UC Free - Are you up for questions?

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ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/10/2009 11:59 AM (GMT -6)   
Hi UC Free
 
I have been following your progress on twitter - its great to hear what its like for a patient rather than what the doctors and nurses will tell you its like.
 
Hope you are feeling OK, from reading your posts at the moment you sound tired and have some BB. 
 
I was wondering if you are up for answering some questions?
 
Stay strong,
Elli.
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions.
Colon Removed 18 March 09.
Ileostomy
 


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/10/2009 7:44 PM (GMT -6)   
Anytime !!!!
Shoot away and if you prefer you can direct message me on twitter ...

otherwise post here and I'm up for answering as much as I can.
--
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


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/11/2009 12:58 PM (GMT -6)   
Thanks for being so open.  Just so you know I am thinking of going for J-pouch hence my interest.  Have a meeting with surgeon in Sept - have to wait for all the steriods to clear my system.
 
When you first got connected did you have any control?  I know night time while sleeping is different but in the day time can you hold on for a few minutes to get to the bathroom?
 
After a week how many BM are you having?
 
Can you see improvement after a week?  Not a long time i know!
 
What sort of foods are you on now?
 
Are you taking loperimide to slow you down?
 
Did you have a 3 step or 2 step?  If you had a 3 step when they did a loop ileostomy did your output speed up and go a lot more watery?
 
My stoma nurse put me in touch with a guy my age who had UC and now has a J-pouch.  He had his done at Christmas.  He is now fully recovered, can hold himself for an hour and half and is on about 4-6 BM a day (he also sleeps through the night).  He was so up beat and pleased he did it.  Stick with it all and stay strong.
 
Thanks for your time - I am sure you have an idea of all the thoughts/worries going through my head at the moment!
 
Elli.
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions.
Colon Removed 18 March 09.
Ileostomy
 


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/11/2009 9:06 PM (GMT -6)   
All of your concerns were the same as mine when I first when for this. However my stoma nurse made it easy for me .... just do it!

I had the 2 step surgery. I had my 1st on April 7th 2009 and the takedown on June 3rd 2009. When I had my first surgery my output was VERY liquidy and I actually got dehydrated and ended up in the hospital. I started taking immodium and metamucil at that time and things got a LOT better .. I actually started getting used to the wafer and bag .

Then the unthinkable .. got a fever ... fluid collection around my Pouch internally ... Cipro and Flagyl for 2 weeks. Cleared it right up .. no need for a drain or anything ... wasn't THAT much fluid.

Then came the takedown ...(this is the part you are interested in).

They gave me a stress dose of steroids during the takedown so I am on a tapering dose right now (20mg starting and 5 mg reduction every week). I should be done with the pred in about 4 weeks.

When I woke up from the takedown I felt like someone stabbed me with a knife and turned it ... which I think they did :-) Morphine helps with that. This surgery however is NOTHING compared to the first one. I was in a LOT OF pain during the first one ... this one seemed like a piece of cake compared to that one.

The first day I got connected I remember only having a few droplets of blood at a time and only went maybe twice. I had control and made it to the bathroom even after unplugging my IV and all. That night I slept like a baby and when I woke up I realized I had leaks on the chuck. This could have been cuz I took a sleeping pill and was VERY relaxed :-)

That day I went to the bathroom only a couple of times, with only a little coming out at a time. Had total control, made it to the bathroom each time and had prior notice. (Everyone's body is different). I was walking the floor a LOT. I walked at 2 in the morning, at 5 and maybe every 2 hours during the day. The only time I sit put long enough was when I was watching the NBA finals that night :-)

The next day the docs wanted to discharge me right away .. but I wanted to wait until that evening to see if all was ok. Just a bit paranoid cuz I had ended up in the hospital too many times. They came back that evening and I was ready to go home!!!

I've been eating almost everything. I chew really well. I even eat a few raw veggies here and there (broccoli and all). There was one night where I suffered a lot from gas but that was because of a dish I ate for lunch the prior day for lunch (too many onions).

A week later ... I have control over my BM's. I wake up at night to go to the bathroom maybe 2 - 3 times. Have a lot of gas. My butt burns a lot after 6 pm until the next morning, I seem to go most then. During the day I am just fine, but it could be because of the banana I have religiously every morning. I tried a banana tonight so let's see how that works out ... you'll know on twitter :-)

The surgeon told me to stay away from bulking products like metamucil for about 2 weeks as the incisions internally need to heal and could still be a bit tender. I'm waiting for that so I can bulk things up baby!!! Also, I've stayed away from the immodium as long as I can. If I can't slow things down by Saturday I'll take an immodium at night so I can sleep some more .. but during the day I'm not that bad.

I'm using a zinc oxide and calmoseptine cream to help with butt burn ... oh they are absolutely necessary!!!
Here's the gross part ... so you know what to expect.

I have clumps come out of me .. so it's not diarrhea. However, there are times where it feels like there is a piece stuck right at the tip of your anus. Its a horrible feeling but it doesn't leak or come out .. you have total control. Today I was able to pass gas without having to worry about if I was going to leak.

So all in all after a week I am very happy. We all wish it was like a light switch, FIX ME! The body takes time to recover ... takes time to get used to the new plumbing. Believe in it and it will happen!

Sounds like we're about the same age ... I'm 31. 4 - 6 BM's are totally manageable. I would be happy with that ... I'm happy with where I am now.

Honestly, everyone that's seen me can't believe I look this way. I have color in my face ... my dark circles are starting to fade away from being sick and on meds all the time. I am really really thrilled that I'll be able to enjoy my upcoming baby's birth.

Everything has complications, right now, I'm just happy that I have a second chance. God is great and life is good.

I hope I helped out ... if there is anything you need feel free to ask away. I wish the chat feature on this site worked. We could all setup a time to meet.

Wooooohoooooooooo !!!!!!!!!!!!!!!!!!!
--
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


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 6/13/2009 6:01 AM (GMT -6)   
Hi,
 
you sound like you are doing great.  Now Thanks for the answers.  I know everyone is different but the more I have researched and spoken to people the more i am hearing success stories.  MY GI told me that only a third of jpouchs worked.  When i saw my surgeon he said that simply was not true.  He said 90% of his patients are happy with their outcome. 
 
I will be having mine done in 3 steps.  I have step one done already (march this year).  Step two will hopefully be around sept.  I think that will be quite a big operation from what i understand.
 
I know its silly but one worry i had already is how i would make it back from the hosital after takedown!  its about a 40 min car ride - i remember coming home from hospital after a real bad UC flare and hated being in the car away from a bathroom.  But thats quite a while away so will worry about that when the time comes.
 
One question - you mention a chuck - what is that?!
 
Cheers,
Elli.
 
 

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/13/2009 3:22 PM (GMT -6)   
Oh don't worry about that ride ... you should be able to hold it and have no discomfort. This is why you're gone thru this whole ordeal in the first place no? :-)

Chucks are leak proof "mats" you can put on your bed incase you have accidents. This prevents the mattress and sheets from getting soiled. Easy to wash and reuse. Well .. they have disposable ones too ...

keep us posted!
--
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

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