Coping | IBD | Ostomy
It feels like a lifetime ago, but my symptoms didn’t start until late 2008 and they were very mild. I ignored them even though they were odd. I had a lot going on at the time and just didn’t have the time to focus on some weird digestive issues. I figured it was stress, but by early 2009 the blood showed up and I got nervous. I started Googling my symptoms. WebMD became my best friend. Both Crohn’s and UC popped up again and again as a possibility so I started reading everything I could. I knew a few people with Crohn’s and I became convinced that’s what it was. I braced myself. One visit to a GI in the spring of 2009, my first in a long list of colonoscopies later, and I was diagnosed with Left Sided Ulcerative Colitis. I was not shocked. I was not upset. It didn’t even occur to me that I had a DISEASE! I looked at my then GI and said, “Now what?” Maybe I reacted that way because I had educated myself so much prior to even seeing him. I was almost removed from it; I read so much that nothing he said came as a shock, and even the med he put me on sounded familiar. Asacol was the first drug I was on and it did nothing. By fall of 2009 I was spiraling out of control and was rediagnosed with Pancolitis. I switched GIs and started the trial and error of medications. I was afraid to eat and I was weak. The weight was flying off of me and I was spending most of my day in the bathroom. In the meantime, I was working full time. (not sure how though because there were days I could barely drag myself out of bed.) I showered sitting down. I was white as a ghost from anemia and I tried to hold it together. I was still in denial that I was a “sick girl.” I knew everything about it, except for that it really was a large, impactful part of my life. Maybe I kept thinking it would pass. Ignore it and it’ll go away. Then I almost blacked out at work. I couldn’t stand up because I was too weak. Then, I knew. This was my life. I had a disease. It was no joke. I thought I was going to die. I was losing toilets full of blood and clots about 20 times a day and in indescribable pain. The first week of 2010, my GI sent me from my appointment straight to the ER. I was too weak to stand and sign in. I told them I needed a wheelchair. They brought me back and took my blood pressure. I wish I could remember the number but that day was such a blur. It was so low they told me my body was basically in shock and they raced me to a bed and simultaneously I got an IV put in each arm. It was the first time in months I felt ok. I have a picture of me in that ER bed, smiling. I was so happy and relieved to be taken care of. I needed four units of blood that day. Almost half of my blood volume was gone- that was one scary realization. From that day my life turned a corner. I had a battle on my hands. Two little letters had stopped me in my tracks. UC and I wasn’t going to let it win. I would not let it steal my spirit. I kept my sense of humor and jokes rolling even as tears of pain rolled down my face. That was my first hospitalization for UC and it was one of the most horrible weeks of my life. It was painful, and embarrassing and any sense of modesty and dignity went out the window the second you need a water enema done to you for an emergency colonoscopy. I cried the whole time. I just wanted to disappear. It was the first time someone looked at me and told me I may be too far-gone and would need surgery. SURGERY! No way. I wasn’t ready. I bounced back against all odds.
I continued on my rollercoaster of a flare for the next two years. I was never in remission. I had to stop working. I spent more time in the hospital than I care to remember. The outpatient nurses knew me by name. The pharmacy knew me. I had been on every med possible and the thought of pumping chemicals into my body for the rest of my life made my mind up. I owed my rotting colon nothing because it was ruining my life. My fight with UC had changed me and I liked it. I was stronger than I ever imagined I could be.
I finally had enough of trying to save my colon and decided to go with a J Pouch. I made the best of my ileostomy while I had it. It was an adjustment but I was no longer bleeding to death so what’s a stoma compared to that?!
Even now, just over a year after my total colectomy I am still having issues but still refusing to give up. I am still battling pain and trying to carry on as complete as possible with my head high and a positive attitude. The most recent setback has been nonstop rectal spasms, pain and skin issues. My surgeon told me it is worrying him because they are classic signs of what Crohn’s can do to someone with a J pouch. I don’t want to hear that as much as that tiny fear feels real. Being misdiagnosed was my biggest fear going into my colectomy. I started my blog prior to my first surgery because I knew so many people had been suffering for years and were afraid of surgery. I couldn’t believe how many people had never heard of UC or Crohn’s and had no idea how our lives are affected, how IBD surgeries are as major as they are, and how we are FIGHTERS every single day!
From January 2010 until I sit here writing this, I have made it a huge part of my life to talk about my battle. Inform people what IBD is really about. I recently got a semicolon tattoo on my arm to represent my J pouch being my “semi” colon. It has allowed me quite a few conversations about IBD that I never would have had. It is a part of me, but it isn’t who I am. I think that’s important. I try not to let certain aspects hinder my ability to make it real for people because it is so much bigger than the bathroom. I am not ashamed. I am proud of my strength. I have amazed myself. I need to tell my story, for everyone who can’t. I need to keep pushing, even if the chances aren’t so good for me in a situation. I can’t live my life halfway. Sometimes I pay for it because I take on too much. I want to be the old me and try hard to fit the “sick Lisa” into the “healthy Lisa” mold. I won’t say “no” to my family anymore unless I absolutely have to. I’ve said “no” too many times in the past and missed too many things and I refuse to miss anything now. I want my life on my schedule, not my guts. I’m 35 and being sick took enough time away from me that I refuse to let it keep doing it. I will crack a joke through the pain and smile through my tears. There is not one day I don’t wake up looking to be bigger than a “sick girl”. Everyday I say I won’t be defeated. Some days I’m the nail. Some days I’m the hammer. But everyday I am a kickass Gutsy Girl.
Want to follow Lisa’s blog? Visit her at https://gutsylisa.blogspot.jp