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Over a year later and I still have a leak...



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Hello all. I've posted on here before about my nightmare after surgery, I thought it was time for an update. I was sleeved 12/27/12 in Tijuana, things didn't feel right from the beginning, I was hospitalized over there 4 times in the 3 months that followed and they couldn't figure out what was wrong with me, dr thought I wasn't trying hard enough but I just couldn't get or keep anything in. I'm from San Diego, btw, so it was easy to come back and forth, finally on 3/23/13 Since I could no longer walk because I was so weak and absolutely nothing was staying down, my parents took me to the er at scripps mercy hospital. After a bunch of tests and less than a day later they found the leak. They put me on tpn, I was hospitalized for 5.5 weeks, the nurses told me later I was very very sick and they weren't sure I was gonna make it but I did. After that hospitalization I was sent home early may on tpn and with a pjs drain hanging out of my back, and obviously not having anything by mouth. I was fine for about 2 months then the first blood infection came, my picc line got infected, so i went back to the er with a really high fever, I was septic, that happened 4 more times the remainder of the year. The dr was hoping it'll heal on it's own since it would be best for me, that didn't happen, they tried outing a powder on the leak that helps scar twice and that didn't help, finally they tried a stent and of course that didn't help either. Btw having a stent is the most miserable I felt the whole time, never ending nausea is no joke. The whole time I was going through this I had a chronic cough, it got so bad, sometimes I couldn't talk, I now know that since my case is "peculiar" I also have damage to my left lung and might need some of it removed after my main issue is fixed, that is also one of the reasons drs have been so careful with my case. Anyway on my last hospital stay in December, they put a j tube in (feeding tube) since they could no longer put in picc lines to feed me because they kept getting infected. It has made a big difference, I feel healthier and I can do a lot more things now, except I still can't eat and have a j tube and pjs drain hanging out of my body for over a year now. I haven't been back to the hospital since December, so that's good, bit I'm emotionally drained, I want this to be over so bad, I just can't take it anymore. Right now we're waiting for my insurance to approve a cat scan to see if there's any improvement on my lung and my dr can decide what the next step is, it's surgery for sure but they don't know whether it'd be converting to a bypass or removing my stomach completely, if that's the case they have to see how far up the damage is on my body to see if a dr here I'm San Diego can do it or if it's more complex and they have to send me to USC to see another dr. They might need to bring part of my colon up to attach to my esophagus and intestine and no one here in San Diego does that. I hope I made sense. I just want to get it all out there. After over a year of this I feel like people around me don't wanna hear it anymore but this is my life right now, I need to vent. The only thing I have going on for me is the weight loss but I'm not sure if it was worth it some days. Not being aw to drink or eat anything is driving me crazy and I'm not a happy person at all. If you made it this far, thanks for reading and if you have any questions, feel free to ask, I'm an open book. I think that complications are not talked about enough and I don't want to scare anyone from getting surgery because I've seen awesome results on many people but complications are real and sometimes downplayed.

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Btw I meant jp drain not pjs. Sorry for other typos, my iphone loves "correcting" me

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I agree on the issue of complications not being spoken of a lot. I think people need to be prepared. I know a good many people who aren't getting complications but that doesn't mean you go free. I never ever thought I would have what I did.

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Wow. I don't have the words to express how sincerely sorry I am for you. Thank you for sharing your experience. .. I hope and pray that they get you all put back together soon. I really don't know what to say but I'll certainly keep you in my prayers.

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@@swimbikerun I haven't been on here in a while so I haven't read anything, I don't know if you posted it, but what did you have? I hope that whatever it was/is is now resolved. Even when I talked to my original surgeon after I found out about my leak, he told me they'd just put a stent in and a few weeks later things would be ok, that was in March last year. He made it seem like not a big deal and I believed him so much that I begged my parents to take me out of the hospital here and take me to him, since the drs here told me from the beginning it would be a long process and I refused to believe that, I'm so glad my parents ignored my pleas or I would've most likely died.

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@@Seela thank you :) those are always greatly appreciated.

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Hi

Sleeve thanks for asking. No, malnutrition getting worse. Surgeon missed the gallbladder that everyone else caught. The insurance spoke to them and at least they got rid of the gallbladder. Missed also, my urgent care PCP caught the malnutrition issue first, then a plastic surgeon. The surgeon didn't, he said all was well, when things have gotten worse.

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I appreciate everyone who is honest about complications. I think they need to be honest in how they're dealt with, and surgeons be rated on that. I've found others not to have a lot of experience dealing with the issues and they could use the help.

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I'm sorry you're going through that, but glad seone had caught it. You're right, surgeons need to be rated on how they deal with complications too and know how to deal with them. It's really scary to think that these people don't know how to properly handle them or aren't completely honest about them because of their reputation or In some cases because they want your business.

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Wow!…sorry to hear u have award time…don't think sorry is quite enough!!…wishing u better health in the coming months….yes ppl need to be award that there are risks involve…god bless!!!

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hard***

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@@Pepper123 thank you

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Thanks!

Nah, I just rather give people the facts and then let them decide. I don't regret the surgery, I regret the surgeon and how that worked but I had GI issues before the surgery. I was within a week of getting hospitalized for gastroparesis before, so whatever. LOL.

:)

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I don't think I regret the surgery either, because even through all I've been through I feel better than before, but I have my days lol hopefully once this is over I can truly say I don't regret it.

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      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
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      1. LeighaTR

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    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

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        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

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