Hi, I am planning on having a 2 step j-pouch in a few weeks and was wondering about the having an external pouch. I know it is discreet and all but do you actually feel the stool passing into the bag ?? and if so isn't that a bit odd ?? Just wondering how life is with that external pouch.

Hi, I have a perminent ileostomy (Wee Willie).

Yes, I can feel stool passing into my bag. Sometimes the only warning I get is a very warm feeling. Other times (depending on what I've eaten) I can feel everything pass through Wee Willie! Usually the only time I feel anything passing through the stoma is when my output is very thick, in which case I can feel every fibre, but mostly I don't know if my bag is full until I feel for it!

Hope this helps.

Shell

This message has been edited. Last edited by: Shell Worrall,

Exactly as Shell put it. Same for me. It is discreet so no one else will notice but I do get a bit unnerved if I'm out in public or with friends and its happening. I actually like to feel it because then I know I need to empty soon instead of having a leak.

Life is fine with the ostomy pouch in my opinion. I CAN do everything but I choose not to do many things. Its all about your attitude really.

As a young adult, most of my friends are well still immature (the way i like it, haha) so I don't exactly share the details with them. So often times, I prefer to not do activites such as going to the beach, playing sports, or spending the night at a friend's place. I always prefer to be at someone's house where a bathroom is nearby so I can empty when I need to (HUGE FEAR of leaks for me), and I go out and watch movies. At home though, I'm free as a bird with my family so I've been spending a lot of time at home.

Also, everyone is different with the ostomy and if you had UC, life will be WAY BETTER. I don't mind not wanting to do many things now because UC sucked, I couldn't do anything even in my own house. Hopefully in a week, when i Have no more ostomy, I'll be going to the beach, playing sports, and spending nights at friend's houses as I start to recover! Sigh, can't wait. If you are only having a temporary ileostomy as well, don't even sweat it because the time flies. I've actually just started getting the hang of this thing and when to change the bag and in a week it comes off! Haha.

Look at it as a transition phase! Good luck!

I found that thinking about getting the ileo was much worse than actually having it - and it is way better than dealing with UC. I have been without the bag for almost 2 years, but I do remember being able to feel things passing at times. It is an odd feeling at first, but like the whole process your body will adjust.

Hi there -

I have had a temporary for almost 8 months now (takedown next week - yeah!!).

I NEVER feel stool passing. In fact, when I do the "bag pat" to see if it's full, I am always surprised because I never felt anything going in, but sure enough, there's stuff in there every time.

I guess it's different for everyone.

I can tell you as a 27 year old woman, I was almost not willing to have this surgery because of the "dreaded bag", however, even with the extra four months (long story) of the bag, it really hasn't been anywhere near as bad as what I imagined in my head.

Good luck!
Lisa

Hi,
I had the 2 step surgery too. I hated my bag with a passion. I felt everything, and hated the whole experience. Getting it removed when I had takedown was the biggest high you can imagine! So my advice is: try to have the same attitude as the others who've replied here - accept this as a temporary stage, come onto the boards for advice, and just look forward to step 2. Give your bag/stoma an endearing name! Be friends with it and remember that it's giving you a new life. If I ever have to have an ostomy again, I know I'll have learned a lot about the importance of a positive frame of mind from Shell and others on this site. Good luck!

I have a permanent ileostomy. The best part about the bag is that I no longer have pain when I go.

The stoma itself can't really feel anything. I can touch it, and not feel much of anything--other than a tickle in the skin next to it.

When stools are passing, I can feel it. I do feel the bag begin to get a little bit heavier, but that isn't really a big deal. At night, I feel it when the bag begins to fill up with air. That can be kind of uncomfortable because it adds pressure to the surrounding areas. Other than that, I can't feel anything when it passes.

Very simple to me My end illeo gave me my life back 100%!
If my output is thick i feel it coming out.. really feels like nothing if that makes sense.. but when its liguidi dont feel a thing.
I agree most ppl over worry about it and when they get it and find out what system works for them its really just there and no issue... I would take a bad Illeo over any of my UC days!
Good luck and hope all goes well!