Issues following completion of J Pouch surgery and reversal

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tamara.ker
Regular Member


Date Joined Jan 2006
Total Posts : 146
   Posted 11/27/2010 1:32 PM (GMT -6)   
Hi Everyone,
 
I underwent emergency surgery at the end of last year for UC and subsequently developed a host of complications including pulmonary emboli, multiple organ failure, septic shock, toxic megacolon and eventually my colon burst.  I woke up with a Rectal Mucosal Fistula and an Iliostomy.  Since then, having completed all three surgeries 2 months ago, I am still going to the toilet about 20-30 times per day.  Sometimes I take up to 20 immodium per day, I eat no raw vegetables due to irritation, I only allow myself one coffee in the morning and am eating lots of carby type foods which I thought were meant to help with this issue.  I avoid anything fizzy and may only drink alcohol once every two weeks.  I get up literally every hour while asleep to go to the toilet and it is driving me insane.  I drink plenty of fluids such as water, rehydration sachets and lucozade sport but still get very dehydrated due to my frequency.  Am I doing something wrong?  Is there anything else I can do?  Alongside this issue I have also had 2 x blockages and 2 x strictures and feeling quite dissapointed with the way this surgery has turned out.  I hope that it will get better in time.  My surgeon did say that it can take up to one year to heal so I will try and be patient in the meantime.
 
Any advice would be really appreciated.
 
Thank you all in advance,
 
Tamara
 
 

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3063
   Posted 11/27/2010 5:24 PM (GMT -6)   
Sorry, I don't have any j-pouch experience, but I am sure suebear will be along with some helpful hints...have you checked out www.j-pouch.org?
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1954
   Posted 11/27/2010 6:42 PM (GMT -6)   
I don't have a J pouch but I did have a colon resection and temporary ostomy. Once the ostomy was reversed I found myself living in the bathroom as well. I went online and read how a low residue diet is recommended for people going thru chemo and experiencing D and multiple bm's a day. Their symptoms lined up with mine, although I didn't need chemo for my cancer (Stage I). Long story short, I went on the LRD, kept a food diary (recording every single thing I ate or drank), at small meals, as opposed to 3 large ones. I began my day eating a light breakfast by 7 am, and stopped eating solids by 7 pm each night. If hungry after 7 pm I would drink 1 to 2 full glasses of water, to trick my stomach into thinking I had eaten. It worked, by the time bedtime rolled around I was pretty much done having bm's because I hadn't eaten in hours. I was able to sleep almost straight thru the night, at least 6 hours w/o needing a bm. I also slept flat on my back, to stop or slow down the sensation to have a bm (if necessary but by not eating after dinner I didn't need a bathroom thru the night. Over time I figured out the foods that agreed with me and made sure I ate them. I finally had formed stool and didn't experience D. But I did continue to have multiple bm's, still do (that's for life, I lost the bottom part of my colon, called the sigmoid). But by eating a plain diet, you may be able to solidify the stool and possibly cut down on the number of times you do go. Also, I would highly recommend the eating for 12 hours within a 24 hour period suggestion. You should be able to catch more than sleep than an hour at a time.

Finally, I like my am coffee as well but any drink with caffeine induces colon contractions and bm's. If you could eliminate coffee and the like, you may see improvement. Then down the road you may be able to introduce coffee again but right now I'd refrain from it.
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg, twice daily + Probiotic: Renew Life/Ultimate Flora/Critical Care/80 Billion daily
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