Community Forum

Hi,

I've had an illeostomy since August when the last 10 inches of my colon was removed due to stricturing caused by Crohn's Disease. I am due to go back in for a reversal next month for reversal surgery.

As far as I know, when the reversal is done, the small intestines will be connected to the rectum because as it stands now I am connected all the way through with a diversion and stoma to empty out into the bag.

I am concerned about my quality of life since right now I empty my bag 5-6 times a day and it is mostly loose/watery regardless of what I eat.  I would like to hear experiences from/about anyone who no longer has a colon and has had a reversal done and what life is like.

I am considering not having the reversal done but would like more information before I make up my mind.

Thanks!

 Reply posted for whytwolf.

I see this is bout a month old but wanted say I have been on Immodimum since my surgery. I was told 2 pill before breakfast, lunch, dinner and bedtime. With the aid of Metamucial if nessarcy to get the consistancy of the bag output like apple sauce. Mine turned watery soon after release and that lasted bout 4 days then my kidneys quit. I was dihydrated because watery bag was equal to dirreah. Went thru emergancy dyalysis for 18 hours then weaned off and my kidneys were fine. Since then I have watched my output like a hawk. 900 to 1200 measured in 24 hours and the consistancy of apple sause or better. I"m just like you, not resectioned, just a loop in for the iliostomy bag.

Hope your reversal went well by this time.

 Reply posted for whytwolf.

 Reply posted for whytwolf.

HI   MY   NAME  IS  TONI   AND   I  ULCERATIVE  COLITIS   SINCE   I WAS  14TH   YEARS  OLD   I   WENT   THROUGH   12 OPERATIONS   WHERE   THEY   DID   TOOK  MY    WHOLE  LARGE   INTESTINE   OUT  ,  THEY   DID   EVERYTHING   FROM   A TOTAL COLECTOMY , THEN A STRAIGHT ILEOANAL PULL-THROUGHT  THEY  IN BETWEEN ALL OF THIS I HAD LOTS OF COMPLICTIONS  . I ALSO  UNDERWENT SEVERAL REVISIONS TOO!  THEN THEY ALSO DID   THE J-POUCH  AND THAT  DID   NOT  WORK  FOR  ME  EIGHTER  . I ALSO HAD SECONDARY SCARRING TOO. I ALSO   PATIAL SMALL BOWEL OBSTRUCTION. I ALSO HAD  POUCHITIS  TOO!  I   AM  26 YEARS  OLD   AND   I  HAVE  A PERMANENT   ILLEOSTOMY   8  TO 9   TIMES   A  DAY  AND IT   DENPENS   ON  IF   ITS   WATERY    AND   WHAT I   EAT   TOO  !   BUT   I  AM   HEALTHY  THEN   I WAS   .  TONI 

 Reply posted for whytwolf.

Hi,

I see you sent this a few weeks ago, but I wanted to answer anyway. I can see your concerns about the reversal surgery, especially since life with the bag isn't so bad.  I had my reversal a year ago, and I've loved living with my jpouch, you can visit my blog, and see my 9 month jpouch update, with my BMs, food, intimacy, scars, etc... http://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/

Also, what is in the bag doesn't translate to what it will be when you use your pouch, it should be less watery with time. Plus, you can use fiber and anti-diaraheal meds (if your doctor says okay) and that can help slow things down and thicken things up.

On my blog, I've got tons of pictures, and stories from myself and other jpouchers, you may want to visit and see that we are all doing well with our pouches.  www.ucstory.wordpress.com

Mark

 Reply posted for joprin8.

Hello, I had my illestomy reversed 6 months after my surgery, I have dehydrated and been hospitalized several times. My opinion to your daughter is drink plenty of fluids, I drink 32 fl. oz, Gatorade daily plus 1 cup of water and sometimes 1 can of clear pop, When your daughter urinates and her urine is dark that is a sign of not enough fluids, so have her drink up,she can pull herself through this if she drinks plenty of fluids. 

Cookie

 Reply posted for Terri911.

Terri911,

Thanks! While I don't think I will have a J-pouch because it is all connected now, with just a diversion to the stoma and there was no mention of a pouch, although that will be one of my questions when I go to see the surgeon for my pre-op appointment this Thursday.

So you take Imodium daily? Any adverse effects from it?  I was thinking that I might need to do that because, while I only have to empty my bag around 5 times a day, it is usually very watery (depending on what I eat).

Depending on what they tell me, will make up my mind as to whether or not I have the surgery or live with the bag.

Thank!

 Reply posted for whytwolf.

I had my entire colon removed, w/J pouch, reccontected in 2000.

I could have lived with the bag (you do get used to it) but SOOOO glad I am "normal".  I have 7 or so BM's a day. Depending on what I eat ( you will never have normal stool) but no urgency. I drink a lot of water/liquid daily. My main complaint is a lot of gas which of course you never know if its gas or the real thing so you go to the restroom.  I only take Imodium daily just to slow things down a bit.  I have had blockages from eating too many fruits/vegatables and not enough water to keep things moving.  The blockages have worked themselves through (no medical help).

Let me know if you have other questions.  Life is good now :O) 

 Reply posted for whytwolf.

My daughter had her take down on 8.25.08 - she has had a hard time with up to 10-12 bms a day, unfortunately she also dehydrates on a regular basis and has been readmitted to the hospital 3 times for this.  I hear things will get better, we are sure hoping so.