Wednesday, April 25, 2012

Home Sweet Home

My hospital stay has come to an end...thank goodness. This has been one of the most traumatizing week and a half in my entire life to date. As some may already know, I got some really bad CT scan  results on April 9th. I had a consultation on April 13th with my GI to go over the results and come up with a game plan. That was one Friday the 13th that I sure won't be forgetting anytime soon. I expected to hear that it was time for surgery but I was in no way prepared to hear that I was going straight from the doctor to the hospital and that I would probably be having my surgery sometime within the week.

To say I was an emotional wreck by the time we got to the hospital would be the understatement of the year. I was a complete basket case. They had to start me on anxiety medication within a few hours of admitting me, it was that bad. Hysterical people, absolutely hysterical. I don't think Daniel knew what to do with me. I will say though, anxiety medication is some wonderful stuff. When they would give it to me in my IV it worked instantly. Between it and the morphine, life was pretty good. I'll also be the first to say, that if more people in this world would take some anxiety medication, the world would be a much better place!

Because I was once again so dehydrated and just completely malnourished, they couldn't get a good vein to start my IV. They finally got a small vein in my right hand that the IV therapist insisted could only withstand fluids and medication...absolutely no blood draws or anything else because it would blow like all the other veins before it. Little did we know that the surgeon had already ordered a picc line to be put in because he wanted me on TPN immediately. For those of you who don't know about picc lines, they are iv's that they start in my upper arm that are inserted into a larger vein leading straight to your heart. They consider it a surgical procedure and have to numb the area pretty good so that it doesn't hurt. They find the vein using an ultrasound and after they are inserted they do an x-ray to insure proper placement. Lucky for me I got to have the procedure done twice, because their first attempt didn't work. Thankfully they realized it right away so I didn't have two separate procedures. Even with the numbing medication, it was pretty uncomfortable this time. I was so glad when they got it finished.

Even though they were told no blood draws, they still attempted a blood draw out of my left hand. Apparently they needed to get blood from two different locations so they couldn't use just the blood from my picc line. It took them three times to get a vein in my left hand and I was still so dehydrated that my blood was flowing like syrup. In the few hours that it took to get to this point I had only received half a bag of fluids. I kept telling them that if they wanted blood to flow I should have been on my second bad by that point. Of course nurses don't listen to you half the time so I was stuck dealing with the extra pain.

My TPN was started that night and I was not to have anything oral. No oral medication, no food, no water, nothing until after my surgery. They started me on all kinds of medications, I received two blood infusions, and I was hungry. But all was good, I had anxiety and pain medication.

I met with my surgeon on Saturday where I was told that my surgery would take place Wednesday. Those were the longest few days of my life. I've never had surgery of any kind and I was absolutely terrified of what was in store for me but I knew I had no choice and that it was going to happen whether I like it or not. I will say looking back now, that the mental preparation and leading up to the surgery was worse than the surgery itself. Don't get me wrong, this hasn't been a walk in the park, but mentally I was just a mess. Once they came to get me for my surgery things moved quickly. They wheeled me down, allowed me to use the restroom one last time, and within about ten minutes I was laying on the operating table, arms outstretched with a mask being placed on my face. I remember absolutely nothing until the next morning.

The pain the next few days was pretty gruesome. They took out my ng tube the next morning and then took out my catheter on Friday so that I would be allowed up and out of bed. Lord help me, getting in and out of bed was a chore. Pain medication does not make moving around easier let me tell you.

I knew that I was pretty sick, the doctors knew that I was pretty sick, but reality was that I was really, really sick. My GI doctor kept telling Daniel that Friday that I had severe Crohns. I don't thin my surgeon was even prepared for what he found. They cut out a foot of my intestines, and the damage to my colon is so severe that he was forced to give me an ileostomy bag and a mucous fistula bag. I currently have two bags attached to my ride side where my waste and infection from the fistula drain out. I have been told that the damage is so severe that I should be prepared to have them for the next year, at that time we will discuss reversing everything. I'm also still dealing with kidney issues because of all of the damage my Crohns has created so sadly, I'm not out of the woods yet with everything. I will have follow up CT scans in the upcoming weeks to check up on my kidneys in case something needs to be done with them.

They removed my drain from my incision site Monday, and even though they said it wouldn't hurt like a mother. My staples are scheduled to be removed this coming Monday and I am dreading it. I honestly asked the surgeon who visited me on Saturday, an associate of my actual surgeon, if they could knock me out for all of this stuff because I just couldn't handle anything mentally or physically anymore. I had had enough with the pain. I assure you, I will be drugging myself prior to this appointment in hopes that it helps.

I'm still very uncomfortable with the thought of having these bags. They've started me on depression meds for everything and I pray that they kick in soon. I've been told it could be few weeks before I notice a difference.

Everyone keeps telling me how great I am doing and how proud they are of me, but I don't feel great and I don't feel proud. I think I'm still in shock over everything and I'll be the first one to tell you I've had my pity party moments. Moments of hysterical crying because I am just overwhelmed with the thought of these damn bags and having to change them and drain them throughout the day. I've read that it will get easier with time and pray that it happens quickly. I will have a home nurse for awhile helping me get used to changing the bags and I will begin seeing a therapist to help with all of the mental challenges that I face. I've been a mess for awhile but this just took me over the top. When the nurse who admitted me Friday asked whether I had suicidal thoughts because of my condition and I replied yes, the room got very quiet. I don't think Daniel was prepared to hear those words come out of my mouth. Thankfully I'm not suicidal in the way of actually taking my life or thinking of ways to do so. I've just wished death upon myself and I guess that's just as bad. I praise God that I have my two daughters because they truly are the reason why I have gotten out of bed every morning for the past year or so. I'm scared to think of what I could have done without having them as my motivation to live.

After a day full of drama at the hospital yesterday I demanded my discharge papers that afternoon. After even more drama I was finally discharged around 8:30 p.m. or so and was home by 9:30. I'm glad to be home and I feel the improvement in my mobility everyday but I'm still so frustrated at the thought of these silly bags that I just cried myself to sleep last night. The bags haven't been changed since Saturday and they skin around the stoma and fistula are irritated and burning. This was part of why I demanded to be released yesterday. My first home visit with the nurse will take place today and my bags will finally be changed...I can't wait for a little bit of relief.

I would like to thank everyone for their thoughts and prayers during this time. It's not only been stressful on me, but Daniel and most of my family as well. My mother-in-law is taking four days a week off of work to care for the girls, and my cousin Heather comes to our house on Wednesdays to help take care of the girls and will take me to appointments when I need to go. I'm unable to lift anything over ten pounds for the next six weeks so I can't care for the girls at all because I can't lift them. I've had a great support system over these past several days and I'm very lucky because of it. Even though I am going through this very weird stage in life, I am very blessed. I am blessed to be pretty healthy compared to some, and I am very blessed that I have such wonderful friends and family. I love you all.


  1. Oh Katie, Katie, Katie. Reading this was so painful to me and brought tears to my eyes. I just hate it that you're going through this. You are so incredibly strong. I know you still have challenges to face with all this and that you're going to handle them all so amazingly. What an incredible woman you are. I am, and have been, praying for you and your family.

    1. Thank you Cassie. I hate going through this as well but I keep telling myself, what doesn't kill you only makes you stronger. I'm well aware of the fact things could be so much worse than what they are so I count my lucky stars everyday. Thankfully I have a great support system, they make this process much easier to swallow and take in.