sleeversGF

Hey everyone. I haven't been here in ages, especially to this thread. BF is now fiance and we built ourselves a home that we moved into a year ago. He healed up pretty well (or so we thought) in May of 2012. His PICC line was discontinued and he had been fairly healthy for th last year or so. He kept having respiratory infections off and on for over a year. He's had some abdominal pain, and constant shoulder pain that hasn't gone away with any kind of treatment-- narcotic, nerve meds, etc... turns out we learned why this August of 2013. He had a respiratory infection again (about the 12th one in the past year and a half), and the antibiotics didn't do the trick. I took him to the ER about 3am in the middle of August with severe chills and fever, coughing up some nasties. He had septic pneumonia with kidney failure. After CT scans and huge amounts of antibiotics, he cleared up after two weeks in the hospital. That isn't after finding out that he still has a leak. The surgeon (not the one who did the original revision-- band to sleeve) said he had a self-contained leak that was affecting the abdomen and probably touching the lung wall (thus all the respiratory infections). He and a thoracic surgeon consulted with us, saying that something had to be done. After 2.5 years, this leak has still persisted, though staying in one spot and not growing. It was affecting the spleen. Their suggestion was a total gastrectomy, spleenectomy and partial esophagectomy (since the leak was in the stomach/ esophagus juncture and the leak was damaging the spleen). They referred us to the thoracic surgeon's mentor in San Antonio, a cardiothoracic surgeon who does transplants, etc... He knew he could get the job done and do it well. After another 2 day stay in the hospital, my fiance is now 2 hours away after having had surgery this Tuesday. Luckily, he saved the spleen. He found multiple adhesions, two abscesses in the abdominal cavity and a leak so large he could stick his entire (chubby) index finger in the hole in his stomach. He removed several inches of his esophagus, removed the stomach, and 4-6 inches of his small bowel and reconnected him with an RNY connection. The surgery took six hours, and he had a j-tube placed for nutrition while he heals. All looks well today. Several x-rays of the connection have been taken with the gastrografen, and he's started on Clear liquids today. Tomorrow they will do a swallow study and let him progress with his diet. After 2.5 years, this might have finally been the answer we've needed. We're still a little worried, after everything he (we) has been through. Leaks shouldn't resurface after 2 years. But his never healed. It hasn't been a fun road, but it's been one that has brought us closer together in ways we never dreamed. For that, I'll never wish it hadn't happened. But after these years, this should have been an old nightmare that is now hard to recall. Not the case. I know lots of you come on here wondering about revisions and whether to have this surgery. Searching for "leak" like I did before he did this. A year ago, he was glad for all that he gained (lots of weight lost, losing the high blood pressure and diabetes diagnoses), but today... and yesterday, he wished he hadn't done it. My only wish is that that original surgeon had removed the band and closed him back up-- telling him he needed some healing before doing the revision. This story might have gone a lot differently if he had. He would have been disappointed, but we might not be back in the hospital again. My wish for you all-- ask those questions before you make the decision for a revision. Ask what your surgeon will do if your band caused lots of scarring inside of you. Even better. Use a surgeon who won't do it all at once. You don't want your story to be this one if you could have made different choices. Happy outcomes to you all! And I'm here if you guys ever have questions! It wasn't my surgery, but it was what I have lived since June 2011.

Thank you all for the kind words! It just feels like so much uncertainty and that's the hardest part of going through complications. I knew something was wrong yesterday. I am sure I worried him with my tearful worry all day, but I knew it was more than that drain site draining causing his symptoms and "leak" kept coming out of my mouth. Part of me knew it was back/ still there or whatever you want to call it, but it is what it is. I just hope he heals. And if this area doesn't heal that there are other options to maintain a normal life at some point in our future... our future has wedding bells and a home we are trying to buy right now. This is just terrible timing, but I believe the Maker knows what He is doing for those who believe. Peacequeen, don't ever compare! Leaks, complications, strictures, infections-- it doesn't matter. It is all scary and all bringing health into dark territory. My BF told me 3 times today that he wished he hadn't done it. He said he should have tried working harder at it and doing it the "proper" way. But the band didn't work, and he loves food. Loves it. How do you leave something you love so much? So he felt he should have tried us losing weight together before doing the sleeve and regrets that all over again. But... When we talked on the phone tonight? He said he had been thinking since I left him at the hospital at suppertime-- he did it to get rid of the diabetes, the high cholesterol and the high blood pressure and the horrid back pain he experienced. He did it to improve his health. He has lost about 95# if I'm not mistaken and is sitting around 210# this afternoon. That is something! I told him I didn't want him to ever regret wanting to be a better, healthier person, regardless of where this road takes us. I promised him before his sleeve surgery that I would never say "I told you so" no matter what happened. And I never have (and never will), even through the frustration and sadness and scaryness of all we have gone through. This too shall pass. And we can turn thoughts of "I told you so" into "I DO"s.

I know it's been ages since I logged on or updated this, but now is a good time! My boyfriend had a heckuva time after my last post. He ended up back in the hospital after being home a month or so because of a PICC line infection and ended up staying a few weeks again. They decided to leave the PICC out and inserted a J-tube instead for easier, more manageable nourishment. He went home a few days before Halloween on the feeding tube and able to drink a few fluids here and there, and if my memory serves me, they removed the stents during this hospitalization. He did fine, tolerating the feedings pretty well, learning how to do a lot of it on his own and they allowed him to take all his meds by mouth, which was a huge relief for me. He started to get some self-esteem back, since he was able to manage more of his own care this way and feel more self-sufficient, even flushing his tube and adding cans to his bag each day. I even got a few days off from it, but never stopped visiting him. The weekend before Thanksgiving, he was feeling well enough to spend the night at my apartment, and hasn't left since. It's been great. The drain tube ended up getting yanked out over a period of two incidents-- one where he leaned out of his truck window to punch in the gate code at my apartment and he felt it really pull, and then 2 days later, he caught the tubing on his office chair and it was gone for good. The doc let it stay out since hardly anything was draining. J-tube pretty much the same way. He was eating small amounts and drinking plenty of fluids, and after a shower one morning, found the red J-tube laying on the floor by the commode. Things went peachy ever since. He did have some residual drainage from the drain/ port site here and there. It would heal up for a week or so, then open up! We would hear it gurgling at 2am- so loudly it woke us up. He calls it Mt. Vesuvius, spewing unexpectedly after hearing some rumbly, hissing, bubbling sounds. He has had some issues with food intolerances, especially lactose, like straight milk and sour cream products, but cheese has always done him well. chicken, ground sirloin and cheese have been his main staples with a few carbs, like brown rice. etc on the side. He has done this since Thanksgiving without issue! The past two nights, he started having increased weakness. Hard to stay awake and just tired. He has a shoulder injury that keeps him up some nights, so we both assumed he was just exhausted from not getting good nights of sleep the past few weeks. Last night, I put my hand on his neck and he was burning up. I fished around for a thermometer and his temp was pushing 103 degrees. He vomited most of the day, really just the "slimes" all day. He ate all day the day before without incident. Occasionally over the past few months, he doesn't recognize his full button and the excess would come back up, but nothing major, and we would move on with our day! Anyway, the temp hit last night full fledge. He had massive cold chills, shaking and shivering. I got phenergan and tylenol in him and his fever broke around 8pm and he was looking pretty dang perky. I poked around at that drain area and it was hard as a rock. I massaged it lightly, I heard it hiss, and tons of this goopy, brown drainage sufaced. Nasty stuff. His usual drainage was this lighter green/ yellow color, thin and watery usually. Not this. This was bad. He cancelled his endoscopy that was scheduled for yesterday, because he'd been feeling an increase in restriction when foods were going down. The surgeon said he had developed a gastric polyp, so we figured that was the reason for the restriction because the polyp (growth) had formed over the scar tissue from his leak at the esophagus/ stomach meeting juncture. This morning, he called his surgeon with his symptoms, who told him to go to ER. Go there. CT scan. Definite abscess. They said they're pretty sure he has a contained leak, but I'm questioning it. He didn't show symptoms of that until yesterday. I am still crossing my fingers we are treating an abscess that never went away, not a leak too. I'm probably wrong, but I have to have some wishful thinking here. Quick rundown: His original surgery: Band to sleeve was June 21 last year. Began having symptoms a week into July. Hospitalized around the 13th of July, that weekend. And hospitalized with official leak July 29th for 5 1/2 weeks, then again end of September, first of October for around 3 weeks and got out a few days before Halloween. Here we go again!!! Prayers are so, so welcome right now.

Well, he discharged from the hospital a few hours ago, so wish us luck. They changed a few meds so that things are more manageable for us to deal with at home. I hope he gets something decent for pain at his appointment today. We shall see!

Thanks everyone for the warm thoughts. I always accept prayers, too. He should be headed back home tomorrow, but we may be looking into him going to a skilled rehab facility for a few weeks first. He doesn't live with me right now, so that makes it difficult for me to do things for him more than once or twice a day and they discharged him home with an antibiotic three times a day. Virtually impossible for me to manage, and I hope the doc makes a more likely decision to get him the care he deserves until he heals. I am angry, I know I am. I want my boyfriend back. He is so out of it I only get glimpses of him these days, and I want him well!!!

So, a month later, thought I would update on my boyfriend's leak. He got out of the hospital Friday, adding up to exactly one month in the hospital-- 4 full weeks. The first stent slipped into the stomach. A week later they put two stents in, one below the initial one to decrease the likelihood of slipping and migrating. They migrated-- one up and one down. So last Tuesday they put in 3 stents-- one stacked on top of the other and the 3rd one inside both of those. They stitched them in place. So far so good. He was discharged 2 days ago with his PICC line, antibiotics, TPN, home health. No pain meds were ordered. His protonix (PPI) was ordered IV push, but when I went to fill the 'script, the med won't be available until Monday at noon. I tried 3 pharmacies and this was the best I could get. No pain meds-- the doc didn't "feel comfortable dispensing narcotics IV" for me to administer and told him to see a pain management doctor. All in all, I'm pretty unhappy with the discharge. His PICC line was nearly clogged when I hooked up his TPN Friday evening (he was discharged at 4:30 on a Friday!!) and by Saturday morning, I couldn't get a single antibiotic bag to drip in. I requested heparin from the infusion company and they sent it out. I was hoping a good heparin flush would make the PICC line more viable. It didn't work. So I took him back to the ER. His pain and acid buildup were off the charts and they admitted him last night. They are discharging him tomorrow. He has an appointment with a pain management doctor at 3 tomorrow afternoon, so I hope they do a better job than the discharge plans did of controlling his pain. He was getting dilaudid (morphine) every 2-3 hours almost the entire time in the hospital and then discharged him with nothing for 3 days. I'm not a happy nurse or girlfriend right now. Thanks for listening to me vent and I will keep updating you all. I'm ready for this to be a distant memory. :-/

The drain has made a heck of a difference since they put it in yesterday. The color in his cheeks has returned and he has some new spunk about him. I"m happy he is showing so much improvement. He will get to test out some drinking some fluids today and he is very excited about this. Smkeller, I do appreciate your concerns, thank you. A lawyer isn't really a decision I get to make here. I'm just worried about someone I care very much about. Revisions are risky. Regardless of mistakes made, I want my boyfriend to feel better and get through this. I do not sympathize with the medical professionals, but my boyfriend. I also know that sometimes mistakes are made. Whether they were here or not, I would actually have to request and read tons of records from the past few months. At this point, that isn't my concern. Maybe at a later time. Maybe not. We are only concerned with his physical improvement right now.

A small update this evening. Turns out they are finally going to put a drain in to drain the fluid outside the leak that accumulated. His nausea and vomiting are about 50% of what it was, but when he vomits, it's pretty hard to get under control again. I know he's thankful his stomach is empty through all of this. I am sure the drain will be the biggest piece of making this all become history. I can't wait to see him out of there and back on the right path to healing. Right now, he just has to lay there and take it, whatever comes his way, fighting through closed eyes. Sucks.

I understand what you mean about the tube. As a nurse I care for many people who have these temporarily or permanently. I think I would feel the same way that you do. There's something holistic about healing when you are doing it with things that are not artificial, like feedings, whether TPN or formula. I really hope he tolerates the stents over the next few days as well. I know they are helpful, and if they allow him to be able to take something in by mouth, he will feel 100% better about what he is going through. The idea that he is being fed artificially is wearing away at his positive thinking, but I told him that the means they suggested (NG tube) and are using (PICC and TPN) are meant to be temporary. If they felt he would need it long-term or forever, it would be through the abdomen. I'm glad to know you had yours removed! What a freeing feeling that must have been for you. But how grateful to know how far it has brought you and that it was available when most needed to offer the nutrition required to heal you. I know I can take care of his PICC and TPN, it just makes me nervous, knowing that this "patient" is my boyfriend. It isn't just like going to work. Like the tube vs. real Protein, it just feels different. smkeller: I don't know if that was the case or not. Only his surgeon knows the real answer to that. Regardless, having a band removed leaves weakened tissue behind that is scarred, making a revision risky, whether waiting or not to be sleeved. The tissue under the band may or may not improve over time, and I would trust a surgeon's decision on this, regardless, over my own minimal knowledge in this area of medicine. I feel that surgeons make decisions based on what they see and feel to be the right thing to do at the right time and that's why we put their trust in them. His surgeon's group received excellency awards in the field of bariatric surgery after having many cases reviewed. I trust they did what they felt was right at the time. We are all human. We all make mistakes. These are risks taken in life as a whole, and especially in a surgery setting. Whether a mistake was made or not (I don't, as a nurse, feel anything was poorly done in the OR), but I wish they had pushed treatment on what they thought was an abscess at the time. Either way, he would be in the same boat he is now, because he was treated, just not as aggressively as they are doing now.

Well he is doing a little better this evening, but they had to dope him up pretty well... Ativan and Zofran. He was sleeping hard when I got there tonight. I don't know if he should still be this nauseated with the stent in, so that concerns me. He said it doesn't hurt inside, just feels funny and "hard to describe." The bariatric doc came around and said he would probably be heading home this weekend, so we will see what that entails. They didn't put the NG tube in, so I'm thankful for that. I would much rather manage TPN than the tube, and I think he will be less self-conscious than if he has a tube hanging out his nose over the next few weeks. I was glad to not see that when I walked in. The only thing I really worry about is changing the PICC dressing-- it's been a couple years. I will need a refresher. He just called and had to be medicated again for nausea. I hope he gets more rest. Hasn't had much in the hospital with all the in and out from staff. I hope these 2-3 weeks go by quickly. This is day 1! They plan to pull the stent at about 3 weeks if he can tolerate it that long. ~fingers crossed and on my knees praying~ Complex: wow, not healed all the way? I wonder, do they expect it to close or at this size is it not much to be concerned over? How long did you keep the feeding tube in? I'm glad you're eating and drinking and doing well now. You sound like you feel to be in a good place. The leak is definitely scary but I don't feel like it's something that cannot be overcome. There are much worse complications, but this can be frustrating and not as short-term as we wish it would be. Our bodies certainly do find ways to get through pain and abnormal issues-- we're amazing creatures. I thank you all so much for being supportive. There's not really a place to go as a family member or loved one of someone who's going through these complications, so thanks for the warm welcomes. OH has a forum, but it's not frequented too often (see, I've been all over the web in search of answers!!).

Complex: how long before your leak healed? Are you eating now? So your leak has basically "surfaced" thanks to the fistula and any drainage comes out superficially through the skin? Interesting.

Yep, the band has been a nightmare all in itself from what he has told me about it. He had significant scarring from the band, of course, just as most people have had and worse. So he wanted to do the revision. He poured over the decision the first two months I knew him-- whether or not to do the revision or just remove the band. Right now, like most people with complications, he is wishing he hadn't done the revision. But personally, and I told him so, that I think with the amount of scarring he had, the risk for leakage is there anyway when that band wears away at the GI tissue. Removal can be just as risky as revision in some cases I've read about. The good news about all of this is that all of his back pain has vanished and he no longer needs his diabetic or hypertension medications. Go figure. I hope all will be well. Thank you for all your comments and those to come. I truly appreciate it. I've read about all of you!!

Thanks for responding Tiffy. It's frustrating, and I'm trying to be the strong one, of course. I just want him better!! I'm headed up there to see him this evening, so I hope his tummy has calmed down. I'm sure having a foreign object in his esophagus is freaking his system out a bit, but I would hate to see it migrate from the vomiting.

Hi everyone. I've been a lurker for a couple of months now, learning about this procedure. You guys are tough and have been through so much, and I truly admire you. My boyfriend (of only 2 month at the time of his surgery!) had a band to sleeve revision the 21st of June. I'm a nurse, so I was skeptical (having cared for some patients with some pretty gnarly complications) , but I read and read --and read and researched some more about the procedures and felt pretty okay with it. I was and told him I would be supportive, regardless of the outcome. His surgeon chose to do the revision and removal all in one day. He did great for two weeks and was moving forward perfectly on his full liquid diet, just about ready to graduate to softs. Right around day 15 or 16, he began getting nauseated with some vomiting. Then fever, so I told him not to ignore it anymore. He went in. Was dehydrated. They did an upper GI series and abdominal CT. Was seen by a gastroenterologist. They sent him in for IV fluids to rehydrate him. And they also did an endoscopy. All of this within 3 days. They found nothing but did widen/ dilate his esophageal sphincter a bit due to the appearance of some narrowing. By the end of that week, he was in the hospital. They did a CT there. Gave him IV fluids, IV antibiotics and came home 3 days later on oral antibiotics. He got through a 10 day round and started vomiting again, violently 2 days later. He went BACK in to the surgeon and he ordered another round of antibiotics, but he could not tolerate taking them in and by the time Friday rolled around this weekend, he was hardly tolerating very small sips of water and was vomiting several times an hour. The did another Barium swallow and found what they thought might be a small abscess, but the doc on call didn't want to treat it with his surgeon out of town, and then ordered the antibiotics again and told him to follow up in 1 week. One week and he would have been dead! I talked him into going to the ER Saturday morning. He called me to tell me he didn't want to do that because he didn't want to be admitted. I did a little nurse magic, and told him they couldn't make him do anything. All he had to do was tell them he wanted to be hydrated only and go home. Luckily, when we arrived, they popped him a bag of fluids, zofran and a dose of pain meds and did a CT of his abdomen. They found the "abscess" but later determined the original CT on 7/15 (at the hospital) had been misread and he had a leak with some minor pooling outside of his stomach. So now he has been in the hospital 5 days. He has a PICC line in for TPN, tons of IV fluids and antibiotics, is NPO. The gastro doc did the stent this morning, but I wasn't able to be there. She said she would be putting an NG (nasogastric) tube in as an alternate feeding source (in case the docs don't want to keep him on the TPN). He called a bit ago and has been vomiting pretty violently and the Zofran hasn't helped much. Is the vomiting after the stent normal? He was doing it too much earlier to do the scan to check the stent's placement, so they are holding off until the AM. Someone tell me that this will get better? They found the leak without any major infection in his abdomen. No pain. No fevers. And it wasn't an abscess after all. Just vomiting. So, I certainly think that is a good sign overall, but I'm scared for him. Thanks for listening-- to this book!!! ~worried girlfriend~