Going to do a quick update and sort of list out things that have changed since I last updated and/or am too lazy to scroll through to find the other updates Oct: Ileostomy (complete), January, February, April I was septic with a mixture of line and blood infections (one from a portacath placement of a contaminated port, a UTI and pneumonia because “I’m special…” or that’s what my doctors say). March I was inpatient for another issue. February and May I had port replacement surgeries. April I spent the month trying to heal the open wound the contaminated port left me with, because it was too risky to close it all the way. And why is it that I always get questioned (no really, someone asked this – “did you recently drink something warm or scratch at your incision?” at the ER when I came in from that surgery in which the contaminated port was placed… *face palm* It wasn’t even accessed yet – that’s how old that port was…) about ridiculously high temperatures (no higher than those our doctors tell us to go in for, when we have central lines), tachycardia and dehydration (and hello pain?). I made it through most of the summer without an admission, minus weekly iron infusions that we now have figured aren’t working, not because there is a lack of iron but a lack of blood product from my bones. Then there was August. Just shy of fall… Bacteria from my large intestine decided to hitch a ride into my blood stream causing another case of sepsis with this one being just that much worse than the previous. Every time I make it to the hospital via ambulance from my ER, my hospitalist (who I have a relationship with now since that whole near death thing of ’11) always comments, “you know, if you didn’t come in at the time you did, you wouldn’t be here…” Nooot something you tell a sick person when they are still trying to get OUT of the hospital. Save those gems for story time later.





It was during that admission I had my gastric neurostimulator removed. I questioned myself about whether or not to let the public know about that last part. I am still a major supporter of the device and think that above all else, it is by far one of the best things to try anyway. But after a few years with mine, it had to be replaced once (the battery – very superficial, never overnight admit) and then I lost so much weight from one of the previous septic attacks, I was struggling to hold what weight I still had, making the pacer stick out like a sore thumb. While still septic, I left them no choice but to remove the battery so as to not give my body another source of infection. They would not be able to go in and get the leads until I was well enough. Well, I apparently was “well enough” on the 2nd of October. It is during that operation where they removed the leads (the actual difficult part of placement/removal/replacement of that neurostimulator system) by of course opening my abdomen and then they also did a pyloroplasty. That just means they went into my pylorus and made that hole bigger in hopes that things wouldn’t get so stuck in my stomach and drain a little better via gravity. It was already shown on an EGD earlier this year that I now have 0 motility. That’s 0, 0% or complete lack of stomach motility. So, my GI says, no more need to test that any further. Guess that’s a good thing about it! One less test to worry about!





In any case, I’m home now. Was discharged (too early imo) Tuesday and while I continue to battle pain (abdominal surgeries are the worst because there really isn’t anything you CAN do without somehow involving the muscles in your abdomen. The same muscles they either pulled apart, sliced through or expanded make sitting up, laying down, moving, breathing, oh my gosh hiccuping!, or otherwise doing ANYTHING without an enormous amount of pain. No problem. Even with all of our fantastic malnutrition issues, we still manage to heal, even if it is over 2x longer than anyone else.

New things for me – nothing much but working on trying to update some pages (and also create them, don’t hate me for being behind!) and work on and finish the new video. It isn’t like the others. It isn’t really meant for awareness. I think I nailed that one pretty good in like v5 or something. This one is meant to be to those who do know me to some extent in the present or for some period or chunk of my life. I made it to show all of me, my life, the things they don’t see when they see me in the hospital, an office visit or even my friends who don’t know everything. Needless to say, it is quite an ambitious endeavor but I will kick it around until it is done or I am bored.

Thank you for all your prayers, words of encouragement and messages even when sometimes, I might not tell you something is wrong. I read them all, even if I don’t always respond. The situation doesn’t always allow me to.


I just got back from my post-op/consultation appointment with the surgeon who did my emergency exploratory laparatomy. She is wonderful. Didn’t get to talk to her much when I was in the hospital but she is just about the nicest surgeon I’ve ever met! I added her to the list of doctors, if anyone is looking for a caring, warm and sincere general surgeon, Dr. Lily Chang.

I found out my surgery lasted 2 hours. I was told that it is rare to survive the type of surgery I had. Perforation of the bowel is pretty serious along with the peritonitis I developed in the few moments between procedures. They were extremely relieved and happy with my recovery so far and how quickly I turned around. I’m not completely free of complications but, she said the bulk of my recovery is over.

I questioned her about switching out tubes for new tubes or buttons. She told me that a tube switch would be ok to do in the next few weeks as long as it is to the same size or a size smaller, tube. It’d be done endoscopically like my last one, by the same GI surgeon. I asked if that would push back the recovery time needed for a button placement and she said it would not. So the following month I can get my button. It was all very good news. I was afraid I’d have to keep this ugly, stupid, useless tube for the rest of my tube feeding time. Not so!

I’m going in to talk to my GI about what my surgeon said, and to see if I could possibly schedule the procedure for a tube switch for next month. Just so I have something to work towards and so I don’t end up doing it last minute. Hopefully it all goes as well there as it did with my surgeon.