Loading...
Hi. I know this is an old post, my reply 7/2017 hopefully helps. I have gastroparesis solid and liquid for over 20 years and am 47. My liver was fatty, now hardening with a sarcoidosis and granulomas from a misdiagnosed gall bladder (GB) and Sphincter of Oddi (SOD) dysfunction, told it was an eating disorder until I almost died from necrosis of my GB that had affected my biliary tree negatively. Underwent major surgery at Mayo after 3 years of being told I am crazy at UCLA. That was 10 years ago and after hundreds of thousands of dollars I was told to expect a colostomy at 45. I went to a D.O. Who believed in infusions and that is how I got on TPN at 43. I have just switched from TPN to a j-tube because it's reversible and if it works I save my colon. Surprisingly it helps some other issues but it's a STRUGGLE. I have had the same PICC for almost 4 years with no problem, even using in 2 surgeries. Cleanliness and routine are the key in most cases. I am about to have my PICC converted to a port, given I have a sodium and other deficiencies that will always require IV access. All of this is VERY expensive and depending on your issues and your insurance you may not Have it suggested simply because it's not covered, but you can appeal coverage. I've won on 3 scrips and 2 providers. Your co-pays could kill you though so TPN is expensive, you can't be gone for more than a week because you need labs and bandage changes, if you can't handle liquids too then it's literally a 14lb weight you carry around or roll on a pole everywhere for 24 hours and after a year you can typically trickle down to 14 hours if you have not had complications. But you have to care for it every day, add gen to 15 minutes for showering and care of it a day Andy know that in most hospitals and doctor's offices they are either not equipped or refuse to access a port or PICC unless you fight and you must have all of your supplies with you ALWAYS. Your life changes forever and it's a bit of an adjustment! I have undergone a battery of tests at every major medical center and now also consult with Stanford. Alternative feedings all come with their own set of problems and I recommend you research feeding the gut, and the benefits of it, which is why I switched from TPN to a J-tube. Advocate for yourself and appeal everything, if you have Medicare also file a Medicare grievance. If you are losing weight and/or malnourished for many reasons as am I, then make your request short and sweet. Explain why you can't eat and what happens, I also documented and explained my attempts for 2 years to only do liquids. Stress the medical necessity of your need for alternative feeding, have tons of blood work, tests and provider notes to prove any deficiencies and all GI problems. In my case oddly enough I work with a surgeon, here in Las Vegas that has an interest in gastroparesis. She saved my colon and got my digestive system working all due to her belief in not needing to cut things out and to be very cautious. Do I love the J-Tube? No! It's horribly to mildly painful daily, but I am not even 3 months post op and I prefer to eat little to nothing and not drink so my system was almost completely paralyzed. A SITZ test is easy and will tell you that. I know stress to those with sphinterectomies on Oddi or elsewhere, avoid the rush to ever cut again because the scar tissue will destroy areas that are the size of a hair. Be creative, positive and open to trying all sorts of things, and when a doctor makes you feel less than competent, don't go back! Know that the less you put in your stomach the more your body will learn to work without it, so try to do anything you can. I recommend double doses of miralax a day by scrip, not retail so it's less money. Those of you on feeding tubes, I run mine no higher than 50 and start at 35ml/hr working my way up. I add 1/2 can filtered water to every 2 cans so I can run it higher. After carrying around 10-14 Lbs daily of TPN, 5-8lbs is far less with a feeding tube so that is also a plus. But if you can force yourself to tolate any of it, push for it before you ever agree to having your colon removed or another surgery on a sphincter or major esophageal alterations. Forcing your intestines to move, amazingly solves a lot of problems, so it's deciding which you can deal with. For me, TPN made my life much better, and I'm still learning with this tube. Your new normal is always attached to something and depending on the severity of your issues and the progression of your problems, just as I accept this is my every day, you may have to as well. I feel incredibly fortunate to have been able to fight for myself and to have made it this far, knowing others have it way worse. I understand as do many, the incredible and unimaginable pain I'm told is equivalent, if not worse, than childbirth. You are not alone in those horrible flares/spasm times. Try to think positive, meditate which is great for testing and pain, ice anything that hurts before it gets too bad. If you aren't taking zofran for nausea insist on it! Each time you make it through, take it as a challenge to learn more about your body and solve it, knowing you won't let anyone stop you. I love WW and everyone has a little of her in them, you know what's right in your life and the same goes for your body. Fight for yourself in the way that you would fight for someone that needed help! Hang in there and keep looking for the positive!
Loading...
Loading...