SistahSistah

1/29/13 - Update/Edit: As several have inquired about the timeline and were confused when i said her surgery was in May but she's been on a feeding tube for two years. The surgery was May of 2010. I was specifying the month only as a point of reference for the point at which the issue became critical (July 2010) and how long she was in the hospital that first time (into October 2010). She was also hospitalized for a few months in January 2011 when the stomache leak/infection spread through the diaphragm and into her lungs, and again the following spring and summer of 2011 for the same issues. Sorry for the confusion. Also - I agree that the bulk of the issues centered around follow up care - which is why I was so specific about where and by whom she was being treated. But I quickly learned that such leaks and subsequent fistulas are NOT uncommon with this type of surgery - I never said they were the majority. Additionally Physicians who are now caring for her have previously cared for individuals who suffered similar, though not quite as critical, issues after having this type of surgery. So that is legitimate. Good point on the Hipaa item - but I'm not sure that applies to family or friends sharing information they are aware of. I have no professional or legal obligation to her or her care and am not a POA or medical care provider. Thanks to all who have read and responded - I'm still reading through them all. **************************************************************** Original post: I have not had gastric sleeve, but my sister has and this is her horror story. In the month after her May surgery, by Dr. Chua of Aurora Sinai in Milwaukee, my sister (Jane) came down with flu like symptoms. Although she contacted her primary physician, who was aware of the recent surgery, and I believe she had an office visit with Dr. Chua, nobody showed any concern about infection. This is despite the fact that EVERYBODY knows that infection mimics flu like symptoms and it was nowhere near flu season. Nobody ever did any scans post surgery to determine of there was any issue with the healing of the internal surgery area - even though I have since learned that other patients had experienced similar issues to what my sister was about to go through. It turned out (after three ER visits in three days, despite the fact that I said I was worried about infection from the very first visit) that a staple hadn't held and that food/fluid had been leaking into her abdomen from the stomach causing a MASSIVE infection. By the time Aurora Lakeland in Elkhorn paid any attention to this she was almost dead. She barely made it through and it was literally touch and go for WEEKS!! AND that hospital wouldn't even treat her because they don't do bariatric surgeries - she had to be airlifted to Milwaukee. What followed were numerous surgeries, months in ICU and then regular hospital (from July 4th weekend into October), an induced coma with her hands strapped to the bed so she wouldn't inadvertantly pull out tubes and wires, being intubated for breathing assistance, additional infections, memory loss of that entire time, and leaving on a feeding tube. She has been on that feeding tube for over two years now. Oh she's thin alright. woohoo. But she gets her food from a bag hanging on an iv rack and has to grind her meds and flush them through the feeding tube line, as well as a drain that collects Fluid from her abdomen and open wounds that need daily care. She has NO muscles left. She probably couldn't walk a block if she was allowed to. She came home from that hospital stay with a GIANT open wound the length of her abdomen - I mean it was big enough for me to stick both my hands into - and a wound vac installed in it to constantly vacuum up the fluid and goop that goes along with healing. That fluid drained into a plastic container that hung from tube(s) coming out of her abdomen - which she had to have with her always. It was all very painful and really gross. That was just the first hospitalization. By January she was back in the hospital with another massive infection that had burned through her diaphragm and into her lungs. This time she spent her time in pulmonary ICU. You see they told her to start trying to eat - that they thought the holes in her stomach had closed, but they didn't do regular scans to verify this....again! They were wrong. Again. Only this time her primary physician, Dr. Rosol of Aurora Lake Geneva, had diagnosed her with pneumonia over the phone and had given her a prescription not even strong enough to deal with pneumonia. So when she didn't get better, by the time the Aurora ER took her seriously she was again near death. This time they had to do lung surgery AND abdominal surgery to clear out and treat the raging infection caused by fluid and matter leaking from the stomach into everywhere. So apparently this type of thing isn't that uncommon with this surgery, nor are the "fistulas" that develop as a result of this complication from this type of surgery. If the tissue around this fistula isn't so damaged that it can heal on its own it could take years. If it's damaged - as hers was from all that infection - there is no sewing it closed and it doesn't heal on its own. Imagine being on a feeding tube for the rest of your life - never tasting food, never enjoying a meal or a drink or a dessert or a holiday with your family again. Never a chocolate bar, or a bowl of Cereal, or a salad, or a glass of juice. NOTHING. All because someone convinced you that gastric sleeve surgery was the answer. So if you are considering this surgery, don't. It's just not worth the risk. I know, if my sister could go back, she would choose fat over this lack of a life any day of the week. I grew up thin and am now fat and I would NEVER EVER EVER have a surgery to reduce my weight. Although I haven't been able to be disciplined enough to do it I know the only solution is eat less, move more. Two steps. The only solution.

Last post for me on this topic. I've read through all - except the ones not related or those about chocolate covered bacon, deep fried beer, or deep fried pepsi (lol) It's only fair, now that I've had time to digest all this feedback, and since this created such drama, to provide an updated status. As I mentioned she is still on a feeding tube. She may drink some Water only to take certain pills which cannot be ground and flushed through her feeding tube. other than that - no food, no drink, no anything by mouth. Her food is some kind of tan liquid that comes in a bag and hangs on an iv pole and drains through her feeding tube to her stomach below where the holes are located. As mentioned before, she really has no muscle or strength left - she lost so much during months and months of inactivity during illness, hospital stays, induced comas, and recovery. She is ridiculously thin. She still has a drain, constantly draining Fluid from her abdomen. All of the months and months of weakness, minimal nutrition, etc. have taken their toll on her mind/focus/concentration as well. She is definitely not the same person she used to be, nor does she have the same capabilities. But she lives as normally as possible. She requires help bathing and with daily bandage changes, but we hope that's not permanent. She is not allowed any physical exertion - not even cooking dinner for her husband or cleaning. And he can't do it because he has advance MS and is in a wheelchair. But, finally, the bright spot is that she is undergoing experimental stem cell therapy which began this fall and which has resulted in some tissue growth. If it's not successful it means complete removal of her stomach. We've had to fight to keep the hospital from insisting we go in that direction twice since it began. If it is successful it could mean complete healing of the holes and eventually being able to get off the feeding tube. One hole has closed and one has not and there is still a "channel" that has yet to be healed. So there's a long way to go. This is why she is allowed NO physical exertion. The new tissue is so fragile that just a little exertion or physical activity can result in a tear of the new tissue. She is in the hospital every single week for procedures, scans, and check ups and has been for a very very long time. I just took her in the other day, unplanned, because her drain came out and had to be reinstalled. Almost every hospital visit is a day long event, requires anesthesia, and isn't very comfortable for her. The stem cell therapy is with new equipment that goes through the esophagus and into the stomach through the interventional radiology dept. at St. Lukes Milwaukee. She has been going there since the one January stomach/lung infection when she ended up in their pulmonary ICU and that hospital is pretty incredible. The doctors are (sp?) Dr. Schmalz (internal) and Dr. Bloomgarten (radiology), both of whom have fought on her behalf to keep her in this therapy and with whom we have all been very happy - especially Bloomgarten. The original surgeon is out of the picture. One other surgeon is waiting in the wings because she wants to just remove the stomach and be done with it (such a caring person - read with sarcasm) I still do not advocate this surgery for most. I get that for some - like someone who can't get out of bed or out of a wheelchair anymore, or who doesn't have the time to lose weight naturally because of imminent risk of death, or who has some other mobility type issue like MS and who needs to lose weight but can't exercise - there may be no choice. However I strongly believe that if someone can lose 18 pounds in order to qualify for the surgery (as my sister had to do), they can continue to lose weight that way. Most of the time she thinks there will be no end to all of this - that she is never going to get better - and who can blame her. At times she has wished she would just die. She is almost always in pain and has been since this all started. She is depressed and cries easily, and a lot, and who can blame her. So maybe poor post op care is what lead to this being so critical, but it started with this surgery. She got all the warnings but Dr.'s stress that it's the smallest percentage of people who have complications - so she of course thought it wouldn't happen to her. And the doctors themselves said it was not uncommon for leaks to occur. Maybe with perfect post op care it would have worked out perfectly, and maybe not. The point is that it is a risk and any person considering it has a right to know not only the very best potential outcome, but the very worst. I came across this forum and the first thing I thought was - here's a great place for my sister to connect with others who truly can relate to her and her situation. But I also thought - here's a great opportunity to let people know the worst case scenario, so I did and I'm happy with that. I'm not a skinny person preaching from my soap box without any idea about weight loss and it's difficulties, or the health risks of being fat. I get that it's hard. I get that I don't speak for everybody either. I strongly believe that insurance should encourage and pay for people to work closely with nutritionists, counselors, and some type of physical therapist or exercise coach to provide weight loss solutions rather than ONLY funding surgery as a weight loss option. Our healthcare system is so screwed up - but that's a whole different discussion topic.

Thank you for this post! So similar. You are right - the patient gets to a point where she just wants to give up. It's hard to advocate for yourself when you feel like there is nothing left to live for. And it's hard for a famiily member to watch someone go through that or get to that point. How can I possibly tell her - you'll get better, or you have to keep fighting when I'm not the one going through it. The claw failed for her. She is now undergoing stem cell therapy experimentally. She is lucky to have this option and there has been some tissue growth. But she is not yet healed and the future is unknown. Thanks again.

Whew! There is so much to read through in response to my original post. I'm sure I won't get through it all in one day. I will say that I was indeed angry when I posted it - I'm angry any time I start talking about it. The procedure was a failure in so many respects. My sister says that if she could go back she would never do this surgery. As to the intent of the post - I think it is served. It certainly generated a lot of very thoughtful conversation. It also clearly made some think twice about having the surgery - take a closer look. It also gave people valuable information about the need post op diligence and advocacy. As far as coming back to post - it's a busy life and I have three kids and family members who need help with care. I told my sister about it - although I don't believe she's visited the site yet - because I thought it would be helpful to her to talk with people who have had the surgery whether they've had great or not so great experiences. Hopefully she will. So whether people agree, disagree, think I'm a troll (whatever that is), or a liar (which I'm not), it was the story I had to share and it generated discussion, passionate discussion at that, and thoughtfulness, even prayerful consideration. So it is what it is.

She had no other health conditions that would relate to the outcome of her surgery. As far as internal health - heart, internal organs, lungs, etc. - she had amazingly good health considering she'd struggled with weight issues her whole life. She felt that her medication for an unrelated medical condition was contributing to her weight - and her surgery Dr. supported that. However she was required to independently lose 18 lbs in order to qualify for the surgery, while still taking that medication, and she did that. So the medication couldn't have been the primary cause of her weight. Plus she'd always struggled with weight before she ever took that medicine. Sorry for the delayed response. I didn't realize how many comments there were and am just now getting the chance to go through them all.

Thanks for the kind words. I should probably mention that not only did she see her surgeon while having these flu like symptoms she also saw her primary care physician. Not until she was in septic shock did we get suitable care. I do realize this is a failure of the Dr.s - just sharing the horror story to make the ultimate risks real for others. Thanks again.

May of 2010 was surgery. Sorry for the confusion.

Incorrect - I've never applied for surgery and never would. I struggle with my weight but understand that until I am disciplined and committed enough to eat healthier and move more - I'll just have to keep struggling. My only intent is to give a real life story as an example of the full extent of risks. The leak could have been caught sooner - but the fact is that the leaks are common. Development of fistulas related to the leaks are not uncommon. If repairable, great. If not repairable - could be years or forever without healing. Just a real life story from a real person.