having some 'issues' and my surgeon is now retired. I just want to pass some of MY side- effects on to others...kind of a BOLO (be on the look-out) of what may be some things you, too, may experience.
1.Osteoporosis: this was just recently diagnosed. I'm 58 yrs old and post menopause (hyst 1999). I had been on Fosamax for 3 yrs for osteopenia (diagnosed after a bone density scan) and only stopped it last year when they began to find a number of women with spontaneous fractures of their femurs; some from just stepping off a sidewalk. Long story short, now I am on FORTEO injections, daily, for the next 2 year,s to try to stop the osteoporosis and build new bone that is close to the bone our bodies build. There is a 2 yr LIMIT for life on taking Forteo. One of it's 'bad' side effects is the possibility of causing Osteosarcoma ( bone cancer). It's given SQ (subcutaneously) by me in my abdomen daily...NO pain, the needles are so tiny these days.
2.BILE reflux: I have most likely had it from day one. I chose to have my revision (prox RYGB) in another state, by a Bariatric doctor who had been doing these surgeries since 1978. My original stomach stapling (April 1992) had stenosed at the GEJ (gastro-esophageal junction) and I spent 5 yrs vomiting anything larger than a grain of rice. My surgeon is now retired
so I am having to do my own research into this. I thank God that I am a RN and can do the research and understand it.
When I first had the reflux he told me that in 1% of proximal RNY bypasses the roux limb ends up not long enough for that specific person and bile shoots up and gets into the tiny new stomach and can get on up the esophagus. My gallbladder was removed during the RYGB surgery). The 'fix' is going back in and making the roux limb longer. We tried all sorts of meds and it settled down to where it only happened occasionally. In the past 5 yrs it's gotten a LOT worse. Since I was not with any specific Baritaric doctor for a long time and there are no WLS support groups in Charlotte, NC (except with the specific groups doing these surgeries- now done laparoscopically) I was just seeing my Family MD. He put me on H2 blockers(Prilosec, Zantac, etc) first for a year and when they didn't work any longer, I was on the proton pump inhibitors for the last 7+yrs (Protonix, Nexium, Aciphex and more). None has worked for long and I've had several bouts of 'aspiration pneumonitis' from inhaling bile into my lungs when asleep. I finally had ENOUGH last November 2010, when I ended up with bile shot up into my ear drum and was deaf for a month! I know bile has no place in the inner ear, but my MD then told me that it couldn't be there, too. As my hearing returned, over a 2 month period, I had tinnitus...a roaring in my effected ear. I can hear fine again, thank God!
In March I took the bull by the horns and saw a new Family MD AND also referred myself to a colleague, who is a Gastroenterologist. He did an Endoscopy last week. He is familiar with WLS and I feel he at least LISTENS to me and what is going on. The Endoscopy showed moderate esophagitis and gastritis and he took sample of both my esophagus and stomach and those results are pending. At the time of the 'scope' BILE was in my stomach 'pouch' so he took pix for me of it. I've been blown off as 'crazy' that it was bile by so many other doctors that have no real grasp of WLS, and taken 10 yrs of PPIs that I probably didn't need. DO I now have Barrett's Esophagus ( as pre-cancerous condition)? Do I have actual cancer? We shall see.
And to ice the cake, all the YEARS on the PPIs may just BE the cause, or part, of the Osteoporosis I've been diagnosed with, despite 3 yrs of Fosamax (one of the bisphosphates).It's possinly a combination of WLS, the nutrition changes that come with WLS and menopause.
In the meantime, I am taking back control of my life and care living with the BILE REFLUX. For now, I take NO meds, aside from Tylenol I need for Arthritis pain daily. I have always taken a daily multi vitamin, calcium, vitamin D3, as part of my post-op care. I am keeping a food diary again
this time to keep track of what foods/drinks cause the bile symptoms (severe heartburn, pain, coughing) and then what I do to try and alleviate them. I'm also back online doing LOTS of research on bile reflux, as I really do not want to have another surgery that large especially by some doctor I don't know IF at all possible.
I post to let others know what can happen this far out that is not a weight issue. I'd love to hear from others 10+ YEARS post any WLS to see if I am alone or not. I bet there are others with bile reflux. Maybe you, too, have been diagnosed with early osteoporosis and have had WLS of some kind. Maybe we can help one another. ALL opinions welcome.
1.Osteoporosis: this was just recently diagnosed. I'm 58 yrs old and post menopause (hyst 1999). I had been on Fosamax for 3 yrs for osteopenia (diagnosed after a bone density scan) and only stopped it last year when they began to find a number of women with spontaneous fractures of their femurs; some from just stepping off a sidewalk. Long story short, now I am on FORTEO injections, daily, for the next 2 year,s to try to stop the osteoporosis and build new bone that is close to the bone our bodies build. There is a 2 yr LIMIT for life on taking Forteo. One of it's 'bad' side effects is the possibility of causing Osteosarcoma ( bone cancer). It's given SQ (subcutaneously) by me in my abdomen daily...NO pain, the needles are so tiny these days.
2.BILE reflux: I have most likely had it from day one. I chose to have my revision (prox RYGB) in another state, by a Bariatric doctor who had been doing these surgeries since 1978. My original stomach stapling (April 1992) had stenosed at the GEJ (gastro-esophageal junction) and I spent 5 yrs vomiting anything larger than a grain of rice. My surgeon is now retired
so I am having to do my own research into this. I thank God that I am a RN and can do the research and understand it. When I first had the reflux he told me that in 1% of proximal RNY bypasses the roux limb ends up not long enough for that specific person and bile shoots up and gets into the tiny new stomach and can get on up the esophagus. My gallbladder was removed during the RYGB surgery). The 'fix' is going back in and making the roux limb longer. We tried all sorts of meds and it settled down to where it only happened occasionally. In the past 5 yrs it's gotten a LOT worse. Since I was not with any specific Baritaric doctor for a long time and there are no WLS support groups in Charlotte, NC (except with the specific groups doing these surgeries- now done laparoscopically) I was just seeing my Family MD. He put me on H2 blockers(Prilosec, Zantac, etc) first for a year and when they didn't work any longer, I was on the proton pump inhibitors for the last 7+yrs (Protonix, Nexium, Aciphex and more). None has worked for long and I've had several bouts of 'aspiration pneumonitis' from inhaling bile into my lungs when asleep. I finally had ENOUGH last November 2010, when I ended up with bile shot up into my ear drum and was deaf for a month! I know bile has no place in the inner ear, but my MD then told me that it couldn't be there, too. As my hearing returned, over a 2 month period, I had tinnitus...a roaring in my effected ear. I can hear fine again, thank God!
In March I took the bull by the horns and saw a new Family MD AND also referred myself to a colleague, who is a Gastroenterologist. He did an Endoscopy last week. He is familiar with WLS and I feel he at least LISTENS to me and what is going on. The Endoscopy showed moderate esophagitis and gastritis and he took sample of both my esophagus and stomach and those results are pending. At the time of the 'scope' BILE was in my stomach 'pouch' so he took pix for me of it. I've been blown off as 'crazy' that it was bile by so many other doctors that have no real grasp of WLS, and taken 10 yrs of PPIs that I probably didn't need. DO I now have Barrett's Esophagus ( as pre-cancerous condition)? Do I have actual cancer? We shall see.
And to ice the cake, all the YEARS on the PPIs may just BE the cause, or part, of the Osteoporosis I've been diagnosed with, despite 3 yrs of Fosamax (one of the bisphosphates).It's possinly a combination of WLS, the nutrition changes that come with WLS and menopause.
In the meantime, I am taking back control of my life and care living with the BILE REFLUX. For now, I take NO meds, aside from Tylenol I need for Arthritis pain daily. I have always taken a daily multi vitamin, calcium, vitamin D3, as part of my post-op care. I am keeping a food diary again
this time to keep track of what foods/drinks cause the bile symptoms (severe heartburn, pain, coughing) and then what I do to try and alleviate them. I'm also back online doing LOTS of research on bile reflux, as I really do not want to have another surgery that large especially by some doctor I don't know IF at all possible.I post to let others know what can happen this far out that is not a weight issue. I'd love to hear from others 10+ YEARS post any WLS to see if I am alone or not. I bet there are others with bile reflux. Maybe you, too, have been diagnosed with early osteoporosis and have had WLS of some kind. Maybe we can help one another. ALL opinions welcome.
The only part I can help you with directly is the vitamin/mineral deficiencies.
I know that the roux limb has to be XX long or bile reflux is the result, as you've said. Did anyone give you anything for bile? Or have they insisted on treating it as ACID?
Have you tried something like Citrucel, which can change the pH of bile so it's a bit less destructive, but yes, BE can be the result of a continuous bile bath.
Seriously, you're an RN and these docs thought you couldn't tell the diff between acid and bile? They musta never been pregnant! After I heaved the bile, then came my toenails! It takes something being bad wrong to actually TASTE bile. It is not sposta go uphill! Ever. Acid is kinda sour, but bile is repugnantly bitter. Makes you wanna tear your tongue off or at least out run it.
I was dx with osteoporosis in 2000, age 50, 6 yrs postie, but we were on not enough calcium and no specifics were given and really, surgeons weren't that good at reading our labs. The higher the calc level went, the happier they were vs the real life issue of high levels meaning the Calcium Has Left the Building and is now headed out of the bones back to soft tissue.
Sadly, thinning bones are still going to be the result of inadequate D intake and minimizing calcium type and dose.
But bile reflux, no. Did anyone talk to you about the ease/difficulty of moving the limb to cause the bile to go back downhill?
I know that the roux limb has to be XX long or bile reflux is the result, as you've said. Did anyone give you anything for bile? Or have they insisted on treating it as ACID?
Have you tried something like Citrucel, which can change the pH of bile so it's a bit less destructive, but yes, BE can be the result of a continuous bile bath.
Seriously, you're an RN and these docs thought you couldn't tell the diff between acid and bile? They musta never been pregnant! After I heaved the bile, then came my toenails! It takes something being bad wrong to actually TASTE bile. It is not sposta go uphill! Ever. Acid is kinda sour, but bile is repugnantly bitter. Makes you wanna tear your tongue off or at least out run it.
I was dx with osteoporosis in 2000, age 50, 6 yrs postie, but we were on not enough calcium and no specifics were given and really, surgeons weren't that good at reading our labs. The higher the calc level went, the happier they were vs the real life issue of high levels meaning the Calcium Has Left the Building and is now headed out of the bones back to soft tissue.
Sadly, thinning bones are still going to be the result of inadequate D intake and minimizing calcium type and dose.
But bile reflux, no. Did anyone talk to you about the ease/difficulty of moving the limb to cause the bile to go back downhill?
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
(deactivated member)
on 4/4/11 7:23 am - Charlotte, NC
on 4/4/11 7:23 am - Charlotte, NC
THanks for the post and the info. I knew that I had bile refluxing almost immediately post-op, and my surgeon (in VA) told me the fix was a longer roux limb. He made it sound like a BIG surgery, but that is back in 1998 and maybe it was only done open back then. I got lucky in that I had an Organic Chemistry instructor who told me, "Bile is high BASE (high pH) and why don't you try drinking citrus to neutralize it ?" I did so for about 2 yrs, but then the ruby red I lived on had lots of HFCS in it so I backed off....diluting it 50%. THEN...my new Family MD laughed at me and my 'cure' for the bile and I thought maybe I was misinformed. He put me on ACID REDUCERS...10 yrs of them and I was also put on Fosamax in 2006 after falling off a bed breaking my right tibia and right radius & ulna (NOT osteoporosis related at all then).
I got busy raising a son, his teen years and the loss of one of my eyes and just did the acid reducers. I ALWAYS thought it was ODD that when my reflux was really bad that drinking a soda stopped it. It went against all that the doctors (NONE of whom are Bariatric specialists) told me about reflux. I finally got a new Family MD and a Gastroenterologist and BOTH have no issue with my participating in my care. I figured it was time to have another Endoscopy to see IF I had Barrett's Esophagus yet OR cancer and to see IF I was able to get the roux limb made longer.
I got my Path results today and am happy to report that I have escaped both cancer and Barrett's for now. I will fill the Carafate script and see if I can heal the gastritis and esophagitis before having any surgery. I have been also keeping a food diary and what foods give me heartburn, and what I do to stop it...what FOOD/DRINK I use to neutralize that bile. I Google each citrus or juice I drink to make certain that it is in fact ACID...very EZ fix. I am betting that the CITRUCEL works in that same fashion, and I certainly appreciate that information.
I emailed The Bariatric Center @ The Cleveland Clinic today and gave them a short synopsis of what has been happening. If I am going ot have surgery, I feel it is in MY BST INTEREST to go to a place with such a fine reputation. I did resear*****harlotte, and the longest any of the current Barriatric docs here have been doing the surgeries is 8 years. IF The Cleveland Clinic can't help me, I will at least see the one Charlotte MD who has the best reputation.
Another positive, is that I have always, my whole life taken vitamins and minerals and worked out with weights. My one small issue now is taking more Calcium and the pills being so large. I still take them. I will know in a year, via another bone density scan, IF the Forteo is working for me. I sure hope so. I fall enough because of my vison loss and the distorted vison in the only sighted eye. I'm well aware of what a hip fracture could do and how much it would change my life, even at 58.
I SO appreciate your email, and will hang out here for friendship and to also let others know what can happen. I am still thrilled to be thinner and have NO REGRETS about having had both the stapling and then the RYGB. It's made my happy and changed my life for the better.
I got busy raising a son, his teen years and the loss of one of my eyes and just did the acid reducers. I ALWAYS thought it was ODD that when my reflux was really bad that drinking a soda stopped it. It went against all that the doctors (NONE of whom are Bariatric specialists) told me about reflux. I finally got a new Family MD and a Gastroenterologist and BOTH have no issue with my participating in my care. I figured it was time to have another Endoscopy to see IF I had Barrett's Esophagus yet OR cancer and to see IF I was able to get the roux limb made longer.
I got my Path results today and am happy to report that I have escaped both cancer and Barrett's for now. I will fill the Carafate script and see if I can heal the gastritis and esophagitis before having any surgery. I have been also keeping a food diary and what foods give me heartburn, and what I do to stop it...what FOOD/DRINK I use to neutralize that bile. I Google each citrus or juice I drink to make certain that it is in fact ACID...very EZ fix. I am betting that the CITRUCEL works in that same fashion, and I certainly appreciate that information.
I emailed The Bariatric Center @ The Cleveland Clinic today and gave them a short synopsis of what has been happening. If I am going ot have surgery, I feel it is in MY BST INTEREST to go to a place with such a fine reputation. I did resear*****harlotte, and the longest any of the current Barriatric docs here have been doing the surgeries is 8 years. IF The Cleveland Clinic can't help me, I will at least see the one Charlotte MD who has the best reputation.
Another positive, is that I have always, my whole life taken vitamins and minerals and worked out with weights. My one small issue now is taking more Calcium and the pills being so large. I still take them. I will know in a year, via another bone density scan, IF the Forteo is working for me. I sure hope so. I fall enough because of my vison loss and the distorted vison in the only sighted eye. I'm well aware of what a hip fracture could do and how much it would change my life, even at 58.
I SO appreciate your email, and will hang out here for friendship and to also let others know what can happen. I am still thrilled to be thinner and have NO REGRETS about having had both the stapling and then the RYGB. It's made my happy and changed my life for the better.
Hi,
I have also had numerous complecations from an RNY in 2003 and a band over bypass in 2010. However, they mostly involve small bowel obstructions due to adhesions rather than the issues you've experienced. What I can offer, though, is the contact information for the best weight loss and general surgeon in NC. I noticed that you are in Charlotte, but it would be worth the drive to the Raleigh/Cary area to have an evaluation:
I have also had numerous complecations from an RNY in 2003 and a band over bypass in 2010. However, they mostly involve small bowel obstructions due to adhesions rather than the issues you've experienced. What I can offer, though, is the contact information for the best weight loss and general surgeon in NC. I noticed that you are in Charlotte, but it would be worth the drive to the Raleigh/Cary area to have an evaluation:
DR. PAUL ENOCHS, MD,FACS, FASMBS
160 MACGREGOR PINES DR
CARY, NC 27511
919-234-4468
I am alive today because of him, his staff, and the amazing nurses at Rex Hospital in Raleigh!
DENYSE
RNY 4.14.03/Lost 145 lbs./gained 50 lbs./BOB 5.14.10/down 49 lbs. so far
(deactivated member)
on 4/17/11 10:39 am - Charlotte, NC
on 4/17/11 10:39 am - Charlotte, NC
WOW! How nice of you, Denyse! I absolutely am seeking out a surgeon! What an angel YOU are!
I'm so sorry to hear about you issues and adhesions! Some people's bodies just make more adhesions and they sure can be problematic! I've worked the ER & ICU and have seen the worst of people's adhesions. I hope things go better for you soon!
I happen to be fortunate and my body does NOT make any adhesions. It's probably a good thing as I've had 33 surgeries for various accidents and calamaties. I'm sure it will help the surgeon who maybe will 'fix' my RNY limb before I end up with cancer of the esoph, stomach or lung from the bile shooting to them so long.
I will call DR.ENOCH's office soon or even email them.
I'd be honored to be one of your friends! Thanks so much for your interest and MD referral!
Holly
I'm so sorry to hear about you issues and adhesions! Some people's bodies just make more adhesions and they sure can be problematic! I've worked the ER & ICU and have seen the worst of people's adhesions. I hope things go better for you soon!
I happen to be fortunate and my body does NOT make any adhesions. It's probably a good thing as I've had 33 surgeries for various accidents and calamaties. I'm sure it will help the surgeon who maybe will 'fix' my RNY limb before I end up with cancer of the esoph, stomach or lung from the bile shooting to them so long.
I will call DR.ENOCH's office soon or even email them.
I'd be honored to be one of your friends! Thanks so much for your interest and MD referral!
Holly
(deactivated member)
on 8/4/11 4:32 am - Charlotte, NC
on 8/4/11 4:32 am - Charlotte, NC
UPDATE: I had my "revision" to deal with the bile reflux on July 27th. The surgeon, Roc Bauman, MD in Concord, NC. I was in-hospital for 3 days and it was done laparoscopically. I'm doing GREAT so far, NO REFLUX at all. I'm almost afraid to type it or say it, as I am still not believing it's gone....just shocked!
I'm thrilled IF this was the 'fix' ~~lenghtening of the roux limb~~and wish I'd done it 12 yrs ago! Can't look back, only forward. I'm back on the good high proteins diet and lost 10 lbs last week.
I'm thrilled IF this was the 'fix' ~~lenghtening of the roux limb~~and wish I'd done it 12 yrs ago! Can't look back, only forward. I'm back on the good high proteins diet and lost 10 lbs last week.
I am having very similar issue. The pain and discomfort is horrid. I was in emergency twice for the pain. It was so bad at one point that I could not lift my arm or bend over. I am seeing a bariatric doc next month. Don't know what he will advise (see my story below)
My history, was 280 day of RNY (2005), never felt much restriction, lost only to 255 a year later, went on nutrisystem, lost to 229 by hard work of dieting and exercise, had to go on hormone therapy for other medical issue, started regaining, now up to 289 with no restriction. Recently had an EGD due to severe GERD and found out my stoma is wide open and so food just drops through. I am scheduled to see a bariatric dr. next month. I want to lose but I am more concerned about the GERD than anything else. The stomach acids just wash back up through my wide open stoma causing severe burning and pain making it difficult to function and especially hard to sleep. I have been in emergency twice because the chest pains can get so bad. Do any of the stoma surgeries (eg stomaphyx or ROSE) help with GERD even if there is no weight loss?
My history, was 280 day of RNY (2005), never felt much restriction, lost only to 255 a year later, went on nutrisystem, lost to 229 by hard work of dieting and exercise, had to go on hormone therapy for other medical issue, started regaining, now up to 289 with no restriction. Recently had an EGD due to severe GERD and found out my stoma is wide open and so food just drops through. I am scheduled to see a bariatric dr. next month. I want to lose but I am more concerned about the GERD than anything else. The stomach acids just wash back up through my wide open stoma causing severe burning and pain making it difficult to function and especially hard to sleep. I have been in emergency twice because the chest pains can get so bad. Do any of the stoma surgeries (eg stomaphyx or ROSE) help with GERD even if there is no weight loss?
Divine Lady
"My 3 Rs for success: Remain focused on my goals, Remain committed, Remove Toxins from my life(toxic people, toxic situations, toxic foods)"
"My 3 Rs for success: Remain focused on my goals, Remain committed, Remove Toxins from my life(toxic people, toxic situations, toxic foods)"
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