J-pouch frequency isn’t that bad
March 20, 2009I’ve said before, both in videos and in private conversations, that one of the biggest stumbling blocks to surgery is the temporary ileostomy. Many people cannot wrap their heads around living with their intestine outside of their bodies. They fear managing their ileostomy and their physical appearance, and are thus paralyzed into inaction as their health deteriorates every day.
And I say that the second stumbling block to surgery is the supposed frequency that comes with using a j-pouch. People look at the raw numbers–going to the bathroom 10-12 times in the beginning, eventually going 4-6 times a day, going 1-3 times a night or more–and they conclude that having a j-pouch is almost like having colitis again. They’d rather return to a state of perfection when that is no longer possible.
I hope to put those fears about j-pouch frequency to rest with this video. When seen in the proper perspective, meaning, comparing the frequency of a j-pouch to an ileostomy to colitis to a normal person, the supposed frequency of the j-pouch is nothing more than that–supposed.
Keep fighting,
~Dennis
Question: For the j-pouchers, what is your frequency and does it bother you? Answer this post!
i have had j pouch now 4 10 years with no problems, until the last 8 months, going about 7 times a day, and 2 times during the night now with nocturnal incontinence that is upsetting me the most. it bothers me because my sleep is affected now , especially trying to get up 4 work, preety sick and tired of it all . it didnt bother me going 7 times a day before but its the night time part that gets me down now.feelling confused/ worried/ slightly depressed now .dont know what yo do.
Hi Ray, I’m glad to hear your j-pouch has been working good so bad but unfortunately these past few months. The night can be bothersome. Sometimes I set my alarm clock once or twice, like at 1 am and 4:30 am, that way I get up to empty my j-pouch and still have a good amount of time to fall back to sleep before I get up for real.
I’ve dealt a little with the incontinence part but it has never been much stool. When I go through those periods I wear feminine pads to catch and absorb the stool. They work very well for me.
I am at about 1 year with my j-pouch and I now very rarely have to get up in the middle of the night. I have been asked quite often if I thought surgery was the right decision for me of if I should have struggled with my colitis. Dennis has all good points but I would like to add that with the j-pouch I am now on no medications except for an over the counter multi-vitamin. Having to take no meds is almost worth it alone!
Hi Ray, hang in there!
I know it can get frustrating, especially when you aren’t getting sleep and feel like you have lost control. I relate to friends that it is like having to wake up and feed a newborn every few hours, except that you can’t show up at work everyday and say “I was up all night in the bathroom” :-)
But, there are those of us who understand and feel your pain.
I know each person is unique, but here are a few things I have noticed…
Depending upon how fast my digestive track is running, I can reduce my food intake during certain hours, which will reduce the need for the mid-night trips. Generally, if I can reduce my food intake in the afternoon, evening, I get better sleep. Additionally, if I eat food like chocolate, I am guaranteed incontinence at night. So, I try to stay away from that food at night.
Hope that helps…
I have had my j pouch for about 6 months now and to be honest for me it is just like having colitus without the blood. Today for instance i have past stool around 25 times which is very dis-heartening. I thought I was suppose to get my life back but at the moment that is far from the case. I do have some good days which can be around 10 times but night time is the worst. Not getting enough sleep makes going to work very difficult but luckly I am self employed so it is not a problem if i go to work late. I am going to see my consultant to see why I am not getting to results from my pouch that I expected. I will update soon. If anyone else has experienced anything like this and has got any ideas it would be great to hear from you. Warren
I had my takedown since August 7, 2009 after wearing a bag for 13 weeks. As of now, in my opinion, the only great thing about the jpouch is not being on any medicine after many years. I still go to the bathroom a lot. I stop counting. My nights are the toughest. If I have a night when I sleep 3 to 4 hours straight, it feels like I hit the jackpot. The doctors try to help but they have no idea what jpouchers go through afterwards. What I hate the most, is the constant pressure and never feeling totally emptied out. I apologize if I may seem negative but I still have faith and keep thinking it will get better and better as my pouch continues to grow and adapt. But I can relate to the ones here that feel like they still have colitis. Just hang in there and think of the positive of the jpouch vs. the colitis flares.
had my takedown/j pouch on 4-5-10, so far i would say that i am pretty disappointed in my current condition. 13 times to the can a day, more than i ever had with my colitis and the nights of falling asleep only to wake up seemingly right away to the massive cramp that says ‘time to go’. i feel as if the nights are slowly breaking my spirit, i struggle to get a good nights sleep anyway, now it seems like only a fantasy to actually sleep. i feel i must add that i didn’t want the surgery in the first place, my doctors told me that i was on prednisone for longer than i should be and nothing else worked anymore…”not a maintenance drug”. truth is i never had to go to the bathroom that often but i seemed to always bleed. anyway, i have hope that it will get better it just seems that the nights really affect my attitude towards this.
i agree with some of those who state that the j pouch seems like i still have UC…one day at a time i guess, fingers crossed. best of luck to all.
Hi Nick,
Try not to lose heart! You are only separated from your surgery by one week! It’s unlikely that things with your J-pouch will get better so soon. I know some people say their frequency drastically goes down after a week, for me it took more like 2+ weeks, for Nadia it was about a month, some people it might be six weeks. It all depends on the body and the recovery. But please don’t regret surgery yet. Give it more time, your body is trying to do a lot of things all at once.
And I would say in nearly every case, surgery isn’t a real “choice.” Some people might have some choice over when they have surgery, to a small degree, but if they have to go through surgery it’s because medicine doesn’t work. Your doctor was right that prednisone is not long term. Even though you might have been okay, it can really, really destroy your body. I’ve heard horrible things from people who have been on it for several years and other parts of their body fail.
I wish you all the best of luck and hope that your frequency turns around eventually and that you come to accept your J-pouch.
~Dennis