Losing Hope Sleeve Leak 8 mos post op

[losinghope15 0]

I am so depressed. I had a gastric sleeve in Seattle, Washington on September 4th, 2014. Within 4 days was in the ER in my home town and life flighted back to Seattle. I spent almost a month in the hospital and was sent home with a metal stent that was the most painful thing I ever had to endure. I live 5 hours away from Seattle and was having to drive back for follow up CT's, Tube checks, etc every 2 to 4 weeks. I stayed home for another 2 months trying to recover on a feeding tube, drain tube, and antibiotics. I lost my job after the first 2 months because I was gone so long and had no clue as to when I would return. We live paycheck to paycheck so within weeks we were behind on all our bills and could barely afford dinner for the kids, there were actually many nights we just had nothing.

In December even though I was still sick and in pain, I begged to return to work. I have kids to feed and keep a roof over their heads. I already felt terrible for not being able to do anything but lay on the couch for 3 months. My job had given me an oncall status when I lost my position, so thankfully I was able to come back and earn some money. After about 6 weeks at one of my tube checks, endoscopy's my gastro doc said the leak was healed. He took out the 3 pigtail stents that had replaced the horrible metal one that I could not tolerate after 4 weeks of misery. He said I was done and never had to come back again, go on with my life. Within a week I started to get a large abscess at the location of my original drain tube. Long story short I I again was sick for a couple months, 4 or 5 hospitalizations, one of which I was taken by ambulance back to Seattle. I had tried again that terrible stent and it was worse the 2nd time around. I only lasted 12 or 13 days with it at which time I could not even shower myself, I was only able to get up and go to the bathroom. I was on 10 mg of oxycodone every 3 hours to keep from wanting to kill myself ( i never really would) Lost my job again. Shut off notices every week, all creditors calling, 2 months behind on our house payment, and only being able to provide dinner a few times a week. I had nothing to eat for 2 months and nothing to drink for a month. Again I had a PICC line for nutrtion.

I was again told in March it looked great and unless I had complications I did not even need to come back for three months. I was so happy. I went back to work again with the hope that I can help get us out of this hole. Within a week or so I started to have low grade fevers. I told the doc office and they said unless its over 100 just keep an eye out. I felt so weak and achy but thought it was just from the last month of being in the hospital and home on the couch very ill. I went to Urgent Care with complaints of fevers, body aches, and feeling not well. CT was done that they said looked fine. It only got worse and I took myself to the local ER at the end of March and another CT confirmed I still had a leak and now I had Fluid around my left lung and spleen. Back to Seattle I went. Spent another week, picc line, new drain tube, etc. Back home to recover for another month on Home Health. Having to borrow money just to get to Seattle for my appointments. Worse off financially than ever before and strained relationships with parents because of the financial help they have given me. I am again trying to work even though i should not be, but the stress of not being able to provide for my family has been worse than even my own illness. I am grateful I have the best husband in the world that has taken great care of me, but I am hurt by the fact that not one single family member has come to see me in the hospital or at home. My parents live only 10 miles away and have not showed up one time asking If I need some help. I lay here all day long by myself while my husband is out trying his hardest to provide for us. I have not been able to eat in a month and in 3 months have only had a few bites a few times of some Beans and Protein shakes

This of course is only bits and pieces of the horror i' ve been living through the last 8 months. I don't know how much longer I can handle this. It has been harder dealing with the fact that no family has really been there for me and only a couple friends here and there. The guilt I feel as a mother making my kids live this this.

Please, I am looking for information as far as other people who are or have lived through this. Good and bad, I want all the information I can get. This has been the worse thing I have ever lived through in my entire life and I just can't see it ever ending.

Thank you so much for letting me unload, but I don't really have many to talk to. I am lonely, sad, depressed, and feeling i'm running out of the ability to have any hope.

[tnkrrbl 53]

oh my goodness I am so sorry. I'm just starting to consider surgery and your experience definitely makes me question my thought process. I hope you get it all straightened out very soon.

[NZ_gal 7]

I'm very sorry to hear what you are going though, I am very glad to not have had to experience any leaking with mine. Good on you for reaching out and joining this group, I hope it gives you somewhere to work through your feelings.

[Mimi039 21]

I am sorry I don't have answers for you The only thing I can offer is that you don't have to feel isolated Please vent away! God bless you.

[MauiGirl5555 38]

I am so sorry you have had such bad luck with your sleeve. It sounds like an awful experience and each time you think you are past this hurdle you find out you are not.

I just had my final consult with my surgeon 2 weeks ago. He explained to me that leaks can happen and they are challenging to resolve. His policy is one attempt to fix it by using drains and a feeding tube and after that it is time to switch to a bypass.

I am not suggesting you should switch to a bypass but it may be something you should discuss with your doctors.

I wish you and your family the best of luck. I will keep you in my prayers.

[Chele H 427]

Does Oregon not have state temporary disability benefits? food banks? Unemployment benefits, EBT, etc? Local churches that help families in need? Find every possible benefit that you are entitled to and apply for it. Your surgeon's office should be able to help you with applying for disability.

[JamieLogical 8,708]

I am so sorry for everything you've had to go through. It's terrible enough that you've had to endure all of the physical complications, but to now have the love and support of your family through this challenging time is so much worse. Why are they keeping their distance and not offering you the emotional support you need? Were they opposed to the surgery from the beginning?

[Cleo's Mom 257]

@@losinghope15

My suggestion to you is to call your surgeon's office and get copies of everything - all of your pre-and post op tests - most especially each operative report - every time they cut you open. Create your own timeline of when and what happened. Keep copies of all your overdue bills and your financial situation, including losing your job. You might need this for future litigation should it come to that. You've been in misery for 8 months and this is unacceptable, IMO.

I think the suggestion to call various agencies is a good one. Start with SS disability and then try the other ones suggested. food banks, churches, etc.. all good ideas.

You shouldn't have to put up with the pain and the financial problems both. Seek help and good luck.

Your post is a reminder that complication might only happen in 1% but if you're that 1% statistics don't matter.

[CowgirlJane 14,259]

I am really sorry you are going through this. I have been on these forums for several years and the only comfort I can offer is that people with leaks DO eventually heal. Like most veterans, few stay around - but most of them have said they would do it again because they get the weight loss benefits. I know that isn't much consolation now - I sure hope they get you fixed up soon.

[Miss Mac 6,262]

I agree with what I am hearing here. Consider malpractice and/or a bypass. Definitely go for all the benefits you can get. There is no disgrace in asking for help. Hugs from Chicago.

[losinghope15 0]

THANK YOU ALL SO MUCH FOR THE WORDS OF SUPPORT! I really do appreciate all of you. I welcome and look forward to any and all information regarding a gastric sleeve leak, good or bad. I want to learn all I can. So any of you that are or have gone through it (or know someone who has) please share with me the information.

UPDATE: I was in Seattle yesterday for my 2 week check up. I had a consult with a surgeon because my gastroenterologist wants me to have a feeding tube put into my stomach as opposed to this PICC line that is giving me my nutrition. It is better to feed the gut than put calories, Vitamins, etc through my veins. Also, a picc line (it's like an IV that goes into my arm advanced towards the heart) has a higher rate of infection. So, I will have that put in at the end of the month. He is also the surgeon that would do the revision surgery (or fix my leak surgery). One of the ways to potentially fix this gastric sleeve leak is to turn it into a Gasrtic BiPass so we discussed that too. They tell me its a big surgery and a long recovery, about 6 weeks. Also, the risk of complications is higher for me because we are fixing something as opposed to a stomach that has not been touched yet. However, it is so TEMPTING to just do now because I would at least know I was on the road to recovery and I could see light at the end of the tunnel. It's been 8 months and i'm still just as bad as I was in the beginning. I have a PICC line, a drain tube out my back that is draining what my stomach is leaking out of my body, I have not eaten in a month, in fact in over 2 months I have only eaten a few bites of Beans a few times. I'm sooooo hungry! We have to drive to Seattle every few weeks and we are barely getting by financially. My husband is running out of paid time off at work because he has taken off 6 weeks already taking me back and forth and sometimes staying with me in the hospital when he can. So I want this to end more than I have wanted anything in my life. But again the complications of another surgery scare me, look what happened the first time. I think i will hold out a few more months, my gastro doc really wants me too. He says Virginia Mason has the best outcome of gastric leak fixes on the planet!?

After I saw the surgeon, I then had a CT and then a tube check. It it showing lots of air in the cavity that was created from when my stomach leaked into the outside area of my stomach. It caused a collection of Fluid around my left lung and spleen. That is what we are using that drain for, to get the infection and Fluid out so the cavity will get smaller and eventually heal over. It has been especially painful the last 2 days and is draining out pure blood now. So they changed the type of drain to help with getting the air out. My gastro doc came to see me and said keep taking antibiotics, keep the drain, and change the picc to a stomach feeding tube and come back in a few weeks again.

So, I am still very depressed and unsure of my future. I guess I can only take it day by day. I can't even imagine anymore what it was like to be well without tubes coming out of me. My boss has given me another chance to work, but its so hard to work with tubes and pain, but I have to make some money to keep us a float.

Again, Thanks to all of you. It's nice to have people to talk to that are familiar with what I am going through. I hope one day I will be able to report good news. I just want to live and work again and have hopes and dreams like I used to. I did this for my health in the first place and am now sicker than I could have ever imagined. Also, if I can answer any questions to anyone else I would be more than happy. I have gone through this for 8 months now.

Talk to you later!

[Sonnie456 9]

I'm so sorry you're going through all this. I'm considering the surgery; waiting on patient advocate to check benefits. I really appreciate you opening up and taking the time to share all this. I hope this works out soon. This is serious stuff.

[JamieLogical 8,708]

@@losinghope15 Everything you are going through sounds so rough. I am sorry you are enduring this. Hopefully there is light at the end of the tunnel at this point. If revision to bypass with permanently correct this leak issue, I really think you should pursue it. I can definitely understand your hesitation to undergo another surgery, but it really does seem like that may be the only way to fix the problem and get back to a more normal life. Good luck in whatever you choose!

[RayJunCayJun 41]

My heart and prayers go out to you!

My situation was a little different, I never had a stint- I was put on a feeding tube from the get go after exploritory surgery. I eventually was put on a PICC line for 7 weeks but that wasn't until after the sugery that they cut me open and left it open so I'd heal from the inside out that was 3 1/2 months after exploritory surgery. Had JP drain a good 6 1/2-7 months.

I was an NPO patient most of my ordeal which means nothing by mouth, I could have ice chips, 1/3 of a popsicle a day sometimes baby sips of Water. I was on a feeding tube 24/7 so I was never hungry.

All leaks do heal and like you there were plenty of times I didn't see the light at the end of the tunnel, I thought I'd be on a feeding tube and in a recliner for the rest of my life- I even came to terms with that.

Thank GOD I had one of the best surgeons (in my opinion) not only for the surgery but to fix me back to normal, he is one of the few surgeons that will fix leaks etc.,

I didn't have to deal with the horrible pain of stints so considering only what I went through- it was worth it to me and I would do it all over again.

Please consider other options before getting by-pass.

Feel free to message me and ask any questions

[RayJunCayJun 41]

If they do put you on a feeding tube, let me know- I have brand-new never opened feed bags and a couple of cases of Isosource 1.5- I'd send to you for free.