HI!
I never had the end ileo....only the loop (they are quite different from what I read) since I had a two step but I am sure someone will be along to answer your first question. I never had a bag explode even if it was filled with gas which happened sometimes. I used to have to get up once a night with my loop ileo to empty. Maybe you wont with an end. I never set an alarm. People will definitely not smell your bag and you won't either so don't even worry about that.

Why such a long wait until step 2?

I loved my end ileo. My surgeon has quite the reputation at CC for giving his patients a good stoma. I had the stoma for 9 months and had very little trouble with it. I used hollister 2 piece new image line and would empty the bag every time I had to pee. It never got too full. The only leak I had was when I was lying in bed and thought that my bag was just full of gas,and attempted to let the air out while lying down. Poor choice! It was all liquid stool. I had quite the mess to clean up. I rarely woke up needing to empty my bag.
For me I had a routine of changing the bag on Mondays and Thursdays and only had one leak when I tried to stretch out changing the bag an extra day.
The bags are fantastic and don't smell. Even people who knew I had an illeostomy often asked if I was wearing the bag because you really can't tell that it's there. I am a huge fan of the Ostomy Secrets underwear. They hold your bag tightly up and against your stomach and reduce the pull of having it constantly bumping around your leg.
You may want to check out some videos on you tube of people changing their bag before you have the surgery done. I think it helped me prepare mentally for it. I'd go back to the bag in a heartbeat if necessary.

The end is so much easier than loop I hated my loop. But with my end I set an alarm and 3 am I always emptied my bag. It becomes a habit and it is easy. I also used holister I like that so much better than coloplast. Oh and it was the 2 piece system before you know it you'll be able to change it in no time. Like you I had to wait a min of 6 months but ended waiting a year bc of school. I only had a few "accidents" with the end and it was early on bc I was just learning. I never once had an accident in public thank goodness.only Minor leaks that got fixed.

I also bought a "stealth belt" it was pricy but completely worth it. To this day people had no idea I had a bag

Thanks guys - so how many times a day did you empty it? Also, how to deal with the gas issue?

UC Danielle - I have heard about the stealth belt - is it comfortable?

Yes! I recommend it. I'm 24 and I coached softball for my college and it made me less self conscious and I could raise up ans catch high throw without worrying about my bag showing! It cost like 90 something I think

quote:

(1) How many times a day did you have to empty it?
(2) Is it true the bag will at some point explode no matter what I do to prevent explosion? And that it can explode, even if not full of waste, due to gas?
(3) How to prevent it from exploding?
(4) Will it need to be emptied in the middle of the night? Will I automatically wake up to do it or should I set an alarm?
(5) Will the bag smell when I am around people and to myself? Or it only smells when I empty it?

Hi! First of all, good luck. I am doing three step and I will echo what everyone else has said -- quality of life after step 1 is AWESOME. answers to qs..

(1) Once in the morning, two or three times in the afternoon/evening. If I ate breakfast at home and emptied before leaving for work, I would go through the entire workday, including eating lunch, without emptying. For the first month or so I always woke up in the middle of the night to empty, but by the end (I had it for about four months) I slept through the night.

(2) LOL um... My bag has never exploded in 6+ months. I have woken up maybe five or six times to a "blimp" on my stomach and rushed to the bathroom, but never ever ever an explosion. I am not a deep sleeper and naturally wake up a few times every night (I usually just pat my pouch to make sure it's OK then roll over and go back to sleep). If you're a deep sleeper, you MIGHT need to set an alarm for the middle of the night just to train yourself to check. I seem to wake up automatically when the bag needs emptying... maybe from feeling the weight of it. Hard to say.

(3) As above... empty frequently, make sure you check your pouch in the middle of the night. You might find that some foods produce a lot of gas (ice cream and soda are the worst offenders for me) so try to limit those at night. And I guess just don't be afraid of emptying as "insurance". I empty most of the time when I urinate -- not because I need to, but because my life is pretty active and I might be away from a toilet for the next few hours, so why risk it? It takes an extra minute.

(4) Haha, I guess I am anticipating your questions... Most likely you will need to empty at night at least at first. With an end ileo you have a great chance of being able to sleep through the night after the adaptation period (~6 weeks or so).

(5) It only smells when you empty it. I know it varies from person to person but my ileo output smells a lot better than a regular person's poop. I don't need to use any kind of bag deodorant or anything like that. IF you can smell output when the bag is closed, that can be a sign of leakage and suggests that it might be time to change your appliance.

Try to relax because a lot of it is in your head, to be honest -- for the first month or so with my ileostomy I constantly thought I could smell it and would even ask my mom to "sniff" me because I thought I smelled (moms are the best!), but no one has ever detected an odor. And I have some really mean friends who would tell me if they did (kidding... not mean, just honest).

Directly after one of my surgeries, I can't remember if it was the end or the loop, I had not had any output and was getting a bit worried. I woke up in the middle of the night and the bag was so full of gas that I knew if I tried to get up, it would explode. I was scared to move. I rang for the nurse and thankfully she arrived quickly. She carefully emptied it and all was well.

The only other time I had an issue was when I got careless about emptying gas. The bag was about 1/3 full, but had a lot of air in it. I just reached in and snapped the top open quickly. What a mistake! The air came out so fast that it brought the stool with it. Yuck.

Those a the only two mishaps, and the second one was my fault for being careless.