one week post-op!

[cynnycal]

Hey all!
so i finally managed to get to a computer. i swear i'm in withdrawal from lack of online access for so long.
anywho, i had my surgery last tuesday with Dr. Fazio (cool guy, gotta love the australian accent. which took me a good day to figure out)
i had my colon, rectum, anus, sphincter, you name it, i had it removed.
i had two desmoids on my abdomen and groin area removed, and i had a kock pouch formed.
as Dr. Fazio explained it to me, even though the k pouch surgery is a more complex surgery (as far as, they could never do it laproscopically, etc) he actually prefers to do it as a one step for people like me, with FAP, b/c FAP'ers have the tendency to get these little beasts known as desmoid tumors and desmoids, although they don't know exactly why or really much about them, do seem to be sorta 'triggered' by surgery. as in the more surgery you have they more chance you'll get them (i already happened to have two). they're benign, usually always, and they can be removed, but it's kinda like removing them just spurs them to grow back again, faster. OR they can grow in places that are too difficult to remove by surgery and then you just need chemo to keep em small so they don't obstruct things.
little devils they are.
so anyway, that's why i ended up having this all done at once. (which was fiiiiiine by me)

my surgery lasted 7 hours! eek. and i think most the complications i've had post-op have just been with my parts all waking back up again.
like for a moment they thought i had an ileus (sp?) b/c i was vomiting but i wasn't eating anything yet, and i had pain in my sides.
it's not been fun, but i'm a fighter, so i'm taken it all and growled right back at it. heheheh.
i haven't slept one good night since i got here. i hate hospitals. most my problems happen at night.
they took the foley out on saturday. and ended up putting it right back in later that night b/c i wasn't peeing. so they left it in til yesterday (tuesday) morning. they took it out and i did pee. but then i didn't stop. i was 'piddling' literally about 2 ounces EVERY 10 min. aaaaaaaallllll night. i gave up my dignity at some point and said please put a bedpan by my bedside, and i just would roll outta bed, squat, do my thing, tissue, and climb back in bed. i mean, having an IV you have to unplug every time you need to go to the bathroom, and only to find out when you get to the bathroom that it's an ounce. ugh.
i didn't sleep, needless to say. and was at my wits end.
finally slowed up as it got to be like 6am
i'm adjusting really well to my little stoma. and yes, she's quite cute. it's a different looking stoma than an ileostomy. since that's what i'd gotten myself acustom to looking at. this is flush to the skin, and small (half an inch diameter maybe?)
right now there is a catheter sewn in, and attached to a night bag, i'll keep that in for three weeks. i have to irrigate or flush it every 3 hours or so. the nurses were doing it at first, but now i am b/c surprisingly enough to me, even though i'm on the colorectal floor of cleveland clinic, some of these nurses don't really know what they're doing.
of course, the ET nurses here are god. i was having really bad gas pains one night, the nurse gave me simethicone, i rolled around, had her irrigate it, walked. nothing helped. stoma nurse came in next morning, worked her magic, and aaahhhhh....felt much better.
i wanna take Brenda the ET home with me. she's a miracle worker.
i was taken off the pain pump this morning, as well as the iv. (free at last!) and finally got a chance to eat soft foods.
my appetite is nonexistant. i don't wanna eat anything, and when i do, nothing tastes particularly good.
i've forced down a few spoonfuls of jello, mashed potatoes, a third of a pancake. and i just grimace and wash it down with water.
everything is either too sugary or too salty.
i know i have to eat, but i tell ya, i just have no desire.
we shall see though.
so there is rumor of letting me out tomorrow. i'll have to stay in the cleveland area for a few more days, just in case anything happens. but i'll probably be able to leave sunday sometime.
i have to wear a legbag, and night bag for the next 2-3 weeks, then i come back for my post-op visit on Oct. 19th and i'll have to show em i can intubate for myself.
however i do need to do 6 more rounds of chemo and since chemo can be hard on the GI system, i might keep the catheter sewn in for a few weeks longer than normal. fazio's suggestion.
he said the tumor was removed easily enough, and three lymph nodes around where perhaps involved, but we're waiting on teh pathology. he seemed very optimistic though.
and i don't have much of a problem with that.
anywho, i have to thank all of you guys sssooooooo much. i'm so glad i was so well prepared for all this.
my mom is stunned. and proud. at how well i'm handling irrigating and all that. and the nurses and doc's are all pleased and think i won't have a problem at all. said i'm handling it like an 'old pro' already.
so there's my update for the week. whew. i type alot.
anywho, catch ya guys later
b

[alihamilton]

Hi, what a wonderful attitude you have! I am sure that positive spirit is helping you in this journey to wellness! It sounds as if it all went pretty well and that you are dealing well with the challenges with which you are faced. I hope you continue to see improvement and can go home soon. Keep us posted!

[Lee]

cynn,

So good to hear from you. I have been thinking about you this past month and wondering about your surgery.

Sound like you came thru it like a real trooper. I'm sure your family is very proud of you. I hated the hospital also. I was suppose to be released on a Saturday morning, my surgeon released me Friday night I think because the nursing staff told her I was walking around the hospital parking lot. I think they thought I might just walk home.

Regarding pee, give your self time. When they took the cat. out of me, I could not feel things down there. The first time I peed afterwards it was more of a conscious thought. My brain saying O.K. go pee now and I did, when I stoped flowing, I assume I was finished. I couldn't feel my bladder, or any movement. For several months, I would go to the bathroom whether I felt the urge or not. Today it is mostly recovered, I feel I have control down there now.

Please remember to walk, walk, walk. It really does help in the healing process. When I got home, I would walk around my cul de sac several times a day.

Has the doctor mentioned anything about you resuming your dance activity?

You're doing great, how do you like your kock pouch?

Lee

[Maggie]

Hi!
I am glad to hear you made it to see Dr. Fazio. You are in excellent hands. I honestly can't say enough good about him! And yeah, it took me a day or so to figure out where he was from too! It was all the drugs! Anyway, it's good to hear that though you're still battling and becoming comfortable with everything you need to do! You should have let us Clevelanders know you were in town sooner, even though I don't know you at all, I surely would have dropped in to wish you well!
Maggie

[cynnycal]

yea, i didn't think about being able to see anyone in cleveland. figured i'd be just out the whole time.
we're at the hope lodge now, was discharged yesterday.
man i love this place. whenever i'm at the place in my life that i can donate money...i'm donating here. the garden is great, and everyone is so nice. and the beds! oh the beds!
my back has been KILLING me since recovery. still is actually. but the beds here help a bit.
haven't had one full nights sleep yet. and not that i would, i have to empty this pouch every three hours anyway.
i'm liking the kock pouch. i mean, still getting used to it. just started eating pretty much. so now i'm just learning how stuff passes through me i guess. but it's not all that bad.

anywho, we're here til sunday i think. Fazio just wanted us to stay around just in case. we come back on oct. 19th for a post-op visit.

alright, naptime, over n out.