Skip to main content

Hey guys.    I survived 1st part of j-pouch revision surgery on May 18.     Quick recap, I had s-pouch 1982 at 17 y/o and reconnect one year later.    Worsening function to point of no return recently lead me to decision between permanent ileostomy bag or brand new j-pouch surgery.      Even after 4 full laparotomies way back in 80's my amazing doc at UCSD was able to do procedure with robotic scoping, no laparatomy.    Even got away without the dreaded N-G tube this round.     

So here I am home doing well except for high output stoma like 2500 ml plus per 24 hrs (shouldn't be more than 1200ml I am told).    Got super dehydrated but urgent care infusion rescued me last week.    3-4 L per day electrolyte drinks can't quite keep up with what I need.        Really getting serious about what I am taking in now but appreciate any advice you may have to slow output?     Also, how long before body adjusts on it's own with output?    Will this get better on it's own with dietary adjustments is what I am after.    Plan is take down surgery 3 months post 1st surgery putting me mid-August.     Thanks so much in advance for any advice!

Sean

Original Post

Replies sorted oldest to newest

I also had a high output stoma (2800 mL) and needed to be hospitalized several times for dehydration. Imodium was a huge help in slowing things down. I got the dehydration and output under control by drinking 2 L of Gatorade, 2 L of water and taking 6 Imodium per day. I didn't realize it at the time, but my output increased as I decreased my pain meds. The pain meds helped slow things down. My bag leaked all of the time before Imodium, but I never had issues after I started taking it.

I had really high output after my JPouch creation - while waiting for closure.  I think I was at 4,000cc some days.  I was hospitalized also and got a pic line for hydration.  Imodium and Lomotil helped.  It honestly took about 12 weeks for things to slow down.  Try not to drink too much sugar - that speeds stuff up.  Some say that medamucil can help bulk a bit and slow down.  There are also shots of Octreotide that slow things down super well.  I used those here and there and it kept me out of the ER.  Those are the big guns.

Avoid anything containing sugar. Avoid fibrous foods. Try imodium/loperamide. Take two pills/caps 30 min. before each meal. You can also try Metamucil powder or cookies before meals, which will thicken output. If there's an advice nurse  connected to your surgeon's office, run the above by them. Urgent care should have offered some advice before discharging you.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×