Ulcerative Colitis

Considering a reversal, but only theoretically ...

March 4, 2022 in Ulcerative Colitis

This post is me kind of unburdening myself to like minds, so I hope it's okay if this is a little meandering. :)

The past couple of weeks I've been up and down with my j-pouch (which I've had for two years now), which has become somewhat of a trend. I've found psyllium fiber to be a game-changer for helping to create more "formed" stool and reduce irritation, but for whatever reason, it doesn't always work consistently. So I can have a couple pretty stable weeks, and then a week of looser, more frequent bowel movements, despite still taking the fiber. There's some kind of magic formula I haven't quite figured out ...

Along with that, some days can be gassier than others, and when at work, that creates some general anxiety about going to the bathroom. It reminds me of the days of active ulcerative colitis (I had been asymptomatic for awhile before my j-pouch surgery), which is not a memory I enjoy reliving!

I can't say that I'm seriously considering a reversal back to an ostomy - I'd spent a few rocky months with the temporary bag dealing with leakage, and it was only in the couple of months leading to my takedown surgery that I'd really found a strategy that worked for me (barrier ring plus convex ostomy bags, hooray!). But at the time, I hadn't realized that fiber and Imodium were an option, and I wonder if that would have made my stool more manageable, and less leaky.

Sometimes I find myself waxing nostalgic for the ease of emptying the bag, the relatively noiseless bathroom visits, and not dealing with occasional accidents at night. I'm probably over-romanticizing how easy it would be if I went back, and I feel like there are still positives to having the j-pouch, that I wouldn't want to flippantly do a reversal when that would be a permanent decision.

Not sure if anyone else with a j-pouch has struggled with the lesser of two evils (bag vs. j-pouch) and whether the grass will always be greener on the other side ... for now, I plan on troubleshooting what I've got, but it's hard not to wonder if it'd be easier switching back. :)


1 - 8 of 8 Replies

  • Wendy_LExpert
    Care Partner of Adult

    It would certainly improve sleep patterns for my son, who has had his pouch for 10 years now.

    March 4, 2022
  • kerrybPatient

    Has he thought about doing a reversal, just out of curiosity?

    March 4, 2022
  • Wendy_LExpert
    Care Partner of Adult

    I don't think he has, but I have, since it has been 10 years and he has had complications with disrupted sleep and most recently in February his twisted intestines that resulted in emergency surgery.

    March 4, 2022
  • Jackie_ZExpert

    Oh I think you are where a lot of people have been but aren't brave enough to really say.

    You're a smart person and you've lived on both sides, so I don't know that there's any real advice that I can offer other than this:

    I always viewed my jpouch as trading a large set of problems (UC) for a smaller set of problems. I think with the ostomy it's a similar situation except maybe trading a small set of problems for a different small set of problems. Neither choice is foolproof or guarantees success or joy.

    Instead of creating a pro and con list, try to think about a joy and meaning list. What can you do that will bring you life more joy or meaning with an ostomy vs your pouch? Or vice versa.

    If it was as easy as turning off a switch I'd tell you to go for it and see what happens, but since its another surgery and recovery it's important to do exactly what you're doing and thinking from all angles.

    Keep us posted!

    March 9, 2022
  • AnnMarieOther

    I love all this great support! Come unburden yourself any time @kerryb

    April 4, 2022
  • Jackie_ZExpert

    Hey @kerryb did you decide anything yet?

    May 9, 2022
  • kerrybPatient

    So far I've decided to stick with the j-pouch. :) One thing I've now been doing is taking fiber before and AFTER bigger meals, and it seems to help with "binding" it all together. Of course, the trade-off tends to be that I think psyllium fiber can make me a little gassier, which was the other downside I'd been wrestling with.

    But I've started using the double flush - once while "going," to help drown out the noise, and then again after I feel empty. It has given me a bit more peace of mind when I'm out of the home, even though it feels a bit like a ~process~. 😂

    The part I haven't quite figured out is travel. Since I like to take a bit of psyllium fiber mixed in water before/after meals, it can be difficult to transport and manage when I'm not at home or work, or somewhere I can have a spoon, a cup, and some water, and mix it all together without looking like a weirdo. 😅

    Also, pro-tip, don't try to bring an entire canister of psyllium fiber in your carry-on when flying, lol. I brought mine with me and had TSA wiping it down and testing it like it was a bomb ... 🙈 Thankfully they didn't throw it away!

    May 10, 2022
  • Jackie_ZExpert

    In public restrooms, sometimes I wait for when people hit the hand dryers. Its so loud and it's helpful when you need some cover.

    What about something that could be a temporary binder on flights like bananas, peanut butter, oatmeal? Might not get you through the whole day but maybe through a flight?

    May 11, 2022
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