What in the World is Ulcerative Colitis?

Today I sit with IV pole to my left, bottles of Ensure and Gatorade on my right and blank computer screen before me. So much of me is fighting this deep feeling of frustration and anger and the pathetic thoughts that so many people ponder of “why did this happen to me.” But the truth is, I'm not any more special because of the unfortunate circumstances that have happened to me. I am simply human, which means I am going to struggle in this life... and it's taken me a long time to figure that out. And as enraged as I want to be right now that I finally am home from the hospital but cannot be or play with my daughters because I am permanently on the verge of puking my guts out and hooked to a saline drip, I have to choose to acknowledge what I know deep inside (and has taken me a long time to learn): I don't have to be a healthy mother to be a good one.

To tell you how I got here, there is no other way that I can think of how to share this melodramatic journey than from the beginning. So, here it goes.

2007: Just married the love of my life (Jon). Started to not feel well, started bleeding when I went to the bathroom, was diagnosed with Ulcerative Colitis (an autoimmune disease that basically makes your colon one giant bleeding ulcer). I had no idea what that meant but it really didn't matter to me because I was able to keep it under control with standard medication.

2008: Moved to Italy and began teaching English, started to feel unearthly tired... so much so that I fell asleep on a student, but tried my best to ignore this strange sense of fatigue and bleeding.

2009: Back in the US, birth of my first daughter (Lucy), symptoms got worse during the pregnancy but again was able to control things with medication.

2011: My second daughter (Isla) was born... my body began to deteriorate like I never thought was possible. Days of feeling exhausted turned into days of laying curled up on the bathroom floor feeling like my stomach was about to rupture (which I later found out was a pretty accurate feeling). I could no longer work, do daily activities or take care of my children in the way I wanted to and had to learn how to rely on others. I sought expert opinions, upped my medicine to the maximum dose, tried every diet under the sun, tried homeopathic medicine, and began to max out on steroids which only made me mentally unstable. Nothing was working but something had to be done. After many tears and tough decision making, I started chemo. That only made me even more tired (which I thought couldn't be possible), more nauseous, led to a short haircut to accommodate my thinning hair, and then led to pancreatitis and another hospital stay.

What happened next is significant (only now do I realize this looking back).

2012: I was now making weekly trips to Cedars Sinai in order to see the top G.I. doctors in world and face alternative options. After looking at what my new future might look like, I cried for hours one night convinced that I was dying of something much graver and could not accept the idea that I was one of those people with severe U.C., one of “those” people that have things like their colon removed. I prayed for these other options to work, and gained a peace by telling myself I would never have to be one of “those” really sick people who end up having no other choice but to have a colectomy.

With that new feeling of confidence, I began exhausting every option of treatment there possibly could be. I tried weekly infusions of Remmicade, a medicine derived from mouse protein which ended I ended up developing a severe allergic reaction to and nearly died from. I tried Humira, weekly injections which lead me to develop another autoimmune disease, Lupus (a whole new can of worms). I tried experimental medicine, clinical trials and even strange prayer meetings.

I was now at a point where there was nothing left but the ultimate fear: a colectomy.

How did I get here? I did EVERYTHING I possibly could. It seemed so unfair and far too unreal for me to accept, so I didn't.

I continued to spiral downhill, leading to hospital stays and and 911 calls after blacking-out from loosing so much blood. It wasn't until September that I made a phone call to my Mom one morning to take me to the hospital... only this time I knew I probably wasn't coming back with all my organs. I tearfully hugged my girls and left. Two nights later I had emergency surgery to remove my colon which was only hours away from rupturing (which most definitely would have lead to death in my situation).

I woke up, looked down and saw what would consume so much of my life, my ostomy. I cried, no sobbed, for weeks. How could this be my life? I used to make fun of people like me. I thought I would never be able to go anywhere or see anyone again.

It's strange to me now, but I was so afraid to let anyone know what had happened to me. I was so used to hiding my disease... I would put on makeup, go out for a few hours, tell everyone I was “fine” before coming home and crashing. I remember being parked in a CVS parking lot, so weak that I didn't know how I was going to actually get out of the car to get my medicine, and with two crying kids in the back seat, I answered the phone only to tell my business partner that I've never been better and will see her Saturday.

So now I was pooping out of a bag... how could anyone ever look at me the same? How could anyone ever look at me without disgust? How was I ever going to hide everything?

I never had much chance to figure all that out before I started feeling really sick again, but this time it was different. I knew something was really really wrong.

After finding I had contracted C-diff enteritis (a deadly bacteria probably contracted from the first surgery), I went back to the hospital and grew incredibly ill. I knew this was serious after hearing some of the nurses talking about me, and I knew this was different by the way Jon quietly held my hand one night and didn't say a word with a forced smile trying to reassure me. The realization came to me that I might never see him or my darling little girls again, that I could leave them abandoned in this world without a wife or mother, and I couldn't bear the thought of how selfish and superficial I had become by trying to hide everything and by becoming consumed with how others saw me. I had to make a very conscious decision to see myself through God's eyes, how he created me and to find my worth not in my appearance but in how I loved and served others. The funny thing is, the people I cared about most never even looked at me and saw the disgusting bag that I would only see. Jon saw a beautiful, strong wife and Lucy and Isla simply saw their Mommy who loved them. It's a shame that I let myself miss out on that because of my own insecurities.

Well, once again God spared my life and I recovered from the C-diff, and I am happy to say that I am the 10^th person to ever contract this particular strain of C-diff in the small intestine and I am the 4^th person to survive it. God is faithful.

Once I accepted my new ostomy, I was able to live life again and enjoy simple things like being able to go to the grocery store, take the girls to the park, and sip wine in the evening with Jon on the back porch.

December 2012: Three months after the first surgery, I returned to Cedars for the second of the 3-stage surgery. I am blessed to be able to have a “j-pouch” created through these surgeries so that at my last one I will have the bag (ostomy) removed and I will be able to poop like a “normal” person. During this surgery, they removed the rectum (the colon is already gone), created an internal pouch from my small intestine and then connected that so I will have all the right internal plumbing. I went into the surgery healthy and the procedure went well. Everything looked good... until that strange night that changed my life. It is difficult to explain, so I will just tell what I remember.

I vaguely remember having a really hard time waking up from the anesthesia and hearing voices telling me to wake up and breathe (which went on for about 5 hours). (According to others, I was wheeled into my recovery room and was doing quite well, talking and sharing photos of Lucy and Isla with the nurses). My next memory is looking around the room (which was out of focus), seeing the lights of a Christmas tree (Jon had brought it in), and then trying desperately to make eye-contact with Jon because I hadn't been able to breathe for a while and knew I was about to leave the world of consciousness. I was unsuccessful. I immediately transitioned into... I don't know... a strong, warm, peaceful presence with God. I was with him, actually with God and I had never known such a sense of calm and reassurance. I don't know if I died or didn't and I won't say I went to heaven because I don't know. I didn't hear or see anything, but I do know that I have never experienced anything so real as that presence and peace with God. Clearly he spoke this to me “Laura, you are not going to die right now, and even if you did, I would take care of your children, they are mine.” I don't remember seeing anything, but it's strange because I do remember leaving and entering into a blackness. A cold, painful blackness, my body being thrown around, a tube shoved down my throat and voices yelling my name and telling me to breathe. I was in this weird state for a while until finally I was able to take a breath. I opened my eyes to a room of 30 plus doctors clapping and cheering that I was “back.” This was not so joyful for me though... I woke up in such fear not knowing if I was alive, dead or in-between. I was in excruciating pain, I can't even begin to explain the extend of it. I finally mumbled the words “Jon” and they brought him in. The doctors and nurses were still fussing about me and I had no idea what was going on. I finally was able to whisper “hurt” in hope that someone could help me, but a big Russian doctor with blue eyes held my hand and calmly explained to me that I was going to hurt, that they had to reverse the narcotics in order to bring me back. I still didn't understand and still didn't know if I was actually alive. Then I remember being asked to squeeze my right hand and push with my right foot. Success. Now they asked for my left. It didn't work. I didn't understand, but I still didn't know what was going on so I didn't even care at that point. I asked Jon over and over if I was alive, and after finally being convinced, he and a doctor were able to explain what had happened.

Because this surgery is so deep in the tissue and organs, they had to collapse my lungs during the procedure which lead to weakened lungs. In recovery, for some reason the combination of pain medicine had caused me to OD. Jon heard me gasping for air in my room, called the nurse who called a code blue, and after not breathing for about 5 minutes, they were able to breathe for me with tubes, and then finally the reverse narcotics brought me out of it. Unfortunately, this meant that I had deal with the pain of having had my stomach in a blender. For some reason, I was not able to handle narcotics. I wasn't even able to handle something as simple as Benadryl because it would stop my breathing, and so the next few days and weeks and I lay in agony wondering why I ever thought childbirth was that bad.

So, what does all this mean? Why did this happen to me, why did God save me, why did he tell me that? I had to make sense of it all.

The truth is, God directly addressed my greatest fear. Anyone who is married or has children knows how burdensome it can feel to live with the thought that everything that means anything to you can be taken away, or even worse, you could leave them alone in a world of hurt and longing. But as a Christian, that is simply not true. Ultimately, Lucy and Isla are God's and he will take care of them with or without me, and ultimately it is only God that I need in this world. Jon, Lucy and Isla are my greatest loves that I am entrusted with and am blessed to enjoy, but their permanence or mine isn't in my control. What a relief. I was so consumed with the fear of leaving them from the c-diff scare that I lost sight of the truth I gave my life to years ago, God, and that nothing can take that away.

So... here I am, the start of 2013. I am finally home (and my left-side paralysis was only temporary), but because I temporarily only have half of a small intestine (the other half is healing and will be working after the final surgery next month), I am malnourished and dehydrated so I am stuck to an IV pole. And how does this all relate to the idea of motherhood that I mentioned earlier?

My daughter Lucy's preschool teacher gave told me the greatest compliment of her the other day. She said that Lucy walked into class and proudly announced that she had decided that she is not going to be shy anymore... and then wasn't. The shy little girl who used to grab her Mommy's leg had overcome her fear and was able to respond to others' sensitivity and hurt with kindness. She, at the young age of 3 had figured out that much of life is about how you choose to be and act toward others despite your feelings and circumstances. Because of these trials, I have been able to show her that even when you really don't feel like it, you have the ability to choose happiness, to choose faithfulness, to choose hope, and that even when so much of life is out of your control, you always have the ability to choose to treat others with love.

Well, that's a summary of the last few years for many of you who have had no idea of what has been going on in my life. I only write this because I know that many sleepless nights I would scour the internet, reading people's blogs that were going through something similar and it really helped me. I hope this can help anyone experiencing anything similar with Ulcerative Colitis or other health struggles.

God Bless,

Laura