Now to answer the question, "what is an ostomy like?"

There are online groups and organizations that do nothing but address these kinds of questions, provide support, and are there to listen when you have quesitons. I am going to give you some links, as the information is too vast for me to repeat here without missing something:

United Ostomy Associations of America: http://www.uoaa.org/ostomy_info/whatis.shtml

NIH: http://www.nlm.nih.gov/medlineplus/ostomy.html

ASCRS: http://www.fascrs.org/patients/treat...enings/ostomy/

Ostomates: http://www.ostomates.org/


My initial experience with my ostomy was one of relief and wonder. It was amazing after having a gut at turmoil for months, then at rest for nearly two weeks, to feel it start up again, and to see the stoma actually move and do its work. In no time I was resuming actiivites, including taking in a Mariner's baseball game less than two weeks from my release from the hospital! I actually attempted my return to work at five weeks post-surgery! (I don't recommend this.)

For about 6 weeks things went pretty well for me. My partner helped me with barrier changes and was very supportive. I even thought about how, once I was stronger, backpacking and mountaineering would be simpler, with an easy to empty bag instead of having to deal with using the "blue bag" system required when climbing in National Parks. I would have to figure out how to secure my backpack so it would not rub on my ostomy area, but I was psyched!

It did not last for me because of rapidly forming scar tissue which changed the contours of my abdomen, and I started experiencing leaking because my barriers were not staying adhered. THIS DOES NOT HAPPEN TO MOST OSTOMY PATIENTS. I just grow scar tissue like it was a hot commodity . . . to this day it causes me huge issues.

I worked with three different groups of ostomy nurses on this issue, but it had begun to interfere with my half-days at work. I would sometimes arrive and have to leave right away because of a leak. My commute was 45 minutes in horrible rush hour traffic into downtown Seattle (notorious bumper to bumper stopped traffic on a daily basis) . . . and there were no facilities available where I could adequately change my barrier and bag. So a leak meant another 45 minutes home, and another 45 minutes back. I did this several times over the course of my three month attempt at returning to work. I would have helped to have an understanding and supportive employer, but they proved to be just the opposite.

That was 7 years ago. I had a j-pouch construction and my ostomy was reversed in the spring of the following year. For several months I had a knuckle ileostomy, which was harder to manage than the end ileostomy I started with, but they are easier to take down when the j-pouch is ready. Like I said, not everyone has the experience I did. I know of scuba divers and mountain climbers who you would never know wear an ostomy appliance . When they work, you feel free from your disease.

I suggest you find a support group or forum, either online or one in your area, you so can have a good knowledgable support system in place. If your insurance lets you choose, try to select a good ET/ostomy nurse by interviewing several, as this will be your best friend when and if issues arise. They are angels!



I am curous, though, if your pull-through is still functional, why not just have selective removal of diseased intestine? And I am also curious. . . does your pull-though have a reservoir? I am curous how a standard pull-though works!