Ahhh... The dreaded end ileo.
I've had mine now for six years.
As I've said before I dreaded it too. I didn't want it.
But even after a short period I knew it was the right thing.
And now after close to six years it's just a part of me now. And it seems in my mind I've had it all my life.
My health and life have improved 100%.
Nobody wants an end ileo. Of course. But mine works and works well. I'm fortunate. I consider myself fortunate.
I know alot of people have problems with it. But the very first thing you have to do once you get it is accept and come to terms with it. That itself took me one month to do. It may take longer for others.
Coming to terms and accepting it doesn't seem like much but it's the beginning of it. Once you do that you will learn how to live with it and be happy and healthy.
There is only one thing I can say pre surgery. Ask your surgeon to give you a good long stoma. If it's possible. I did. Weird thing to think of. But it's important to have one that sticks out well.
From there you'll go through trial and error with appliances. But you will find one that works as I did.
I could keep the appliance (wafer and bag) last more than a week. I don't. I change once a week. Unless I have a leak. And they do happen. For me once in a while. I'm not perfect and I may miss a step when putting one on. But I feel I've gotten good at it. I changed last Sunday and it didn't last an hour. I missed one step. But it only takes me ten minutes to swap it out. It becomes second nature.
With what appliances they have now it's so easy to do. And it's easy to hide under clothes but it all just takes time to get used to. I'm happy. I wish. And it doesn't matter now. It had gone better. But this is it. My cure so to speak. I haven't seen a Dr in almost 4 years. About my issues with my stoma. Or any gastro issues.
I suffered greatly before and during the j pouch.
I don't miss my colon or pouch. I think I will live the rest of my life contently with my stoma.
When I say that. If you knew me personally. I'd be the last person to say that. I never thought this would be it.
It is. I can eat drink. And do what I want. I don't hurt. Or have a burning butt. Omgoodness that was bad. I don't miss 40 trips to the bathroom at work. I don't miss work. Lol. I'm retired now.
Thing is. When we get an end ileo. We can make it a good or bad thing. Positive attitude towards it is the key.
If you've had a temporary ileo. Loop. Just put that out of your mind.
An end ileo works the same but is different. I had a temp. It was miserable. An end ileo does not leak and if it does it doesn't burn the heck out of your skin. And all that. Been awhile since I had a temp..
Another thing is. My surgeon left everything intact to have another j pouch made up if I wanted to do it in the future. I won't. But you can also ask about that.
OK. I'm in a rambling mood this morning. Sorry.
If you do have any questions you can pm me. I'm not shy about it. I will answer the best I can.
There is life with an end ileo. And it's a good life.
Richard /mysticobra. You can call me Richard.....