People who have had complications from surgery please post your story
hi Kim
I am so sorry this is happening to you as the same thing is happening to me for the last 6 months. I reflex so bad I could not lay down but protonix did the job for me same dose 40mg x2. I have been in and out of the hospital for 6months and spent 2 months in the hospital on tpn. then a month ago my muscle gave in I could barly walk and could not get out of a chair at all..went in the hospital for 2 weeks then 2 more weeks of rehab in a nursing home. but my last stay in the hospital they put in the feeding tube in my intestines and so far I have been able to stay out of the hospital I still cant eat anything and drink very little but the feeding tube has been a life saver for me.
I work from home and have been even able to return to work with my tube..days are long and hard cuz I am really tired but at least i do more then lay around in bed all day.
if you can get a tube I would try that.
I hope things get better for the both of us :)
I am so sorry this is happening to you as the same thing is happening to me for the last 6 months. I reflex so bad I could not lay down but protonix did the job for me same dose 40mg x2. I have been in and out of the hospital for 6months and spent 2 months in the hospital on tpn. then a month ago my muscle gave in I could barly walk and could not get out of a chair at all..went in the hospital for 2 weeks then 2 more weeks of rehab in a nursing home. but my last stay in the hospital they put in the feeding tube in my intestines and so far I have been able to stay out of the hospital I still cant eat anything and drink very little but the feeding tube has been a life saver for me.
I work from home and have been even able to return to work with my tube..days are long and hard cuz I am really tired but at least i do more then lay around in bed all day.
if you can get a tube I would try that.
I hope things get better for the both of us :)
Sorry you are continuing to struggle.. a few things.. Please try the Prilosec ... either name brand or generic... see if it helps... get the pneumonia cleared asap.. elevate the head of the bed with those things you can get at Bed Bath and Beyond. If you have to go back to the hospital... SNEAK those vits somehow ! Do check into Dr Keshishian, Dr Rabin or Dr Gagner... they are all great with weird/complicated complication stuff. They are your best bet for sure.
I am sorry you have had such a run around. I know Dr E is supposed to be very good but sometimes, another doc just needs to review things, you know !
Hang in there and keep trudging along ! Praying for answers and soon.
I am sorry you have had such a run around. I know Dr E is supposed to be very good but sometimes, another doc just needs to review things, you know !
Hang in there and keep trudging along ! Praying for answers and soon.
Ginger<><
Revision #2 Dr John Rabkin June 21, 2013; First Revision DS - Dr Maguire 5-18-09; First DS 7-15-2003 Dr Clark Warden = Third time is the charm 
Severe stomach acid issues can cause nausea. I think you need to get the acid under control. I would start taking Prevacid or Prilosec in addition to your Protonix. Take one for 2 weeks, if it doesn't seem to help, switch to the other and see if that helps. If not, start working your way through all the available PPIs. Add them to your present regimen so that you don't risk taking one by itself that doesn't work. If it seems to work you could just continue taking both or phase out the previous one to see if the new one works by itself. Acid is my only major complication, and it can take quite a while to calm down after it takes hold. I'm taking Dexilant in the morning and 40 mg OTC Prevacid in the evening, and it seems to be helping. Pepcid and Zantac are acid reducers, but can cause rebound acid after they wear off. My most recent flare-up calmed down after I added the Prevacid and stopped the Pepcid/Zantac.
Also I read in passing recently something about an operation (not ANOTHER one!) for severe stomach acid, no idea what it's about but something to consider.
Good luck, sweetie, you have been thru the ringer. I wouldn't worry too much about vites quite yet, it takes months for vite deficiencies to build up. Protein supp - and water - are another issue, and the real reason why you need to get the nausea under control.
Also I read in passing recently something about an operation (not ANOTHER one!) for severe stomach acid, no idea what it's about but something to consider.
Good luck, sweetie, you have been thru the ringer. I wouldn't worry too much about vites quite yet, it takes months for vite deficiencies to build up. Protein supp - and water - are another issue, and the real reason why you need to get the nausea under control.
Height 5' 7" High Wt 268 / Consult Wt 246 / Surgery Wt 241 / Goal Wt 150 / Happy place 135-137 / Current Wt 143
Tracker starts at consult weight
In maintenance since December 2011.
Just wanted to say I'm so sorry that you've gone through so much after your DS. Your story is very important and I'm glad you are sharing it--many times we overlook the very real possibility of complications. Please give Prilosec a try-you have nothing to lose. I hope you get healthy and on the road to happiness in short order.
I just want to add my voice to the chorus:
Please try the Prilosec. Not instead of Protonix, but in addition to it.
TPN, if you've been reading is not so rare as you are being told by your current doctors. IF you require additional surgery, you'll need to go in in the best possible condition and you're not heading in that direction currently. Try contacting Dr. Peters or Greenbaum if no one local will help get you a TPN. I'm sure the ongoing care of it could be coordinated locally for you once it is in place.
I'm with Kayla in that you need to resolve the layers like dehydration and reflux first because their side effects can be devastating themselves as well as complicate the diagnosis of any other underlying issues.
Hang in there!
Please try the Prilosec. Not instead of Protonix, but in addition to it.
TPN, if you've been reading is not so rare as you are being told by your current doctors. IF you require additional surgery, you'll need to go in in the best possible condition and you're not heading in that direction currently. Try contacting Dr. Peters or Greenbaum if no one local will help get you a TPN. I'm sure the ongoing care of it could be coordinated locally for you once it is in place.
I'm with Kayla in that you need to resolve the layers like dehydration and reflux first because their side effects can be devastating themselves as well as complicate the diagnosis of any other underlying issues.
Hang in there!
Check out my profile: http://www.obesityhelp.com/member/goodkel/Or click on my name
DS SW 265 CW 120 5'7"
I've read this entire thread three times now completely. What I am hearing (and please correct me if I am way off base) is that people with experience with reflux are giving your advice based on their experience but you are expecting/hoping/waiting for a doctor to give you advice.
Sometimes you just have to take the bull by the horns. Especially when you can try something that is over the counter that you haven't tried before or haven't tried recently.
I don't think you need a DS surgeon to try to work on your reflux issues. I think you need to stand up for yourself and do what YOU NEED TO DO to try some of the advice that has been given to you here.
This is what being a self-advocate means. The docs don't always have the answers.
I agree that your reflux may be the biggest problem that you have right now and may be causing other severe issues (like pneumonia). I hope you will take the advice of the many people who posted to you here and figure out which reflux meds and in what combo you need to control your reflux.
Waiting for a doctor to "fix" you isn't working. Try something else!!!!
~Becky
Sometimes you just have to take the bull by the horns. Especially when you can try something that is over the counter that you haven't tried before or haven't tried recently.
I don't think you need a DS surgeon to try to work on your reflux issues. I think you need to stand up for yourself and do what YOU NEED TO DO to try some of the advice that has been given to you here.
This is what being a self-advocate means. The docs don't always have the answers.
I agree that your reflux may be the biggest problem that you have right now and may be causing other severe issues (like pneumonia). I hope you will take the advice of the many people who posted to you here and figure out which reflux meds and in what combo you need to control your reflux.
Waiting for a doctor to "fix" you isn't working. Try something else!!!!
~Becky
I puked for the first 7 months after my DS for no known cause. I got on TPN and felt 90% better in 3 days.
I've been off of TPN for about a month now, and I feel the difference. I'm not as sick as I was by any means, but my energy is still in the tank. My labs are "normal," holding steady for over a month after having been drawn weekly after TPN.
I too picked up reflux after DS that I didn't have before. The PPI that I take seems to control it reasonably well, but I suspect that I have fairly slow motility still because my tummy sometimes turns into knots.
I'd say you really have to get fluids and nutrition in you right away before anything else can be figured out. I have a blood clot in my arm from where the TPN was, so yes, it has its risks (no problems with it while it was in). I'm not sure how the J-tube works and if it serves the same purpose, but do what you have to do to get your nutrition and hydration on track.
I'd echo what others said about trying new medication and different dosages.
Hang in there!
I've been off of TPN for about a month now, and I feel the difference. I'm not as sick as I was by any means, but my energy is still in the tank. My labs are "normal," holding steady for over a month after having been drawn weekly after TPN.
I too picked up reflux after DS that I didn't have before. The PPI that I take seems to control it reasonably well, but I suspect that I have fairly slow motility still because my tummy sometimes turns into knots.
I'd say you really have to get fluids and nutrition in you right away before anything else can be figured out. I have a blood clot in my arm from where the TPN was, so yes, it has its risks (no problems with it while it was in). I'm not sure how the J-tube works and if it serves the same purpose, but do what you have to do to get your nutrition and hydration on track.
I'd echo what others said about trying new medication and different dosages.
Hang in there!
Nicole Lab rata data link- One-half of a DS couple! - I'M BELOW GOAL!
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http://bit.ly/DSExp After a very rough start it's official--I
my DS! Romans 8:28 Looking for DS information? Start at http://bit.ly/newDS and DSFacts.com
On May 19, 2011 at 11:55 AM Pacific Time, KimberlyHeidi wrote:
I dont want to be a downer, but I also know I am not alone either and need the support from others who have went through issues related to their surgery post op.I know everything might not have been directly related to surgery but the issues I am having did not start until after surgery. I have been VERY complient following Vitalady's schedule and have tried to switch over all my BA chewable and chewy vitamins as I heard they arent the best. I try to get in all my fluids and protein as well. So this is simply not a story of me being non complient.
I KNOW that vitamins, protein and fluids are what keeps us alive and they have to be taken to survive and maintain. I feel pretty well educated in knowing my body and the changes it has been through. And while I am NOT blaming my surgeon for a crappy surgery (I do not think this is the case at all and think surgery went very well) I am unhappy with the aftercare I have gotten and want to know who most people go to for second and third opinions etc. I was thinking of Rabkin in Cali as I hear he is the best and most compassionate out there.
Anyhow I am sick of posting issues and of me contstantly being sick and then getting judged and picked on. I have had an especially hard time these past 2 months or so when most of the issues started.
The first one to start after surgery was my reflux/GERD. I knew this was common and I was even told I had this prior to surgery but didnt have any issues. Since surgery it is now in the severe stage even with taking two PPI's a day plus Zantac and Pepcid. A recent study showed its severe and persistant.
The next issue I had was unexplained extreme abdominal pain that came in waves and felt like contractions above my belly button. I thought it was gas at first but gas meds didnt do anything. After that it started to come with nausea and vomitting and dehydration. I have been in and out of hospitals, Dr offices, and such way too much but kept being told to come back. I have had every test under the sun and my surgeon did see my after his surgeical resident diagnosed me with an unbillical hernia but he couldnt find one. He opened me up and found endometriosis and cysts. Obviously this was not due to my surgery and I am thrilled he found it as I have been having pelvic pain for many years but this didnt help the pain and was above my belly button or the nausea and vomitting. I was told be a few different Drs that it felt like I had a defect there but they didnt think it would cause that much pain.
The first few weeks were full of tests, lab work, U/S of abdomen/gallbladder, CT scan with contrast, X rays and such. I met with GI Drs, with my PCP many times, with other surgeons, with my surgeon and no one could figure out what was causing the pain. During this time I also developed hemmeroids and fissures which didnt make matters any better as that hurt so badly.
I was admitted at my hospital for a 6 night stay where they gave me fluids, antibiotics for a possible baterical overgrowth, did an EGD, Flouroscopy and were giving me continious anti nausea meds through my IV. When I had those meds through IV I was able to drink and eat and keep things down. Due to this they finally released me on Mothers Day. That night it all started again and I couldnt figure out why the same foods that didnt bother me would bother me. I finally had to go back to the hospital and back on fluids and anti nausea meds and felt better. They tried me on different types of anti nausea meds (Phenergan and Zofran and even a patch behind the ear) all some seemed to work better than others but none of them seemed to control the nausea to where it was at bay. I was then diagnosed with esophagal dismotility which they said was causing the spams. They put me on anti spasm medicine for that.
I then couldnt keep anything down and was developing a cough and a slight fever and feeled achey. The hospital wanted to admit me and kept me for 3 days. They did the radioactive egg dye test and said I have a moderate case of Gastropresis and that it would be mild for the average person but its moderate since I had this surgery. They said this condition can cause all the pain, nausea, vomitting etc that I have been going through. I was thrilled to have a diagnosis and was wondering how this worked with my other two diagnosis' being GERD and the esophagus dismotility. The day the released me I started getting the chills and had a fever and couldnt stop coughing. I asked for an x ray but they said I was fine and could go home and if I still felt sick to go to the ER.
By now I am sick to death of the ER's, hospitals, Drs etc. I feel miserable and have chest pain so I ended up back in the ER as my PCP couldnt see me and with chest pain they didnt want me to wait. Finally yesterday they did a chest X ray and deteremined I have Pnemonia which would have likely been found and treated if they listened to me and did an Xray before I was released from the hospital. They gave me antibiotics in my IV and then gave me a script for them. They said if I couldnt get them to stay down I would have to come back to the ER. Well I couldnt get them to stay down and wound back at the ER last night and they gave me 2 different kinds of antibiotics via IV. They got ahold of my PCP and worked out a plan to hopefully keep me out of the hospital which would be to get an injection of the antibiotic at my PCP's office. My PCP was in another clinic today but I did see one of his partners and the nurse gave me the antibiotic and I go back tomorrow for day 3. I am not sure yet what is going to happen over the weekend.
So right now where it stands I have 3 confirmed conditions which everyone has agreed even if my surgery didnt directly cause them its making them worse as I never had these issues prior. So the 3 definate conditions I have are the GERD/Reflux, Gastropresis, and the Esophagus Dismotility. All of these especially combined can cause all the pain, nausea, vomitting and dehydration I have been having. Like I said they have done pretty much every test on me and given me every form of different types of anti nausea meds and we dont know why they will only work well in IV form. I cant live my life in the hospital or in the ER. I had this surgery to be able to live my life and in the past 2 months I havent had much of a life at all. I have tried to be strong and fight for my medical rights and to fight the nausea and pain and everything else to where I will even try to keep swallowing when I feel stuff coming up to try and get it to stay down.
Besides those three issues nothing else seems to be wrong (besides the pnemonia which was not caused by my DS). My gallbladder is fine, there doesnt seem to be any obstruction or stricture, no scarred tissue was found etc. Due to the nausea and vomitting I am getting dehydrated and probably malnurished very quickly. I have been trying to gag down protein drinks and shakes and anything I can get in. Same with vitamins I have tried to open up what I could and take a sip with it and just pray it stays down. I feel and look like hell though.
I have some good hours here and there where I can get down things and dont feel miserable and think things are going to be better and then they go back to the way they were. I just dont know what to do anymore or who to go to. My surgeon feels he has done his share with giving me surgery and then opening me up when I had pain. While I agree in part with that I feel as well as my other Drs that he knows my anatomy and should have a little more interest in helping me control the nausea vomitting dehydration cycle and giving me more advice than just to keep things down. He did say if I was going to get a feeding tube placed it needed to be done by him and needed to be going right into my intestines. Right now I dont know if I need that and I really dont want that if its not 1000% needed. He told me to have my labs rechecked in a few weeks and come back and see him which I do plan on doing. However the surgeons here (who do not do the DS) think this operation has caused all these issues and if not caused them then definetly made them uncontrollable and my DS needs to be reversed. Obviously that is something I dont want either. All I want is to be able to feel good and get in my fluids, protein and vitamins and not feel weak, dizzy, nausous, and be in the hospital constantly.
If you made it this far thank you. I am not saying the DS was a mistake as it has clearly changed my life both for the good and the bad. For the good I have lost over 95lbs in less than 6 months, my liver enzymes have returned to normal and my liver no longer looks enlarged and fatty, and I feel better about myself and feel like I have something to look forward to when I am not sick. However being sick for these 2 months has really put a damper on me and I wonder what did I do to myself. I never had these problems before surgery and I knew the surgery had its risks I just was not prepared for this all to happen.
Would love to hear from some of you who had complications and hopefully what helped you etc. Again I am not posting this to upset anyone I am just saying that I am having issues and feel I need a place to be able to vent and share with others who can understand. Thanks again if you got this far.
At this point, if you are malnourished (especially with gastroparesis); I do not think you should avoid the enteral (tube) feeds. Vitamin and mineral deficiencies often cause n/v/d, etc. Considering what I've read on this board.. DS patients don't have a lot of "wiggle" room and you need to get this situation under control as quickly as possible. For starters, I think you need a current assessment of your vit/mineral status. ok, I'm just going to email you. :) hang in there.
Quick update and post. I am at the hospital and I have been sneaking my vites so far no problems. I went to see my PCP yesterday for my antibiotic injection and my blood pressure was super low they said I looked grey I was very weak and wobbly and my oxygen level was a little lower than what he wanted and my pulse was high. They started an IV there with antibiotics in it and I waited there for almost 6 hours for a bed to open up. Then they sent me to hospital admissions and waited there for a while and then they finally had my walk up to my room. I asked for a wheelchair since I was dizzy but they said it would take longer so my husband and son just helped me. Got upstairs about 7 hours after seeing my PCP or so. They did another chest Xray which shows the Pnemonia has gotten a little worse but not out of control so that is good. They also did an EKG and the random blood work etc. I had fluids all day yesterday with antibiotics at my PCP's office and then 2 different kinds via IV here.
I did have anti nausea meds via IV which normally has done the trick and by 10pm was starving and they could only give me a box with a turkey sand. and crackers and some other things I couldnt eat. I was worried about the turkey bought thought I would be safe since I had the IV anti nausea meds in me but a few minutes later I felt it just sitting there and ending up throwing it all up and some blood which they said was just from coughing. I had my bed pretty elevated with pillows and was able to get some sleep. My legs started aching even though I got up and moved around some and am on a blood thinner shot so I dont get clots while at the hospital.
This morning they came to see me and said pretty much they would see how things were at tomorrow. Today is day 4 on the antibiotics and I want to say I feel a tiny bit better with the chest pain but its just a tiny bit better. I am hoping one of the antibiotics will soon kick in and I will feel better. I was able to keep a little juice down and also a string cheese and some pudding so far with the anti nausea meds.
Thanks again for all the help. Does anyone use a special kind of pillow to help and elevate your bed as well? I will also plan on trying and adding the new PPI to my current one to see if that helps. They should interact or anything since they are supposed to do the same thing?
Edit: also wanted to ask how my labs look that I posted above?
I did have anti nausea meds via IV which normally has done the trick and by 10pm was starving and they could only give me a box with a turkey sand. and crackers and some other things I couldnt eat. I was worried about the turkey bought thought I would be safe since I had the IV anti nausea meds in me but a few minutes later I felt it just sitting there and ending up throwing it all up and some blood which they said was just from coughing. I had my bed pretty elevated with pillows and was able to get some sleep. My legs started aching even though I got up and moved around some and am on a blood thinner shot so I dont get clots while at the hospital.
This morning they came to see me and said pretty much they would see how things were at tomorrow. Today is day 4 on the antibiotics and I want to say I feel a tiny bit better with the chest pain but its just a tiny bit better. I am hoping one of the antibiotics will soon kick in and I will feel better. I was able to keep a little juice down and also a string cheese and some pudding so far with the anti nausea meds.
Thanks again for all the help. Does anyone use a special kind of pillow to help and elevate your bed as well? I will also plan on trying and adding the new PPI to my current one to see if that helps. They should interact or anything since they are supposed to do the same thing?
Edit: also wanted to ask how my labs look that I posted above?
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