Wednesday, September 2, 2009

Ileostomy Care 101

When I was checking out of the hospital on Sunday, the nurse read through a check-list with me. One of the things she read was a list of things I was going home with:
  • prescription for pain meds
  • hospital / doctor contact information
  • pain management information
  • IV and drain removed
  • going home with ileostomy...
That last one made me laugh out loud, at least a much as I could laugh with a healing belly! It sounded so funny, as if it was optional! I started to say, "No wait, I've changed my mind, I don't want to take the ileostomy home." Then what would they have done??

Life with an ileostomy is different, to say the least, but it has been much easier to manage than I expected. If you are interested in human anatomy it is actually quite fascinating! The human body is an amazing creation and I have been given a peek into the normal process of human nutrition and digestion. It is incredible, really, what our bodies do on a daily basis!

I changed the whole appliance for the first time all by myself yesterday. It took me two tries to get it right, but I was pretty proud of myself! The bag has to be emptied several times a day. I feel like I am changing a baby's diaper! LOL! The bags they gave me at the hospital don't have a filter to let air escape, so it balloons up sometimes giving me the appearance that I am pregnant on the right side of my body! Hopefully, I will receive the filtered bags I ordered in the mail soon. My stomach is still pretty swollen from surgery, OK, really swollen! I look like I have a basketball under my clothes! I keep reminding myself that it has only been one week, recovery takes time. But you know how good I am at waiting...

I am able to eat a normal diet now. I just have to be careful of foods that are not easily digested which could block the ileostomy. So, no nuts, no apple peels, no grape skins, low fiber for now. And also careful of foods that cause gas - I think that is self-explanatory! I have to drink more fluids than normal since my body does not have the chance to absorb fluids in the large intestine for now. I will have to be careful to make sure I get the nutrients that I need that would normally be absorbed in the large intestine.

While my physical recovery is going according to schedule, emotionally I have had a tough day today. I guess maybe that is according to schedule too...

I am so tired of being the "patient". I am tired of hurting, tired of resting, tired of thinking about what I can and can't do, tired of spending so much time in the bathroom, tired of not being able to live my normal life. So tired of the focus being on "me". Lots of tears today.

And then I feel guilty - I know, intellectually, that I should feel grateful. The alternative to a temporary ileostomy would have been the spread of cancer throughout my body and ultimately an early death. So, I know that I have been blessed. I know that my cancer diagnosis and treatment have followed the best possible scenario. I know that. And I am grateful. But still...

The past three months have been so surreal. I feel like I've been in another body, on another planet. Every new piece of medical information, each new plan for treatment, every pathology report - they have all seemed so unreal. I still can't believe that I have really been living through this. This is me? I had cancer? Now what?

And knowing that I have a second surgery to endure, and possibly more chemo, it all makes me feel so tired.

I say all of that just to let you know this is reality for me. Don't worry about me. Don't try to fix it. Really, I'm fine. Emotional days are just a normal part of the process, and I certainly have mine! God's got this; and I am in His hands.

I read these words today from Sarah Young in "Jesus Calling":

"Accept each day just as it comes to you. Do not waste your time and energy wishing for a different set of circumstances. Instead, trust Me enough to yield to My design and purposes. Remember that nothing can separate you from My loving Presence; you are Mine."

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23

I am holding on to you, God, help me to wait on You. Tomorrow will be a new day.


  1. Hey sis. I know how hard this all is... actually, I can only guess... so all I can say that may make any difference is that I mourn when you mourn and I rejoice when you rejoice - and I am proud to say that you are my sister. Your strength and faith encourages me daily. So shed a few tears today - I will too. I love you!!!

  2. A friend shared your blog with me and oh, what a blessing. God is so good. My friend knows that I am experiencing some of the same things that you are, but nowhere near what you have been through. I have been a "patient" for three months also and am scheduled for surgery at the end of the month. I've only read today's post, but I can identify with much of what you wrote. I know that it was God's hand that led me to your blog. I thank God for you and your willingness to share your journey. I will be lifting you up in prayer.

  3. Sweet, sweet your brother said, you are strong, faithful woman and I am glad to call you my friend! You cry whenever and for whatever reason you want because you know that GOD HAS GOT THIS!!! I personally am glad the alternative did not happen to you!! I am not through getting to know you even deeper as a sister in Christ! And remind me to tell you something very interesting I learned through your grandmother's passing. Awesome lady by the way!!

  4. Laura...God is soo good...No More Cancer Cells...praise God. And yes I'd buy your book..what a title!
    I just love your open and realness as you walk this journey. I know you have a ways to go but know we are praying for you daily and know your in the best hands ever.
    Love you,

  5. Praying for you, Laura! Sorry today was a tough day. Thanks for being honest enough to share that. Praying faithfully for you as you take it one day at a time, as you rest in Him.

  6. Dear Laura,
    I get it, I do know how hard this is. Cancer throws our normal lives into the surreal. I think not being able to wrap your mind around a diagnosis of cancer helps us to keep walking forward. Cancer can attack and change our bodies, but it can never change our soul, the true essence of who we are. As so many have said, thank you for being brave enough to share your journey. Your faith, strength and sense of humor is an inspiration to us all.

  7. Laura,
    I am thankful today for the words that Steve wrote here....I have felt helpless thru your entire diagnosis, treatment and surgery other than to be able to pray for you. All the time I've wanted to do SOMETHING and I've felt helpless thru it all. And then I feel bad for feeling helpless because that sounds selfish and this isn't about me - who am i to feel that way when you are going through what you are going through! There are so many people out there that love you, I wonder if there are others who feel that same way too.

    His words here reminded me of God's command to rejoice with those that rejoice and weep with those who weep (Romans 12:15). And even from way over here at my house, I've danced and rejoiced on your good days and cried with you on those days that were tough. I'm thankful that you've allowed us all to do that with you because of your honesty and transparency in your blog.

    I'm weeping with you today!
    I love you!

  8. Bump in the road...bump in the road!

    This time next year its going to be over, done, gone and your going to be sitting in a booth at Barnes and Nobles with a big cup of Starbucks by your side signing your Autograph on my copy of the book you just wrote about Bob and Betty and your surreal journey into the world of cancer, suffering and miracles! I will be the first in line... after pushing the other 4,000 out of the way and don't think I won't. I do have the nerve to cut in line. :)

  9. I really like Libby's attitude. Another name for the book could be A Bump in the Road Named Bob. Hope to see you tonight at the Prayer and Praise Gathering. Jeanne W.

  10. Hang in there Laura! From one of my favorite songs, "God makes everything glorious, and I am His, so what does that make me?" Glorious, of course! You are glorious! Thank you.

    Debbi H.

  11. Thanks for the post. People should be grateful to the god and to the scientists that has discovered some of the most amazing medical inventions that has increased the life of human beings. If ileostomy or Ostomy care were not available then it would have resulted in the early death of human. People who had went through surgery and get their lives back must be thankful to god. People who are facing problem in wearing cloths may also take help from the Ostomy swimwear or Ostomy Lingerie that will help them in wearing their desired dresses.