ytcrockpot,
Glad I decided to visit the "J-pouch Group" again. I've been a member since 2011 I believe and haven't posted or commented in a few years. I find that I become a little more depressed when I see all of those like me going through difficult times. I guess the positive, is knowing that I'm not alone and I do believe having this forum is extremely beneficial. I would love to hear from "medical professionals" that aren't trying to sell me a drug or miracle formula, but I understand this website probably operates on a minimal budget and is managed by an individual. (BTW, who ever you are...Thank you!)
Anyway, kudos to you "YT" for making it 40 years post J-pouch, it's a testimony to your grit and determination. I hope it provides you with some comfort knowing you are not alone in how you are feeling. Although I am just going on my 11th year with a J-pouch, and dealt with pretty severe UC for about 10 years, I certainly can relate to some degree.
About a year after my final J-pouch surgery I decided I could no longer continue working. I had a good paying job with SSA. The down side is that it was so stressful I believe it's what helped push my body into a flare-up from which I could not recover. Anyway, the biggest reason for deciding to stop working and apply for disability was due to extreme fatigue. I would get so tired during the work day that I was falling asleep while trying to complete face-to-face interviews with customers! (A large part of this fatigue was that I would essentially fast all day long to get through the day without multiple BM's and then eat too much after work that would cause me to be up several times through the night using the bathroom.)
Just realized I'm giving too much info! Sorry, just know you are not alone. I especially get frustrated feeling like no one, especially family, really understands the daily struggles our situation imposes. I have a very loving and understanding spouse, but even she sometimes says and acts like I'm being over dramatic or complaining for no reason. It hurts, but how could she ever really know, right?
Please hang in there, you give hope to many knowing it can be done!!
Blessings, Lewis