Some Guy

Hi @@NoMoreFatGuy, glad to hear you are recovering well from the gastrectomy! I just met with my medical team this morning to discuss my upcoming gastrectomy as my final, experimental treatment at the Mayo Clinic has been deemed a failure. The meeting today didn't go very well. There were lots of potential risks discussed due to my complicated history. Death was discussed. Not many positive things were said, unfortunately, and I left feeling overwhelmingly depressed. I'm due to go under the knife in three weeks and am hoping I have a smooth recovery. I must say, hearing that you have had the same thing done and are recovering nicely is great news, both for you and myself! It makes me a little more confident that something they do to me will actually work for a change! Hang in there and good luck with the rest of your recovery! Hopefully I'll be right behind you.

Hi @@Alkalinetrio262 -- fellow Trio fan here! Sorry to hear you've been having trouble! I've been dealing with a leak for almost two years now and can share some info on what happened and why I'm still dealing with it. First, after a couple years of hearing various doctor's opinions on the matter, I've realized every situation is different so how one heals or how long one takes to heal is dependent on so many other things. My initial surgeon was confident it would heal in X amount of time. My second surgeon thought it would take a different X amount of time. The bottom line is, it can take any amount of time. Getting it diagnosed early is key! My leak was misdiagnosed and enough time passed for a large amount of scar tissue to develop that has lead to the leak not being able to heal. Nutrition is also key. I feel ya on mental madness that comes with not being able to do as much as take a sip of Water. I was NPO and getting TPN via PICC line for six months. This actually backfired and left me severely nutritionally deficient and unable to heal. It also allowed even more scar tissue to develop that basically left me with no chance of it fixing itself without corrective surgery. When I did start drinking again I had to re-learn how to swallow. I literally had forgotten how to do it and was choking when I tried to drink. It sounds like they caught your leak early and you've been making good progress! I'd bet you'll be healed up rather soon. But don't dismiss the importance of Protein and Vitamins. Being a stubborn guy myself, I often thought I'd be fine with whatever amount of protein I got. But seeing what happens to a human body after not getting normal nutrition for half a year really made me realize how important that stuff is. So keep putting that protein in no matter how you have to do it! Good luck!

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.

Flu-like symptoms. It's also common for your left shoulder to hurt really bad if you have a leak. If it doesn't hurt it doesn't mean you aren't leaking. But If it does hurt, you definitely have a leak. The first year I dealt with my leak my shoulder didn't hurt. The second year, it hurt. So that symptom can go both ways. Bottom line: if you're leaking, you'll know about it eventually. It won't take long to manifest into something that needs urgent medical treatment.

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!