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ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/22/2009 6:16 PM (GMT -6)   
The first surgery was tough enough as well all know it. Flash forward 2 months and I'm on the table again for my takedown. All the nurses were so happy for me; "Oh it's a good day!! Oh it's a good surgery ..." I knew it was a good day and it was definitely something to rejoice.

Coming down to the end of my 2 months with my bag, I actually started getting the hang of it. It became part of me. If it was full, I would empty it. Although I knew it wasn't my long term solution. I wanted my takedown, and I wanted my JPouch to work darn it.

I knew adjusting with the JPouch would be tough, but gosh, now it's hitting me hard. Sleepless nights, tired all the time, butt burn, anal pain, leakage ... you name it, it will happen.

I'm not writing this to discourage anyone at all. This is by far the best possible thing I could have done for myself. I'm nearly off all y meds and feeling better in that sense.

Just, that it's tough. I wake up in the mornings, DRAINED. Like almost I have not slept at all the night before. I want to start back working, as soon as I think I can, I get my tired spells again.

I started taking VSL, I'm tapering 100mg of prednisone, metamucil and immodium as needed. Maybe I just need to start exercising a bit to see how that works out for me?

I slept ALL day today. Literally. Just woke up to use the bathroom that's it, or to force myself to eat and drink fluids.

bah. Just one of those days?
--
Diagnosed with Ulcerative Colitis - 1998
Failed, Azathioprene, Homeopathic, Ayurvedic, Remicade, Humira treatment
Steroid dependent - 2009

Temp ileostomy - April 7th 2009 (4 days)
Dehydration - April 24th 2009 (2 days)
Fluid around J Pouch and high fever - May 11th 2009 (4 days)
Takedown surgery - June 3rd 2009


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 6/22/2009 9:32 PM (GMT -6)   
Hi ucfree-kp.
I'm sorry you're having a rougher time than you anticipated. I worry about that too, when I have the j-pouch done.

So did they say all of your issues will get better with time?
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/23/2009 8:24 AM (GMT -6)   
Chassity,

yup, everything I have read and everyone I have talked to says this is all normal. Time will heal and time will make things get better. I see things getting better already but I'm very impatient!!!! I need instant gratification :-)

Anyhow, with that said, I'm a million times better today than I was yesterday. Woke up once to go to the bathroom at 5:30 am and that's it. Even that I could have probably slept thru and made it to the morning.

Don't let me scare you, this is the best decision I made for my life and for my family. No meds at all.

If you have any questions, don't hesitate to ask, I'm also on twitter (@ucfree), you're welcome to track my progress and also to ask as many questions as possible!!
--
Diagnosed with Ulcerative Colitis - 1998
Failed, Azathioprene, Homeopathic, Ayurvedic, Remicade, Humira treatment
Steroid dependent - 2009

Temp ileostomy - April 7th 2009 (4 days)
Dehydration - April 24th 2009 (2 days)
Fluid around J Pouch and high fever - May 11th 2009 (4 days)
Takedown surgery - June 3rd 2009

Follow my progress on twitter:
@ucfree
http://www.twitter.com/ucfree


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/23/2009 11:23 AM (GMT -6)   
Hi,
 
how many weeks post takedown are you - i am guessing about 3 by now?  has your bowls slowed down at all yet?  Are you reducing the number of trips to the toilet yet?  what are you averaging now?
 
I am still following you on twitter - did you have a curry the other day? 

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/24/2009 9:36 AM (GMT -6)   
I'm exactly 3 weeks post takedown now. My bowel movements have slowed down a LOT!!! Also, they are not as runny as they were initially. It's almost like having a "normal" BM.

I'm at about 6 - 8 trips to the toilet now ... that's with taking immodium at nights only. I started the immodium to help sleep at night, I was really really tired.

You HAVE to drink LOTS of fluids!!! It's very easy to get dehydrated. This is KEY.

I also started VSL #3 DS. I'm on 1 packet a day. I got a lot of gas the first couple of days, but it was nothing major. People complain about the gas pains and such but it just sounds really LOUD coming out ;-)
I think the VSL is also helping regulate things.

Overall ... I'm doing better, it's still a rollercoaster but a fun ride !!!
--
Diagnosed with Ulcerative Colitis - 1998
Failed, Azathioprene, Homeopathic, Ayurvedic, Remicade, Humira treatment
Steroid dependent - 2009

Temp ileostomy - April 7th 2009 (4 days)
Dehydration - April 24th 2009 (2 days)
Fluid around J Pouch and high fever - May 11th 2009 (4 days)
Takedown surgery - June 3rd 2009

Follow my progress on twitter:
@ucfree
http://www.twitter.com/ucfree


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 6/24/2009 1:00 PM (GMT -6)   
Wow. I worry about that too but I just try to keep telling myself that no matter what the jpouch is like (and currently the bag) it could never be as bad as the UC. I mean it had to be really bad for us to get to this surgery, right? When I wake up at night to empty I just sit and remember how many more times I had to get up in the night during a flare. And the pain!

And why do I have to wait 3 months for my take down? :( Even if I had to keep this annoying bag forever, it does not compare to the UC.

Hang in there. It will get better for both of us!
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Meds just stopped working so I took the problem out! No more colon and all kinds of excitement!


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/24/2009 3:34 PM (GMT -6)   
It sounds like you are doing really well.  The one thing i have found going through bad UC and the first of a 3 step surgery is to be patient.  Only 3 weeks out and it sounds like you are def well on the road to recovery.
 
I hope you can get the rest you need and carry on improving. 
 
I worry about how loud passing wind will be after takedown!! 

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/24/2009 3:49 PM (GMT -6)   
ahhhh who cares about how loud it is!!!!
I've learned not to care about these silly little social things.
Once I'm not bleeding and I'm not taking any meds, that's all that matters to me.
I'll fart all day long if I have to :-)
--
Diagnosed with Ulcerative Colitis - 1998
Failed, Azathioprene, Homeopathic, Ayurvedic, Remicade, Humira treatment
Steroid dependent - 2009

Temp ileostomy - April 7th 2009 (4 days)
Dehydration - April 24th 2009 (2 days)
Fluid around J Pouch and high fever - May 11th 2009 (4 days)
Takedown surgery - June 3rd 2009

Follow my progress on twitter:
@ucfree
http://www.twitter.com/ucfree

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