Sunday, September 28, 2014

My Ostomy Story

October 3, 2015: Happy World Ostomy Day!  Not a day, I would've ever wanted to celebrate, but this year I can and actually mean it! 

I wish I could share some new and profound truth that Ive gained from my experience but the truth is Im left with many questions that I may or may not have answered this side of heaven. I can tell you that Ive experienced the truth of the promises in scripture that Ive known since I was a child.  Romans tell us that when we are weakest, He is strongest and that truth came to life for me  this past two years in a way I never imagined. 

A little back story is that I was diagnosed in 2001 with a digestive disease called ulcerative colitis. It is a chronic disease that is incurable apart from taking the colon. It causes bleeding ulcers to form on the colon and the symptoms can range from very mild to completely debilitating. This disease didn't take me by surprise as my mom and brother were both diagnosed in their early 30s as well.  Medicine managed my symptoms for years and I was able to lead a normal life. Around 2008, I went from symptom free to debilitating almost overnight and landing me in the hospital with my body shutting down. Severe vomiting, Bloody diarrhea, anemia, weakness, fatigue, migraines, muscle myopathy... The only medicine I responded to was an IV infusion of a drug called Remicade which is a very strong biological agent. As long as I stayed on this, I was able to stay in remission for about 5 years. 

Meanwhile, life went on and in 2011 we decided to adopt again after sensing a calling from God. When we discussed our decision with family and close friends, the question of my health kept coming up, which did make me pause and pray and rethink, but ultimately the answer I received was "Kim, I know your age, health and every thing about you. I wouldn't call you and not provide for you." So Laikyn came home in 2012 was healthy and doing well. It should've been the height of my life, but I had a nagging feeling that something wasnt right. We came home with her in June and by August or September, I was having symptoms between infusions. In February 2013, a week after we had our baby's first family birthday party, I went down. I went to school to prepare for a sub and collapsed in the hall with Rob rushing me to the ER. After several days of testing, my GI doctor determined I needed to go to The University of Louisville to my surgeon. They worked on me for about a week to get me stronger and then took me into surgery. It was planned that my colon would be removed and I would have a temporary iliostomy. This is the end of the small bowel pulled through a surgically created hole in the abdomen and then covered with an ostomy bag which collects body waste. She would also create a j pouch out of my small intestine which serves as a replacement for the colon. It would need 8 weeks to heal and then I would have it connected and the ostomy would be reversed. I already knew all the lingo, I had expected this for years and it was something I was scared to death to go thru but I felt prepared.  All I wanted was to get through the 8 weeks and get back to life as it was. I thought I was strong enough to handle it. 

The surgery day (March 4, 2015 ) arrived and I sat in prep shivering, crying and praying. The prep team came in and gave me some meds that would calm me and give me amnesia they said. It had the opposite effect on me. I began to talk and talk and I remember every word. I said I was just worried about my kids and I had to be ok for them. Then I told them all about Laikyn. They rolled me to surgery with me still talking about laikyn and her adoption and how this was not a good time for surgery.... On and on.. They tried to put oxygen on me and I jerked it off and kept talking. That must be when they had enough and hit the knock out button. Ha!

I still remember opening my eyes in recovery and the searing pain. I tried to scream but my voice was gone. All I could do was whisper for help. I've never known such pain. They told me I would be ok and the surgery went well but I knew it was wrong. The following days are a blur of trying to survive , manage pain and come to terms with my body changes. I remember the Wound Ostomy Care Nurse counseling me that my ostomy would eventually be my best friend because it was giving me my life back. I didn't believe her. When I was finally discharged, I was  told that the pain should be better over the next few weeks. That just never happened. 

About three weeks later, I began to have fevers and night chills followed by severe burning pain with every meal. Finally my abdomen turned red, hard and swollen and two holes began to eat through from intestines to skin. I was rushed back to the hospital where my surgeon told me I had  developed fistulas which are abscesses  that tunnel from the bowel  through to the skin or other organs. I was told we would treat for pain and they would eventually heal but it would be a long road. Suddenly my healing went from hard to impossible. I worked at just getting stronger and managing moment to moment but within weeks, I could feel everything draining out of me. My strength and courage went to anxiety and hopelessness. During a visit to my family physician, he said something that changed my outlook.   He said, "God never gives us more than we can bear". My answer was, "He does and He did." I went home and thought about that statement and realized that I was right and maybe that was my problem. I had been trying to bear it and prepare for it and be okay with it. Now it was totally and completely out of the realm of anything I could handle. My prayer changed from "God help me" to "You just have to take this because I can't. It was very freeing to admit total lack of control. I talked to my brother and his advice was, "Do something every day that you think you cant do. Pushing through the pain is the only way you'll get stronger. "  So I made the decision to attempt a return to work despite the pain I was in. It was the most horrible yet best thing I have ever done. Horrible pain and fatigue but best because I have never felt so completely dependent on God and out of control of my life as I did throughout the year. There were days I cried out to God all the way to work  and then wiped my face and went about my day and then cried all the way home. Somehow he gave me the grace to keep going. As I continued to live life and try to stay involved I began to think of all of the things about life that I just wanted back. They were simple things like holding my child, playing at the park with the kids, taking a walk.... I had wondered so many times why God let me get sick so soon after Laikyns adoption, but now I  think maybe that was part of His plan to keep me hanging on. 

The following September it happened again and another fistula occurred. I was back in the hospital for a few days to drain the fluid and again the decision was made to just let it heal. In October I had another major surgery to attempt repair of the j pouch. It was unsuccessful. I was at this point just praying for a miracle and trying to accept that my miracle may not be healing but just learning to accept this situation. Finally my answer came the following spring almost a year after my original surgery. I began to have severe bladder pain and my urologist determined a new fistula had eaten through from my bowel to bladder. I was taken back to U of L hospital by ambulance where I was treated for about a week with nutrition through a pic line and many pain meds until I could go back to surgery. This time she did a small bowel resection, repaired all of the fistulas and stitched up the bladder. I was in the hospital this time from June 10th - July 3rd. This surgery was successful in that I had no more fistulas and could go from wearing a huge wound pouch that constantly leaked to wearing a normal ostomy bag. That alone was worth the surgery. I still had the problem of the hole in the j pouch and had to make a decision whether to try to save it or give up on it. My doctor and I decided it would be best to take it out and make the ostomy permanent. This time I was ready.

Nine months later, in April of 2015, now two years after my first surgery, I went into the OR for what I hope will be my last surgery. My jpouch and rectum were removed this time. The surgery was supposed to take 3 hours and ended up taking 6 and 1/2 due to massive scar tissue causing me to need another modification to my ostomy. I developed another abcess as well as a bleeding issue after surgery so a supposed one week stay turned into 18 days, but I finally healed enough to return home for another 8 week recovery. 

It has now been five months since surgery and I am feeling better than I have in a long while.  Im not going to say that having an ostomy is all hearts and roses. There are moments that Im sad and frustrated with it all. I still have bouts with joint inflammation, and sensitivity to certain foods and stress, but overall I can say I love the final outcome. First of all, it was a matter of life and death and this procedure gave me life. I am teaching school, playing with my kids, taking power walks, eating normal meals again (with some limits) and doing all of of the hobbies that I enjoyed before my illness. I also have stopped taking ordinary days for granted! My doctor isn't sure whether my illness is Ulcerative Colitis or Crohns. My surgery is only a cure for UC. Crohns could come back anywhere in my digestive tract. Therefore, Im going to enjoy every day that I am symptom free and love the ostomy that gave me that chance, even when it doesn't feel so lovable. 

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