I am 6 yrs out & have had some intermittent leakage over the yrs, nothing severe. The main thing I have found is to watch your diet-eat something that will give you more formed stools, like rice or oatmeal or breads & pasta, & taking psyllium (a bulking fiber) helps a lot. Everyone is different & will find different combinations work for them. No one likes to think about leakage & I was pretty nervous about it before surgery, but have figured out some things that work for me.

If it makes you feel any better, my GI wanted me to go on biologics as well, & I chose surgery & have been really pleased with the outcome!

Thank you pouchmonkey.... I am so frightened by the biologic infusions. My mom developed pulmonary fibrosis from the Methotrexate infusions (for rheumatoid arthritis). I've heard where people actually become temporarily paralyzed as well. Not just that, but there is no sense in putting off the inevitable. The surgeon even nodded in agreement when we discussed it.
I am very saddened to hear of such leakages. I will have to be extra extra careful with what I eat from the late afternoon and early evening meals I guess. Whatever happens, I guess I'll get used to it though. I'm going to have to warn my boyfriend that this is a possibility. I figured the worse part would be the time with the temporary ileostomy.... he has no idea what he's in for and I've got to somehow let him know of all of these little 'gross' things that will happen. Hopefully the bulking and immodium will ensure a leak free night for the majority of the time.
thanks again.

Casie - I am 5 1/2 weeks since my take down and I have never had night time leaks (although I did sometimes leak mucous with the temp ileo). I have, however, laid in bed in the middle of the night not wanting to get up and go to the bathroom and passed some gas which hasn't always been a total success.

I am about 3 months post take down and still have leaks at night. I sometimes eat late which could cause it. Surgeon told me to eat before 6 would help. I have little to no leaking during the day. No urgency like UC so even a little leaking I am satisfied so far.

I may have had a spot or two in the first few weeks, but I honestly can't remember. I'm about 5 and a half months out now and I don't have any leakage problems. The only thing that pops out is some gas every now and then. I'm probably not a typical case however, as I can usually sleep for 7 or 8 hours without a trip to the bathroom.

Even though you have to be aware that leakage is a possibility, keep in mind that some people really have no problem with it. It's difficult to discuss these things with our significant others, but chances are, if they have been with you for any length of time, they already know your situation is dire & that ultimately will be better. When I made the decision to have surgery, I focused on being really healthy & positive, daily visits to the gym, eating really clean, being around supportive friends & family, & had the attitude of-I don't HAVE to do this, I CHOOSE to do this for a better future. I let myself cry or be upset as needed-which was less than I thought it would be-& meditated a lot on asking my body & mind to accept the surgery & meds & made every effort to comply & be open to treatments & advice from others.

Honestly, I made the fastest recovery that the hospital had ever seen at that time-released after 2 nights, & I'm certain it was because I worked hard & wanted it. AND-the ileostomy improved my quality of life so much, I didn't even care or feel embarrassment about it.

Your boyfriend loves you & will be supportive, & may need some outside support himself-it will be difficult for him to see you recover. That's all ok, take advantage of every resource available :-)

I am nearly two weeks post takedown and have had no issues with leaks no diarrhea at all just normal bowel fuction ,everyone is different but even the doctors have been shocked that I have had no problems!
Good luck I hope everything goes well for you

8 months out, and I was still having more than just little leaks.... I gave up sleeping more than 2-3 hours at a time to minimize the damage.

As you can see from other people's experiences, you just never know what the outcome is going to be. Some good, some bad, and some in between.

Ad

I'm just shy of two years and have occassional leakage. It's easily controlled with just a pantyliner at this stage. It's so minor at this point that I hardly think about it.

i am 3 months out and had a lot of leakage for the first month post op, but things seem to have settled. i suppose there is some minor leakage if i eat something too late or too big a dinner before bed, but it's pretty minor. even if i don't wear a pantyliner, it's not much.

i had more, bigger leaks with the ostomy bag. And most monstrous leaks of all with UC!

No leakage ever (except early on when I thought it was just a fart)! This from someone who had a 30+ hour childbirth and they thought I might have leakage problems.

I have had J pouch 20 years, new to site, am a pro at some things like using Always thin pants liners-pads at all times, desitin and calmoseptine. However my leakage is worst than ever and am in the bathroom every 1.5 hrs on average, including at night. If I sleep 2-3 hrs it is extremely rare but so wonderful I really appreciate it. However, I am very positive, still run a business, more part time since diagnosed with follicular lymphoma 7 months ago,
play tennis 6 days a week and am a nationally ranked tennis player. Yes, it can be done, like some others have said it is all about attitude.

I do need help with ways to sleep more and am trying ilex again but it doesn't stay on very long for me. Are those bidets really worth it, with the warm water and drying function?

I had my takedown in April and have only had a couple of night leaks but only a small amount that was contained (I always wear a pad - always). Sometimes if I sneeze or am out walking and cough there is a tiny leak. Otherwise no issues at all. I wake up if my pouch is full in the night and during the day even if I need to go I can hold onto it for as long as I need to - no more desperately running to the loo as with UC.

Heres my problem I will also throw into this thread that I have been experiencing over the last week or so.

I cannot seem to get my trips to the bathroom down over the night. I go to the bathroom about once every hour in the middle of the night. Last night I ate at 4 oclock in order to try to make sure I wasn't going a whole lot all night and again I went at 11 pm, 12am, 1:20am, 3am, 4am, 5:30am, and 6:30am. My pouch never seems to fill all the way up like it does when I'm awake. I think one reason i have one or two leaks some nights is the number of opportunities for nighttime movements.

I'm losing my mind here, I also awake with a strong urge to go, like my j-pouch is forcing it out- is this the spasms people talk about? Can this issue be helped with lomitil?

Thanks

casie I don't blame you for staying away from the biologics. They do work for some, but if they don't it can be hell. My daughter tried the biologics for 6 months and in that 6 months she ended up with a second case of cdiff, severe malnutrition, she got the flu really easily and blood clots - all in six months - she had the first surgery in june and the takedown in August and while not perfect, she at least will NOT be susceptible to some awful illnesses and potentially fatal. If you ask her she wishes she never tried it. She is probably right.

I only had a few minor night leaks in the early days- like the other posters seemed to be related to passing wind. I have had a stricture and pouchitis in recent months and have still did not leak. I hope my expereince gives you some confidence about continence post takedown.

Once again, thank you all so much for the information. I really love having access to this site. So it seems that everyone is different in respect to leaks and things of this nature. I'm ok with it. My boyfriend is becoming ok with everything as well... it's just slower for him to accept and/or understand everything so I try to leak (no pun intended) information to him a little at a time. In all honesty, I am the same way. He loves me. I never knew that youtube had so many videos on illeostomies and people showing you how to change a bag. Numerous other vids of people who have had j-pouch surgery, etc... These are so helpful. What did people ever do without the internet and this massive support system?
Thank you everyone,
Casie130 (Kim)

Casie -- the most important bit of information I can give you is to really, REALLY try not to get caught up in the 'what ifs'. It's a waste of time and energy. Although, I believe knowledge is key -- there comes a point when you become saturated and everything you are reading is negative. Being well informed is necessary -- but, too much information can be detrimental. Always remember that you have this place to come to with anything that comes up after surgery.

My pouch is 16 years old. In the beginning I had nighttime leakage -- actually I had a bit of it during the day at times, too. I wore a pad, for about a year (much longer than necessary -- but, I was afraid). Also in the beginning, I slept with a towel under me -- just in case. As has been said...I figured out that watching what I ate/drink after a certain time of day helped. You will come up with your own, personal routine that helps. And as I said -- all you have to do is log on here, post a question and ask for advice and you'll get suggestions/answers. You are not alone -- we are all here for you. Hugs!

Clouseau, I'm in the same situation as you are. 19 year-old pouch, and have recently restarted night-time wakeups due to leakage and accidents. They seem to occur at intervals: I can go months just fine, and then months that aren't fine. The bidets are SO worth it. They make clean-up at night so much easier.

Onwisconsin, do you have these same spasms and frequency during the day? You may want to be checked for cuffitis.

Six weeks post take down I have never leaked. I now also sleep between 2100 and 0500 without even waking up. However, if I eat a meal in the evening then yes, I do wake up for bathroom visits and have a painful unpleasant night. As much as possible eat small and often and don't eat a meal after 4pm. For me the first week after takedown the incontinece was so bad I thought it just wasn't going to get better, but it does.

quote:

I cannot seem to get my trips to the bathroom down over the night. I go to the bathroom about once every hour in the middle of the night. Last night I ate at 4 oclock in order to try to make sure I wasn't going a whole lot all night and again I went at 11 pm, 12am, 1:20am, 3am, 4am, 5:30am, and 6:30am.

This probably sounds weird, but have you tried eating closer to bedtime? With the UC, sometimes I would eat toast or a soft pretzel, something like that, before bed and I could get a few more uninterrupted hours of sleep. I don't have a jpouch, but with my ostomy I usually have more activity at night or output is totally watery early in the morning. Eating helps me thicken things up.