Saturday, November 5, 2011

So weird

Yesterday I actually felt pretty good for the first time days. Fevers were much lower, I ate a bit more food, I even sat in a recliner in the living room and talked with my husband like a normal person. The home nurse came and removed my staples and observed while I changed the pouch. He was fresh out of nursing school and had never seen an ostomy except in videos. I made sure to explain everything I was doing and he asked lots of questions. He said he learned a lot from it, so maybe that will help someone else some day. Oh, yes....even the brand new rookie RN realized immediately that my stoma was not the norm. He kind of hesitantly asked me if it was supposed to look like that, so then I got to explain to him all the issues I've had with it. "That must not be fun." he said. Ummm, really isn't. I always dread the staple removal process. I know it's not overly painful, but it freaks me out none the less. So imagine my delight when he said something along the lines of "Well, I've taken out sutures before and I hear this isn't too different.". That's right....first time for that, too. I emphasized that I get really nervous and just asked him to use some extra caution and take it easy. He did a really great job. The incision looks good. There is still a bit of drainage where the hole is from the axiom pump, but that is to be expected at this point.

Going into Friday evening I was still feeling pretty good. Shortly before bed though, the wheels came back off and the overnight was full of Hugh fevers, sweating through my clothes, and just feeling miserable. At one point I jolted awake because sweat was running down my side and I thought the bag was leaking. It was fine. Throughout today I've just been trying to drink as much as I can, eat a little (haven't managed much), and go from dose to dose of Tylenol while fitfully sleeping. This, my friends, has been one miserable experience and shows no signs of letting up soon. I don't really know what to do at this point. As happy as I am to be home, I sort of wish I was back on H5 with my awesome nurses and aides looking after me. I definitely can't take care of myself and my poor husband is doing all he can. I have no idea how long this will go on. Right now it feels like no end in sight. I'm so exhausted and defeated. There aren't even words for it.


  1. I'm so sorry you are going through this rough patch! Can't they send an experienced home health nurse to check things out?

  2. Hi, Ann. I am going to call my surgeon's office in the morning and ask to be seen in the first part of this week. This has gone on long enough.

  3. Thanks for sharing your experience with us. You are a true inspiration for people with an Stoma. They think that life after Ostomy is of no use but you are just an example , how to live life. You people can use the Ostomy Lingerie. I think you will find it really helpful and you all will be able to wear your favorite dress at the time of parties and any special occasion. I hope so that it will be helpful for you.