Just an update--I decided to try Benefiber since it isn't gritty and doesn't thicken. And it has helped somewhat. I started by drinking it with my morning coffee, but found that made me spend part of my afternoon or early evening in the bathroom. I've now moved to drinking it before I go to bed and along with the other meds I'm taking (1/2 Percocet for another issue, Ativan, and iron supplements) I can usually count on a morning visit or two that almost clears me out. But unfortunately, I still have the unpredictability of several smaller movements later in the day. I've been thinking about making two adjustments, but I'd like advice. I was thinking about switching my evening supplement to Citracel or Metamucil since I've heard they are more effective. And if that isn't enough, I thought about taking Lomotil after going in the morning to see if that can give me the afternoon/evening free to have a life.
I have four grown daughters and between careers and marriages and schedules, it's hard to even get all of us together for a weekend. Now they tell me they want to do a major family vacation this summer, perhaps in Ireland and England. I'm not going to lie--it's a dream come true and a nightmare at the same time. I would love to spend ten days with my husband and children and their spouses exploring a new place, but even thinking about it gives me a panic attack. I need to get my shi* together before then, literally. The flights, the time spent in a rental car exploring, even dinners out, all something I can't do now and want desperately to be able to do then. I suppose I could just book the trip and then if things haven't improved dramatically by a few weeks before we leave, I could try enemas.
Some of my concern doesn't involve bowel movements (believe it or not). I also haven't recovered from the bad reaction I had to the Folfox even though it's been a year and a half. My blood counts, especially my iron levels, just won't bounce back to normal. I'm going to talk to my oncologist later this month and flat-out ask him if this is as good as it's going to get. I've always bounced back quickly from previous surgeries, but a year and a half after my infusion, I am still weak, tire easily, and generally feel like crap most of the time. My oncologist keeps saying there is something else going on with my body but he can't figure out what it is. Lovely. I exercise, try to eat healthy, I take vitamins, drink Smart Water, and I take an iron supplement every day, but I'm not feeling any improvement. So that's also a worry when considering a trip that would exhaust healthy people.
Any advice or suggestions anyone has for surviving a trip while dealing with reversal issues would be appreciated.
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
CEA 5/24/17 1.4