Hi, all. I'm at six weeks from reversal today. It's been a long, unpredictable six weeks. I'm using a bidet, alcohol free wipes, and creams, but there have still been plenty of aching butt days and nights. Lots of rectal spasming that feels like I'm back in the delivery room trying to give birth again only this time to a tiny poo baby. Frustrating to sit on the toilet for twenty minutes and not have anything come out after the first five minutes only to flush, walk to the sink, and immediately have to rush back to the toilet because NOW it's ready. I've really had a mixed bag so far--I've had some days when I've had substantial poos and have cleaned out in only a couple of quick visits and I've had lots of days where I am back and forth to the bathroom 15-20 times. I've only had diarrhea once and that was in the first week. I haven't had any accidents or smears yet (knock on wood) but I've definitely had urgency. I have had plenty of hours sitting on the toilet crying and pounding my fist on my knee because of the pain, but those times seem to be happening less often.
The spot where my intestines were rejoined still gets painful. I can feel a hard lump through my skin at that spot often and I think gas and stool gets trapped there. The oncologist who examined me today could feel the lump, too. I'm still sticking with a pretty bland diet, eating mostly white fish, plain pasta, rice, canned fruit, potatoes, oatmeal, etc. I'm trying to test drive a new food now and then, but even while on the bland diet, some days were good and others were miserable, so it's hard to know if it's what I ate or if it just would have been a bad day anyway. The surgeon gave me the go ahead to use Immodium when I'm going to travel or be out for the day and need to know I won't need to sit in a strange bathroom for hours. I have always tended toward constipation, so I've found that 1/2 to 1 Immodium slows things until I get home, but doesn't stop me up so bad that I'm miserable. If I take more than that, I'll have painful clustering all day the next day. I'm allowed to use Metamucil but all the choking warnings on the label freak me out. I'll get past it and probably try it beginning next week.
Creams do help the sore butt as does the bidet and a warm soak in the bath, but what helps me most seems to be sitting on a heating pad. Changing position on the toilet also is very helpful. I still use my Squatty Potty, but find that leaning forward almost completely with my chest on my knees gets things going and then leaning back with my spine arched against the back of the toilet finishes the job most times. Since I have hemorrhoids and a prolapsed bladder, I try very hard not to strain, but sometimes my body just spasms so violently on its own and I expect to see my insides hanging outside from the force of it. It's actually scary how strong it is sometimes and produces either nothing or a very small poo.
Anyway, I'm still hanging in there. I've had my share of "I can't do this" days and some "Things are getting a little better" days, but I don't have any predictability yet the way some members know they'll have to go an hour after eating or they'll be okay all day and spend hours in the bathroom every evening. I haven't reached that milestone yet.
Hope all is going smoothly for the rest of you.
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16