Anything you can do to manage frequency?

[Ian]

My biggest worry about potentially getting a permanent ileostomy is the number of trips to the bathroom.

The inflammation in my colon won't go away so I won't stop bleeding, hence why this surgery may be on the cards. While I'm bound to start feeling worse as I wean off the barely-working Pred, I currently don't use the bathroom very often - on average, twice a day (the blood passes with these movements so I don't have additional leakages or anything). I also don't really have any other symptoms. No pain, no nausea, no bad gas, and I can eat/drink whatever I want - the last one has always been the case for me actually. Even when I'm flaring, food has never aggravated my condition. In fact having a bag is likely to make my diet MORE limited (avoiding hard-to-digest foods etc). Plus I've spent most of my time since diagnosis in complete remission.

I'll suddenly be going 6-8 times a day, every day, for the rest of my life. I can't get over how awful that will be. I'll be tied to the bathroom in a way I never really have been before (except during the odd flare). Forever. The thought of this depresses me so much, especially having to get up in the middle of the night which I NEVER do.

Unfortunately I think I know the answer to my own question but - is there ANYTHING you can do to reduce the number of times you have to empty? Apparently even if you don't eat for a long time, it still fills with digestive juices etc... honestly I think if I was potentially facing a colostomy I would be slightly less of a wreck, as they require less emptying. I can't stop thinking about how much this bag is going to rule my life. If I was older I think it would be a little easier. But I'm young, and doing unplanned, impulsive things where bathroom availability is uncertain will be impossible. As will nights out drinking with my friends.

Sorry to bring so much negativity to this forum. You're all so positive and supportive and I probably sound like a spoiled little shit. But I'm so depressed at the thought of this

 

[Christie]

Hi I have had mine for a year now, I dont have to empty mine through the night and to empty it through the day takes minutes honestly, it also only takes minutes to change it, as for not being able to eat things, everyone is different, I was told not to eat skin on anything, or mushrooms, sweetcorn etc and I now eat all of these, I do chew them a lot more than other foods and I havnt had any problems. I was a bit like you before and although mine isnt perminant it still worrys you like mad. It just becomes part of you and you get used to it very quickly, I know yr only 19 and the thought of it forever is an awful one. I get upset every so often over mine but mostly when Im going out clubbing with the girls and I cant wear what I want to but suppose its better for a guy (unless they want to go out in a tight dress), I wish you all the luck in the world and hope everything goes well for you x

 

[Nyx]

I have to pee more than empty my bag to be honest! So usually when I'm in there peeing I check things out and make sure Oscar's ok. And I've never been awakened at night having to empty. I have no activity overnight at all (unless I've got the flu or something, but that's not a regular occurrence). I wouldn't worry about not being able to go out with your friends clubbing and stuff. Like Christie said, it only takes a minute to empty and if you have a good system you shouldn't have leakage problems.

Good luck to you! It'll be alright...it's amazing what we all can adjust to if need be...

 

[CDDad]

Hi Ian,
Your concerns are totally valid so don't feel like you're being negative.
Like Christie, I eat aything now. I avoid corn and popcorn because they have the worst reputation for causing problems - but I have eaten both anyway. I eat tons of fruit and vegtables without problems. I don't even think about chewing now - I just wolf down my food like the old days.

Most of us are coming from a life of 20+ trips a day to the bathroom, so 6 -8 is not so bad! But, you have a different situation. Bathroom are much quicker now - no time to read at all. Just empty the bag and go - probably takes me 3 min. And I decide when I go, urgency is not an issue anymore. Unless I am being very active, and the heavy bag would be a pain, I can wait an hour or more to empty. So it's not like, quick the bag is full - must empty now!

I personally don't worry about reducing the number of times to empty. I just eat and let nature take it's course.

 

[Kris]

I'm new to the bag, but if it helps, I don't empty mine at night. Like Joe, before my surgery I was going 20+ times a day. This included night. I used to dream about laying in a sleeping bag with a pillow on my bathroom floor, so I wouldn't have to keep getting up. I love that I can sleep through the night now. Like you, I was also scared it would take me forever in the bathroom to empty the bag, but I was wrong. I'm getting faster all the time. It takes less time than most people spend pooping the normal way. How often I empty it also depends on what kind of clothes I wear. If my jeans are a little loose, it can get pretty full before I empty. I often empty when I urinate, because I'm already sitting on the pot and figure I might as well do that too. lol I hope this helps. You are NOT being spoiled by the way! It's a huge scary step. Hopefully you won't even need to worry about it. I can say that it is nowhere near as bad as I made it out to be in my head before my surgery.

 

[ameslouise]

Hi Ian - The thought of an ileostomy, with your lack of symptoms and day to day issues, must just be so hard to get your head around! Most of us, as we head to the operating table, have such a bad quaility of life on a daily basis we just can't wait to get it over with.

I'm with Cindy. When I had my temp - I was usually peeing more than emptying. Do you not pee 6 times a day?? If not, you are not drinking enough water, young lad!

Hang in there. Don't make yourself nuts trying to conjure up every scenario that will come about if and when you end up with a bag. Think about how great it will be if and when you are off meds, and you can get rid of your chipmunk cheeks!

xo - Ames

 

[Terriernut]

I most assuredly pee more than empty! I just keep my bag as empty as possible because the weight bothers me if theres even just a bit in there. But I'm still healing from surgery, so that's normal! I've only had to empty at night right after surgery, when I was on soooo many meds that it caused alot of the big 'D'. Oh, and when stomach flu was going around this weekend...I emtied once during the night. But mostly, it's just a couple of times first thing in the morning, and after I've eaten at night. It is not any trouble at all! In fact, it's alot easier than looking for a loo all the time! Or a bush! Or anything at all to hide behind for that matter! (at some point you lose any embarrassment...trust me) :blush:

Misty

 

[Jer's Girl]

What CD Dad said about not having time to read on the toilet with a bag cracked me up because it is so true! I am back to being a pretty normal Crohnie now (had a reversal several months ago) and have to sit on the pot for long periods of time most days, but when I had my bag, it was just in and out, usually just when I had to pee (you have to drink a ton of water when you have a stoma anyway, so you WILL NEED TO PEE!).

Like many others, I was in so much pain when I got my bag, that there really was no other option, and I had no pain and was able to eat what I liked when I had it, which really made the whole thing easier to deal with. I don't know how I would have dealt with it if I was in your situation. I'm so sorry you are having a hard time dealing with this. At least you are not alone!