sleeping ????

Hi folks! I'm here on the ostomy forum now, not the UC forum! I will be getting a perm ileo soon, hopefully by March. This has been in the works for years now, so I know pretty much all there is to know about the surgery, the ileo itself, etc. BUT- one big question I have is the sleeping thru the night one- is it really true that I may find myself getting up 3-4x a night to empty my bag??? When my UC was really bad, I'd be up all night running to the bathroom, & I REALLY don't want to go thru that again. I've seen some ppl. suggesting things like "Well, stop eating by 3:00pm.." which to me makes NO sense- part of the reason I'm opting for this surgery is to be able to eat again without restrictions (aside from the obvious immediate post-surgery ones). And if I use Immodium to slow down output, you think 1-2 T of the liquid would do the trick? I see my surgeon on Feb. 12th to get a date for surgery- I'm actually excited about it, which is how I know it's time....!!!!

right, I know the end ileo tends to be more easily managed, thicker output, etc. But I've seen posters (here & elsewhere) with perm ileos who complain about the amount of nightime gas & emptying they do... I think this forum has a good measure of both loop & end ileo's- I've been browsing thru it for the past 5+ years in anticipation. ha! If you don't mind my asking, why did you go for perm ileo as opposed to jpouch? I'm not a jpouch candidate due to fistulas.

     Hi Eva, I remember you well.  Welcome to the ostomy forum.  I have had my ileo for 2 1/2 yrs now.  If I happen to wake at night, I will empty for good measure, but I usually get up to pee..lol.  If I happen to sleep through the night, still no problem.  I only need to empty about four times a day.  This all depends on what you eat, how much you eat, etc..

     I have been using the Coloplast Sensura one piece bags.  They do come in two piece but I could never figure out how the heck they attach .  Maybe that is just my Polish coming through, but the ostomy home nurse I had for about a month post op couldn't figure it out either..lol.  I had problems with the Hollister bags breaking on me...twice!  NOT FUN.  Especially when at the Comedy Club at the Borgata...ugh!  Good thing I ate a ton of wintergreen mints before the show because that is what the output smelled like...nice fresh and minty.....good thing I didn't have fish .

     What hospital will you be having your surgery?  I had mine at Pennsylvania Hospital in Philly by Dr. Robert Fry.  He did an awesome job!  The stoma works like a charm.  You just have to remember to chew your food thoroughly.  I eat anything and everything my lil ole heart desires.  Best thing though, is being off all those meds!  The prednisone was killing me.

     Again, wishing you the best of health.  I know it was a tough decision, and it will take a long while to fully recover, but you will not be sorry.  God bless!

thanks everyone! Christine, I can't believe it's been 2 1/2 years already... I remember when you were trying to decide what to do over on the UC forum! I'm going to a local surgeon & hospital- both my GI & PCP recommended the surgeon to me, since it's a fairly straightforward proctocolectomy w/end ileo. I don't need anything fancy, just a well constructed, well placed stoma that will last! Which I plan to tell the surgeon... he's gonna love me, huh??? I'm concerned about the amount of gas, of course... but I guess it does go down over time, huh? And does anyone use Gas-X or Beano??? Do they help??? I hear the bags with the filters are good also. I hope to use a one piece appliance myself.

I had a temp loop ileo for ten weeks before my takedown. I would empty my bag maybe five times a day, only one of those being at night. Sometimes I would sleep through the night without emptying, though. It mostly depends on how much you've eaten before bed... personally I had a lot of late-night meals. ;) Also, a lot of times it is half filled with air, so if you can get the hang of a good "burping" techique for whatever equipment you end up with, then you may not have to get out of bed at all. ("Burping" the bag is where you just open the bag to let the air out without emptying any waste/output.) However, if I was awake and noticed a decent amount in my bag, I would usually get up and empty anyway just for peace of mind, otherwise I would not sleep as solidly for worry about overflowing (which never actually happened).

When my Stoma was new I had to get up once or twice a night. These days I can stay in bed 7-8 hours without emptying. The bag is VERY full when I get up though and easily the most foul smelling toilet visit of the day! I'd love to know how people manage to burp their bag, I have to empty the waste first as the air is trapped above it, this wouldn't be advisable in bed methinks

In the first few months you will have to get up to empty. But after that it should slow down. It will change depending on what and when you eat. If you eat a pizza right before bed like I'm doing right now, you will have to empty in the middle of the night :D If you don't eat anything after say 6 or so you might not have to. I always get up to pee anyway, but I've never had to wake up just to empty.

I had an end ileo from March to Nov.


I got up to empty in the middle of the night sometimes.
More so in the beginning. It slowed down toward the end so that I only had to get up in the middle of the night or an hour or two before I really HAD to get up for work maybe once a week.
In the beginning, I was emptying my bag every 2-3 hours, especially if I kept to the general rule of emptying the bag when it is 1/3 full. By the time I had the loop ileo created, I was emptying it a lot less. There were days it would be active and send me to the potty every hour for a few hours but that was something that only happens/happened every now and then. Usually after I had been nauseated. Technically that is my definition of diarrhea but it never lasted for too long (maybe 3 or so hours. I was even able to work around it without too much problem because luckily it never happened during a long meeting) and Imodium helped slow it down.

Most of the time it was a mixture of gas and output (poop).

Everyone here will tell you that we are all different and our bodies react differently to foods.
Well.. my tummy reacts differently based on pretty much what mood it is in.



For example. .. You will be told drinking out of a straw causes Gas. Never mattered to my body.
Coke products are supposed to cause gas. I drink caffeine free coke at home because I'm not supposed to have a lot of caffeine products for other reasons... Anyway.. The coke will cause gas sometimes. Sometimes not. You can't really predict what my body will do with a coke or similar drink.
Not only is everyone different, but in my case, sometimes my body is different.

Good luck.
Know that what you experience in the first few weeks is not necessarily what you will be experiencing a few months later.

BTW so far with my end I haven't needed to empty in the middle of the night. I wake up to pee and take meds, but from the time I go to sleep to the time I wake up my total output is only about ~100 CC, so if I were sleeping through the night I wouldn't need to get up just to empty my pouch.

Eva Lou-

I have a permanent ileostomy. Right after surgery before my body had gotten used to not having a colon, I had to get up a couple of times a night to empty. By six months, my small intestine adapted, and now I rarely get up to empty. I can usually make it 8 hours. I don't take Immodium on a regular basis (I just keep it in my kit for emergencies... like if I were to have extremely liquid output that would cause dangerous dehydration). Everyone is different, but you will learn what to expect from your body. I too was fearful of all the things I read about eating on a certain schedules, having to eat more smaller meals etc. I love going to the gym after work and knew I would never be able to eat dinner by 6 p.m. Fortunately, this ended up being a non-issue for me. I do not time my meals or avoid any particular foods and still eat a regular sized breakfast, lunch and dinner. I often eat dinner as late as 8:30 p.m. and often have a snack before bedtime. I eat exactly as I did when I was in my healthy pre-UC days now with these exceptions: I drink at least twice as many fluids so I stay hydrated, I chew my food better, and I eat smaller quantities of certain really fibrous items in one sitting (nuts, mushrooms, popcorn, corn etc.) but I can still eat all these things.

Though I don't have to get up to empty, sometimes when I wake up in the morning my pouch will be like a blimp on my belly (mostly air, some output), but (knock on wood) it has never exploded or leaked. This is because I experimented with products and found a pouch that sticks to me really, really well. Also the flange and pouch seal is very tight and secure so it never comes apart there either no matter how full of output and air it gets. (I use a two-piece Convatec Sur-fit Natura Durahesive cut-to-fit wafers and then the corresponding pouch).

The only exception to not emptying overnight is that sometimes when I am super active during the day and doing strenuous activities like hiking or backpacking, for whatever reason my output will slow down a lot. Then when I relax in the evening, everything comes out in a short amount of time. On these occasions, I will sometimes have to get up 1 or 2 times during the night.

When I had flares of UC, I had to sometimes get up over 6 times during the night (and even more during my most severe flare) and then sit on the toilet for a while in painful agony. I was excited about my surgery too and life with my ostomy is infinitely better than with UC!

Best wishes with your surgery!

-Heidi

you've all really put my mind at ease. I know that in the long run I am going to be much more happy & healthy with an ileo than with UC! It's a bit scary, but... there really is no other option at this point. And as usual, you guys will hear ALL about my adventures with a brand new ileo! Ha!

During the first month, I had a hard time getting used to my bag and had to wake up once or twice during the night to empty. I think I was paranoid about it leaking, but after the first month, I started understanding how my stoma functions and how often I'd have to empty. It differs from person to person but you get the hang of it after a while. I don't have to wake up at all anymore during the night, but if I have to go pee I just empty as well. You'll get the hang of it after a while. It's so much better than all those times I had to dash to the bathroom because of UC so many times during the night. I wish you a successful surgery :)

I have a loop ileo right now and find myself up once during the night, a others have said, mostly to pee but I always empty as well. I empty every time I go to the bathroom during the day ever there is just a bit in there as I don't like the bulge feeling. It takes me less time to pee and empty than it ever did when I was so, so sick with my crohns. There was a thread a while back about ho much we missed our "reading time" with UC and crohns! In and out now!

You will be so much happier and healthier after your surgery. You really will kick yourself for waiting so long!!

Good luck!!!