Thursday, July 19, 2012

Two steps back?

One week ago today, Alexis had surgery to remove her colon, and a temporary ileostomy was created. Since the surgery itself was done laproscopically, she seemed to bounce back fairly quickly.. pushing herself to walk to the playroom the day after surgery, going to the bathroom all by herself just a few days after that, and eating real food just 4 days post op.  She absolutely hates when I tell her shes a tough cookie, but she really is.
Alexis and Stoma Sue

But, here I am, just trying to make it through the day with my head still attached. Alexis has little bursts of energy, but for the most part she spends most of her day laying around. She still isn't eating and I still find myself forcing her to drink(pre-op, she would drink ALL day long!). Her output has slowed down, which is nerve wracking..but I am trying to remind myself that she isn't necessarily taking much in. She doesn't have a fever, and she isn't vomiting or in pain.. but it's hard not to be concerned. Against her wishes, I have changed her opaque pouch to a translucent one so I can monitor her stoma color as well as peek at her output when I see fit. I know I can be a little overbearing at times, and she hates it, but I want to know the second something is wrong (if there is something wrong, that is)

I just wish I had someone to tell me that all of this is normal. I called and talked to the nurse and she said that loss of appetite it normal, but why all of a sudden is she drinking less? At the hospital she was running around non stop, and now she is laying around more.  

If anyone can give me some insight, whether or not I should be more concerned than the nurse is letting on..please oh please let me know! I so badly just want things to be normal for her!


  1. I felt the same way after my first surgery, but after a few weeks my appetite came back and I was drinking more again. My biggest issue was I knew that more food and drink meant more output, and I struggled with that. Does the output bother her? If so, letting her have the bags back that she can't see into might help her desire to eat and drink more again.

  2. I just changed the bag about an hour ago after constantly removing the opaque bag to check out her stoma and to see how much output she had (as its mostly liquid..and there isn't much to start with. She doesn't like seeing the output, but it doesn't really bother her (if that makes sense!) Its comforting knowing you felt similar, thanks for sharing!

  3. Hey there, I just commented on the previous post - She might also be sensing your nervousness and that could make her hesitant? Try to take your minds off it with other activities, maybe a story or a movie? Wait a while, and then just slip her a drink with no comment or pressure. Best wishes :)

  4. I hope your precious daughter starts eating and drinking!

  5. Hi Tara,
    I'm thinking of Alexa and your family! Such strength! I had UC and had the surgery back in 2001. I remember feeling a little nauseous between week 1 and 2...I hope that she can get some fluids in her soon! Still, to this day, I get dehydrated easier since there is no large intestine. Just to give you a good story, I lived with UC for 7 years before they did the colectomy. Since then, life has been amazing...I met my husband (then boyfriend at 20 years old) when I had my last flare and he was with me through the whole ordeal (he would kiss me and make me laugh as a reward when my bag had some gas, etc). We just had our second child 4 months ago and I'm about to start studying to become a physician assistant. I'm changing my career from music after being a research assistant for IBD and realizing that this was much more fulfilling to me! I will keep your family in my thoughts! Just take things day by day. (also, there are some cute pouch covers online at weren't around 10 years ago!).