I wish we had heard back from the person who started this thread. I have FAP and got j pouch at age 23. I am now 52. Lots of problems along the way, but also times when I did really well. Now I finally quiet working as I just couldn't take it anymore. I know exactly how you feel about "all I do is poop". No one else would get this. If I eat...I poop shortly thereafter and it's always been this way. I could make it last longer when I was younger - doesn't work anymore.
I am going to look up K pouch. I really have zero interest in another surgery, but I too have pretty much stayed home for several years just to be near the toilet. It's depressing and a cycle of "try hard to eat this or that" - sometimes it works, sometimes it doesn't, try to be positive, etc. Yep - already on Zoloft. Rx major depression and PTSD. I never did apply for disability - too ashamed. How on earth would you explain this to a judge?
I am lucky as my husband is very supportive. We live on half what we used to and he is a teacher. We are two people with masters degrees living on one teacher's salary now at this age. It's hard, but we manage. We downsized, drive old cars, and no vacations anymore. We save and don't spend. At all. It's not that fun when you were used to having just enough money to take a vacation once a year, fly to visit family, etc. - that's all gone. That said, I know many in the country are dealing with this due to the economy. I know attitude is everything and I try to make the best of things - I do a lot of knitting, painting, reading, and netflixing. I know we are not promised an easy life. I know people go through so much worse. But, it does help to hear from others out there who are going through this. It's relentless and it is exhausting. I truly believe as the years went on that no matter how much "they" say you get plenty of nutrition through small intestines..that eventually it just doesn't work as well. Getting older with the pouch just makes it harder. Energy is so low. I think that's what I miss the most - life energy. I also cope by trying to help out with people who are dealing with issues who live really nearby and I can go help someone in need and then get right back home to my bathroom! I used to contribute so much in my job as a school counselor. I quiet at age 45 after a botched hysterectomy (they perforated my small intestine) - emergency surgery, NDE, then got bowel blockage, hospital again, etc. I kept a going and then sort of had a breakdown. That's when I quit work. I would imagine wounded warriors go through way worse...and the government promises them all kinds of help ...and then you hear the horror stories of how lousy the VA is. So, I think this is life. I think we knew what life was like prior to the pouch and even during the early years of the pouch (if it went well for awhile) - and then we got older and it all just adds up and at some point, it feels like "how is this life?" The secret has to be to detach from an idea of how we thought life was going to be and living the one we have as best we can. And to forgive ourselves that we can't be the superwoman we thought we could be. I'd appreciate any replies as I'd feel less alone. I'm not gonna give up - I couldn't do that to my family. Thanks to all who wrote. It truly makes me feel less alone.