tpn anniversary..

Wow 17 years. Sorry to hear about the infection. I hope you still have a Merry Christmas. Ive been dealing with a lot of issues myself. I hope my new gi i see in jan can sort things out. This crohns crap just sucks doesnt it? Well i wish you the best and a speedy recovery.

Randy! This does not seem to be your time of year! I'm sorry you have to deal with the blood infection, my mother had one last spring and it was wretched.I hope you get it knocked out fast! 16 stretches in a year, wow!
I hope you have a decent Christmas and that the New Year treats you well. I'm hoping for Christmas I get a new diagnosis to explain why I feel like a rusted tin man pretty much every day, though I can't complain too much, rusted is better than some options.
Hang in there!

lab, yeah kins sucky . I have had sepsis 4 times 3 from bacterial blood infections and 1 from fungus in a kidney . died the first time around which started this whole TPN saga. gangrene, die-off of guts etc.. the second was about the same, blown out sutures, more gangrene and die off. the 3rd was bactereimia from a bad central line change by 2 loser drs in interventional radiology.. was fine when I went in for the change and 2 days later was near death. the last one 4 years ago to the week, was a fungal infection in my left kidney along with a huge stone that blocked the ureter. so kidneys quit, lungs shut down etc.. well that happened all 4 times, standard for sepsis. so this time maybe it was caught before it gets to bad.. at least with my IV experience, I get to do the vanco at home. will have more blood cultures next Tuesday and go from there...

Randy, I'm really sorry to hear about your infection. You may have a Guiness world record in the making with your TPN - if you don't already hold it, that is. I didn't know you've been doing it for that many years. Just wow. I've only done TPN for nine days after surgery, which is like nothing compared to you. You are one tough guy.

I'll be thinking of you. God bless.

I had no idea, Randy.

Randy,

You amaze and inspire me.

Do you hook yourself up to the machine or does someone come in and do it for you? How does the whole TPN thing work? Can you taste it? (I have a port and I can taste it when they flush and give me meds...even the remicade..)
Clo

yeah I can taste the saline sometimes.. a slower flush can help. as in do it slowly. also preservative free saline is much better. less chemicals . also clo, I have been doing my own stuff since about 3 months after I started as soon as I was physically able. I have been programing my own pumps since the near beginning also. we had nurses the first few months, they taught my wife how to do everything very well. she makes my tpn mostly but I do it when she's gone etc.. we also mix my own Gattex shots every night. involves dry vials , adding sterile water, with one needle, then mixing, and withdrawing with a different needle, self injecting, hurts btw, etc.. the TPN thing is basically, a infusion pharmacy makes the sterile solution and adds micro nutrients, sugars, proteins etc... it is shipped to us and then each time I infuse a bag, we get it out of the fridge, and we add the multivitamins to the mix and mix it well. ya let it warm up if ya want to for a few hours and then hook up and either sleep or some people do it during the day and carry it around in a backpack. it takes a lot of logistics and supplies to do this at home, such as ordering all the supplies on time so you do not run out, you need needles, saline flushes, heparin flushes if you use them, tubing, pumps, alcohol wipes, a clean prep area, and many more things but after a while it becomes part of your life and its "normal"

yea. did another stretch as the 2nd one in December was cancelled due to blood infection.. gonna try and go down to once a month and see how it goes.. so my next one is mid feb.

clo. no doing fine. the antibiotics took care of the infection.. btw I had a jujenostomy for a few months.. worst thing ever for me. I would rather have operations than an ostomy again. mine was put in a crease on my abdomen in an emergency. and it leaked 24/7 unless I did not move from my back.. it would fill the bag to bursting size in just a minute or so depending on what I ate or drank. my skin around my stoma was being digested by the leakage of stomach acid and enzymes.. I wont live like that again. id do the bottle of pills thing first.. so if your handling it ok, YOU are the HERO

yep from the jujenum. end stoma... there was about 9 inches from the stomach to the ostomy.. so yeah, very high output. it would just dump.

Randy,

My stoma repels yet fascinates me. I never know what new adventure we are going to have.

Know that your stoma is/was MUCH more difficult to deal with. I agree with NCOT completely!!! Mine is a walk in the park...well after the seperation healed...but now he is pretty well behaved.

I named him Fred for when he is good and call him Freddie when he is a nightmare.

You, my friend. you amaze me. Reading your posts and everything you go thru...you inspire me to deal with Crohns in a positive way.

I honestly don't know what I would do if I didn't have all of you to talk to.

Clo

Randy,

lol.... I love your wit!!

I too sometimes call it $#*& head.

You made me belly laugh when I really needed it. Thank you!!

Clo