Phattwoohie said...
cupcakespinkgal said...
I have an ileo not jpouch but I found a probiotic that helps with gas and I almost never have gas in my bag.
Saw your post saying you have an ileo and was wondering if you can answer a couple questions. Was the ileo procedure painful or something a person should be scared of? After it was done, did you regret it for any reason? How is living with it every day in all honesty? Do you find that you can live normally and go to things like say a concert, parades, etc.? Is there any activity you don't like or think might be a problem with an ileo?
Sorry if my questions sound ignorant, I don't know anyone that has one and I'm just researching all possible aspects of UC and the outcomes that I may face in the future.Everyone with a jpouch had at least a temporary ileo, I had a three step procedure so I had an end ileo and a loop, so I can give a little bit more perspective on life with an ileo than a person who had 2 steps, but of course, not the same as a person with a perm.
You can 100% do the things you mentioned with an ileo. I think the main thing to be concerned with, is how will you personally handle having one. Most people do very well, especially in the case where it's permanent. in the case of people expecting reversal, often we are quite anxious to get reversed. To be quite honest, life is easier without any type of colon issue. Life is easier when you're going once a day. The problem is that, most of us, who had surgery, for either a jpouch or an ileo, were never going back to functional, so for us, this is a much, much better quality of life. if we could get our childhood colon back, we would opt for that in a heartbeat. Anyone would. Unfortunately, there is no going back to that...
there are some considerations with an ileo. When I had mine, they told me, always carry a change of supplies. That means, somewhere, on your body, or in a bag, you need to have some items. I hate carrying a bag. To be honest, I didn't carry items with my ileo and I was lucky, i never had a full-blown leak where I needed to change in a public restroom. I have to say, if I did, I am confident I could have handled it, you get used to it and it becomes second nature very quickly, but yeah, worrying about
supplies in any way is not too ideal. We do worry about
them in many ways in our lives, from clothes, to toilet paper, to toothbrush... It's not too different from all that, just another thing you have to have on-hand all the time.
As far as what you can do, life is pretty much unlimited. You just have to keep in mind, you will have to empty more frequently than you would with a colon. You could go to the bathroom 6x a day to empty the pouch. Emptying can be a pain. It's not neat and formed, it's a process, and you learn ways to make it easy. It's got a pungent odor and it's very dependent on what you've eaten. people often carry drops to cover the smell. The bag can fill with air or look lumpy under clothes if you eat a lot. I used to almost always empty before I left the house, but sometimes if I was out eating, I would feel the bag and know it was filling and it would make me uncomfortable. It can make involuntary sounds. If you're in a quiet room, it can be embarrassing. A lot of these things you can avoid if you pay attention to what you eat & what causes gas...
Most UCers opt for a jpouch. We reconnect. After, we don't need to buy supplies. We still go more often than people with colons, but we regain control and we no longer have urgency. It kind of feels like a cross between the ileo and colon. We "empty", we don't sit around on the bowl waiting...
hope this helps!