mattuti86

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.

I guess I was lucky? That my stent didn't hurt but I was on 3 different nausea meds and none of them worked, it was not fun at all. I was allowed liquids during that time but wasn't taken off the tpn, which was awesome because I remember trying to have a Popsicle on thanksgiving and I only had like 2 bites and could lnot lay down for hours after I had it. Good luck, I really hope that the stent does heal your leak.

I'm so sorry that you've not only had to deal with complications with your health but also with drs. I don't know what I would do in the position on without a dr I felt very happy with.

Oh wow, I can't imagine not being able to find another surgeon in my area, I would've died! I've been very lucky. My home health nurse told me about a patient she had with a leak who her dr wouldn't see her anymore because she had no money to put up front for a surgery, she was already in debt from previous surgeries. I can't imagine how frustrating that would be.

Been gone for a while, sorry. Picc line infections are super scary, I hope I never have to go through that again. I got my cat scan today, hopefully I get the results tomorrow. I think someone previously asked how I managed to get another dr, my original surgeon was in Tijuana so when I went of the er here in San Diego I was lucky my current dr, dr. Zorn was there. He really is amazing. I'm so thankful for him,

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.

Mine is my dog's name who I had to put down in July 2012, a few months before getting sleeved and my year of birth.

@@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.

@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.

@ thank you it means a lot to me that people are wishing me the best, it gives me strength since it gets very hard at times.

I'm so sorry :/ it's so frustrating when they can't find what's wrong with you and they don't believe you. I really hope they find out what's going on soon.

@rj's/beginning thank you. I think that's one of they possibilities but the problem here is that I have damage to my lung and diaphragm too and the dr says that doesn't happen, he has only found one other case similar to mine and presented my case in a conference and was met with a lot of huhs? So he is being extra cautious but says we're now at a point where I'm a lot healthier and thinner and we need to decide on the next step, we just need another cat scan to see if my lung is doing better and it's safer to proceed. I agree, I've had enough and it's been way too long. I just want to get back to normal life, whatever the new normal is gonna be. Have you had any problems since having this procedure?

@@laura71 I don't know what to tell you. Like I mentioned, idk if it was his fault or it just happened. My friend and her dad both went with him and had no problems, I've also read on here of a lot of people who have gone with him and have no problems. I also saw on TV (while I was in the hospital) a story about a patient of his that was brain dead in the hospital in San Diego and they wanted to disconnect him so another hospital in irvine, I believe took him, it was on TV cos of the controversy around it, apparently the hospital wanted to disconnect him and his family refused, they even had protests outside the hospital. I don't know the whole story but according to the report he was like 23 years old, had the sleeve and got a leak, he lived in Los Angeles and his family drove him down to see dr ponce who put in a stent and the guy went back home, according to the head dr at the hospital where it was done ( which wasn't INT where I got mine) the guy didn't go back in time to remove the stent, (they didn't interview dr ponce but showed his picture) and when they were driving down to tj to get him medical help cos he was really sick, he had a heart attack and ended up in a hospital here in San Diego, brain dead, I tried to contact his family on Facebook but never got a response. Idk what happened to him but considering he was brain dead. I'm sure other doctors have stories like this but don't tell you about them, this one just happened to come out on the news because of the controversy around it.

Thank you all for your very kind words. I'm sorry that some of you are having complications, specially so far out, that's scary. I hope they get resolved soon, being in and out of hospital sucks! And always having to see doctors is a pain too. We did this to be healthier and avoid things like that.

Dr. Ponce de Leon, but I wanna add that I know people who have had surgery with him and are doing great. I don't know if this was surgeon error or not and will never know for sure, but I'm not blaming him. I feel like it just happened cos it happened.

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.

@@Pepper123 thank you

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.

@@Seela thank you those are always greatly appreciated.

@@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.

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

Hello, all. I've been suffering with a leak for 6 months now, this has not been fun at all, I will write my story once I'm home from hopefully my last time in the hospital, I've been here for 2 weeks for an infection in my blood, this is the third time I've been hospitalized since the leak was discovered. Anyway, there's finally some light at the end of the tunnel, I no longer have a leak and had a procedure yesterday to help my stomach build some scar tissue and make the part where I had the leak stronger, next week I'll have a swallow test done and if I pass I will start on liquids. After 6 months being npo I'm really afraid of how my body will react to food again, so my question is, for those who have had a leak, how was your experience after? Did you struggle a lot at first? I tried to find a post with this info but couldn't. Any info will be greatly appreciated, I really want to know about your experience with this, thanks!

I really hope you'll get nothing but support from him. My pcp seems to have no clue about the surgery, I had another pcp before surgery but due to insurance changes ended up with him, I need to change him but I've been dealing with so many things I keep putting it off. Plus when I see him I basically just give him an update. The gi surgeon is the dr I've been dealing with this whole time, he's so awesome, I'm gonna miss him once I stop seeing him.

Thank you :-) I think my original dr is a great surgeon but really dropped the ball when the complications started, don't tell my mom I said that, she gets mad when I do lol

@kindle I did go back to my original surgeon, several times. I had my surgery on December, maybe 3 weeks later I was having trouble eating anything and feeling sick, weak, vomiting so I went to see him, got admitted for a couple of days, he did an endoscopy and said I had gastritis, gave me meds and i went home ok, same thing happened a couple of weeks later, had a leak test, passed but threw up on the drs shoes lol more meds, a few weeks later again, was in hospital like 5 days. This time no leak test, j went home ok, then it happened again, this time he blamed me, said i wasn't trying hard enough but i was. It had gotten to the point where i couldn't even get up to pee, my mom had to help me. So when he discharged me the third time, i was still very sick but he claimed 5 days of Vitamin shots would bring me right back up, btw this time i had anemia. Everytime i went i was dehydrated. I came home a few days and couldn't keep anything down at all, i was very, very weak, reflux was horrible, i called him and he said to go in for an antibiotic on Monday, it was Sunday morning. He even tried putting me on anxiety meds, that just made me sleep for days but he wouldn't check for a leak again. I had a really bad pain on my left shoulder and he told me it was the way i was sleeping. He made me cry one day cos i felt so sick and it seemed like he didn't believe me when i said i was trying really hard. Anyway that Sunday i called my mom said that's it, we're going to a hospital here. That was march 23, i got admitted into Scripps mercy and fortunately fell info th hands of an awesome medical team, they found out about my leak right away. I had no problems getting a dr here, might have been because of how sick i was. I called my original surgeon the day i found out i had a leak, he said i should be fine in no time and i never talked to him again. Sorry for the super long answer. Any questions, let me know. Btw I'm super happy about my light at the end of the tunnel, but it's funny that I've been feeling kinda sad about not being in the hospital and not seeing the staff anymore. I've been in there a little over 2 months in th last 6 months.