TJWOOD

I'm not sure if anyone follows this thread any longer, but here is an update. It is August '09 and I am almost 3 months post-op from my second surgery. In 2 weeks, it will be a year since my Lap Band surgery. In May, fevers returned, more abscesses formed and Ct scans showed that the mycobacterium infection had returned with a vengeance. Apparently, the first hospital and former doctor (my Lap Band surgeon) did not treat this infection thoroughly. I should have been on antibiotics (mainly IV) for many months. Instead, they had be on AB's for 2 weeks. In May, my new surgeon at the Mayo Clinic had to perform another exploratory laparotomy. They had to open me up again to "debride" or cut away all the infected tissues. Another hole developed on my stomach and fortunately that was closed with staples. No feeding tube this time. I did have more drains put in though. I was in the hospital for a week and then sent home with a PICC line for IV antibiotics. After a month, the PICC line was removed and I switched over to oral AB's. I will need to be on these for 6 months. Unfortunately these AB's cost $200/month (after my copay). The infectious disease department at the Mayo Clinic concluded that the particular species of the mycobacterium infection I had was extremely rare. So rare that there has only been one other case recorded in medical literature. It is suspected that this infection came from unsterile surgical equipment. Regardless, I wish my lap band doctor would have taken me seriously early on. His lack of cultures and tests allowed the infection to spread. The blood tests early on (from last September's ER visit) showed an alarming white blood count. The doctor missed this, as well. The total hospital bills/medical costs to-date are almost $400,000! Luckily the insurance company picked up most of it. I have paid about $45,000 out of pocket including the initial Lap Band surgery. I do believe I am finally on the road to recovery. I feel great and all my wounds have closed up. No more bandages for the first time in many months. Scars are numerous and will take years to heal, but I can handle that. From the multiple surgeries, I lost all nerve sensation in the majority of my abdomen. Some of that may return, but not likely. I gained a few lbs back, but for the most part I am staying on track. In conclusion, the lesson I learned is that risks of weight loss surgeries really need to be considered and weighed (no pun intended) against the risk of not doing the surgery. I truly believe weight loss surgeries should be the last resort. In my particular case, I was very overweight at 290#, but otherwise healthy. I should have been more vigilant in diet and exercise before resorting to the Lap Band. I hope my story helps.

It has been a couple months since my last post and this will most likely be the last for this thread. My follow up care has been through the Mayo Clinic and they are absolutely wonderful. The latest CT scan in late March showed nothing leaking out of my stomach and all the abscesses are under control. The scars and wounds I have (13 holes total) will take many months if not years to heal. Almost all, but 3 or 4 are closed up. I am back to normal food again and on a regular diet. Once again, I am faced with with the daily struggles of weight management. Fortunately, I have managed to stay on track. I miss what the Lap Band had to offer me. I try to remind myself every day what I've been through so I can use this to motivate me to continue my weight loss journey without the Lap Band. Perhaps it will be spite that helps motivate me. At least the ordeal I've been through has brought me 3/4 of the way to my goal in just 6 months. Anyway, I really want to thank the the wonderful people who have provided so much support and prayers. This is what helped me get through this. If there is anyone that I can help with further information, please PM. I wish everyone the best on their journey. Thanks and may God bless you!!

It's been 2 weeks since my last update. The first week, I was on liquids and the second week soft foods. The two drain tubes were pulled leaving only the feeding tube and G-tube into the stomach. Both have been capped off and only left in as a precaution. Today, I have an appointment to remove these remaining tubes. I am also supposed to get the go ahead for solid foods. I think it will still be months before the wounds stop leaking completely and close up/heal. The only scare I had was after 7 days of liquids and 2 days of soft foods, I gained 18 pounds!!! Who gains 18 # in 9 days?!!!! I panicked and paged the doctor. He explained that this was a reaction to my body from being in "starvation mode" for several weeks. Previously, I was only able to get in 600 calories each day. I wasn't so concerned about the weight gain as I was about whether or not food or liquids were still leaking out of my stomach. The doctor said that if that was the case, I would be violently sick. Fortunately, I am still healthy with no fevers. He said my metabolism should stabilize. I think it has because I dropped 4 pounds already. Apparently, there is a ton of politics in my doctor's office. My doctor left the business (with no notice) and moved to the opposite side of town. I sought him out so he could remove these final tubes. My follow-up care will be at the Mayo Clinic. Hopefully, there won't be any further complications.

Hello everyone. Some good news this week. I had a gastric gram ("swallow test") on Wednesday. Nothing leaked from the stomach!! The doctor gave me the go ahead to have liquids, but to take it slow. The holes in my stomach may have closed, but could open up if I push it. After not having anything by mouth for 2 months, chicken broth was heaven!!!! In one week, if everything goes okay, I can step up to soft foods. After two weeks, he'll remove all the tubes. He wants to keep them in for now as a precaution. I'm optimistic, but also nervous. I'm afraid if I accidentally push it to much, I'll break. I seem to leak alot more where the tubes exit my skin after drinking liquids. It's only been two days so we'll see how it goes. So far, no fevers. I also had my consultation for a second opinion at the Mayo Clinic on Thursday. This place is so incredibly impressive. Very state of the art. The doctor has yet to review my films and x-rays, but confirmed the course of treatment I am on is one that she would do. This was very reassuring. In the event there are any complications, I intend to switch to her care. Let's hope and pray this won't be necessary. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>

Hi Becky, I am so glad you are recovering. It's nice to know that my circumstances have helped, at least, one person. You will be in my thoughts and prayers. I am all set up at the Mayo Clinic on next Thursday for my second opinion. I'll let everyone know how that goes. My current doctor has scheduled me for a "swallow test" next Wednesday. For this test, I swallow a gunky dyed liquid, Barium, and stand in front of an X-ray machine that films the path of the liquid. If the liquid does not leave the stomach (through a hole), he may allow me to start on liquids. broth would be heaven right now!!! Even a galss of Water.

I will be getting a a second opinion after the disapointing results from last Thursday. I am meeting with a leading GI specialist at the Mayo Clinic Hospital sometime this week. I'll let you know how that goes. After I posted last, I met with my Lap Band Surgeon later that afternoon. He said that the info that the lab techs gave me ("the test results were like they were 5 weeks ago") was only partial information and that there was, in fact, some progress. Sound like BS? I don't know. He said that the abscesses next to my stomach were now closed up or sealed, except for the hole into the stomach. During, the last fistulagram, the liquid dye traveled not only into the stomach. but also into the abdominal cavity through other leaks in this abscess. During this test, the dye only went into the stomach. He said that the suctioning action from the drain tubes are what can be keeping the hole in the stomach from closing. The end of this drain tube is apparently seated right next to the stomach hole. His plan is to take the suctioning off, which he did. In one week, he will begin to back out the drain tube. After two weeks, he said he may pull the drain tubes out entirely. He said the hole in the stomach should then begin to close up quickly. He didn't stitch up the stomach hole in the initial surgery because the tissue was all inflamed and it would be like stitching pudding. The only other option is to do a endoscopony down my esophogus and place a stint or glue to patch the hole from the inside but he said this procedure doesn't have very good statistics, only 50%. I am trusting that God will lead me in the right direction. Thanks again for the prayers!!!!!! Tom

I had the test moved up one day to this morning. Just got back from the hospital. The test showed that nothing at all has healed. They injected dye in one end and it went into the stomach, filled it up, and leaked out another hole. Apparently, there are two holes in my stomach, not just one. I haven't spoke to my doctor yet. I don't know what the next step is. All I know is that I am so distraught!

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>

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

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.

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.