TEMarie, I'm so sorry that you're in a not very good place. You're doing everything right, working so hard, taking loperamide, Metamucil and on pain medication and your output is still so runny. This is how I feel with my migraines. I just want to crawl into bed sometimes, except laying down makes my head hurt more. It's like a cruel joke and it can be so isolating. Could it be the medications that you're on? When I started Topamax this summer for migraine prevention (ha!) my output immediately thinned out and became caustic to my skin. I started eating Metamucil wafers again. Potato chips, butternut squash soup and pasta thicken things up for me. Do you notice any foods work for you?

I ate one wrong meal when I had my loop ileo (while my j-pouch was healing prior to my takedown) and my output was liquid until the takedown. I could never seem to fix the consistency and was super nervous for the takedown. I consider myself VERY lucky that my output is fine now based on my daily regiment - 6 loperamide twice a day and 6 pills of psyllium husk twice a day plus iron and a probiotic. I tend to be able to eat most things with this regiment so I can't really help from a diet perspective.

There were three things that made my liquid output bearable with the loop ileo:

1. Diamonds from Convatec - basically little packets of the absorpant filling found in diapers. Even though it didn't change the output, it made my bag contexts thicker. With thicker contents, my bag felt lighter and it didn't pressure the flange's seal as much.

2. There was a special paste that my ostomy nurse put around the flange opening before attaching it to my body - it would generate a higher adhesive strength when warned by my skin. I'm not sure how common it is, but it works well for me.

3. A body wrap made my Ostomates - it fit snug around my body with a pocket for my pouch. The pocket also helped hold my bag up with it got heavy and look pressure off my flange.

If it makes you feel any better, I had a fungal infection around my ostomy site almost the entire time I had my loop ileo - the powder I needed to use kept my bag from sticking and the weight of the liquid output made it difficult to keep an appliance working for more than a day or two. Everyone who has to live with liquid output significantly struggles. 

Regarding dehydration - I've had severe issues with dehydration, though I'm horrified to learn about yours. What you're going through sounds awful. I went to the ER for rehydration a couple times during my few months I had the loop ileo and four times in the first year I had my j-pouch. I haven't been the ER since Dec 2015 and I'm so grateful and proud of that. Points I've learned about dehydration:

1. It's pretty common for us to learn about the importance of electrolytes in the absence of our colons. I used a product called nuun for a while - electrolyte tablets that runners put in water. It has very little sugar, unlike most sports drinks, and I found it tolerable than other options. 

2. I'm still not used to the amazing amount of water I need to drink to stay hydrated - at least 3 liter per day, 4+ liters is even better. I was too to avoid using straws so I don't have extra gas, but for me using straws to drink loads of water is well worth it.

3. It doesn't matter how much water you drink if you don't have enough protein to absorb it. The last time I went to the ER is had dangerously low blood pressure and the doctor said that CT showed third-spacing; I had all of the excess water that my body could absorb forming fluid pockets around my organs. (I was also anemic, hence iron included in my regiment). I drink one Ensure shake every day or so to guarantee that I have an acceptable baseline level of protein to ensure that every drop I drink counts.

As LAMBIEPIE suggests, I also wonder if something might be going on with your other medications... We have to strike such a delicate balance and it's unfortunate that there's no good, consistent answer. I hope you find something helpful soon, and I wish you the best.

Thanks for all of your suggestions Lambiepie and Maryelezabeth.

I had my j-pouch for over 5 years before having it removed. I did VSL#3DS and most of what you suggest Maryelezabeth.  I had cuffitis, pouchitis and strictures that were never under control. Rotating antibiotics, using Canasa suppositories, and dilations didn't work.  Altering my diet didn't work either. My j-pouch failed and by the time I had surgery I had pelvic floor dysfunction. My GI at the Mayo Clinic made an appointment with a surgeon the day after he did the last dilation during a scope. When he showed up at the same time I knew it was time to do something. She dilated me under anesthesia and it didn't work more than a week.

I suffer from chronic migraines too.  My GI at Mayo's sent me to neurology there and they took me off of what I was on and onto the antidepressant amitriptyline and off of the migraine medication and an antidepressant I was taking.  I went from 2 meds to one, yea.  My psychiatrist oversees the dosage of it now.  I still have to take what I call an emergency medicatio n when I have break through headaches.  Times of high stress, like my father's recent illness and death.

I have some sample sachets to put into the bag to make the output thicker.  I will try them, thanks.  I go from output that is too thick to to thin.  I also use NUUN plus I have some heavy duty World Health Organization recipe powder electrolytes too.  

I have many other health problems and am disabled but am only 60.  I have been dealing with this for so long I am about to loose hope of ever feeling well again.  People ask what do you do all day.  Being disabled is a daily job. I no longer get much pleasure of eating.  I have a consistent diet and it seems to have no bearing on when my output will go from thin to thick and back.  

I am hoping that by March of next year that things will normalize.  My husband reminds me that my surgeon said the surgery to remove the j-pouch is worse than the surgeries to get it.  I thought she was talking about her end of it.  Richard that posts here was back to work after 8 weeks My husband thinks she was talking about recovery being worse.

I'm sick and tired of being sick and tired.

P.S. I was told to take 2 Loperamide 4 times daily and that 8 was the maximum to take. MaryE did your GI prescribe the 12 per day?

Thanks again. 

My pouch is relatively young - I'm up for my two year check up in October. They didn't give me any limits on medication, they just said to try to find my own balance since everyone is different. I notice that five loperamide in the morning and at night is too little, but seven slows things down too much - so I landed at 12 pills per day. I'm going to ask at my check ups to see if it's okay - I've been extremely lucky and haven't had any issues or reasons to call my GI or surgeon since my takedown in 2014. Perhaps it's been long enough that I can start to cut back again and see how it goes. I'll let you know what they say.

In the meantime, I wish you all the best ❤️

It is great that you are doing so well! I've been told by docs to take 2 - 4 times a day. There are many folks that take 4 before hiking, for example. If it works don't break It ��  I  use Metamucil, generic, twice daily too. I no longer have a j-pouch so we are different.

I think it is great you are using VSL too. I am using up some that I had on hand and stretch one packet out over a few days. I figure it won't do harm any more, and my insurance company paid a lot for it.

Try tincture of opium. I  dont use or need it  any more but  when I had a J pouch it was the only thing that worked. 

 I ditched the belt early on and have been using the Brava elastic barrier strips by coloplast. More secure, and an additional line of protection from leaks, getting outside the appliance.

Thanks Chiromancer, I had my j-pouch removed around 6 months ago. I was hoping to have it under control by now.

The electrolytes are under control but I get problems with the volume of fluids in my body. I measure my fluid intake and can eat the same diet one day and all is well but the next day I feel faint, dizzy etc. I now know I am in trouble when my blood pressure drops significantly when I am standing. I check it at home when I feel this way and head to the Urgent Care Center where thplnpmey give me one or two bags of IV fluids. They take my blood pressure standing, sitting and laying down. 

I ditched the belt too. I have fibromyalgia and the belt was awful as it was too distracting. My Stoma nurse has me changing the appliance every other day and that is working okay. 

I am feeling better than when I started his thread. Thanks for the support and suggestions everyone ��