Leak Survivors - A Little Help!

[Lissa_S 787]

Hey guys...

So glad everyone is getting heathier and moving forward... I pray the best for all!! Your stories are such a shame when I am sure this was something you were looking so forward to having done!!

Questions... Where did your surgeries take place?? States side or foreign? Any of you guys have the same dr??

Just wondering if its totally random or ....

Thanks

I am from Australia and it was my surgeon's first ever leak. She was devestated apparently - all Iknow is that I had amazing care from here, saw her nearly every day I was in hospital and she got me through what was honestly one of the worst things that had ever happened to me. That being said, now things are relatively normal for me, I am starting to love some of the aspects of the sleeve. I've lots of friends that have had the sleeve and I am the only one that got a leak...so I guess I was just unlucky on the day. It's not the norm but I agree with Iggychick, you need to know the risks and weigh it up before proceeding. Had I known there was no way I would have done the surgery which is probably the wrong move because I really needed it and have lost so much weight in such a short period of time - there was no way I would have lost this kind of weight without the sleeve!!

[4ALongerLife 329]

Atul,

I inboxed you and then came back to this thread. My apologies if the following is a bit scattered, but... I think once we speak, perhaps I can help you?

I had a drain once and a chest tube another time in my 4 surgeries to address my leak. I had brown drainage from both the 2nd and the 3rd time I was hospitalized. Supposedly it was the leaked contents inside of me. The color was dependent on what I ate from my understanding. The drains stayed in me (the 2nd surgery I had a pigtail drain placed in me by IV radiologist, guided by a CAT scan) and I had that thing in me for 2 weeks after my discharge. They removed it once the draining contents decreased and finally stopped. I kept record of it daily during that time (how many cc's were coming out, the color, etc). It changed colors based on what I ate in honesty (red jello=red drainage).

The 3rd surgery (Nov 2012) it was a bigger tube and was a chest tube inserted in my back to drain the fistula that had begun from my lungs/diaphragm/tummy. Once those leaked contents get out inside of you, they cause damage to your organs and tissues. That damage has to be stopped asap or it floats around inside, aggravating your tissues/organs and eventually puts a hole in them from what I was told during my experience. The 3rd surgery that I had corrected the leak and they sewed the fistula apart, but due to the leaked contents still inside of me (I was on IV antibiotics during my 9 days in November, then came home on IV antibiotics), which they tried to suck out thru the tube and had me on vanco during my hospitalization (I think) and other IV antibiotics... but they had so enflamed my insides that within 7 days of my discharge of my 3rd hospitalization, those cells had re-enflamed the lung/diaphragm/tummy fistula and it grew back together.

After the 3rd hospitalization, my complications (and continued issues) showed in my diet - I would ingest 3 oz of a Protein drink and cough up 5 oz. And I started a low grade temp off and on I think. That's been the story these last few months for me (until now). It started on a thursday and that weekend it got worse. I called my dr. on that Monday and he wanted me to go asap to the radiology dept. Upon chest xray and barium swallow test at the hospital, they saw the fistula had regrown - as well as a second one had begun from my tummy, the pus wrapped around the spleen and had eaten a hole into my colon. Thankfully it was only a one way fistula or I could have had fecal matter coming back up into my tummy. I know that's gross... but it's honestly what could have happened.

I had my 4th surgery (an open surgery) to take a piece of the small intestine, patch it up on the hole (the hole was at the part of the esophogus that meets the tummy, right before the suture line starts), removed a foot of my colon and resected it, then placed a feeding tube inside of me so that I don't lose more weight. I am struggling now to get enough calories so I stop losing. I'm also on home IV antibiotics since my discharge on 12/15. I have two more weeks I think to go on those, they just changed them to a different prescription (flucanazole and invanz) as the last ones I was experiencing nauseau and vomiting (merepenum and mycamine). I see an IV nurse every friday for my PICC line changes (the bandage around it) as well as for blood draws to see what cultures are like.

I had a NG (naso gastric) tube during my hospitalizations 2, 3 and 4 for TPN. I am now home doing a feeding pump and on osmalite per the DME company that supplies my tubings. Home TPN is too costly so that's why I have a feeding tube. My dr. said I can put my Protein drinks through my feeding tube, so I've been trying that the last few days in order to try to keep my diet "balanced" (and trying to get my Protein in).

From all of these leaked contents, I now have a lower left lung abscess due to my body trying to encapsulate it into my diaphragm and protect me. But it pushed my lung up out of the way and has now not reopened with any of the breathing exercises that I ever did. I hope that it will resolve, but IDK. I will have to see a pulmonologist in a few months on that one I am sure, but right now, I've quite got enough on my plate medically speaking.

I have had several CAT scans and chest xrays and barium swallows during all of this experience. We are trying to no longer do any more CAT scans in order to limit my exposure to more radiation. So I will have another upper GI (barium swallow and chest xray) in 2 months if I keep proceeding well, then repeat that in another 2 months. I am thinking I want one before 2 months, which my dr. is agreeable to. I want to see my insides and KNOW it's progressing according to plan.

I also ran a low grade temp a lot of the time .... and that has finally stopped now. (yay!!!)

I never did a stent as what I read and saw on it, I was scared of it. I was told by the IV radiologist that if it doesn't work this time, that is what they will have to do next. (yeah my reaction was WTH do you mean "if it doesn't work"????????). Leaks aren't easy to get under control.... oh well hell, I'm living proof of that buddy.

I'm not sure what else I might be able to help you with, but pls inbox me and I'll be happy to help if I can. (not that I know everything, but I can share from my own experience if you need it)

Best to all, always.

oh and btw, I had 3 opinions this last go around.... one dr. said I was one of 12 cases he's seen this year like this and it's like 1 in 1000 supposedly. as many as they are cranking out lately, i suspect we shall see that number continue to increase as they milk the system for these surgeries....they are becoming more and more common to do.

[pedsnurse120304 19]

Wow. You are an amazing and strong person..hopefully the leak will be fixed for good..

[stephwb 1]

I looked at this site so many times in the weeks before surgery. I thought i had done so much research and thought i had really waived the possibility of a leak vs the gain of a healthier life. I also seem to be in the group that i feel a leak was sugar coated. I thought that it was so rare and no one ever said anything about the long, painful ,scary and the uncertainty of how to treat it. Here is my on going story.

I got a call three days b4 my surgery that my surgeonn had an emergency and could we move my surgery up a few days,or i could another surgeon in the practice(whom I've heard for the past 6 mo is the best) since my husband was already going to be off work to b with me and we had help with our 4 kids already lined out i opted to go with his partner. Surgery was done on July 10th i felt great pain under control able to walk around my house. Then on July 13th i was getting in bed and all of a sudden i thought some one tried to rip my arm off. No one ever told me about that symptom so i thought i pulled something. The pain was horrible. By the 15th i couldnt keep down a sip of Water,my heart was about to beat out of my chest and my breathing was very labored. Trip to ER discovered a leak was admitted to ICU. Picc line in and 2 JP drains. B4 i was released from ICU my surgeon left on a mission trip. My original surgeon wanted a stent and the surgeon taking over for my surgeon disagreed so they opted till he got back to make a decision. My surgeon opted for 6-8 week stay on TPN and NPO at the end of 6 weeks and several ct scans and an upper GI he felt it was self contained and released me with drains and clear fluids 3 days later while drinking purple gatorade my drain contents turn purple. This continues over the next few month in and out of hospital,with the longest time at home 2 weeks. Home health,TPN but never really unpacked. After month 5 of this, he decides we will get the stent. My original surgeon put a stent in october and readjusted it 3 weeks ago. It is very uncomfortable, i have no desire to take in even Water cuz i like a brick lands in my stomach. I fight nausea constanly,horrible heart burn and tons of acid. I have 3 weeks to go and a recent ct showed improvment finally, but in the weeks if it is not healed the will perform a by pass. Im in the hospital right now for a contaminated picc. Im told i wont regret it once life is normal but i dont c how that's possible since i will always regret the burden on my family, the fear my kids have been through and time lost.

[iggychic 1,405]

I looked at this site so many times in the weeks before surgery. I thought i had done so much research and thought i had really waived the possibility of a leak vs the gain of a healthier life. I also seem to be in the group that i feel a leak was sugar coated. I thought that it was so rare and no one ever said anything about the long' date=' painful ,scary and the uncertainty of how to treat it. Here is my on going story.

I got a call three days b4 my surgery that my surgeonn had an emergency and could we move my surgery up a few days,or i could another surgeon in the practice(whom I've heard for the past 6 mo is the best) since my husband was already going to be off work to b with me and we had help with our 4 kids already lined out i opted to go with his partner. Surgery was done on July 10th i felt great pain under control able to walk around my house. Then on July 13th i was getting in bed and all of a sudden i thought some one tried to rip my arm off. No one ever told me about that symptom so i thought i pulled something. The pain was horrible. By the 15th i couldnt keep down a sip of Water,my heart was about to beat out of my chest and my breathing was very labored. Trip to ER discovered a leak was admitted to ICU. Picc line in and 2 JP drains. B4 i was released from ICU my surgeon left on a mission trip. My original surgeon wanted a stent and the surgeon taking over for my surgeon disagreed so they opted till he got back to make a decision. My surgeon opted for 6-8 week stay on TPN and NPO at the end of 6 weeks and several ct scans and an upper GI he felt it was self contained and released me with drains and clear fluids 3 days later while drinking purple gatorade my drain contents turn purple. This continues over the next few month in and out of hospital,with the longest time at home 2 weeks. Home health,TPN but never really unpacked. After month 5 of this, he decides we will get the stent. My original surgeon put a stent in october and readjusted it 3 weeks ago. It is very uncomfortable, i have no desire to take in even Water cuz i like a brick lands in my stomach. I fight nausea constanly,horrible heart burn and tons of acid. I have 3 weeks to go and a recent ct showed improvment finally, but in the weeks if it is not healed the will perform a by pass. Im in the hospital right now for a contaminated picc. Im told i wont regret it once life is normal but i dont c how that's possible since i will always regret the burden on my family, the fear my kids have been through and time lost.[/quote']

Steph, I'm so sorry you are having this horrible complication scenario! Gad it doesn't seem it could get worse does it!

Your last line struck me....I must admit that though I am finally out of the woods as far as having to lose my stomach and I'm feeling much better, I still regret it and always will. Because of what I put my family through, how could I not?

I hope they get the PICC issue under control hun. I will keep you in my thoughts and send some healing wishes your way daily!

[lizv123 389]

I've been told I won't regret it either but I'm not buying it. At most I can see myself being a little less hateful towards myself.

I put my family through Hell because I couldn't control my eating and was never happy being overweight.

I'm home now and so far I haven't gotten sick today. Actually ate a few bites of Soup. But my fiancé had to help me walk to the toilet, had to support my 250lb self because I passed out while getting out of the shower last night.

The people that sugar coat on this site make me sick. Some of us nearly died. There's nothing positive about that.

[lessofmeismore 1,405]

I can't imagine the suffering my heart goes out to each and every one of you.

[lizv123 389]

I can't imagine the suffering my heart goes out to each and every one of you.

I know I'm very lucky to have so many people encouraging me through this mess. I'm sooo much more thankful for this site than I ever thought I would be. I wouldn't wish a leak on a soul, but I'm so glad people can come here and get support that family can't offer.

My family does their best and I'm forever grateful, but experience is the most helpful tool I've had. :')

[RawrrAshleex3 137]

I forgot all about the contrast!!! Ughhh the first time they did it, I had a hot flash and started to cry ashamed because I really did think I peed myself!!!!

Flgirlygirl; I had it in NJ, my doctors first and only leak. He felt awful. Even on days his partner came in to check on me, he still came, holidays and all. Even though it was a gastroenterologist that put the stent in, my dr pushed off his other patients and made sure he was in the room with me. When I was having second thoughts about the stent being put in because of what I read, he immediately dropped his other appointments and left the office to come see me and make sure I was ok and calm me down.

I regret the surgery as well, probably always will. I never want to put my family and friends through that again.i never want to go through that pain and suffering and the blackouts and sleeping with my head in a bucket from the nausea. I lost more than just the weight, I lost "friends" and most importantly my fiancé. I'd rather be fat, healthy, and happy. I had a low bmi with no health problems and I myself didn't take the risks that seriously. If I could I'd go back in time and kick my butt for thinking to do such a stupid thing!

[iggychic 1,405]

Ashlee I wish I'd have had your doctor. He sounds like a great guy. Mine was not so much I had a similar existence to you...I wasn't unhealthy and wasn't having issues. I didn't hate myself. I wanted to be thinner, but I was also socially active, comfortable being in the public eye (part of my life) and my family was finally in a good place after having dealt with my son's illness for six years. In my mind what I think of is how I made my son scared. He's six and life has been hard for him. So I take the one time in his life that things are good and go and mess them up...knocking his world for a loop. Then on a purely selfish level, the pain...the pain I endured was, previous to me, unimaginable. Seizures...full body, laying in that damn chair knowing that my body was going to feel this all over charlie horse like pain, over and over and over again for more than a day...I don't know, maybe 30 hours. I couldn't walk, talk, anything. I would just feel the waves of pain over and over. I hate my doctor for that. There was more pain, but that alert yet helpless feeling...honestly, I feel deep down hate for him allowing that to happen to me.

Liz, my family was very supportive, but even my dearest DH was kind of clueless as to what the significance of the issues were. When they were calling in the chaplin my husband was celebrating that we had a diagnosis. "Yea we have a leak" was sort of his focus, which made sense because with our son all we did was fight the lack of a diagnosis, but I knew what a leak meant, so the diagnosis scared the crap out of me. This website was a godsend to me when I was suffering. I'll never forget what people did for me Just a moment of their thought helped immensely.

[Olivia23 68]

Hearing these stories really scare me. Don't know now if I should do it or not. Has anyone dealt with these complications and paid for the original surgery in cash? If so, how could you afford it?

I guess that is what I'm most scared about, not being able to afford if I get a leak. I have insurance but my bmi is not high enough so I plan on getting a loan for the surgery. If something goes wrong, I can't afford if something happens.

[iggychic 1,405]

Hearing these stories really scare me. Don't know now if I should do it or not. Has anyone dealt with these complications and paid for the original surgery in cash? If so' date=' how could you afford it?

I guess that is what I'm most scared about, not being able to afford if I get a leak. I have insurance but my bmi is not high enough so I plan on getting a loan for the surgery. If something goes wrong, I can't afford if something happens.[/quote']

I paid cash for the surgery which wasn't a huge stretch. The complications were however quite painful. This is why I tell people to get supplemental insurance if they have anything to lose. For me, I was self insured, so the costs of my complications were mostly carried by my company (so instead of it coming out of my pocket directly, it came out of our profits...either way, we paid for it). Most people wouldn't have this fortunate experience and you could lose everything you own

[Kapoorvilla 117]

Got my first hospital bill yesterday. It is only for the first day in the hospital and it is near 80,000.00 I feel so guilty for the emotional and financial stress I am putting my family through. I also feel outrage that because my doctor had an accident he is billng me these extravagant bills. I am still going to recieve another four days worth of bills. One of those days will include the second surgery to fix what he messed up the first time. Wouldn't it just be right to say hey the slip of my knife cause you harm so I am not going to bill you anything but the original surgery price!!! I have insurance but have no idea what I will be left owing.

[lessofmeismore 1,405]

Kapoor, my best friend had her bowel cut during an endometrial ablation of her uterus. She spent 5 days septic and severely ill. Also, on the way out of surgery she awoke to choking on vomit in her mouth, she was sedated so could only bring her arm up to grab her Dr's jacket...he proceeded to just move her arm away and she passed out from it and had to have her lungs suctioned.

I tell you this story because when she recieved her bills from everything...they were paid by said Dr.

He did this without a word from her.

I wish all Drs. would do this.

I hope you find this type of resolution.

[stomlin75 161]

To Any Gastric Physician / Surgeon

If you are reading this blog then please respond.

As my mother still is not out. I want to consult

doctors who have seen the leaks. my doc claims

this is his 1st patient. So he is in learning mode.

I will directly pay for the consultation.

Atul

Hi Atul,

If I were in your position, I would definitely just get in touch with another practice and ask for a second opinion. Where are you located?

Steph