I know that a large part of my posts on here are about my health problems, but it has been a big part of my life for the last 7 years. Until I was 18 years old I was a normal, healthy person. The biggest thing I ever went to the doctor for was sinus infections. You never expect that you will be the "sick one." But the next thing I knew I was having blood transfusions and colonoscopies, being hospitalized, hearing the word "disease," learning which pain meds work the best and with which dosages, etc, etc. Even though it's not what you planned, you have to go on with your life and take it one day at time.
I have been writing this blog for 3 years, but I thought I would briefly go through a timeline of what has happened, for myself, and for those who have not known me for the last 7 years, here it is, from the beginning.
June 2006-Diagnosed with ulcerative colitis after being terribly sick my whole freshman year of college. Hospital stay #1. Stay 3 days.
October 2006-Bad flare up, steroids not working. Hospital stay #2. Stay 5 days.
Admitted again to receive medicine that needed to first be given in an IV. Hospital stay #3. Stay 3 days.
November 2006-March 2007-I tried many different medications that would work at first and then stop working. Even 100 mg (that's A LOT) of prednisone didn't do anything anymore.
April 2007-Visit a surgeon in SLC who confirmed meds weren't working and I needed surgery to have my colon removed. Very sick again. Hospital stay #4. Stay 4 days. This time IV meds did NOTHING, and I knew I needed surgery too.
May 2007-Surgery in SLC. Hospital stay #5. Entire colon is removed, a jpouch formed, and temporary ileostomy made. Everything goes well for the most part, but I had a couple bumps. Some breathing issues and being able to eat and hold down solid food. Stay 8 days.
The day after coming home I woke up with a 104 degree fever. Back to the hospital. Had an infection and blood clots. Hospital stay #6. Stay 6 days.
2 days later wake up throwing up. Go to the ER, cannot find anything wrong. 2 days after that, wake up throwing up again, and later woke up in terrible pain. Go to ER and taken by ambulance to SLC. Admitted to ICU. I had a bowel obstruction and my adrenal glands were failing. (Side effect of steroids). Hospital stay #7. Stay 6 days.
August 2007-Go back to SLC for reversal of ileostomy. Everything went really well, no complications. Hospital stay #8. Stay 4 days.
I started my junior year of college about 3 weeks later. I did well for the most part. I experienced pouchitis for the first time a few months later. Very similar symptoms as ulcerative colitis. Antibiotics always kicked it. I was glad I had had the surgery. I could eat things that used to make me very sick. I could focus on school without being so sick.
May 2009-Graduate with a Bachelor of Science in Dietetics. Very proud that I accomplished this with this terrible disease.
August 2009-May 2010-I lived in Boise and did my internship which required working all day, one day of class per week, and countless assignments, case studies, papers, presentations, etc. I actually felt pretty well most of that year. Except when I caught the flu from my nephew Nathan. haha.
May 2010-January 2011-Start to have problems more frequently. I started to lose weight and was not feeling well.
February 2011-Hospital stay #9. Stay 2 days. The doctor did an upper and lower GI scope, CT scan (after which I threw up all the contrast right in front of my niece Jenna, poor girl), ultrasound of gallbladder, blood work, etc, and we couldn't find why I was having more pain.
A few days later I had some tests came back that I had done a couple weeks before, saying that I had rheumatoid arthritis. I started an immunosuppressant to treat it and found relief.
2 weeks later I met my dear sweet husband and went on our first date. :) :) :)
March 2011-Have surgery on my sinuses to help the chronic problems I had had all my life. Went home the same day. The surgery helped me a lot.
April 2011-See a PA at the University of Utah hospital in SLC for a second opinion. My GI doctor sent me there because we couldn't find any answers. We changed a couple medications to see if that would help.
July 2011-Chris proposes and we are engaged. :) I did well most of the summer.
October 2011-Chris and my mom take me to the ER exactly 1 week before our wedding. I was just having lots of pain and was a little obstructed. They helped clear it, I felt better, and was sent home. This was the first of many ER visits over the next few months.
We had a wonderful honeymoon in the Bahamas and I felt well the whole time.
December 2011-Back to the U of U for a scope. Dr states that she found inflammation above my pouch, in my small intestine, which meant that I actually had Crohn's disease. I was told I probably should have never had my colon removed. I started a medication called Cimzia, that is in the same class of medications as Remicade and Humira. It was a shot I gave myself. I saw improvement in my joints, but not my stomach.
February 2012-After several other ER visits where I was sent home, my doctor directly admitted me to hospital when I called him one morning complaining of severe abdominal pain. He was not on call, so other GI doctors saw me. We tried steroids, etc, but did not feel any better. Hospital stay #10. Stay 8 days. The doctor finally sent me home because I actually ate something. The next morning I was in the ER again in lots of pain, but the ER doctor thought that I was just drug seeking, didn't do anything for me, and sent me home.
March 2012-Chris and I and his dad traveled to Logan, Ut to talk to a family friend knowledgeable about some alternative methods to treat Crohn's. I was willing to try anything. By the time we got to her house I was in tears, and begged to be taken to the hospital. This was probably the most pain I had even been in in my ENTIRE LIFE. It took quite a bit meds to even take the edge off. TheY did a CT scan but found nothing wrong and released me. We stopped at a gas station on the way out of town where I threw up several times, and again begged to go back to the hospital. Chris convinced me that they would just send us home again, and that we just needed to get to Twin were my doctor was. Chris' dad drove the 2 1/2 hrs home and I laid on Chris' lap in the backseat on the way home. I was able to sleep a little, but it was probably the most agonizing 2 hours of my life (up until that point). We were not in the ER in Twin very long when we were told my doctor was on call and was admitting me. Hospital stay #11. He did a scope later that day and said that my jpouch look ischemic (not receiving blood supply), and that he was sending me to SLC. We were flown by life flight the the U of U. I guess you could say that was Hospital stay #12. The first 10 days I endured countless tests and procedures to try to find out what was wrong. I was not able to go to the bathroom all of this time and my stomach was as big as a basketball. During this time I had a scope done and woke up in extreme agony (from all the air they pumped inside of me that I could not let out). The next 2-3 hours topped the pain that I had been in in Logan, and turned into the worst pain I had ever been in in my life. I cried and cried and cried, threw up, cried some more, I was sweating, then would get goose bumps, and kept thinking I couldn't take one more second. And then one more second would of course go by. My mom and Chris just stayed by my side. On the 10th day, they were doing another scope (using C02, not air, so it was not as painful) and punctured my bowel. So I went into surgery that day (which they planned to do in a couple days anyway). It was found out that my jpouch was twisted, not in the right place, diseased, and not receiving blood supply (hmmmm….isn't that what my doctor in Twin had said 10 days before)? I also tested positive for CMV (Cytelomegalovirus), which was probably part of what was making me very sick. They had to remove the jpouch and give me a permanent ileostomy. Also when I woke up, my left arm was numb, I could not even feel where it was at. I had to go through lots of therapy to even be able to life it up again, and my thumb and pointer finger still feel numb. I was released one week later, after 17 DAYS!
April 2012-About a week after being home I got a bowel obstruction and ended up in the hospital again with the NG tube and the whole charade. Hospital stay #13. Stay was 3 days.
I went home and was starting to feel better when I suddenly had severe pain again. Even though I resisted, we finally went to the ER, convinced that they would find nothing wrong and send me home again. To our great surprise they found that I was septic, with abscesses all throughout my abdomen. I was immediately admitted to the ICU, and a couple hours later taken to surgery again. Hospital stay #14. I woke up about 10 hours later still intubated and on a ventilator. They had originally planned to keep me on it for a couple days to keep me from being in too much pain, but I begged to have it taken out and I was breathing fine, so they removed it. During the surgery my bladder was attached to scar tissue, and they tore a hole in it while trying to separate it. I had to have a catheter for 2 weeks and went home with it. I also woke up with a feeding tube. I was on TPN as well until I could tolerate tube feeding more and was able to eat. I did tube feeding at night at home until I was sick of it and convinced the doctor to take it out. Eventually I recovered and made it back to work (slowly increasing back to full time).
August 2012-Chris and I move the Spokane (actually technically Chris came in August and I came in September after I found a job. It was a rough 3 weeks apart. I don't know how people do long distance relationships. We were terrible at it.
January 2013-Finally get in the see my GI doctor here in Spokane, who my doctor in Twin researched and said was the best (and I believe he is). I was having pain again.
February-May 2013-We try different medications and have different tests. I had an MRI and a scope that both showed no inflammation. I realized that I probably had a vaginal fistula, so I saw an obgyn, who referred me to a more specialized obgyn, who referred me to the GI surgeon, who did an Exam Under Anesthesia and found the fistula.
June 2013-Start Remicade to try to help heal the fistula. I felt amazing on Remicade. A-MA-ZING.
July 2013-Hospital stay #15. Had a bowel obstruction which cleared on it's own (and with an NG tube). Stay 4 days.
August 2013-Have an allergic reaction to Remicade. I was heartbroken. But I was switched to Humira.
September 2013-Another bowel obstruction-Hospital stay #16. Stay 5 days. Obstruction resolved again without the need for surgery.
November 2013-Hospital stay #17. Stays 5 days. Since this was the third obstruction in 4 months, we planned surgery for December 5. The plan is to take down scar tissue and take care of the fistula while we are at it. I was pretty sick after this stay and not eating well at all. The GI surgeon started me on TPN to help promote wt gain and healing from the surgery.
December 2013-I already wrote a huge post about this, but the surgery went well. We had the bladder/scar tissue thing again and I wore the catheter for 2 weeks again. The hospital stay was rough with nurses who didn't like to give pain medicine that was ordered. But I am done with TPN and have gained 15#!! Still have some issues to work through, but I am not in the pain I was in 2 months ago. Hospital Stay #18. Stay 8 days.
WOW! Like I said, you never think that this will happen to you, but I am glad it has happened to me, for these reasons:
-I have learned how loved I am, by my Heavenly Father and by my family, friends, fellow church members, and others around me. Seriously, if you ever want to know how loved you are, just get really really sick. I have been given so many gifts from other people while/after being in the hospital, and not just material gifts.
-I have gained a greater testimony of the Priesthood. I don't even know how many blessings I have had during the last 7 years, but it is A LOT! Each one has been special, comforting, and helped me handle my trials.
-I have a greater appreciation for the Atonement of Jesus Christ. He has felt everything that I have felt physically and emotionally. PLUS he has felt what you have felt, and what every other person who has ever lived or will ever live on the earth has/will feel. It is comforting to know that at least ONE person knows exactly how I have felt. Sometimes I just need that comfort. Which brings me to….
-I have come to know the love of my Savior for me. He had to love me (and you) a lot to not only suffer for our sins, but suffer our physical and emotional illnesses too.
-I have met many many wonderful people who I would never have met before. Some are friends online, some are amazing doctors or nurses I have had, and others are those that I already knew, but found out later they have suffered terrible things too.
-My faith in my Heavenly Father has grown far greater than it would have without this trial. Many times I have had to put all my faith in my Heavenly Father that everything would work out, that I could handle this trial, and so forth. He has always come through. Many prayers have been answered, the comfort of the Holy Ghost has been felt countless times, and none of us would find these things out if it weren't for trials.
I could go on, but this post is long enough. It is weird to look all the way back and see all of the things I have endured. I think I have had almost every test out there, (ok maybe not, but I've had a lot)! I've had x-rays, CT scans, MRI's, colonoscopies, sigmoidoscopys, upper GI scopes, barium enema x-rays (NOT pleasant), cystocopies, test for carbohydrates in the bowel, a small bowel follow through, exams under anesthesia, and I'm sure others that I can't think of right now.
I know that I will endure many other physically hard things in my life, and I have come to accept that. I know that having children will likely be a hard thing for me, but I know there are spirits waiting for me in Heaven, and that everything I have endured thus far will prepare for these wonderful children of God. The Lord has blessed me with the most amazing man by my side who I love more than I ever thought was possible. Because of this, I can do hard things!
And last, I just wanted to share this video. Every now and then I need to hear it again. Love Elder Holland.