Calling All Experienced Jpouchers

For me I think it just took some time to learn to trust my body. I had to learn its new tolerances well enough so no significant attention was needed, and my body had been untrustworthy in that regard for many years.

Most days it isn't on my mind at all. The only time I am more aware of it is when I'm on vacation like this week. We are in Washington DC doing the whole tourist thing so we are out all day walking around. So I'm kind of making sure where all the clean restrooms are and trying not to eat too many bad things that might make me go more.

I am six months out, and I do feel the same way, to an extent. My mind is often focused on J, how he's feeling, and what might be making him feel better or worse. I figure this will die down with time as...
a) our pouches mature and settle over the first year or two.
b) we become more familiar with and used to the newer sensations and what our "new normal" looks like.
c) we learn how to treat and react to our pouches to get the best out of them, and this becomes routine.

I figure it will all start to feel pretty normal eventually, and we will stop thinking so much about it. I've heard it takes about a year to start feeling "normal" again.

I'm 17 years in, and it has been over 40 years since I had a healthy colon. So, my memory is pretty dim on what "normal carefree function" is. My first year post-op was highlighted by complications, but even with diarrhea, urgency and cuffitis, I was able to go places and do things. There definitely was a learning curve.

Time goes on and before you know it, you settle into a new normal. For me, it was all about looking forward, not back. Once I got over my loss of colon, I just decided to accept compromise.

Now, I just don't think about it much.

Jan

Thanks for the responses and instilling confidence. I'm sure over time I won't think about this daily and go on with my life.

I'm 5+ years out. I can say based on experience that after a time, the pouch just becomes your new normal. I can honestly say that there are many days where I really don't give my pouch a second thought. Obviously the "pouch awareness" is more prominent whenever you're having issues or going through the adjustment period, but once you settle into a routine it just becomes another part of your daily activity. I should also say that I lived with an ostomy for 2.5 years. While I adjusted to that, it was always at the back of my mind. With my j-pouch, even though I've had a few issues, I feel like I more or less have my normal life back.

Yeah, once you get past the months of your gut squirming around and reminding you it is there, the main thing is to forget about comparing j-pouch function to colon function. Apples and oranges; both fruits, but different.

Realistically, in the end, I wind up in the bathroom about the same amount, since I'd be in there urinating anyway.

You even get to the point where you don't count your BMs either. Part of it is getting away from frequent doctor visits, because they always seem to want to know "how many BMs in a day". Once nobody is asking, you stop focusing on it. But, part of it is also a conscious effort to accept and adapt.

Jan

quote:

You even get to the point where you don't count your BMs either. Part of it is getting away from frequent doctor visits, because they always seem to want to know "how many BMs in a day". Once nobody is asking, you stop focusing on it. But, part of it is also a conscious effort to accept and adapt.

Yes, exactly. I honestly can't tell you, most days, how much I go. Even days where I wake up and decide I'm going to make a conscious effort to count (because doctors always want to know EXACTLY how many times you go), I usually get caught up in my daily activities and lose track. It becomes secondary, like urinating--and I doubt how many times a day you count doing that!

My husband has had his jpouch for 18 years. He focused on getting his life back (or course there were near blockages that ended up in the er..which of course, focused on that and he had a bout of pouchitis) However, during this time we were raising our son(still are). I think he has done a pretty good job of it. He is my idol the way he has reacted to what has happened to him. Especially the dark days of colitis when he was on steroids and the colitis would not recede.

It's been 22 years with the pouch, 33 years without a healthy bowel, so I, too, can't really remember, but I was 19 when I had my surgery, and determined to ignore the fact I was previously ill. I am glad there wasn't any Internet back then (like today), because I had no time to dwell on things, and I just moved forward. While I approve of this site, and what it contributes, etc., reading too much about things and worrying, dwelling on the what ifs, and not trusting your body, can make for a stumbling block in your return to wellness.

My mom, didn't have a choice of a jpouch etc. She had a bag for about 50 years. It was either a bag or death. Alot had changed from her experience with my husband's.