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Please help! Infection at port area



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Tom, glad to hear you're in better spirits! When you say that the doctor "bypassed" your stomach, do you mean he gave you an RNY gastric bypass operation? If not, when does he plan to reconnect the stomach? Or is the feeding tube going directly into your intestines?? Usually, I think it goes into the stomach, but I really am not sure.

I hope your insurance covers more than $12,000 - maybe you can appeal? When you add that to the original $15,000 for the lap-band that had to come out, it is not a pretty number. :-(

I am praying for you and wishing you the best holiday possible, considering the circumstances.

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When I said "bypassed" my stomach. I meant that I am being fed via feeding tube directly into my small intestines. I also have a tube into my stomach that is draining any gastric fluids being produced. I am told regardless of eating, the stomach still produces gastric acids. The Nexium prescribed is supposed to quiet these gastric fluids. The hole in my stomach is actually in my stomach. This is not to be confused with the three other holes in my skin. What I am interested to know is how the hole in my stomach will heal on its own? Is my doctor correct that this hole will seal itself and heal in 3 to 4 weeks? I’ve tried researching it on the internet, but not much luck so far.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>

<o:p></o:p>

Thanks,<o:p></o:p>

Tom<o:p></o:p>

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When I said "bypassed" my stomach. I meant that I am being fed via feeding tube directly into my small intestines. I also have a tube into my stomach that is draining any gastric fluids being produced. I am told regardless of eating, the stomach still produces gastric acids. The Nexium prescribed is supposed to quiet these gastric fluids. The hole in my stomach is actually in my stomach. This is not to be confused with the three other holes in my skin. What I am interested to know is how the hole in my stomach will heal on its own? Is my doctor correct that this hole will seal itself and heal in 3 to 4 weeks? I’ve tried researching it on the internet, but not much luck so far.<o:p></o:p>

<o:p></o:p>

Thanks,<o:p></o:p>

Tom<o:p></o:p>

Tom... I sent you an email giving you the name and email of a person that also had a similar medical problem. Hers happened for a different reason but the end result is exactly the same. She's been there/done that and she is a wealth of information. Please, contact her and get all the information you can. She had a much bigger leak and she did well in the end. It wasn't fun in the meantime but she's doing very well now. She has a sleeve but she has posted here on LBT every now and again.

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Thank you everyone for your prayers. It is these prayers that are keeping me going. Tomorrow will be 1 week into my "4-week period" of needing to be on the feeding tube. I'm 25% of the way through. I am only hoping that I have no more setbacks. I have talked to some wonderful people and heard worse stories than my own. They helped assure me that a hole in a stomach will, in fact, close on its own. This was good news to hear. I'm somewhat getting used to a routine so things are a little easier. I try to stay off the pain meds during the day because they say the pain meds only slow down the healing process. I save them for at night when I go to bed, but they only last 3 or 4 hours. A problem is that I can only sleep on my back and I wake up in pain after 5 or 6 hours. My bed is not like the hospital's.

Edited by TJWOOD

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Hi Tom,

My heart saddened after reading your story. I am really sorry to hear what happened to you but at the same time glad to hear that you are in such good spirits. I really wish you the best through this journey and that somehow, you will recover from the physical, emotional and financial torment this has placed on you and your family. I will keep you in my thoughts.

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A problem is that I can only sleep on my back and I wake up in pain after 5 or 6 hours. My bed is not like the hospital's.

Tom, surprised to hear that the hospital bed was more comfortable than your own bed at home! It's usually the opposite! Have you tried sleeping in a recliner chair? A lot of folks find it's easier than sleeping in a bed after surgery.

I am continuing to pray for you and hope you can endure this trial and heal. How unfortunate that the doc couldn't give you an RNY, sleeve or DS as long as he had to cut you open to clean up the lapband mess. You have the big RNY type scar, but not the benefits of the surgery. If that doesn't suck, I don't know what does! You must be so relieved to hear from others who have had worse case scenarios. But, they healed and lived to tell about it and so will you!

Keep posting!

Edited by SaintsandSailors

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Can you give me some advice. I have all the same symtoms that everyone has written about. The lapband has been in a year and a half and I've had 6 adjustments. There has not been an adjustment since April 08. In Aug 08 I started feeling pain at the area around the port, went to the dr, he has since lanced it 4x. this last time the infection has been the worst. During my 3rd infection I was scheduled for surgery to have the port moved to another spot when they found from taking so many antibiotics my blood platelet count was way too low. I've been struggling ever since and am now scheduled for this surgery in jan. what I'm afraid of is if he replaces my port, puts it in another location how do I know that infectious material is not in the rest of the lapband system.

How do I know when I get an adjustment if this is not going to start all over again. I never felt right after my 1st adjustment after the 1st 6-wks it was put in.

1JITSU1

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Can you give me some advice. I have all the same symtoms that everyone has written about. The lapband has been in a year and a half and I've had 6 adjustments. There has not been an adjustment since April 08. In Aug 08 I started feeling pain at the area around the port, went to the dr, he has since lanced it 4x. this last time the infection has been the worst. During my 3rd infection I was scheduled for surgery to have the port moved to another spot when they found from taking so many antibiotics my blood platelet count was way too low. I've been struggling ever since and am now scheduled for this surgery in jan. what I'm afraid of is if he replaces my port, puts it in another location how do I know that infectious material is not in the rest of the lapband system.

How do I know when I get an adjustment if this is not going to start all over again. I never felt right after my 1st adjustment after the 1st 6-wks it was put in.

1JITSU1

Sounds like your fill doc gave you an infection... hard to prove though.

You need your port REMOVED. Then at least three months after your port removal and clearing the infection a port replacement in a different location.

If you replace the port in an new location, you spread the infection to a new area. So you deal with the infection portless and then get a new port when the infection is totally cleared.

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Take it from me. Don't take any chances. You need to be thoroughly tested. Don't skimp on a test because of money, it may cost you in the long run. They discovered most of the infected places in me with a CT scan. Even so, the doctor opened me up from breast bone to belly button to "explore" for other possibly infected areas that didn't show up in the tests. With my particular case, my temperature was at 104 and my white count was up to 29,000 so they knew I was bad. My suggestion is, assuming after you have all the approroate tests, and the only thing that shows up is the port being infected, then have the port removed and wait 6 months. Then you can have some peace of mind. If you have had pain from the beginning, that along with infection could mean erosion. That's what led to the hole in my stomach. I brought the pain sypmtoms to my doctor's attention early on and he shrugged it off. Now, I am paying. Good luck.

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Take it from me. Don't take any chances. You need to be thoroughly tested. Don't skimp on a test because of money, it may cost you in the long run. They discovered most of the infected places in me with a CT scan. Even so, the doctor opened me up from breast bone to belly button to "explore" for other possibly infected areas that didn't show up in the tests. With my particular case, my temperature was at 104 and my white count was up to 29,000 so they knew I was bad. My suggestion is, assuming after you have all the approroate tests, and the only thing that shows up is the port being infected, then have the port removed and wait 6 months. Then you can have some peace of mind. If you have had pain from the beginning, that along with infection could mean erosion. That's what led to the hole in my stomach. I brought the pain sypmtoms to my doctor's attention early on and he shrugged it off. Now, I am paying. Good luck.

There is quite a bit of discussion about your doc here:

http://www.obesityhelp.com/forums/Revision/a,messageboard/board_id,5360/

More specifically here:

http://www.obesityhelp.com/forums/Revision/a,messageboard/action,replies/board_id,5360/cat_id,4960/topic_id,3810534/

This gal used to work for your doc, she also had revision surgery by him and now she's having major problems. She's in the valley as well. I don't like her in the least but I do feel sorry for her. She's worked for Simpson, Schlesinger, and now Gitt.

Thought you might be interested in doing a bit of reading.

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It's been almost 3 weeks since I last wrote so here's an update. The holidays were tough with the feeding tube, but I made it. It wasn't easy being fed with Ensure while everyone else was eating these magnificent dinners. Fortunately, I haven't had any appetite. I do have these feelings of insatiable thirst regardless of how much fluids I feed into me. It drives me crazy. I'm not allowed to even have ice chips. My open wounds are slowly healing and I can tell that it will probably be years before the scars look okay. The other tubes in me are a huge discomfort, but I try to remain positive and focus on the date when they should come out. I am scheduled for a "fistulagram" next Friday, the 16th. This will determine if the hole in the stomach has closed. If so, all the tubes get pulled and I can start on liquids for a week. The one bright spot is that I am dropping weight rapidly while on the feeding tube. About a pound each day. It's hard to eat more than 2 cans of Ensure or 700 calories a day because I get so nauseous and also the numerous trips to the bathroom. Before the Lap Band, I was 290 and before the infection really flared up, I was 260. Today I am 220, a 40 lb loss since mid November. Not the way I planned on, but I'll take it. My goal is 170# and I am very determined to reach this goal. Perhaps it is partly in spite of everything that's happened, but also because of my newfound appreciation for good health. I'll let everyone know how things go next week.

Thanks,

Tom

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Tom, my heart goes out to you and your experience.

I was banded June 07. Shortly after I had signs of infection with my port incision. I was officially diagnosed with MRSA Staph Infection in Oct. 07. Due to the infection, my port flipped and I had that reflipped Dec. 07. June 08 brought about port removal and a month of intravaneous antibiotic injections daily. Infection was "clear" by August and Nov 14 port placed back in. Tubing was at near surface of skin and incision infected again so that port was removed Nov 26 and third port put in a different pocket. Infection crept in again and docs put me on Zyvox for three weeks. That seems to have worked. Went in today and surgeon said looks great, let's do a fill. PRN checked port site first with needle and no Fluid buildup (I thought, wonderful!!!! back on track). Band was empty but for a bubble of Fluid so they gave me a 2cc fill and did a barium drink following. Sent me back to work. I get back to my desk and surgeon's calling me to see how I'm doing. Then he mentions that one of the pics of the barium drink looks like I have band erosion. I looked it up online and found:

What is a Band erosion?

This is when the Band actually erodes into the stomach. It is a more serious problem, and generally requires removal of the Band. Band erosion is thought to be related to placing too many sutures (or too tight sutures) at the time of Band implantation. Surprisingly, Band erosion is often unnoticed. Occasionally the port will become infected if bacteria track along the catheter out to the port. Other times patients will stop losing weight. Diagnosis often requires an endoscopy.

They are scheduling a stomach scope for me soon. Not once since my surgery did they do a barium look and now I wish that they had done so.

Will keep you in my prayers, Tom. Best of luck to you and thank you for sharing your story.

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Tom, thank you for posting an update. The last time you didn't post for weeks, you were in the hospital! I have never heard of a "fistulagram". Is that something done at the hospital? Or at the doctor's office?

I sounds like you are still very ill. And, what a horrible holiday you must have had. My heart goes out to you. Are you able to work in this condition? And, I remember you were self-pay for the band, so will your insurance company pick up the costs for all this other surgery and all of these tests you have needed? I know you feel it all could have been prevented if the surgeon had taken your complaints seriously and not let it get so far gone. I also think it was horrible that his office staff told you he was out of town, when he was in town performing surgery on new patients. What happened to you is "criminal" and it is not your fault, yet you are the one who is suffering. I hope this is isn't happening to anyone else.

Congratulations on the weight loss. I wish it had come off another way. You are in my prayers. Maybe the tubes will come out soon and you can at least have a sip of Water. Oh, the things we take for granted until we no longer have them!

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Thank you everyone for your thoughts and prayers. Truthfully, this is what keeps me going.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>

<o:p></o:p>

Beckie, stay on top of the band erosion. My band erosion is what led to the hole in my stomach and the feeding tube. The longer you wait, the worse it gets. I hope things work out for you, it seems like you have been through a lot, too. Let me know how things turn out.<o:p></o:p>

<o:p></o:p>

I have 4 more days for my "fistulagram" test (Friday <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:time Hour="8" Minute="0">8:00 am</st1:time>). A fistula is a medical term for a hole and I have a gastric fistula. One of my three drain tubes goes to an abscess or pocket next to the upper stomach. This abscess is one of the areas that was infected. The drain tube drains or collects into a plastic bulb. Looks like a hand Grenade. During the test, they remove the bulb and inject a liquid dye into the tube and then into the pocket. Normally, the liquid should stay in the pocket. When they did the test in mid December, it showed the dye traveling into my stomach, therefore concluding there was a leak or hole. <o:p></o:p>

<o:p></o:p>

I don't know how I will handle a failed test. I know I shouldn't have high expectations, but I can't help it. I just want these tubes out of me and to be able to start eating again. I am miserable now and so weak with lack of energy from not being able to eat much through the feeding tube. The weight loss is great, but it’s no longer a healthy weight loss. I certainly would appreciate everyone's prayers.<o:p></o:p>

<o:p> </o:p>

Thanks,<o:p></o:p>

Tom<o:p></o:p>

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Thank you everyone for your thoughts and prayers. Truthfully, this is what keeps me going.<o:p></o:p>

<o:p></o:p>

Beckie, stay on top of the band erosion. My band erosion is what led to the hole in my stomach and the feeding tube. The longer you wait, the worse it gets. I hope things work out for you, it seems like you have been through a lot, too. Let me know how things turn out.<o:p></o:p>

<o:p></o:p>

I have 4 more days for my "fistulagram" test (Friday <st1:time hour="8" minute="0">8:00 am</st1:time>). A fistula is a medical term for a hole and I have a gastric fistula. One of my three drain tubes goes to an abscess or pocket next to the upper stomach. This abscess is one of the areas that was infected. The drain tube drains or collects into a plastic bulb. Looks like a hand Grenade. During the test, they remove the bulb and inject a liquid dye into the tube and then into the pocket. Normally, the liquid should stay in the pocket. When they did the test in mid December, it showed the dye traveling into my stomach, therefore concluding there was a leak or hole. <o:p></o:p>

<o:p></o:p>

I don't know how I will handle a failed test. I know I shouldn't have high expectations, but I can't help it. I just want these tubes out of me and to be able to start eating again. I am miserable now and so weak with lack of energy from not being able to eat much through the feeding tube. The weight loss is great, but it’s no longer a healthy weight loss. I certainly would appreciate everyone's prayers.<o:p></o:p>

<o:p> </o:p>

Thanks,<o:p></o:p>

Tom<o:p></o:p>

I have a new phone #, I will PM it to you. Plz call me and keep me up to date.

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