Hi dz20, I’ve had my K-pouch for 34 years and love it. But the year before the K-pouch I had the standard end-type ileostomy so I can compare the two. I was happy with the standard end-type, because it because it was the first time in 10 years that I felt healthy and ‘normal’ (not having to run to the bathroom with diarrhea). However, I didn’t like how it eroded the skin around my stoma and how risky it was to change the bag because it would spew unexpectedly. I also didn’t like how it would pass gas unexpectedly, especially in a quiet room! (Looking back now, I think I probably could have controlled a lot of this with diet). Then because I had to have another surgery, they told me this time they could do a K-pouch. I loved the pouch once it was established and I learned what not to eat. My first meal of a large plate of spaghetti with tomato sauce had me in the bathroom for over an hour wondering if I’d ever get it all out of the pouch because it was so thick it wouldn’t flow through the tube. No amount of irrigating would dissolve it so that it would flow! I also hate taking antibiotics for the same reason - the first couple of days on them thickens the stool so much that it doesn’t flow through the tube. (I’ve learned to drink prune juice and other juices if I’ve got to take antibiotics - it helps somewhat). I’ve also learned to be careful about the types of roughage I eat and how much of it. 30 years ago I was on a diet that had me eating a lot of carrots. I saw carrots coming out when I emptied the pouch, but didn’t realize they weren’t ALL coming out. Eventually my pouch started cramping and the doctor had me take flagyl for pouchitis. That worked for a short while, but then the cramping recurred and the doc finally had me leave the tube in and wear a drainage bag for 10 days. Well, after about 4 days, the carrot pieces started coming out and out and out! The problem wasn’t that they didn’t fit through the catheter holes, but just that there were too many of them to flow out with the rest of the food that actually breaks down and flows. Also I would suggest not taking any tablet-style of pill if it doesn’t readily dissolve in a glass of water. I was given a prescription for generic potassium tablets years ago, and after 10 days of taking them I siphoned one of them out of my pouch still whole and realized my body wasn’t breaking them down. I stopped taking them and it took a couple of weeks to get the other 9 out of there. The tube seems to eventually pick up things that are too big or heavy (yes, things do occasionally slip by). They’ll finally get stuck in one of holes and you carefully pull the catheter out and are able to get them, but don’t really know if there could still be some things in there without a scope. Keeping a healthy gut flora is important too so that you don’t get pouchitis. So I’d say the life with the pouch is great, but you have to be a little more careful with what you eat than you do a standard, end-type ileostomy.
By the way, I don’t know what others do, but I cut a few inches off of the length of my catheter and then attach a latex drainage tube to the end of it. This makes the whole tube length long enough so that I can sit on the toilet and the catheter/latex tube can drain out lower into the toilet, just above the water. By cutting off a few inches of the catheter and attaching the latex tube, my left hand is able to squeeze the latex tube (easier to squeeze than the silicone catheter) which helps siphon out the contents if the flow is a bit thick. (Kind of like milking a goat if you’ve even done that!)
Hope this helps you with your decision.