Goodbye colon, hello life!

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ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 4/12/2009 8:45 AM (GMT -6)   
Last Tuesday I had the first surgery to remove my disgusting colon and rectum and create the J-pouch. I've recovered very quickly and the docs and nurses are all surprised!!!
I was discharged yesterday and finally home sweet home :-)

I wont' lie to you, the pain is immense and getting used to this bag is quite a challenge. The pain meds do work, but there is still a lot of discomfort getting in and out of bed. I'm hoping to be pain free in a week and back to normal!

Couple of things ...

1. normal to have some leakage even though the anus is not "working" ?
2. I still feel like I have to go to the bathroom from down there but obviously there is nothing that can come out.
3. My bladder seems to be directly related to how much pain my stitches give me ... when I'm relieving myself, my stitches HURT !!!
4. The output in the bag gets hot hot hot !!!!!! Anyone know if it's ok to cover the bag or have any suggestions, tricks ?? :-)

Thanks to everyone for your support, it's been an exciting painful week!!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/12/2009 9:05 AM (GMT -6)   
uc-kp,
Congrats on doing so well recovering from your surgery. Life here we come!!!
In answer to some of your questions:
1. Normal to have leakage.... usually means that the area is still producing mucous and healthy.
2. Phantom feeling is also normal.
3. Yep, bladder is a muscle and you've had a lot done internally .. normal.
4. I use a bag that has a cover of sorts already on it. But others here place part of a towel or wash cloth between the bag and your skin to alleviate the heat/sweat. Whatever feels comfortable to you is fine.

Hang in there! Let us know how you are doing.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/12/2009 9:39 AM (GMT -6)   
UC-Kp
Congratulations! Everything you mentioned sounds normal. I have a lot of discharge but I still have rectum and part of sigmoid colon.

You must of had the surgery laparoscopically- so much better.

I am 4 weeks post op and finally feel a vast difference. You will get used to the bag -- trust me. I got the opaque bags and the bag doesn't get as hot because it is has a cover of sorts. Your output will get thicker as time progresses also- not so liquidy in another week or so.

How did you like Weiss and his team? I am seeing him next week for follow -up and hopefully he will schedule step 2 surgery.

Your spirits sound good---- again, i wish you the best and rest.....
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/12/2009 12:13 PM (GMT -6)   
Congratulations on getting through surgery and coming home so quickly. That is amazing! :-)

I agree with the others' answers, and I have a question. When it comes to the leakage from the rear, did the doctor recommend that you have that wound packed daily with saline-filled gauze? I had a home health nurse come every day and pack the wound, so it wouldn't get infected and could heal slowly from the inside out. After a week or so, I started packing it myself by bending over in front of a long mirror. If that area is packed, then the gauze will collect the drainage, and it won't be messy. Just thought I'd ask.

You do sound really good. Now, you're going to have to change your name to uc-free-kp! smilewinkgrin

Happy Easter!
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 4/12/2009 12:58 PM (GMT -6)   
Jackie,
Dr. Weiss' team is quite amazing. His fellows are remarkable and the nurses in the hospital are some of the best I've ever experienced. Obviously you'll have the 1 or 2 here and there that are questionable :-) I hope you get your second step scheduled soon, I have my post-op followup in 4 weeks at which point I guess he'll decide where we go from here. Until then I just need to manage this pain.

Cecilia,
The doctor didn't recommend anything really, and I just have some pads for my bed. I have not had much leakage so far and I really do not know what to expect :-/

The hardest part is having to ask for everything right now. I am so independent, it makes me feel really vulnerable. However, the power of family is amazing.

PS: Name change in effect! :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/12/2009 4:39 PM (GMT -6)   
YAY glad you are on the way to being healthy!
Everyone already answered your questions so i just wanted to throw that in, lol.

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 4/12/2009 4:52 PM (GMT -6)   
"The hardest part is having to ask for everything right now. I am so independent, it makes me feel really vulnerable."

That's me...but I had a kind of "come uppance" when I couldn't get my bag to seal well, and had numerous leaks. This was because of the shape, etc of my stoma. I was a wreck - a total wreck.......and had to learn to reach out to nurse and folks here. This board has been a lot of help to me.

You sound really good. Hope you continue to recover well!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/12/2009 4:54 PM (GMT -6)   
i'm so happy for you!! i hope you keep getting better. i haven't had surgery yet.. "goodbye colon, hello life.." can't wait to say that myself.. (o:
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/12/2009 7:56 PM (GMT -6)   
Congrats...you are doing great!!! Yes, the output can be warm, depending on the brand of pouch you are using, they have covers you can order and help with that...check out your catalog or log on to one of the medical sites.

Since you are having a jpouch, your rectum is still there and will produce mucous...don't be surprised if you get a good amount every once in a while. People are different to it is hard to say how much you'll have.

Do you have stitches or staples? That should get better when they are taken out...remember, you did just have a serious surgery and your body parts are finding their 'new home'! Once things settle down it won't be so bad to pee!

and, don't forget to take it easy! It can be hard to sit around, but your body will need it for a little while:)
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