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.

@rj's/beginning wow, that sounds so rough. I guess I've been lucky that I haven't had to have another surgery yet, my new and super awesome doctor wanted things to hopefully heal on their own so he has tried to get in there as little as possible. I feel very, very lucky to have found him, he's even seeing me pro bono( he doesn't take my insurance). He's a very nice man, in fact all drs I have had to deal with over here have been extremely nice and encouraging. I just hope my insurance approves a cat scan soon so we can start working on the next step.

@@metoonow I'm sorry you've also have had complications but I'm so glad that your leak has healed itself and it's not stubborn like mine don't worry about the weight gain on tpn, I hated it too! But it'll come right off when you're off of it.

Thank you I just can't wait to be free again I work 2 jobs and to sit home is killing me.... Also good because of the Crohns I am not a candidate to be converted to the RNY....wish us all well and quick healing

Sitting around at home gets old very quick I hope your next appointment brings you all good news and you're back to your normal life soon.

I am so sorry to hear about the leaks and all here. My heart goes out to all of you. At the same time, thank you for your honesty in letting others know the situation. I don't think that this information needs to frighten people but to educate them into considerations and to be prepared for any issues.

That's what happened to me and another friend who was on TPN. I have gained some but it is Water weight from edema.

@@metoonow I'm sorry you've also have had complications but I'm so glad that your leak has healed itself and it's not stubborn like mine don't worry about the weight gain on tpn, I hated it too! But it'll come right off when you're off of it.

@LilMissDiva Do you mind me asking why they're converting you to a bypass so long down the sleeve road?

No I don't mind. Ever since I have been lap banded I've dealt with extremely bad GERD, and when i was sleeved it was not as well known that the sleeve can make it even worse back in 2010. It was okay for a long time but in the past 6 months or so it has gotten so bad that I can't even keep a bite down without it urping back up. It's causing me a horrible cough and I sound raspy sick all the time. Not only that it's causing me very bad gastritis.

Tests have been done and tests showed that though I do not have really bad trauma such as ulcers or cancer, I do have some inflammation, a very misshapen stomach (due from surgery) and my esophagus pretty much doesn't hold anything in. So, my new surgeon is going to revise me to gastric bypass since fixing the sleeve and doing a Rose procedure would be far too risky. I'd have a lot more risk of leaks and posible revision to bypass anyway.

ETA: leaving the situation as is would be a certainty to end up with esophageal cancer or barretts esophagus. Def not a risk I'm willing to take just so others will think of me as a "success"... lol I really don't care what others think. I have to save my quality of life and my life in general.

@LilMissDiva Do you mind me asking why they're converting you to a bypass so long down the sleeve road?

Edited April 13, 201412 yr by LilMissDiva

You were able to get another surgeon? In this area, the big 2 places have non compete agreements. Then the one other hospital that does them in the area will not perform them because certain doctors "fraternize" with other doctors. Either way, they won't do it once you're touched by another doctor.

I also developed GERD/reflux after surgery and its been bad at times. Just depends on what I eat. So I've got no chance at getting it fixed.

Another reason why you should investigate thoroughly - and my blog is getting updated to reflect my records and others experiences so that people can be educated, which always makes for the best possible outcomes for the patients.

I learned very quickly when I asked one place, what am I getting for my money and they said oh don't ask that. You are the one paying thru copayments and the like, your sick leave, etc. so get the best you can for your money.

You are doing this because YOU are worth it - make the investment.

You have been through soooo much!!! I feel for you. Your story made me cry. I have esophageal spasm from the surgery in 2012 which is NOTHING compared to what you are going through. I will pray for you. You need some relief and a break.

i'm so sorry you had a leak. i had one too, started getting treatment for it three months out (it was contained so i didn't get sick) in november and i'm still hoping for a miracle with the latest and last option before they start thinking of surgeries like what rj's had. i have a clip that was put in a few weeks ago.

doesn't it seem when you get to the dealing with this around half a year it starts just becoming what you are and your life revolves around feeds, and you just feel like your life, period, is being held back. i thought by now after losing 100 lbs and everyone says i look so great i'd be happy and free. but i just show them my jtube hookup and say yeah, i'm still healing from this...

i hope you have support! you will get it here..

A Jtube? Did you get TPN first or other things?

A Jtube? Did you get TPN first or other things?

no. they never gave me that. i am actually glad, it sounded fricking scary. but i have issues with hydration, i just came home tonight from the ER, had to get a bag of Fluid cuz i was dizzy and sick which = dehydration.

Dang I had TPN for 5-6 weeks. Really stunk but unfortunately I'm headed back in that direction. Most all my labs are good but I have every sign of worsening malnutrition. I really don't want to go through that again but its temporary instead of a feeding tube. Considering my skin peels apart now, a surgical procedure would NOT be a good idea for me.

I'm surprised you got one. How did your doc manage that?

A Jtube? Did you get TPN first or other things?

no. they never gave me that. i am actually glad, it sounded fricking scary. but i have issues with hydration, i just came home tonight from the ER, had to get a bag of Fluid cuz i was dizzy and sick which = dehydration.

Ana..how many times have I encouraged you to drink G2 Gatorade. It helps keep your electrolytes up and will make your trips to the ER disappear. 17 months later and I still drink 1/2 of a bottle diluted with Water and I can feel it if I don't drink it..Oh yes I get my 64 oz of water in as well. But that really makes a difference.