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I just finished stage two of three in my journey for a JPouch.  I have a massive amount of liquid output from my loop ostomy- about 2,000cc.  I feel very dehydrated.  Sadly, I am allergic to Imodium and Lomotil (rare).  I am taking Tincture of Opium, but I get a little shortness of breath on it, but it works well on slowing my output.  Are there any other drugs folks are using to slow the ostomy output or my future JPouch, other than Imodium and Lomotil.  I am eating bowel slowing foods and Metamucil already - and have employed dietary agents.  Thanks so much.  Doug

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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.

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.

Last edited by Elif

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

@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?

@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.

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.

@Elif 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

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