9-year-old ileostomy, can't pee after surgery

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aragorn
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Date Joined Jan 2009
Total Posts : 31
   Posted 2/18/2011 9:03 PM (GMT -6)   
3rd day after surgery to remove his colon, and Charlie is doing much, much worse.  Started out fine, but never was able to pee.  Catheters in and out.  Stoma started to produce, but now bowels have shut down as well.  Urologist says that not being able to pee may be permanent.
 
He had aggressive ulcerative colitis, and the surgeon said the removed colon was just falling apart, but the rest of his digestive system looked perfect.  So, we had high hopes for surgery.
 
After so much hope, we are just devastated.  Feel lost and helpless.

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 2/18/2011 9:36 PM (GMT -6)   
So very sorry to read this....I honestly will pray for Charlie tonight and hope for a miracle for him and your family.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

J's Mom
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Date Joined Oct 2008
Total Posts : 109
   Posted 2/18/2011 10:03 PM (GMT -6)   
Prayers for Charlie. Hang in there.

Chevypower1930
Regular Member


Date Joined Sep 2009
Total Posts : 254
   Posted 2/18/2011 10:23 PM (GMT -6)   
Sending prayers your way, 21 year old J poucher here, I've been through the WAYYY low's and the high's. It's been a month since my J pouch surgery and it still just feels "different" when I pee, idk if it's permanent or what but definitely different then before

Yall we'll get through this
20 Year Old Male

Diagnosed with Moderate/Severe Ulcerative Colitis May 2008
3 Flair ups (first flair- 2 months/Second Flair- 2 months/ Third flair- One week, then surgery)

Full Ileostomy surgery done on july 22!

Living with an ostomy bag right now and loving feeling healthy again! Finally have gotten this horrible disease OUT of my body!

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 2/19/2011 2:04 AM (GMT -6)   
Stay strong! Prayers and hugs being sent your way! You can do it!

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 2/19/2011 10:51 AM (GMT -6)   
How long ago was the surgery? Many of us have had trouble peeing, especially after having a catheter in.

Hang in there. We are here for you.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Collicat
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Date Joined May 2009
Total Posts : 827
   Posted 2/19/2011 11:26 AM (GMT -6)   
Oh I am so sorry. If it helps, Dillon also had problems peeing for the first 3-4 days....it did resolve on its own. It must be such a worry for you though. It is also quite common for the bowels to shut down on the third or fourth day. It is called an ileus and Dillon also went through it as well....on day 4. It is simply the bowels saying that they are not ready to work yet and need a few more days of rest. I know that these are such hard days for you but don't lose sight of the fact that his colon was so diseased that it absolutely had to come out. I am sure that there will be better days ahead.

Your family is in our thoughts,
Cathy
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

hopein3s
New Member


Date Joined Feb 2010
Total Posts : 14
   Posted 2/19/2011 12:37 PM (GMT -6)   
I had my colon removed on Jan 31st because of UC. I also had peeing problems and had catheters in and out and even had to go home with one. Had a cath in for a total of two weeks. I don't have one now but peeing still does not feel normal yet. I have heard it can take a month or so to normailze in some people. I think your son will be okay, it just takes awhile and it is not uncommon. Give it a soild month, I'm praying!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/19/2011 9:10 PM (GMT -6)   
I'm hoping today is a little better for Charlie...still praying for him and your family.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 2/20/2011 4:29 AM (GMT -6)   
Hi there, I am just here with another experience to share since we all have different ones. I had my surgery 9 months ago and still cant feel my bladder. It is numb? I just cant feel when it is full or empty so I just try and ahve a go at it every time im in the washroom to empty my bag. The doctors say its nerve damage from surgery. Fortunately... I can void my bladder on my own or else Id have to have a permanent catheter..... I am having more tests done but Im not toooo hopeful. I also have leakage problems now. I cant couch or laugh without lseeping out...sucks. I hope his bladder gets better...take care..Celine

aragorn
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 2/20/2011 8:26 PM (GMT -6)   
Almost a week after surgery, and Charlie keeps having one complication after the next. Now he has catheter, stomach tube thru nose, oxygen, and getting new blood. The tell us "this takes time," but to see something new go wrong each day is very frustrating.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/20/2011 11:12 PM (GMT -6)   
Oh My -- still praying for Charlie and all of you. It hope things turn around real soon.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/21/2011 11:02 AM (GMT -6)   
Aragorn, you guys are in our thoughts and prayers!

I know this seems like the most frustrating thing, and it is really awful that things keep happening. But I promise, things will get better. Complications happen after a major surgery like this, but he will be ok and he will be healthy FINALLY!!

Hang in there. We are here for you.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/21/2011 11:20 AM (GMT -6)   
I am going to say the same thing as 80sChick. Yes, you are having more than your fair share of complications but the main thing is that the docs are on top of everything and by what you said before you have every confidence in your doctors. Don't lose sight of this.

Dillon also had more than his share of complications and had tubes coming out everywhere...nose, anus, bladder and belly....and many times the tubes came in and out. He also had a mucus fistula that opened when he had a terrible night of vomiting....he actually looked at me with terror in his eyes that night. He was in the hospital for over three weeks but slowly, ever so slowly, the tubes started to come out (and stay out) and then with everyday he became healthier and healthier. The docs kept telling us that all these complications were, "not steps backwards, but sideways". You know that the end of our story has ended SO WELL.

Have faith in your doctors, take it one day at a time and things will get better.

Thinking of Charlie and your whole family,
Cathy
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/21/2011 12:40 PM (GMT -6)   
Charlie is in my prayers.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

aragorn
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 2/21/2011 7:35 PM (GMT -6)   
You all give us hope, and we can't thank you enough.

CT scan today found 2 abcesses, which will be drained with a procedure tomorrow, hopefully.

Thanks again.

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/21/2011 9:50 PM (GMT -6)   
I know how hard it is to see our child go through this. If only we could take their place. I will continue to pray for Charlie and you.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/22/2011 1:09 AM (GMT -6)   
I'm ready to go to bed and Charlie and you are being prayed for again.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/22/2011 1:35 PM (GMT -6)   
Aragorn...just wondering about the abcesses. Were they able to drain them and could these have been having an effect on the bladder?

Please know that you have a lot of people thinking of Charlie and your family.
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

aragorn
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 2/23/2011 12:48 PM (GMT -6)   
Yes, abcess drain seems to be working, and they do think it will positively afffect everything, including the bladder. He's alert today, but no big turnaround yet. They just put in the drains yesterday.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/23/2011 3:17 PM (GMT -6)   
This is really good news....wonderful to hear something positive.
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16728
   Posted 2/23/2011 4:08 PM (GMT -6)   
I am happy to see you're getting support and prayers here. Charlie and your family are in my thoughts.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa | Currently: stable - Asacol (3200mg) + Canasa (nightly) + 6mp + Allopurinol + Prednisone + Ponstel + Klonopin + Ambien

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/23/2011 4:26 PM (GMT -6)   
Praying things keep improving for Charlie.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

aragorn
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 2/24/2011 4:57 PM (GMT -6)   
Charlie's abcesses seem to be draining, NG tube removed, trying some clear liquids. Pelvic area still very swollen, still with catheter. Some guarded optimism.

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 2/24/2011 8:57 PM (GMT -6)   
Love to hear positive things! Everything is going to take a lot of time and a ton of patience. Charlies sounds like such as amazing boy. Stay strong! Hang in there and have faith! Lots of hugs and love to your family!
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