Scheduled for an ileostomy.

Hi Nater89 :)

1. Is there a smell/odor when the bag is closed?

Nope, I'm 34 years old, had my ileo for 6 months and have no odour when the bag is closed at all. My bag does have a filter on it that is supposed to be a way out for gas, but the filter doesn't work after about half a day of wearing a clean bag. But, there is definitely no odour. You can buy drops to put in the bag that help reduce the odour for when you are emptying the bag - but I don't really bother with this, everyone's poop smells!

2. How loud can the stoma get?

For the first few weeks my stoma was pretty loud, but it just sounded like a rumbling hungry stomach. Now, it hardly makes any noise at all, clothes help muffle noise, but even when I'm wearing something thin, like pajamas, I can't hear anything. There are a few times if I'm REALLY gassy that I can hear rumbling, but those times are fewer and further between as time goes on.

3. Can you ever wear tight clothes again?

So long as your stoma isn't being squished, you can wear whatever feels comfortable. For the first while you may be pretty swollen and tender and will want to wear loose fitting bottoms, but over time you can get back to your normal attire. You will be assessed for a proper stoma placement (avoiding folds if possible, a flat area, etc) and that helps with finding clothes that make you feel comfortable as well :)

4. Any pain due to food (for those with UC?)

I am careful with fruits and veggies, but so far so good. Sometimes if I overindulge in something tasty I can really full, but that happens with anyone.

5. How many times a day do you have to empty/does it fill up during sleep and leak?

I empty between 4 - 6 times a day, depending on how much I eat and what I eat. I empty before bed and can go 10 hours overnight without having to empty. If I wake up to pee then I empty, but I don't have to get up just to empty. I haven't had a leak ever, and once you find a system that works for you, you will be able to have more confidence and let's hope a leak doesn't happen! I crapped my pants prior to the ileo anyway, so when a leak happens I'll try to laugh it off as best possible.

6. Any advice and/or hints on what to expect pre/during/post surgery?

Try to do a lot of positive thinking, and find a strong group of people to surround yourself with to support you. Make sure you talk with your surgical team about options for pain management after your surgery. I had an epidural, plus the anesthesia, and a morphine pump post op. Be gentle with yourself and when things get hard, keep telling yourself that any pain and discomfort is temporary and it WILL get better.

Bring items of comfort to the hospital - your own pillow case, earplugs, and eye mask when you are sleeping, slippers that are easy to slide in and out of, a sealable water bottle (you will be drinking lots) so that if it tips over it doesn't spill, music, movies, that kind of stuff.

Best of luck and keep us posted!

1. Is there a smell/odor when the bag is closed?
No, there is none at all.

2. How loud can the stoma get?
In the first two months after surgery mine made a lot of noises about as loud as a tummy rumbling, but with gas a little nigher frequency (higher pitch) noise. Since then it has subsided to the point where i rarely get any noise whatsoever-- mine is normally quiet as a churchmouse even after big meals. Occasionally (eg maybe once or twice a week on average for a few seconds) there is a very slight gurgling noise that doesnt really penetrate through clothing. In normal settings it is not audible, but in a dead quiet setting one might hear a sound like a tummy rumbling for a few seconds and then it stops, in my experience.

3. Can you ever wear tight clothes again?

Tough one. I choose not to wear tight jeans anymore. I could, but I like the freedom lf letting it fill up and expand and not have to feel any need to empty if for some reason it isnt convenient for many hours.

4. Any pain due to food (for those with UC?)
No, but I use common sense to avoid wolfing down HUGE quantities of certain less digestable things such as nuts IN A SINGLE SITTING, and chewing them well.

5. How many times a day do you have to empty/does it fill up during sleep and leak?
I average around 5x a day to keep it from bulging much (if I didnt care eg was just home I bet I could be 3 x a day lol) but in the first 2-3 months after surgery it was higher, starting at 10-12 sometimes, gradually reducing over that time frame. It wont fill up in my skeep unless I eat a lot in the 2-3 hours before bed... Eg if I eat at 7 pm and go to bed at 10 I wont need to get up. If I wold down a hige dsert or snack just before bed then I will get some gas in my sleep that may require me to burp the pouch of gas once during the night, which at least requires me to sit at the side of the bed. I usually dont bother to empty it out at night even then, as burping the gas is enough. If I dont eat much in those 2-3 hours before bed then I usually dont even need to burp it.

6. Any advice and/or hints on what to expect pre/during/post surgery?
Realise that liquidy and higher output is normal, gradually decreasing, after the trauma of surgery. Get different opinions from different stoma nurses as well as forums like this on managing the change orocedure, which appliances and stuff to try or change to if you have any problems, etc.. Your stoma will shrink a lot in the 2 months after surgery and within 3 months or so you'll develop an easy routine, using precut wafers to eliminate the cutting and measuring. Dont sweat getting an exact hole size-- I find using an eakin seal to turtleneck the stoma through a 1/8" gap between the stoma and the wafer edge works perfect for me. Well, this whole forum is about this sort of stuff and you'll get lots of advise-- main thing is to relax and nit freak if it seems complex at first-- witin a few months you can change the whole thing in a minute or so, once every 4-7 days, so it is barely an afterthought. It jsnt rocket science but seems like it at first because it is so new.

Oh, re wafer changes-- I do them after getting up and emptying just before breakfast, around once per 6 days, and that is the magic time when there is no output for me. However I have learned to easily change it at any time, even when it is outputting like a volcNo, without issues merely by keeping a wad of paper towel bunched up onto the stoma as I change.

Post Edited (Probiotic) : 4/10/2014 3:47:00 PM (GMT-6)