OMG, you guys, so long story short, I was dx'd w/UC in '94 @age 23, had the J-Pouch Surgery in '98 (the FDA didn't approve the biologics, e.g., Remicade, Humira, etc., until 2000. and Remicade was the first one, I recall). And I, like all of you, had loads of blockages, pouchitis, SEVERAL MAJOR SETBACKS in the years following.
So fast forward to January, 2019: I was hospitalized for six months consecutively. I had gone into the ER with excruciating abdominal pain (you guys know the drill), and I didn't return home until June. Looooong story short, I had a volvulus (twisting of the sm intestine) and my colorectal surgeon told me that if I had waited a day more (to go to the ER), I'd probably would've been a goner, as gangrene had started to set in.
So it was complication after complication, requiring 8 surgeries, endless invasive procedures and tests, excruciating pain for about 1/5 of my waking hours (on many occasions, IV Dilaudid/Morphine barely touched the pain!) and the isolation and fear...I could go on...
SO fast forward to today: It's been a year and a half since I've been discharged, and while I'm 75% better than I was since then, it's been SO FRUSTRATING/CRAZY-MAKING, as A) We, by definition, don't absorb calories and nutrients as well as those with colons, B) Every time I eat, I get cramping or even pain in my abdomen and C) I have to run to the bathroom a million times/day, under 'normal' circumstances, but by trying to stuff myself with extra calories from Ensure, etc., it only escalates.
Has anyone else experienced the same, in that it's hard to gain/maintain a healthy weight, when you have a J-Pouch ??
Thanks in advance for reading this, and I appreciate any input/advice that you may have, or even if I can just vent, or, commiserate with someone with a similar problem.
PS I hope everyone is staying safe during COVID!!!