I have the same questions as Liza.
Do any of you regret having a reversal?
How bad is the urgency versus having the ileostomy?
I've been on several meds since being diagnosed, ending with Remicade. I was on Remi for six months, then had a life-threatening blood loss. I was hospitalized with a hemoglobin of 5.3 and had blood transfusions and iron infusions. It was during this hospitalization (June '09) that we decided it was time for surgery. I had a total colectomy with ileostomy. My surgeon said my rectum looked good, so didn't take that out. I have the possibility of a reversal. He will reevaluate in about
a year and we'll see then.
I do feel much better, and am able to eat most anything. I have pretty much regained my energy. However, I am struggling with how I feel about
the bag. While it is nice not to be running to the bathroom all the time, it's taken awhile to figure out just what works best for me. I've had some problems getting the bag to quit leaking, but now have had some good luck using convex wafers and Osto-Bond (a skin cement). I'm now able to go a week without changing it.
I do find that I'm very self-conscious in what I wear. I still can't wear jeans without leaving the button unbuttoned, and even that is hard as my stoma is above my waistline and will sometimes "cut" the bag in half and the contents don't flow well to the bottom. I've been wearing mostly sweats so far. It also interferes with some activities where I can't just get up and use the restroom anytime I feel the need. (I play in pit orchestras for local community theatres.) The bag also seems to fill with gas and it sometimes looks like I'm pregnant on my right side! ;)
On the bright side, my hemoglobin has now been holding steady in the 12-range. I can't remember when the last time was I've been in the normal range! Also, I had labs at my hematologist's office last week and all numbers were normal. So it seems that it WAS my colon causing all my wacky numbers and need for blood transfusions, etc, over the last 2-3 years. I am prone to blood clots, however, and will be on Coumadin the rest of my life, but my visits to the hematologist are now being spread out longer than weekly now. ;)
So, I guess my main question is how bad is the urgency after a reversal? I think I'd rather go that route than have to deal with leaks, bloated bags, what clothing to wear, etc.
Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; i
ron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions
Post Edited (Pitz) : 8/7/2009 7:14:12 PM (GMT-6)