Little backstory

I was sleeved on March 30th of 2015. I woke with excruciating pain from the start. They did not do a swallow study and sent me home the next day. The pain did not subside over the next few days and I felt I was a wimp for being in so much pain. I had no other problems like fever or BP or heart rate issues. By April 9th I was still in pain and was told to go to the ER. I did and it was there that they discovered a 9cm abscess/leak. I was rushed to ICU and put on antibiotics. In less than a day I went in to 100% renal failure and was put on dialysis. I was in the ICU for 5.5 weeks and went through a number of procedures to fix collapsed lungs, plural effusion and installing various drains. I left the hospital after a total of 6 weeks with a pic line for TPN and a drain. I have gone back in twice for lung issues due to sympathetic effusion.

Now

I still have a 1cm leak. It isn't closing and the doctors want to play a wait and see game still. I have a mesh stent in my esophagus that hurts like hell and I am on two kinds of pain killers just to get through each day. I feel like I am never going to heal. When looking through the Internet it seems so few have had leaks that I can't tell if this experience is normal or if I am worse than others. I just feel like I am never going to get better. Not only does the stent hurt every day (something I can't figure out if everybody hurts from or just me) but the drain bag keeps ripping stitches out and so it fees like a knife is on my side all the time. I am so depressed and frustrated and feel like I am in this alone. Sorry to rant but nobody seems to understand what I am going through and I thought maybe somebody here would.

Omg nomorefat guy!!!!!!

I am so sorry you are going through this and thanks so much for telling us your experience, it helps us all knowing what casn happen. Do you have friends and family to help you cope right now. You are not alone!!! Message me and we can chat. You are not alone!!!!

By alone I just mean I haven't found anybody who understands what I am going through.

Gosh I am so sorry you are going thru these challenges. I'm not a expert in WLS but I am pretty sure this isnt normal. Hang in there. And thanks for sharing your story. God bless you and your journey. I hope that others post on here and give you support. This is a great website with a lot of caring people. I hope you find the peace you need soon. ((Hugs))

I cant pretend to know what you are going through but wish you al the best. And a recovery soon.

_{Holy shit!!!}

_{Mate, that's ordinary...}

_{Like others have said, I can't pretend to have any idea how you must be feeling or what you're going thru.}

_{Just know that there are some incredibly caring and helpful people here. If they can do anything, they certainly will.}

_{Please keep us updated and in the loop if that's gonna help you.}

_{Take care mate...}

_Kinda

Hey bud, I totally understand what you're going through. I'm almost two years out from my surgery and am still battling a leak. PICC line, TPN, NPO, stents, pain killers, infections, antibiotics, plural effusions, Fluid in the lungs, drains, extended hospital stays -- I've gone through all the same stuff (except the ICU, got lucky and have avoided that one thus far).

I wish I could tell you it gets better. I've been thinking my situation couldn't get any worse for the last 22 months...but then it just keeps getting worse. My life has crumbled around me in the time since choosing to have this surgery. I know that isn't the type of stuff you want to hear, but at least know that you are not alone. I know it's cliche to say "oh, well it could be worse!" But that's what has gotten me by this far without deciding to give up. I could be terminally ill. Or worse yet, I could have kicked the bucket without any warning or chance to say good bye to my family. One thing I struggle with the most (which you may as well) is knowing that my situation was the result of a choice that I made. I wouldn't be in the situation I'm in if I simply would have chosen to not have the surgery, where as a person who is terminally ill likely isn't in that condition because of one simple choice they made.

These forums seem to be mostly populated by women. Being another guy who has had the same luck as yourself with this surgery, I do have some advice -- see a therapist. Now. I've always been of sound mental condition...until the last two years. My mental makeup has slowly faded into relative madness mixed with depression. I've gone from being a "tough guy" who has always been the person in my family who was the emotional and mental pillar which held things up in times of strife. I slowly evolved into a puddle of my former self, breaking down into tears every day without warning. I eventually chose to see a therapist and it helped a lot. I wish I would have done that sooner, but you know -- "guy" + "therapist" = ...

It sounds like you've made some progress though -- take that as a positive sign. I do believe that this surgery will result in us both living a high-quality life. It's just going to take us longer to get there. Keep your head up! This bullshit will end eventually.

P.S. I have had numerous stents in. In fact, I have one in right now. It does hurt like hell. I had one almost two years ago (right after leak diagnosis) and it wasn't stitched into place so it migrated up into my esophagus and caused violent hiccup attacks. I would hiccup 60-70 times in a row- rapid fire. Each hiccup felt like a knife going into me. That one had to come out right away. The stent I have in right now is stitched in place and has stayed put so far. It does hurt like hell and I have had problems drinking and eating with it. They say I can progress to soft foods now, but I haven't been able to. So I eat pudding and try to get as much fluid down as possible. But it's hard.

The other thing you mentioned is your drainage bag ripping stitches out and you being in pain. This has happened with my drainage bags as well. I just removed the stitches and use a lot of tape to keep things in place. My drains have caused a lot of pain as the route the tube needs to take to get to the abscesses always goes through a very sensitive area near the ribs/thoracic diaphragm/lungs that causes a great deal of knife-like pain. I'd say that is normal. Hopefully the tubes' stay in your body is short!

The other thing I would recommend/warn you about right now is pain medication. I was naive and didn't really know anything about it before my surgery. Now I've been doped up on all kinds of stuff for the better part of the last two years. Without it I can barely get out of bed. But this stuff is evil. If you're as unfamiliar with it as I was, start educating yourself now, because none of my doctors told me anything about withdrawal or how to wean or anything. The result of not doing it properly is a hell I wouldn't wish on my worst enemy. Pain meds are a touchy subject in the medical field, to say the least. Study up on them for sure. If you're like me and need them to function, you will face a lot of hard times as your tolerance builds and the meds become less effective, or if you happen to run out of meds early or want to stop taking them and have to face withdrawal. You will also come across certain doctors/nurses who think you are a junkie any time you say you are in pain and would like some medicine no matter how many drains and foreign objects that are sticking out of your abdomen. I've never done drugs, smoked a cigarette, or drank but going through a normal process of acute and chronic pain needing to be alleviated by medication has caused me to feel like I'm some sort of junkie in the eyes of some of the medical professionals I've come across. It's stupid. Just try to learn as much as you can about this stuff. Also, try to get into a pain management program. They will help you with your meds (without making you feel like a criminal for needing help with extreme pain) and will also help you learn lots of good non-medicinal ways of helping with your pain.

Well, that was a long "P.S.!" Sorry! I've rambled on long enough. Hopefully some of this helps in some way. I hope I haven't depressed your further. You aren't alone though!

Edited August 21, 201511 yr by Some Guy

Sir, thank you. You have echoed all the feelings I am having. The depression is big. I have been suicidal at times. I just feel like it won't ever end. I am on percosets and fentynal patches. The third day in the patch is a nightmare as it is the least effective day before I change them. I have dealt with the junkie accusations as well. Both from nurses and pharmacists. I tried not taking pain meds for a bit but I can't function when I do that. It has been exactly as you describe only a shorter time frame. I pray I don't go as long as you have. I don't know that I could make it. Thanks for the info on stent pain. I was worried it was just me. Please keep me posted on your progress.

I also want to say I feel the same about being in this situation because of a choice I made. It doesn't help that my family won't let me forget it either. They all told me not to do this surgery beforehand and now play the "I told you so" game over and over. It doesn't help my emotional issues.

I really appreciate your response. It really helps believe it or not. I mean I don't want the two year thing like you are going through but it helps to know that I am not the only one who has felt like this. I actually was told the day before yesterday that the doc won't let it go two years and will instead do a surgery to rebuild a stomach before that happens. I don't know if that is something I would want to do either. Again. Thanks man. Really appreciate it.

Hey, no problem! Hearing about your situation helps me as well. It feels really lonely being in this situation, as you know. When people ask what's wrong with you, you can't just give a response that they will easily understand. You can't just say "I have a broken arm" or "I have leukemia" and they will understand what you're going through. It feels like you are on an island by yourself that you can't escape from. So knowing there are others like yourself that have dealt with this is comforting, in a weird way. I hate saying that seeing other people in misery is comforting, but I think you get what I'm saying.

As for the "I told you so!" attitude coming from your family -- F that. That is NOT what you need to hear at all right now. HOWEVER, there will come a time when you are healthy and living a long, high-quality life at a normal weight and at that point your life will serve as a giant "I told you so!" right back to them. In the mean time, try to avoid those folks and stick close to your support systems, whatever or whomever they may be.

I haven't heard about any possibility of a stomach rebuild. That is intriguing to me. The "final option" that has always been presented to me is to remove the sleeve/stomach and convert my setup to a bypass.

Good luck man! Like I need to remember myself, get that Protein in. That's what will help us heal.

Where my leak is the bypass pouch would leave the leak still there. What my doctor said is that they remove your stomach and form a new stomach with your small intestine and attach that to your esophagus. It can be done laparoscopically. It is his "last resort" option.

I totally understand the feeling comfort in others going through it. You are the first I have talked to who seems to get what it is like to go through this misery. It is comforting to have someone understand me.

As for avoiding people with the "I told ya so" attitude, it is tough to do when you live with one of them.

Keep I touch and let me know how things progress for you.

so my doc is doing a complete gastrectomy. My leak got worse and he said this is the best option. Terrified but he seems certain this will fix things for me and get me back to normal.

Wow. I am no expert but isn't it negligence that they didn't check you for a leak before you left?

Sorry to hear about your complication. Have you considered a transplant? I have been doing some research about them.. as they are not common but they are available for some cases.

Sir, thank you. You have echoed all the feelings I am having. The depression is big. I have been suicidal at times. I just feel like it won't ever end. I am on percosets and fentynal patches. The third day in the patch is a nightmare as it is the least effective day before I change them. I have dealt with the junkie accusations as well. Both from nurses and pharmacists. I tried not taking pain meds for a bit but I can't function when I do that. It has been exactly as you describe only a shorter time frame. I pray I don't go as long as you have. I don't know that I could make it. Thanks for the info on stent pain. I was worried it was just me. Please keep me posted on your progress.

I am so sorry for what you are going through I just wanted to add although I am still pre-op I am on fentanyl patches for lupus and severe arthritis and a chronic pain issue and due to the way my body works my patches wear out somewhere between day 2-3 so my pain management dr changed my script to change my patches every 48 hours instead of every 3 days I also know other people who have had this done maybe u can mention this issue to your doctor and see if they can adjust when you change your patches so you do not deal with the pain/withdrawals on day 3

Thanks for the info but I ended up having a total gastrectomy and am recovering well. I no longer need the patches. I experience quite a bit of pain from stomach cramping but patches don't help that. I am told the cramping will go away in time.