Okay, so I have to vent first, and then I have a question towards the end of my post (but I won't blame you guys if you skim to my question .
Anyway, I had a 6 month consecutive stay in the hospital in 2019, whereby I underwent 9 surgeries and was on TPN for a year (six months in the hospital and six months at home). Basically, I had gone to the ER in excruciating pain in Jan of '19, for what thought might be a few night stay, yet didn't get released until June of that same year (ugh). It turned out that I had developed a a volvulus, or twisted small intestine (or whatever I have left of it), and after the initial surgery to repair it, everything that could go wrong, went wrong, hence, the 9 'corrective' surgeries. And ever since I was released, my pouch has been more active than EVER (I had my initial JPouch surgery almost 25 years ago at age 27, and while the pouch drove me a little crazy sometimes, somehow I was able to deal with it and it didn't seem as life-altering as it is now).
Within minutes of eating anything, I feel the urge to go. It wakes me up at least 5x per night, and even when I seem to empty (the pouch), I'll get back into bed, all snuggled up and warm, and then I have the sensation to go - AGAIN!!! (and that can happen several times EACH time I wake up, arghhh!!!!). So while I was probably going to the restroom 20-30x/day from my original surgery, for the past year, it's been more like 40-50x/day - even if only a little discharge or air/gas comes out. IT IS DRIVING ME ABSOLUTELY INSANE, and, of course, friends and family can't possibly understand what it's truly like, even when they sincerely try. Lately, practically everyday that I wake up, my first thought is "Ugh, another day of HAVING to eat." And how sad is it that eating (besides sex and sleep) is one of universal pleasures (seriously, who doesn't like to eat?) that's RUINED because of this disease and surgery, and it makes me cry, every single day. As a kid, I was always a 'good eater,' yet always remained thin/normal, as I was very active/athletic, but now, not only do I not derive any pleasure (or, very little at this point), I don't know how I can live another 30 years like this. I'm considering going back to an ileostomy (I had to have a temporary one for about 3 years, when my gut needed a major break, as I had developed an extremely painful fistula in 2000), but as most of you here know, the ileostomy just brings on a host of so many other problems (the skin breaking down was just ONE issue among many that drove me crazy on a constant basis). Plus, I'm divorced and 50 years old, so the thought of having to date with an ileostomy at this point in my life is truly depressing.
Sorry, I have one more thing to vent about, lol: : does anyone here have family members and friends who question your diet constantly, even though the reason we have to go so many times/day is due perhaps 95% because of the sheer VOLUME of food vs what we actually eat?!? In other words, while some foods may be more irritating than others for us, in various way, it's not WHAT we eat that make us have to go to the bathroom so much - it's simply because we eat!!! I swear, I feel like I'm going to strangle the next person who says to me: "Maybe you should see a nutritionist." Don't they realize that we practically all have PhDs in nutrition, at least in our own bodies, in terms of how certain foods might affect us negatively? (eg, I can't eat spicy foods because it badly irritates my skin on the way out). But that doesn't solve the issue of FREQUENCY of bathroom visits!!!
Ok, so here's my question (but thank you for reading thus far!) and it's mainly for those who have PERMANENT ileastomies, though I'm not sure how many here would have one (???): I'm wondering if when they remove ALL of the tissue, whether that resolves any 'urgency to go' issues (because even with the temporary ileostomy, I'd often have the sensation to go the 'old-fashioned' way and would often have to wear maxi pads for leakage at night). So I'm thinking that maybe a permanent ileostomy resolves that issue, in and of itself, by getting rid of all of the tissues and muscles down by the anus? Because at this point, I'm not sure that I have a choice anymore, as I feel like I'm prisoner of my home and bathroom Thanks in advance for any input, or even if just to commiserate with me...