Again, thank you all for your kind words! Today was a little rough, due to the non-stop cast of characters parading into her room overnight, she did not get one wink of sleep. Seriously, someone needs to clue in all overnight medical workers that the majority of people need to sleep at night, and a person in a hospital definitely needs rest! They also reduced her epidural meds by half, and she started having some pain so the pain specialist set up a patient controlled system where she could give herself her own medicine by pushing a button, it definitely helped, and she has pretty much been sleeping since 10:30a.m., trying to recoup the lost sleep from last night. So she really hasn't pushed the button to give herself the pain med because she has been sleeping. Her hematocrit was only 18 so she needed a blood transfusion, they are going to draw more blood in 2 hours to see if her levels have come up, if not she will get another transfusion.
Elephantpipe, I did pause when the anesthesiologist asked if she wanted an epidural, but he wasn't going to put it in until she was already out (so she didn't feel it going in), as hesitant as I was I was still more scared about
the pain she would be in after the operation!
Bookworm, she had the surgery at Mass General Hospital, in Boston. Her wonderful GI is at another one of the hospitals here in Boston, and of coursse he would have liked for us to have chosen a surgeon from the "home team," but he has also worked with the surgeon that we chose, supports our decision and told us we picked "a great surgeon." We consulted with surgeons at other hospitals (we actually did our consultations over a year ago, knowing that there was a possibility that she may need surgery at some point and we wanted to be prepared in advance and have a surgeon chosen so we weren't scrambling in case of an emergency) and ultimately chose Dr. Doody (seriously, with a name like that he was BORN to be a colo-rectal surgeon, no?!) because he had a spectacular "bedside manner" he very thoroughly, patiently and expertly went over everything with us, and my daughter, my husband and I agreed that we wanted him to do the surgery. He used to do a two-step surgery, but he explained to us that during a surgery about
16 years ago, he wasn't able to bring the small intestine close enough to the surface to do the temp ileo, and after working for a period of time trying to get the small intestine into the right position, the surgical team thought that there was certainly a good enough blood supply to the j-pouch for it to work and that a lot of time had passed and they wantedto get the incision closed so he decided to forgoe the ileostomy and just do the one-step, if it didn't work he would do another operation for the ileostomy. Well, long story short, it worked out beautifully and he has done the one-step ever since. The only exceptions (I think there were 3-5 times when a 2-step was done) were when he didn't feel there was an adequate blood supply in the small intestine for the j-pouch to work properly, and he explained this to us and said that is something that couldn't be determined until he actually was doing the operation (it is an
open operation, not a laparoscopic one) and saw the small intestine, if he wasn't confident there was an adequate blood supply he would do a 2 step. So we knew in advance that the odds were in our favor that it would be a one step operation but there was a tiny chance that it would have to be two step.
mom of 15 yr old daughter with UC, dx 12/07
tacrilimus, 6mp, asacol, colozal, remicade
prednisone 12/07-4/09, finally able to taper after lots of ups & downs, back on pred 1/10-6/10
The Maker's Diet was helpful but not a cure, also tried gluten-free diet acupuncture and reiki
sulfasalazine 1x2, iron, vit d3, folic acid, florastor, mucosaheal, wild oregano oil cycling on and off
Tried VSL #3, Natren probiotics, Iflora Probiotics, Align, turmeric, boswellia
1-Step J-pouch surgery 7/10, UC no more!