UC: A blessing in disguise
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
– Eleanor Roosevelt
Don’t be fooled by my title – it took months for me to get to the point where I truly felt that my Ulcerative Colitis was actually a blessing and not a curse. Some of you may be nodding your head and know exactly what I’m talking about and others may be saying to yourself, “Is this girl joking? This is the farthest thing from a blessing”.
It was the weekend of finals week during winter quarter my freshman year of college. Finals week never fails to make my anxiety levels skyrocket. So when I started having diarrhea with pain and nausea, I figured I had either A) been really stressed out about my upcoming final exams or B) caught a stomach bug. I didn’t think much of it since it went away within a week. Fall quarter begins of my sophomore year and I start to notice I have bouts of diarrhea, lasting about a week, every few months or so. My family doctor referred me to a GI specialist and ordered a colonoscopy. The results came back completely normal and I was diagnosed with IBS. I went about my life with these random weeks of diarrhea with no pain or discomfort.
Then the blood started. My friends and I went to Las Vegas for my 21st birthday. I remember it perfectly – it was the day after I turned 21 and just had the best lunch buffet a person could possibly ask for after a long night out. I had to go to the bathroom shortly after and noticed blood in my stool. I told my friend and boyfriend about it because it really freaked me out, but neither seemed too concerned. Probably just hemorrhoids. I will never forget the drive home from the airport. I was in the most excruciating pain I had ever been in up to that point and literally thought I was going to poop my pants. My boyfriend and I were on a highway that unfortunately had a long stretch of no rest stops or gas stations. It was to the point where I wanted him to pull off onto a country road so I could go. I was in tears as I was doubled over in pain. My boyfriend became worried and wanted to take me to the hospital, but I said no – my stomach probably just hurts from the Vegas trip. Over the next 8 months I would continue to have on and off weeks of increased diarrhea, but almost always with blood. In May of 2010, my boyfriend and I moved three and a half hours away from home. I came home in early June for a wedding and drastically got worse in the first night I was home. Call it what you want – fate, luck, coincidence – but I know it was God’s perfect timing and plan for me. I had never been to the ER before and to be honest, I think I was scared of finding out that something serious was wrong with me. My Mom took me to the ER and after a rectal exam and blood work, they came in and said “Congratulations! Your blood counts are so low that we can admit you today!!” Thanks? I had a colonoscopy that determined I “probably had UC but showed signs of Crohn’s”. My biopsy was sent to The University of Michigan for a 2nd opinion and they confirmed UC. My GI and the nurses described my colonoscopy as “wicked” and “evil”. I was started on Remicade and IV steroids later that day. After 7 days in the hospital, I was released home, having no idea what to eat, how long it would take for me to feel well again, or what to expect. So naturally I got online and started researching. Word of advice to any newbies: It is good to research the disease, but do not do it so much and read stories that scare the life out of you. I read so much about Remicade and Prednisone, that my Mom and I made the decision to stop them and try all natural treatments and the SCD. While I do believe that some people can take this path and successfully manage their UC, but I am not one of those people. It nearly killed me and it is so important to listen to your body. I had nights where I didn’t know how to describe how I was feeling, other than that I “felt like I was dying”. I was hospitalized again in July and a surgeon, Dr. Klein, came up to talk to me about surgery. I refused. I had only been diagnosed for barely a month and you want to take my colon out? No way. Again, I was released 7 days later with a PICC line and TPN, only to be admitted again a few weeks later in August – this time for 14 days. I agreed to Remicade and Prednisone and promised my GI that I was in it 110%. I was hospitalized yet again in September for 5 days due to a C Diff infection and my steroid dose was bumped back up to 60mg again. By this time, my face was starting to swell, I was losing handfuls of hair, and started to get acne. I was starting to feel better – the Remicade gave me 5 great weeks of “normalcy”. A colonoscopy in December showed numerous polyps. Before even going in for this colonoscopy, my heart was telling me to bring up surgery again. So when I went in that morning, I already had my surgeon picked out and phone number. December 22nd, 2010 I had a protocolectomy, JPouch and temporary loop ileostomy created. It is now 8 weeks later I feel great! My surgeon is hoping that in 4 weeks I will have my takedown surgery, where they reverse the ileostomy and reconnect all the plumbing inside. Thank the Lord that I have a very close friend who had this exact surgery almost 1 year ago by the same surgeon. He has been a wonderful support and coach to me!
No one will ever know the pain that we experience. The long days that felt never ending will always remain in my memory. All the tears and sleepless nights when I cried because I hadn’t slept for more than 4 hours in two days because of the insomnia and countless bathroom trips. The feeling of having no dignity left when the doctors would come in and I’d be standing there crying because my Mom was in the shower at the time (who stayed with me all the time, bless her heart) and I had an accident on the floor while trying to get to the bathroom. All the times I had to press the call button for the nurse to come clean up my mess because I was just too weak to make it up in time to the commode that was not even 2 feet away from me. I used to pray, “Lord, it is okay if you take me tonight. Please put me out of my misery and pain. I have accepted that I could die and I’m fine with it. Death does not scare me. So please, I am begging you to just take me tonight”. I think I said that prayer multiple times throughout the day for a few weeks. The smell of blood that would literally just pour out of me is not a scent I will ever forget. I looked in the mirror and cried until I had no more tears left to cry because I didn’t recognize the person staring back at me, and I’m still not back to my normal looking self. As if it wasn’t hard enough to feel like a thousand knives are stabbing you in the gut, Prednisone had to make me look and feel like a different person. I watched my 5 foot 2, 103 pound petite frame drop down to 79 pounds in two months. I was in denial when 3 doctors told me that I was dying. Death was knocking on my door. One of my sisters came to see me in the hospital the second I was told this, in tears, because she thought she wasn’t going to see me alive again. I am an Aunt to 10 nephews and nieces and the hardest part was trying to hide my pain from them. But they knew I was sick. I didn’t look like the Aunt they always knew. I couldn’t run around, pick them up and swing them around in circles, or do much of anything anymore. It broke my heart when my 4 year old nephew told me that he was scared for me and he didn’t want my PICC line removed because it was “helping me feel better”. I missed 5 out of the 10 kids’ birthdays because I was in the hospital. Those are 5 very special birthdays to me that I will never get back.
So you’re probably wondering how I consider this to be a blessing. Well for starters, it brought me closer to the Lord. My faith and relationship with him is the only thing that got me through all of this. On my weakest days he was always there holding me in his loving arms and has never once failed me. I’m sure many people think I’m crazy when I say this after everything I went through. But he gave me a peace of mind that surpasses all understanding. I give him all of the glory. They say that patience is a virtue. This is a virtue that I’ve acquired that I wouldn’t have without my disease. My faith has been tested and I have only grown stronger in it. My Mom took off 7 months of work to take care of me. She stayed every single night and day while I was in the hospital, with the exception of 2 nights out of 41. I appreciate her more than I ever have and she has become my best friend. She unselfishly devoted her entire life to helping me and God knows I couldn’t have done this without her. I found out who my real friends are and who really cares. Sadly, I lost some friends and was disappointed by people I thought I was close with who just didn’t seem to care like I would care for them in this situation. However, I gained friends and have created friendships that are so meaningful to me. And those friends that were there for me – the ones that loved and supported me through it all – our friendship is even stronger and we appreciate each other more. I have met some wonderful nurses along the way that I will carry in my heart forever. Although I am still in recovery and have a few months after my takedown surgery, my passion for life has become bigger and I have never felt so alive. I have a list of things I want to do when I am able to again. I have more respect for my body now. The human body is a remarkable, resilient, amazing, incredible thing. It can literally adapt to more than you can imagine and they deserve to be taken care of. I am a better person for my Ulcerative Colitis. I danced with death at one point and I know what it feels like to be down to almost nothing. I have experienced humiliation and the feeling of being a burden, yet come out to be a more humble and loving person. I appreciate the small things in life that so many people take for granted every single day. Walking up a stair by myself, sitting up in bed without any help, picking up a child and holding them, crying tears of joy when my blood work results come back normal. I used to live a life where I thought I was invincible. I think that it is human nature for us to expect a healthy life free of complications. The world doesn’t owe us anything and we certainly live a life where we think that as long as we exercise, drink water, take our vitamins, and sleep 8 hours a night, that we will be healthy. This is far from the truth. Our bodies can turn on us and disease doesn’t care how young you are. I like to think that we are special individuals and that God picked us because he knows that we are strong people. I believe that we all get to a point in our life where we start to realize that it could always be worse. This may come gradually or all at once. But once you get there, you will have a sense of well-being and feel blessed to have overcome and endure everything that comes with this disease.