when will i feel that i don't have a plastic bag attached to my belly? 4 weeks today since i had my colon out,i know i am probably being impatient but i still can't get out of bed, off the couch or out of the car without discomfort, bordering on pain. not from "inside" but from the bag site(skin around site has all healed, using convatec mouldable wafer but thinking i might go back to hollister as the bag attachment to the wafer is easier).does this get better or will i feel like i have an appendage for ever more?feeling sorry for myself...........

Its been about 8 months since I had my colectomy and don't really notice my bag anymore. Now in the way I used to at least. After a while you kinda get in the groove of it all and it just becomes... natural, almost like there was never any other way. I still remember pooping and long to sit on the toilet and read a magazine but i guess it doesn't bug me as much. You don't think about it, you just do it. It does get better though.

As for the discomfort, you probably haven't found the right system for your skin and stoma yet. I've never used the moldable wafers before but alot of people on here swear by them. I've only used the hollister one piece that they gave me in the hospital and coloplast 1 and two piece systems. I have a loop ileo and I can go over a week with out changing and i've never had a problem with my skin underneath. The coloplast two piece adhesive coupling systems are great. the bags stick on with adhesive (duh right) to the wafer and don't bulge out more than the one piece systems I've used and its just peel and stick. I've never had a problem with the bags leaking. I have big bags for at home and small ones when I want to go to the bar and be a discreet as possible.

If I were you I would call all the ostomy supply companies I can find and ask for samples. Describe your stoma size and the type of output, mine kinda points down so I need a convex but stuff like that. They'll send you out a bunch of free stuff to try out. I don't think I have ever bought paste cause I always ask for some when I get samples. I still call coloplast and ask for samples, usually the same stuff I use now just to get free stuff!

Its a long hard road your on but you have gone through the worst. Its only up from here!!

I didn't really start not feeling the bag until I got the belt. That was really the biggest advantage too me, as I hated the constant feeling of having something attached to me. It was about 8 weeks before the discomfort started to get better. I was on pain killers for about 6 weeks after the first surgery.

thanks...all of what you say makes sense. i think i will try the hollister set up again, the bag is easier to attach to the wafer. in the shower this morning with the bag off and i see that the moldable wafer has failed and i can see the skin around the stoma, so may as well go back to cutting the wafer with hollister. also the skin under the white part of the wafer feels a little sore.....may reacting to the convatec glue?? thanks for the input and have a great day.

It took about 8 weeks to get my strength back and to start eating well and gaining some of the weight I lost. I would say you are half way there to getting rid of that discomfort. It also took about 8 weeks to get to the point where I didn't feel stuff coming out of my stoma or my stoma shrinking. At first I would feel a lot coming out especially when my stoma would shrink and get fat, I could feel it in the skin and muscles around the stoma.

Having a belt really makes a difference. I don't feel the tugging on my belly when my bag starts to fill. Plus feel very secure with everything I hours will go by before I notice it needs to be emptied.

Also if you are having discomfort when attaching the bag to the wafer once you check the wafer is the correct size before applying it to your stomach put the bag on the wafer first. Then put them on your stomach that way you won't need to push so hard on your stomach.

Scott

Hi Fiona,

I've had other problems, but it's been 8 mos and I still am sometimes bewildered by that "Appendage" feeling. Less now, finally, as I've learned things like how to poop in the woods (anew), but generally it's more comfortable finally because I've had to become so observant of my body. At first, it's hard to recognize what discomfort is due to healing after surgery, what to an ill-fitting appliance, what to a leak about to liberate itself into a full blowout, what to slightly eroded skin (which miraculously heals overnight with the right fitting wafer), and so on. Now I change at the slightest tingle that might be skin eroding, because it's uncomfortable, but more because I know if I let it go, I'll have a leak. I used a convatec moldable for a long time, but now get a better fit with a hollister two piece set up (the one Jason recommended before he left - new vent). I won't cut wafers if I don't have to, and the hollister is just a touch closer, whereas for me, the Convatek precut was either a smidge too large or too small. At first I hadn't the patience to try out so many different systems, but now each month I experiement with a sample while generally using my regular setups.

My belly was sore for a looong time - I think that part of recovery is highly variable. Now I rarely am aware of my stoma, but I can still feel waste flowing into the bag. I'm probably super vigilant because it took so long to get the right fit, the right bag shape, size, and then to figure out the best angle at which to wear it, all with an eye toward minimizing the tug, pain, anxiety. Having a belt does make a difference in how secure one feels, but it's uncomfortable in warm weather, and just more apparatus for me. I prefer to go with as little as possible. Have given up everything but stoma powder, the wafer, and the bag. I like Scott's suggestion of apply the bag to the wafer and then the whole setup to your belly, but I"m always paranoid about getting the thing in the right position, so while I used his method at first with a sore belly, now I do one piece and then the next.

I'm still searching for the right undies as my stoma is high and the bag sticks up very slightly above my waist. Where is yours? I found if anything rubs against my stoma or near the top of the wafer, thus tilting it a little and putting pressure on the belly, it's very uncomfortable. I alternate between wearing wunderwear below my stoma with the bag outside, and wearing waist-high cut grannie pants to go over the stoma and bag. Still nothing perfect,but infintely better than what I endured before having a permanent ileostomy.

I smiled at the idea of feeling that one has an appendage. I must admit to silly fantasies occasionally that somehow, something magical will come along to restore my body. Cell regeneration? Hmmm, at this point I don't think I'd experiment ANY further....

Barbara