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Posted 6/26/2013 6:47 AM (GMT -6)
cry I guess it's just one of those days. You all know I'm generally pretty positive, and my docs have all said my great attitude and outlook really make a difference. But this second surgery has kicked my butt, and after 2 re-admissions, I'm feeling it. And I came home with a PICC this time, had nurses here all day yesterday and will be chained o my IV fluids for 6 hours a day until my reversal surgery in early August. That kind of hit me hard. I've been out of work since Feb. 26, and I'm feeling a bit isolated now. I know the end will be worth it, and I will get there and be a million times better off than when I was flaring and having to wear Depends to survive my Metro ride to work. Oh, and I had a bad leak last night while I was on fluids, and my supplies were all on another floor and nobody was home - had to sit on the toilet for 45 minutes until the IV was done so I could disconnect and go upstairs to clean up - guess I need to be better prepared with supplies on the main floor of my house!

OK, thanks for reading my vent ... will try to get my positive outlook back, but I need to readjust my mindset and accept how sick I still am sad
Posted 6/26/2013 7:11 AM (GMT -6)
I hope your day starts to get better for you real soon....try and do something you enjoy in the house if you get some time to yourself...a girlie thing....do your nails, put on some makeup, something that will give you a "lift". Sorry you are having a rough time of it and truly hope things get better real soon for you. {{{Hugs}}}
Posted 6/26/2013 7:56 AM (GMT -6)
I can comiserate PSUDOC. So sorry about the PICC line until August :( Even though my issues are lesser, I have been steuggling with a 2 steps foreward 1 back myself- just had three plastic surgeries to fix and then close a previously opened up main incission from my colectomy surgery and this tacks in yet another 6 weeks of 10 lb lifting restriction - 6 weeks after my original surgery; it is driving me crazy. On top of that, the distance between the newly closed incission and my stoma is so minuscule that I have to replace my whole wafer every time I change the dressing in my incission, which now appears to be discharging a bit just after I got a week and a half of wound vac treatment. I am so tired and exhausted. Like you say, we have to keep our eyes on the prize- easier said than done. Wishing you well!

Post Edited (Probiotic) : 6/26/2013 8:00:17 AM (GMT-6)

Posted 6/26/2013 8:37 AM (GMT -6)
So sorry to hear you're having a bad day and August does seem very far away but it'll be here and gone before you know it!

I have similar feelings being 4 weeks out of surgery (Step 1 of potentially 3 if I decide J-Pouch is the way to go). It still takes me a long time to empty and clean my bag (a full episode of Modern Family w/o commercials) and it's so exhausting to perform a bag change with "Gurganus" being aware of when he's free and he really likes to be messy. I still have pain and can't quite stand up straight and get fatigued so easily; I was recovering so fast after my surgery that I suppose I expected to continue my recovery exponentially however most days it feels like I've plateaued. This phenomenon has been explained to me by a friend as "the new normal".

It is difficult to remember how bad things were and how far we've come but it is uplifting to know that better days are ahead.

-R
Posted 6/26/2013 10:57 AM (GMT -6)
Hi Sorry to hear your having a bad day You can feel quite isolated and also have to much thinking time when your stuck at home on a feed throughout the day Can you not ask your Nures if you can have your IV's run through the night at least then you are freed up through the day. I hated being on TPN through the day felt so restricted but, saying that I was given a rucksack to put the feed & and pump in so, was able to walk around the house also would take myself out for a little drive to kill time. August will soon be here we're in to July next Monday! hang in there there are better days to come xx
Posted 6/26/2013 2:03 PM (GMT -6)
you're def having a rough time and i feel bad for you. the isolation issue is very hard and naturally in a situation like that i know August seems like forever. but pls hang in there and do stay possitive, cuz better days are to come and one day you'll look at all this as a distant memory. many healing hugs your way!
Posted 6/26/2013 3:05 PM (GMT -6)
I hope you feel better and sending positive thoughts your way that August comes as soon as possible! Your experience may vary but I have a TPN line that I infuse overnight. One of the unfortunate side effects is I pee like a racehorse every hour which interrupts sleep quite a bit. Just something to consider if you switch over to nights.
Posted 6/26/2013 3:09 PM (GMT -6)
Thanks all ... unfortunately, my IV is not on a pump, it's old school gravity ;) So, that means no overnight infusions since I have to watch for it to be done. I'll get used to it. Going to the beach with my family after the 4th, and that will be a welcome distraction - though I suspect I will spend more time on the porch than at the beach!
Posted 6/26/2013 3:17 PM (GMT -6)
yay 4th of July! thats really soon and should bring your spirit up :) will help you see things in a better prospetive i hope.
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