Ive had my pouch half of the duration you have had so far @ycrockpot,
19 years now, surgery was october 15, 2001. And, I understand your feeling of family not grasping/understanding every thing about our issues that come a long with not having the colon and the issues that are associated with having an ileal reseviour/j-pouch.
imparticular, neither of my brothers, both older, are versed in any medical issues at all. My mother, the only parent I have had for nearly 8 years now, is in her early 80's and with everything i have dealt with health wise pouch related and not pouch related, equally/alike i worry what will my life will be like after her.
I dont mean anything bad but some times i just wish my own mother could be like a good 20 years younger than her actual age so that i could have her around. Instead i was in my early twenties when i had to have j-pouch surgery and she was early 60's in age. It feels like those years just crept up and also flew on by.
With my oldest brother, late 50's, he not only doesnt comprehend any medical problems, but mentally he cant handle health issues and problems and finds everything "depressing"
While my mother always listens, i know she doesnt not always no how intense and upsetting things can be for me. I eat and have to go to the toilet immeditaley most of the time. My gastro has me on the mesalamine am and pm but that was for ibs-d issues and microscopic colitis and he said i had mild pouchitis upon last flex sig done october 7th 2020. Even with the ant inflammatory drug with a jpouch most of my life of having it the 19 years now alli really know as "my normal" is that i will have to go defacate immediately after eating. Most people on the outside, family or not dont comprehend what it is like to be in someone of our shoes. Others have no sympathy.
I have found over the years with my operation its hard to socialize in public. When times were good, no corona virus pandemic about and such. You just dont want to go to gatherings at restaurants or establishments and if you do you know their bathroom at said location will be your room for the night or day depending on the time of that outing. I completely understand and get you ycrockpot. It sucks, but i still consider myself a survior & also a fighter regardless of how crappy the cards i'd been dealt with really are.
I certainly get you and know how you feel and why. Our illnesses to an extent robbed us of years of our lives because they did not allow us to live in good health.
Best Wishes & A Happy New Year as difficult it might be and less than ideal due to the pandemic and such.
-Len