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Howdy folks!

By way of electronic introduction, I’m a J-poucher…probably  a 2012 vintage; but with all the latent prednisone clouding my memory…who the hell knows.  Basically I did the UC dance from 2009-2012 with a year or so of surgeries to evict that freeloading colon.  I don’t mean to gloss over the supreme suffering, but my re-entry to the world began in late 2013 - running my first half-marathon (join your local Crohns/Colitis group run - -terrific way to re-assimilate).

….and once I felt better - - I quit.  I quit thinking about my disease, my experience, my health.  Arguably this may not have been psychologically healthy, but at the same time, it seemed appropriate to step back from the experience for a while to feel normal.

But, I’m not normal.  Diet, hydration, lost sleep, fatigue, joint pain, butt burn, depression, pouchitis, leakage, rectal prolapse, and blockages all conspire against me.  This may seem gloomy for those of you fresh off surgery, or considering it, but NO!  All of this is manageable and easily ingrained into a lifestyle.  I’d easily take this baseline over what the UC offered.  I’ve just yet put the energy into managing these things as a whole, or a collective program.

I’m looking to get serious about identifying and integrating solutions to all these issues to reach my own personal peak pouch performance.  I appreciate all those who contribute to this group, and look forward to your sage advice moving forward. 

For openers, I’ll ask: what was the 1 thing, the most important thing you did or discovered, to advance your quality-of-life at least 2 years out from take-down?

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I finally quit drinking coffee and my frequency has decreased, significantly alleviating a bunch of other issues with butt burn and spasming.  If only I could quit drinking alcohol, but cuffitis and pouchitis symptoms are still worth the partying. One day I'll be able to stop drinking when I socialize but going out with friends at age 27 isn't fun without beer or wine.

Metamucil and Calmoseptine.   I have a very quick GI track,  so Metamucil makes me feel "normal" again.  I don't go one day without it.  And, the Calmoseptine is a miracle for me.  Any butt burn/pain, and that stuff clears it up overnight!  I even keep some in my purse, just in case of emergency.  Highly recommend both.  And, I'm vintage 1998. ��

I'm only six months out from take down, but...

Psyllium husk. I take two capsules three times a day, to coincide with meals. With it, I usually have 4 bms a day, they are mild on my skin and are surprisingly well formed (which also means they're no effort to hold in), and I sleep through the night no problem. Without it, I don't have any continence issues, but my stools have much more liquid (which always feels like more of a conscious effort to keep in), it's a lot less mild on my skin, I'll have 5-8 bms a day, and will sometimes have to get up at night.

With psyllium husk, I eat a completely normal diet (lots of spicy food, regular coffee, alcohol) and nothing seems to bother me.

J moons posted:

I finally quit drinking coffee and my frequency has decreased, significantly alleviating a bunch of other issues with butt burn and spasming.  If only I could quit drinking alcohol, but cuffitis and pouchitis symptoms are still worth the partying. One day I'll be able to stop drinking when I socialize but going out with friends at age 27 isn't fun without beer or wine.

Yep sadly coffee is a horror story. Do allow myself one cup first then then alas no more all day.

Hi, I'm based in the UK and have been buying my psyllium husk either from Boots (as sachets that you mix with water, the brand name is Fybogel), or in capsule form from Holland and Barrett. I get the best results either by taking Fybogel after breakfast and dinner, or by emptying the husk from the capsule directly into water (and discarding the gel capsule itself) after meals.

I'd like to take psyllium husk long term, as the benefits are superb, so am planning to ask my GP to prescribe Fybogel (as that's the brand available under the National Health Service).

A key difference between imodium and psyllium husk is that psyllium isn't a medicine. It's a dietary supplement made of seeds. I've taken imodium a few times, to experiment with how much it improves things. It was nice to take a couple of times in the early days, as it guaranteed a quiet day for my j-pouch, but six months on things are working well anyway. I think long term imodium use is safe enough for a j-poucher, but I would rather not be on any long term meds, if possible. 

I have a friend with a j-pouch who started taking psyllium husk a few months ago. Without it he has 8 BMs per day, with it he is averaging 4-5.

Thanks everyone!  As I mentioned, I'm working to reach peak performance in all ways, so....to really drill down.... 

Has anyone experimented with WHEN the take the fiber supplement around a feeding?  I'm trying numerous timings right now, but my working thesis is: Drink the Metamucil mix right before I eat, so it has a head start to "coagulate" in the stomach slightly before the food comes along.  Then we have a nice "bulked consistency" to (hopefully) slowly move through the pipeline.  Any specific timing habits folks are adhering to?

 

As a long time blockage suffer I would not advise using fiber. You need to drink and keep things loose and moving thru your system. I'm assuming your getting blockages due to adhesions. Have you spoken with a surgeon about removal? Is that why you mention having issues with diet?

As for depression, an anti depressant and exercise.

But you mention joint pain, fatigue, leakage, butt burn, sleep, pouchitis. Clear the pouchitis and that will take care of the rest. What are the Drs giving you for that?

 

 

 

For me, I mix the VSL#3 DS packet with the Metamucil, add a little ice, water and Orange Juice as my morning cocktail.    I drink this on my way to work, and then eat breakfast at work.  This combination of OJ with water and supplements is the only way I've been able to handle the supplements.   The water helps to thin out the supplements (so they don't get too thick while I'm drinking), and the ice helps keep it cold on the drive.  And the OJ just masks the taste of the other two 

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