I'm sorry this is long.... but I am grateful for the chance to debrief!
I am 2 months post reversal.
I am going 11-15 times a day; the last few days were all 15 times. 4 of those have been at night. (I was going 20-24 times a day for the first 5 or 6 weeks.)
I have a part of a day that feels great; lately it's been mornings. (I eat cornflakes most mornings, cream of wheat occasionally. And, darn it all, I have my one cup of coffee. I used to drink 3. One sits fine; more than that is a no-no.)
Lunch is eggs and a piece of toast at noon, or maybe a tuna sandwich, or leftovers.....Dinner is 5:45 or 6; chicken or fish, potatoes or rice, and a non-gassy vegetable or baked apple pieces (no skin). I'm usually feeling really hungry by 8, but I don't eat anything after dinner.(I do drink water in the evenings.)
3 in the afternoon I feel horrible gas pressure, and have spasms of this on and off the rest of the day. As valli described, it's intestinal pressure and also pain inside the rectal area. If I am out in public I need to know where the restrooms are because of urgency - I can let out gas, but sometimes I do that and realize stool is going to follow, ready or not!
During the night, I can let out gas, but again sometimes I realize I need to get to the bathroom. Sometimes I've had to get up only twice, but more often it's 4 times. I don't mind twice, because I usually need to get up to pee that often anyway! lol But the 4 times, especially because they are preceded by my being awake with this discomfort and gas, leave me tired during the day.
My experience of major, major gas only started up several days ago. I am trying to ride it out to see if it's a fluke or actually a pattern before calling the doctor. I've been taking Metamucil, one small dose, at lunchtime, and my surgeon had said that sometimes folks found Metamucil gassy... so DH is going out today while I'm at work to buy Citracel, which the surgeon recommended, to see if that is better.
I am wearing a Poise pad in my undies, and most days I soil those a few times because of the gas/poop urgency and I don't make it to the bathroom in time.
I had a lot of skin problems with my loop ileo (perastomal pyroderma gangrenosum) and an "almost" hernia (the intestine had almost but not completely broken through the stomach muscle) and these things were horribly painful, so I am grateful to not be dealing with that any more.
I figure that at my age, and having had 6 months of chemo, recovery might be a little slower for me, so I am still hopeful.....but sometimes it does get me down!
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18
Post Edited (songlady) : 10/18/2018 6:34:21 AM (GMT-6)