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kelseyx007 
4:17pm
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UPDATED GOALS
Lose my prednisone weight
Progress 100%
Encouragements: 1
Add your support
surgery in 20 days
Progress 100%
Encouragements: 2
Add your supportHi Everyone! Thank you all so much for all the emails and well wishes.
Overall my first surgery went well. The surgeon was able to do the entire thing through ONE laproscopic incision where my stoma is placed. Furthermore, despite having concerns that this may become a 3 or 4 step process, he was able to form the J-Pouch, remove the colon and the rectum and create the loop ileostomy in the first procedure- meaning I will only need one more surgery and that will be the take down of the loop ileostomy. I'm thrilled.
Things went really well the first day but then the second day nothing was draining from the ostomy. I started vomiting so they had to start an NG tube, but even with that there was nothing draining. They catheterized my small intestine and that seemed to help.
I was released from the hospital not feeling well, but assuming that it was just my body after surgery.
Three days later I had to be readmitted when I started violently throwing up and couldn't stop. Long story short, I sat in the hospital over a weekend while the Fellow told me to chew better !?. My surgeon is WONDERFUL but we couldn't manage to reach him since it was the weekend which was very frustrating and the fellow was rather useless and fell into "that" category of doctor- I feel so lucky that my surgeon is NOT that way and has been amazing about fitting me in and seeing me and giving me the care that I need. Finally on Monday we saw him and he sent me for a CT scan saying he thought I had either a loop of small intestine kinked or maybe another partial blockage. The CT scan showed neither (good) but did show a hematoma. Not serious, just very painful and the placement of mine happens to be behind the stoma so that any gas pressure or food runs against it and causes immense amounts of pain. The only thing they can do is tell you to wait it out and give you pain medication. So i'm stocked up on morphine.
The "good" news is that they have moved my "take-down" of the ileostomy up to within the next few weeks since the ileostomy has given me so many problems (they taught me how to catheterize myself and I will keep the cath in until the next surgery). I'm thrilled because even though I thought my attitude about the bag would be rather accepting since it is temporary, it has been a seperate battle to figure that out.
Only two bags I've had have not leaked and at one point I went through 3 in one day which completely irritated my skin. I'm currently in a three piece system with a belt and knock on wood it seems to be working. I do not know how people manage to live with these permanently. I am paranoid every minute that the bag is leaking, no doubt from my bad experiences, but I'm scared to sleep, move, sit up. I'm hoping that diminishes with time and that I will gain some confidence from my new bagging system. I really did not think I would struggle with the mental component this much.
Even after all this, the end is on the horizon. UC is gone. Things will keep getting better.
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Past Entries
| September 2009 |
Tuesday, 9/29
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Monday, 9/28
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Sunday, 9/20
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Thursday, 9/17
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August 2009 |
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Tuesday, 8/25
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Sunday, 8/16
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Thursday, 8/13
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Wednesday, 8/12
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July 2009 |
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Wednesday, 7/15
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Wednesday, 7/01
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June 2009 |
Thursday, 6/04
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Tuesday, 6/02
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May 2009 |
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Sunday, 5/31
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Sunday, 5/31
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Friday, 5/29
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Wednesday, 5/27
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Tuesday, 5/26
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Monday, 5/25
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Friday, 5/22
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Thursday, 5/21
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Wednesday, 5/20
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Goal Updated
oh yes- and the best news is I ate french fries and a milkshake!!!!!!!!!!!
kelseyx007
Hi Kelsey -
I'm so glad to read about how you are doing... e-mail me separately if you want any other advice or tips on what I've learned from my hubby's experience with the bag. It was really frustrating in the beginning, because he had a ton of leaks (yes, I think even 3 in one day) but his worst leaks were IN the hospital. I think we were both lucky to have some great ostomy-care nurses at the hospital who taught me carefully how to deal with the bag.
Hopefully your current 3 piece system will work for you. Once you get the system that "works" for you -- I know you'll be fine.
I hope that soon you're past the point of worrying over the possibility of leaking so that you can sleep and get the rest you need.
yay - i totally can understand how great those french fries & the milkshake must have been!
-jen
myhubbyhasUC
congratulations hun I'm glad the surgery was successful fingers crossed the recovery is smooth and not toooooo painful! :) keep up with your positive attitude and things will continue going well for you :) Enjoy the (normal) food!!
luvnitlykdiz
the mental side is much much harder when you're still recovering from the anaesthetic, dosed up on morphine and in pain. As these things get better, so will your head!!!
suey2y
Hi, thanks for sharing your update. You are one tough chick. I've always admired your spirit.
French fries... the nectar of the gods. Simple pleasures, right?
Wishing you continued healing.
rmb
In my prayers.
Big Hug Barbara
bjengle
Takedown in a few weeks?? That's not fair. I had to live with the loop illiostomy for 9 weeks! :-)
I hope you continue to heal.
MichDave
Wow, it def sounds like you have had your hands full of a long battle, even after the surgery! I am glad you are seeing the light at the end of this tunnel. I hope everything gets better each day! YAY for being able to eat french fries and milkshake!! Hoping you stay healthy, and praying for you! Take care!! You are one strong woman to overcome everything you have!!!!
UCKelsey
Hi! Thanks so much for sharing! I am having my colectomy with JPouch (1st part) next Tues Nov 3 - Nervous (mostly about having to be in the hospital for so long - I have a 4 year old and will miss him SO much!) but like you said, so excited to get on with my life without UC controlling it. Putting all my efforts towards a positive attitude & facing this thing head on with a can do attitude - after all, if I've managed to live with UC & all it's frustrations for 5 years, I'm sure I can get thru the surgeries & ileostomy! Thanks again for sharing & enjoy the food!!!
gina22