Ostomy Management 101

Well, I was finally able to get in touch with an Ostomy nurse yesterday. I am not impressed with the professionalism of the nurse who is supposed to be working with me, but this nurse was great. She arranged to see me at the doctor's office and helped me with my leakage problem. We were changing the bag about every three hours until this nurse was able to help. She removed the rod that was straight through the stoma which was there to keep it in place. After a week or so they can remove it and the stoma will stay put on its own. She also gave me a convex pouch which is much better than the flat pouches I was given upon discharge. Everything seems to be okay so far. No leakage and a good seal. I am so glad we did not go to the emergency room the other night. That would have been an expensive trip, all because the nurse who is supposed to call me back did not. Oh well! (She finally called this morning and left a message for me. There was no mention about why she did not answer her pages from the hospital)

I also went and saw the surgeon this morning. Everything appears to be moving along okay. I am rescheduled to begin my second chemo round on February 7th. First I will see the surgeon, then labs, then chemotherapy and visit with medical oncologist. I asked about the protocol for assessments longterm and the surgeon said normally it is a CT scan every three months for the first two years and then every six months after until year five.

Anyway, it is good to be on the road of recovery from surgery. I am a little stir crazy, but trying to keep myself busy. I am still limited in movement, but watching movies has been my treat. Hope to talk with everyone real soon!

Peace
Josh

Leaky Bag

Hey everyone, we were doing really well until Josh discovered his bag was leaking early yesterday... and we have changed it about 10 times since then (the bag is normally supposed to be changed once a week if everything is working right). We are so frustrated, we're following all the instructions as far as we can tell, we just can't get a good seal around the stoma. We've called and paged the ostomy nurse but this being New Year's Day and all, we have not gotten a call back. Actually, we've called all 5 ostomy nurses at UAB. Apparently none of them are working today. So now all we can do is either wait until in the morning and Josh can go to the Kirklin Clinic and get help, or we can go to the emergency room. His skin is starting to get very irritated, and the more we pull an old bag off and put a new one on, the more irritated it gets. I feel so bad for his poor skin. But we will get it figured out one way or another. Hope everyone had a happy new year and Roll Tide and War Eagle!