Cholestyramine works wonders!

Foods that slow stuff down are: oatmeal, beans, pretzels, bananas i believe, and fibrous foods work wonders. A bunch of other options too.

Hydration methods: water: before, during and after every meal. Orange juice, fruit juice, pedialyte, V8 juice, milk, and gatorade. Eating potatoes, oatmeal again, pottasium foods too, veggies and fruits.  

With my temp loop it seemed that every thing I tried just turned to a constant watery output. Like you I was over 2000cc when I got home from hospital. I was never able to get it below 1600cc so to avoid dehydration I drank lots of water and Gatorade everyday. I just lived with the output because I am not a fan of prescription drugs. They freak me out. I hope you find something that works for you.

Thanks Ryan138 - greatly appreciate it.  If you don’t mind me asking, do you have a JPouch now - and if so - are you putting out 2,000ccs out of your JPouch?  I would worry that I would be have 15x bowel movements a day if I maintain this level of output. Or, so I understand better, when you had a takedown surgery to hook up the JPouch, did your output calm down.  How many bowel movements are you having now?  Thanks for taking the time to help me.  I feel very nervous.

Thanks Lauren - you have been very supportive.  I appreciate the advice.  You also told me to stick with the end ileostomy which could be where I wind up if I can’t get this output under control.

Thanks Doug

Hi Doug

My surgeon was Remzi too, and I also had very high output with the loop. I drank a ton of electrolyte drinks. I remember rarely drinking regular water. In order not to load up on sugar, I got a non-sweetened electrolyte powder from amazon. It was not artificially sweetened either. I did not take any meds to slow things down.

I have my j-pouch since March, and the output is a lot less than the loop. There a long section of your small intestine between the loop ileostomy and the pouch. Once they give you the barium test at NYU to test the pouch for leaks, which happens about a month after your surgery, just look at the screen, you will see the long section of your intestine between the stoma and the pouch. 6-8 weeks after the final  surgery, the output will not be more watery than it was with the end ileostomy that you had in the past, because Remzi did not throw away any of your small intestine. It is still there and will be functional once you are connected. It will absorb a lot of water.

Doug K.. yes I do have a jpouch now....I am coming up on 3 months post takedown.  I am still very new to my fresh plumbing system. I started out at 20+ BM per day and a few weeks later was average 16 per day, and currently 14 times per day. I think my problem is I love food too much. I am experimenting with psyllium husk powder and my output consistency has greatly improved. My doc says it could take a year for my pouch to settle in to a “normal” for me.  2 days ago I had only 10BM and slept through the night....was my personal best... it does get better, at first I was very scared but stick with it. I’m hoping to get under 10 soon.

Elif - I am truly grateful for your support.  I found your message right before I turned in for bed, and my mind was in a bad place.  So thank you for helping me.  Your knowledge is excellent, and I hope that my JPouch will absorb some water also.  I had been really sick for 25 years on high doses of steroids and every drug known, I am praying for a drug free JPouch (as long as I am not going 12x).  Remzi is so kind and brilliant - I owe him my life.  I was very sick when I met him.  I would love to stay in touch with you, and be here for you if you ever need anything.  Best Doug

Ryan138 - good news that you are going less!  Congrats - I hope you get to 6x!  Thanks for sharing.

I was losing about 2700 mL with my loop and was really afraid that would mean I would have high output when I got a j pouch. Fortunately, that was not the case and I quickly went to 7 times a day. 3 1/2 years later, and I'm still around 7 a day.

Thanks Kangaroo- 7 times a day sounds great.  Do you take any medicine to stay at 7 or are you medicine free?

I take 2 Imodium before bed to prevent nighttime incontinence, but don't take anything else to slow my system down. I eat whatever I want, as well. I had terrible problems with dehydration while I had the bag and was hospitalized twice.

Thanks for the comments - so happy you are better.

@Doug K posted:

Elif - I am truly grateful for your support.  I found your message right before I turned in for bed, and my mind was in a bad place.  So thank you for helping me.  Your knowledge is excellent, and I hope that my JPouch will absorb some water also.  I had been really sick for 25 years on high doses of steroids and every drug known, I am praying for a drug free JPouch (as long as I am not going 12x).  Remzi is so kind and brilliant - I owe him my life.  I was very sick when I met him.  I would love to stay in touch with you, and be here for you if you ever need anything.  Best Doug

I am glad I could make you feel better. Try to think positively, Remzi is a world-class surgeon, you are very lucky. You will most likely have a great life with your j-pouch. Thanks for offering your support! Do you know the date of your final surgery?

I don’t know the date yet - sometime around year end.  I will let you know the final date when I get it.  I go for some tests next week to see how the bag looks.  Thanks Doug

I meant to say “how the JPouch looks”

@Doug K posted:

Thanks Lauren - you have been very supportive.  I appreciate the advice.  You also told me to stick with the end ileostomy which could be where I wind up if I can’t get this output under control.

Thanks Doug

You are entirely welcome!!! I am here for you whenever you need me! And thanks for saying that, that means a ton to me

@Doug K posted:

Thanks Ryan138 - greatly appreciate it.  If you don’t mind me asking, do you have a JPouch now - and if so - are you putting out 2,000ccs out of your JPouch?  I would worry that I would be have 15x bowel movements a day if I maintain this level of output. Or, so I understand better, when you had a takedown surgery to hook up the JPouch, did your output calm down.  How many bowel movements are you having now?  Thanks for taking the time to help me.  I feel very nervous.

When I first got my J-pouch, I was going close to 40x a day, but now its 13-20x a day. I am sure once you get your pouch, the bms will decrease. Only one way to find out though.

Having a lot of bms a day is not so bad once you get the hang of things with the J-pouch. I am sure you are resilient and can handle anything

And taking loperamide is definitely safe if you choose to change your mind about it someday. Just about everybody on here has taken that and lived to tell the tale.

Doug K.... are you drinking any Gatorade....I was drinking 64+ ounces per day....the sodium is recommended for your body to retain water... my doc recommended this for me with my temp loop..

Thanks - I have been drinking a ton of hydration drinks - lower in sugar - but higher in salt and potassium

Ah I see.....I hope you get with your doc and get it figured out....I am sorry you are going through this...

Thanks Ryan - will get in touch with doc Monday morning.

@Doug K posted:

Thanks Ryan - will get in touch with doc Monday morning.

I think that is the best option definitely. Hopefully gastro can help with something

Hi Doug hope also went through dehydration before my final surgery and was hospitalized about 4 times for iv hydration. What made me finally go to the ER i woke up and couldn’t walk thats how bad it was my husband had to literally carry me to the car. Don’t wait too long.

Hi Angie - wow that was a close call.  Thank you for your note.  I may have gotten a handle on the output with Tinture of Opium, Benadryl and Prilosec.  I was putting out 3,000cc - and feeling terrible - now I am half of that.  Not loving to be on all of that medicine - but better than feeling so sick.  If I may please ask you - how was the transition to a JPouch?  Are you on any bowel slowing agents now?  Thanks for your help.  4x in the hospital - that is rough and I trust you are feeling better now.   Thanks Doug

Hi all!!  remzi's patients here in this chat,  i'm 4 months past takedown doctor remzi is great doctor always  positive if you ask if this if that his answer is always dont think bad think good every thing will be ok, he knows his patients i pumped in to him couple of times in nyu main lobby he recognizes me asked how i feel asked how my wife is (she was with me 24 hours in the hospital) very important to have such a doctor in this tough times.

Doug. I'm doing great with my j pouch 5-6 BM a day, after my 2nd surgery i had watery outputs not the same output as after my 1st surgery but after the J pouch things will change it will get more thicker. feel free to ask any question.

@Former Member posted:

Hi Doug

My surgeon was Remzi too, and I also had very high output with the loop. I drank a ton of electrolyte drinks. I remember rarely drinking regular water. In order not to load up on sugar, I got a non-sweetened electrolyte powder from amazon. It was not artificially sweetened either. I did not take any meds to slow things down.

I have my j-pouch since March, and the output is a lot less than the loop. There a long section of your small intestine between the loop ileostomy and the pouch. Once they give you the barium test at NYU to test the pouch for leaks, which happens about a month after your surgery, just look at the screen, you will see the long section of your intestine between the stoma and the pouch. 6-8 weeks after the final  surgery, the output will not be more watery than it was with the end ileostomy that you had in the past, because Remzi did not throw away any of your small intestine. It is still there and will be functional once you are connected. It will absorb a lot of water.

Elif, i had my 2nd surgery in march, a day after my surgery covid started, they stoped all surgeries, i believe i was his last surgery before covid, the hospital wanted to discharge me asap cause of covid.

Thanks Mark - great to meet another Remzi patient - he really seems to be an amazing person.  I am trying to keep positive and I realize things will get better after takedown.  I don’t need be in the office for a few months due to Covid, so I have some time to get healthy.  So glad this worked out for you. Thanks