Wednesday, August 12, 2009

I'm backkk!

Well, well, well...I am back to the blogging world and I am back among the living!! :) For anyone who may not have heard through the grapevine, I was out of commission for quite a while. Here is the semi-shortened version of the recap...although it is still long: I was diagnosed with Chron's after a colonoscopy (that showed 15cm of inflammation in my rectum) and much deliberation over an ulcer in October 2007. I was put on my maintenance medicine and went into remission fairly quickly. I had one small mishap in February 2008 where I needed 2 months of intestine-specific steroids and then went back into remission on my 1 medicine. I was just trekking along and had sort of forgotten that I even had a disease when I started noticing my pills coming out the same way that I had swallowed them. I thought it was funny more than anything and didn't quite understand the severity of what that meant. Basically, if they were coming out the same way, that meant my body wasn't absorbing them. Blood and loose stool quickly followed and this was in March. In April, I finally made it to my GI doctor (I didn't want to take off from work to go..) and he scheduled another colonoscopy on Good Friday. I was told that there was 50-70cm of inflammation in my rectum and descending colon. So, I was put on prednisone and thought things were going to get better. Well, for the next month we played around with the dose of prednisone to see if I would improve but despite doses from 20mg-80mg, nothing was doing the trick. I actually ended up in the ER after work on May 8 (Friday) because I was so dizzy that I couldn't stand up or even sit up. They hooked me up to an IV, gave me fluids, pain medicine, nausea medicine, and decided that I was just dehydrated. They bumped up my prednisone and told me to follow up with my GI the next week. Well, by the next evening I was already dizzy again and I had all but stopped eating. I went to the GI Wednesday afternoon with Kyle and just let him know that I couldn't do it anymore. Laundry, eating, going upstairs, going to work...ANYTHING was too much of a task for me to think about anymore. He said that I would need to be admitted and that he would be in touch with a GI in Greenville the next morning to see if they would admit me to GHS (the hospital I work for). So, the next morning I got a phone call to head to Greenville. I had to go through the ER again since there were no beds open and was immediately told that I would not be going home that day. My pulse was up, I had lost 10 pounds, and I guess I just looked sick. So, they hooked me up to IV fluids and IV prednisone and that is how I hung out until Sunday. When Sunday afternoon rolled around, I still had not gotten any fact, I continued to lose weight and once I started journaling my bathroom trips, it showed that I was going 20+ times per day despite not eating!! So, the doc decided I needed a colonoscopy on Tuesday. I went down for that only to find out after I came out of the anesthesia that they couldn't even do the procedure because I was so swollen. They were scared that they would perforate my intestines if they performed it. So, I went for a CT of my abdomen and later that night into the next morning is when we realized how incredibly ill I was. My rectum and entire large intestine was now involved (inflammed and almost blocked) and blood work was sent off to California to find out whether I had Chron's or Ulcerative Colitis since every thing pointed to UC, not Chron's. Wednesday morning, the doctor came in and explained how bad off I was and that I needed to go elsewhere. They told me I was not well enough to drive so I would have to be transported to UNC-Chapel Hill via ambulance. Off I went that night. We made it with 5 minutes to spare in the American Idol finale, so everything was great and I still was in denial about being sick. The next morning, the internal medicine posse rounded on me and decided that I needed to be followed by the Inflammatory Bowel Disease (IBD) team (aka chron's and colitis specialists). They rounded on me that afternoon, said that I had UC for sure, and decided that the only way for me to avoid having surgery, would be to start Cyclosporine and hope that that helps me. This is a drug that was developed to supress patient's immune systems after having kidney transplants. For those who do not understand, they are not sure what causes UC, but they think it has some auto-immune component...meaning my immune system attacked my own body. Therefore, if they could suppress my immune system, my body would have a chance to heal. Otherwise, my large intestines would have to come out. So, they started me on the medicine Thursday night which is also the night that I learned what 10/10 pain was all about. OW. Dilaudid became my best friend for the rest of my hospital stay. The Cyclosporine takes about 3-5 days to kick in and within 30 hours, I felt like I was turning the corner. For the first time in 2 weeks, I was asking to take a walk around the nurse's station and asking to get in the shower. I was able to get up into a chair to nibble on my grilled cheese. These small things seemed huge at the time. So, I just trudged along with one IV for my steroids and pain medicine and one IV for my cyclosporine. After 3 weeks, they decided to make my medicines all PO (by mouth) instead of IV. I was finally able to go home. They also added 2 other medicines that will be my maintenance medicines, even after I come off of cyclosporine. They are Lialda, which is also used for rheumatoid arthritis and 6-Mercaptopurine (6MP) which is a leukemia medication. They both have immunosuppresive effects which are why they work, I guess. That meant I was on 4 immunosuppressants. Home I came with dietary restrictions and about 32 pills to take each day...but hey! I was home and starting to feel better. I had lost a total of 22 pounds and looked pretty unhealthy if you ask me. My parents came and stayed with me for a week and helped cook/shop/clean, etc and made me take walks to start building strength. It was all I could do to walk down my .25 mile neighborhood street...pretty sad. But, my medicine was working and I was going to the bathroom about 7 times per day which was a huge improvement. I went back to UNC to check in with them and things were great, so I was off to Katy's wedding shower at the end of June, just 3 weeks after coming home. I wore a mask on the plane but nonetheless I ended up with an ear infection and sinus infection because of my nonexistent immune system. After 2 rounds of antibiotic I felt better but had to get allergy testing to be sure that that was not the cause of me getting sick twice back to back. With 56 tests on my back and 19 on my arm, I was allergy free! :) I have continued following up with my GI doctor in Greenville (Dr. Brackbill) and I go back to UNC Sept 11th for a followup GI appointment and a meeting with the surgeon. For the time being, I am safe from surgery. I go to the bathroom 1-2 times a day but chances are, unfortunately, that at some point in my life, I may have to have surgery. The appointment in September will be to answer our questions and for us to REALLY understand the procedure and what to expect should that time come. I think this will be a great opportunity since we will not be wrapped up with any serious emotions, since I am doing so well right now. Wish us luck with that! I have been at work since 2 weeks after getting discharged from the hospital. I have gained about 15 pounds back (and hopefully will stay put right there). I have started going to church again and will start choir again tonight. All in all, I am back to myself and loving it! I am so excited that I have been given another chance. Thank you to everyone for your thoughts and prayers during this difficult time in my life. Also, a big thank you to my coworkers for being so understanding and seeing my patients for 5 weeks while I was out. A really special thank you to my family (which includes Kyle's family as well) for visiting me daily in the hospital and for my parents and sister who all took days off of work and traveled to be with me while I was scared to death. And most of all, the biggest thank you to Kyle who stuck by my side through it all. No husband gets married thinking that within the first year, his 23 year old wife would be hospitalized for 3 weeks and possibly face surgery that would put her out of work for 6 months. However, it made us stronger, he slept by my side in the hospital on that lovely pull out chair for 2 straight weeks until I was well enough to be left alone. He has kept up the laundry, helped with cleaning, rubbed my belly when it was upset, held my hand when I was in pain, and I could go on and on. I just can't thank him and love him enough for all of that.

Speaking of Kyle, we celebrate our ONE-YEAR ANNIVERSARY this Sunday!! We leave tomorrow after work to go to Gatlinburg and Pigeon Forge in Tennessee. We are staying in a cabin for a long weekend and I could not be more excited! We need time together to get away from the daily grind and away from work (without IV poles and beeping machines) since our last time away from work was not relaxing in the least. I will take lots of pictures to share.

Aside from all of that, my mom and nanny are leaving today. They drove down from Delaware/Pennsylvania to hang out with Kyle and I for a few days and they are going up to Charlotte now to hang out with my sister and go to her work wedding shower tomorrow! LESS THAN ONE MONTH UNTIL SHE IS A BEAUTIFUL BRIDE WALKING DOWN THE AISLE!! I can't wait to stand by her side as she says "I do!"

Well, I am going to try to update this at least once per week since I have had requests to get back to the blog world. In the meantime, I ask that you think of all of the people who are having employment/financial troubles as well as those that do not have the best of health right now. A good friend of Kyle (Trey) and his wife (Liz) who I went to nursing school with have a little girl, Wesleigh Anne who is about 2 months old. She was born with Down Syndrome and has already had heart surgery once and will probably have another surgery very soon. She was put back in the hospital Monday after being home for a couple weeks because of a possible infection. PLEASE help them by thinking of them often and praying for a full recovery for little "WAG." Visit her website at: Her picture is below, I hope Liz and Trey don't mind! :) I have become SO thankful for health and do not think that I will ever take that for granted again. I encourage you all to do the same.

1 comment:

Meghan said...

Your hospital story is all too familiar to me! I was in the hospital twice last year with a bowel obstructions from Crohn's and facing possible resection surgery...and that was so scary to think about...and still is. I take 6MP, as well...I can also relate being a newlywed and having your husband get thrown into that situation, and am thankful to have an understanding, helpful husband, as well!! Glad you are doing better...boooo to IBD.

Meghan Bell