I don't even know where to begin with this one. This has become the most debilitating part of living with a J-Pouch for me, bar none-- just the sheer amount of time I now spend in the bathroom. I often have a lot of difficulty emptying the pouch. This mixed with the occasional tenesmus, leads most of my bowel movements to last around 4-6 hours each on average.

I guess I'm considered lucky in that I usually only go to the bathroom 2-3 times a day. But with these 4-6 hour sessions, that usually ends up being 80% of my waking day. Sometimes this is tenesmus messing with me. But the majority of the time I'm ultimately having difficulty emptying the pouch in a normal timeframe. I just keep going. As I sit there, every, say 15 minutes there's another wave ready to push out. If I go for the alternative, being just calling it quits and getting off the toilet anyway, as soon as I'm done cleaning up, I have to run right back to the toilet. So instead of doing that over and over and over-cleaning my now extra sensitive skin raw, I just have to sit there and wait it out. 

Sometimes I get lucky and it only takes an hour or two. But even just wiping itself takes at least half an hour, sometimes over an hour. That never used to be the case when I had a colon (even a diseased one) and I don't understand why it is now, other than the simple consistency / pH difference of the stool and trying to handle it in a way that lessens the pain of my searing butt burn in the process. So even when that luck strikes, it's still a several hour process. And that only happens maybe once or twice a week. There's been many days over the couple years I've had this thing condemn me to single sessions in the bathroom for 18, 24, once even 36 hours. Those are the days I often become so sleep deprived I start passing out, falling off the toilet, banging my head into the walls, etc, still with no end in sight.

When I see a non-IBD friend walk out of the bathroom in literally 2, maybe 5 minutes tops, I honestly get so resentful. But even the now "normal" days mostly consist of me literally waking up, going to the bathroom for 16 hours, eating the quickest meal I can, and immediately going back to bed. Or taking those few free hours to do some of the work that's piled up instead of eat or sleep. Needless to say, this has not only taken over my life, it's completely ruining my career, and my life.

I haven't talked to my surgeon about this yet, but based on all my scopes he says my pouch looks perfect. I have talked my GI about all this and he has no idea why it's happening or what to do. I'm at least taking plenty of Imodium to slow things down. And consistency-wise, my stool is right where the doctors want it to be for a j-poucher. Though I also have a multitude of other bizarre complications yet to be figured out that perhaps are linked in some weird way. My frame of reference is probably skewed, because I only had UC for a year, that was always moderate, before it suddenly became fulfillment for a couple months and they ended up taking my colon. So I really only went through a very short period of true colitis hell, and it's seriously questionable that that was actually necessary in the first place. But man, if this is how life is going to be, I really don't think it's worth it.

I'm sorry for the inordinately long sob story. But regardless, if anyone has any experience or helpful advice for all this, I would very sincerely appreciate it.

Original Post


This helps clarify your other post about gas pain. I can think of a few things you might consider.

1) In a coloned person muscular contraction of the rectum helps produce a bowel movement efficiently. J-pouchers have no such musculature, and have to depend on gravity and intra-abdominal pressure to empty the J-pouch. Some folks take to this naturally, and some have to work harder at it, sometimes including biofeedback. For example, if the sphincter tightens when you’re trying to empty, nothing good will happen. This could also explain the pain you describe in your other post.

2) I think I recall from your other post that you’re taking Imodium. I’m not sure what you’re trying to accomplish with the Imodium, but I’d suggest stopping it for a couple of weeks. See what effect that has, at least.

3) You are very likely to have (or develop) significant hemorrhoids from the amount of time you’re spending on the toilet. At this point that might be a significant source of the external pain you describe.

4) J-pouches sometimes have structural problems that interfere with emptying. Some of these (such as pouch prolapse) are mechanical and occur only during (attempted) defecation. Pouchoscopy doesn’t help make this diagnosis.  Defecography is a test that images the pouch during defecation and reveals what’s happening right then. You might be ready for that.

5) As an interim measure, to get you some relief, you might consider pouch irrigation as a way to empty your pouch. There are also a few folks here who always empty their pouches that way, but I consider that a last resort. It’s probably better than pouch removal, in a sense treating a J-pouch like an inconveniently located K-pouch.

Good luck!

I was being quite constipated on the last november, it became really painful and , and disappointing, I solved it adding cooked vegetables (turnip greens which we have many here in Italy) one evening I flushed much more stools and then in the next days I still ate cooked vegetables, lots of yoghurts, some salads, and I solved the problem (still had pouchitis). I advise you, also, to try psyllium fiber . The cooked vegetables are to be cooked in olive oil or butter and you can add garlic, really yummy ! I forgot, I'd really stop imodium in your case, I suspect it could even be the cause of the problem.

Diet is so extremely important for a pouch to function at its best. I have had my pouch for 5 years now and through alot of trial and error I have it working well 95% of the time. I find for myself that the more vegetables i eat the better.  I eat alot of  soft steamed broccoli, cauliflower,  and brussel sprouts.   I ususlly have 2-3 salads a week.  I make green smoothies with baby spinach, ginger, cucumber, plain greek yogurt, peaches with a touch of honey and water.  The smoothies get everything flowing easily.   I also find that a low carb low sugar diet is the best for me.  If i eat too much proccessed food it makes empting very difficult.  I try to drink 1-2 glasses if water with each meal.  My favorite breakfast is soft cooked oatmeal with blueberries that i heat up in the microwave for a couple of minutes and a nice dollop of real whip cream.   Again i would like to stress how important your diet is.   I hope this helps.

You may be suffering from Fissures within the Anal Canal.

A day or so after my takedown surgery I experienced a similar sensation as yourself, kinda feeling like I needed to go but nothing happening and once I finished, I'd have to dash back and start over; at the time I didn't know what expect but I had the sensation of needing to pass something more than what was coming out, which was never ending.

I managed to apply ilex paste just within the Anal Sphincter which provided instant relief of the pain and discomfort and also stopped the desire to keep opening my bowel.

However, on the ilex Paste packaging, it clearly states For External Use Only, so bear this in mind, although during the last 5 years, every so often, I've applied the ilex Paste how I've described and without issues.

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