Imodium, cholestyramine, and metamucil

I have tried all three. Ultimately, Metamucil/psyllium husk works best for me at keeping my stool at a comfortable consistency. Took years of experimenting to figure that out though but I can operate pretty normally (travel, work, etc.) just with Metamucil and watching what I eat. 

I take the directed dose of Metamucil/psyllium husk three times a day with a meal. 

I'm struggling so much and it's gotten worse since I posted this. What do you typically eat in a day? I know everyone is different. How many times do you go?

Readann, although you have an ileo-rectal anastomosis, I wonder if something equivalent to pouchitis could be going on. In other words your gut could be reacting to an unfavorable mix of bacteria. Heck, you’ve got more of a gut microbiome than J-pouches do. Have you ever tried Cipro or Flagyl? Have you tried a strong probiotic, like Visbiome?

Thanks, Scott. Things have gotten even worse since I posted. I'm hardly eating. My surgeon said there is no issues mechanically so there isn't much else he can do. My GI said she is out of ideas. So, I am not sure how to suffer like this for the rest of my life.

@readann posted:

Thanks, Scott. Things have gotten even worse since I posted. I'm hardly eating. My surgeon said there is no issues mechanically so there isn't much else he can do. My GI said she is out of ideas. So, I am not sure how to suffer like this for the rest of my life.

Maybe it’s time for a smarter GI?

I'm so sorry things have been so rough. I have my j-pouch because of colon cancer and getting a j-pouch was definitely a turn for the worse in my lifestyle and it's taken me years to figure out my new normal and I'm still learning everyday. 

Since you asked what we eat, I'll share some things in hopes that it helps. I try to operate on a few ground rules: 1 - don't eat if I feel full/am not hungry, 2 - if I can get psyllium husk/Metamucil at least twice a day I have better less frequent BMs, 3 - avoid any of my trouble foods if I want to feel good. 

A normal day for me if I'm working or going to be away from home most of the day is:

Breakfast - Visbiome powder (probiotics), a z bar and Metamucil wafer or psyllium husk powder (same thing basically). Forvia chewable vitamins and sometimes a greens powder. I usually drink a water bottle or water mixed with Liquid IV powder up until lunch. 

For my other meals I will have Metamucil before at least one of them. I do not eat any roughage (raw fruits and vegatables, nuts, etc.). These don't work for me. Green smoothies are usually fine though. For me it's usually a quantity thing when it comes to meals. If it's a food that bothers me, I need to only eat a little. If it's something that doesn't bother me (like chicken and rice - my go to meal) then I can eat a little more. But if dinner roles around and I feel full or not hungry, I need to skip the meal so I don't cause issues. 

Oh how I miss my salads, nuts (nut butter works though), and soda but they just aren't worth it based on how they make me feel so I never eat them. 

I have some of my rectum left still but also I have a j-pouch so I'm not sure if my experience will be helpful at all but wanted to share. When I've had pouchitis I've felt mainly a lot of urgency and straining to go. It's happened 3 or 4 times over the last 8 years. When I take Visbiome I don't have pouchitis symptoms.

I hope you find some relief! 

@Scott F you’re right. It would be hard to as all my specialists are in the same hospital system. I’ve seen three regularly (I’ve seen a lot more as I was hospitalized for three months and they were on rotation). But my primary GI gave up, another is the one that works in GI dietetics and she said “just keep trying new foods” and her and the RD weren’t helpful or willing to work consistentl, and the third is the motility GI and she was mad I was getting reversed. My stoma has tons of issues so that was a no brainer for me. I have pelvic floor dysfunction so that’s a lot of my issue. I’m seeing a pelvic floor physio but suffering. They’ve cut out all the biofeedback training around here. I’m just so lost. I even called the mayo clinic and Cleveland clinic to inquire on possibilities for once the border opens, but I’d have to sell my house to afford treatment, even if it would work, which is debatable.

and no, a stoma is not an option! Others have suggested that but it just caused many problems and emerg surgeries.

Thank you @Safado for the detailed reply. My reply to Scott above explains more of my situation but not all.

i don’t mind if things take time as long as I am feeling a smidge better and not consistently worse. 

I am taking Metamucil once a day. I was taking it twice but things have gotten so bad I have skipped breakfast and lunch and am eating a small snack mid day and only dinner.

I have heard lots about visbiome but it costs so much and I worried it won’t work for the cost or make things worse (my bigger worry). I’ve already spent so much on trying things.

What does pop/soda do to you? I’ve been drinking diet Gingerale because it feels soothing. 

I dont think it’s Possible to have pouchitis because I don’t have a pouch and my full rectum (and a few cm sigmoid) and I don’t think it’s inflamed but I have a scope in a couple weeks anyway to check the anastomosis and make sure it’s healed and not narrowed. 

how many times do you poop a day and what’s the consistency like? And do you poop more at certain times based on how you eat?

Soda gives me gas. My biggest thing is avoiding gas because when I get gas I am miserable.
I have good days and bad days. On a bad day I could go 15 times. But most days I go maybe once in the morning. Two or three times before dinner and then after dinner I go once or twice. But then before bed I seem to go to the most and am in the bathroom sometimes an hour just watching a show waiting to clear out so that I can sleep. Gotten used to it. So I mostly go late in the evening I think because evening is when I eat the most. 

@Safado thank you. A poop schedule like that would be a dream. I go out 9 times in the morning over three hours and it’s difficult to pass it all. It takes so long.