donate

922333_10201128822969523_494891124_oIt 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.   IMG_20120521_205251 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. 2012-05-17_15-11-10_71
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.

IMG_20120812_130050I 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. IMG_20130528_192452_078 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.

981384_10201278136662272_1921789756_o

Want to follow Lisa’s blog? Visit her at https://gutsylisa.blogspot.jp

The Girl Who Learned to Thrive The Who, What, When, and Why of My Crohn’s Disease

Leave a Reply

Your email address will not be published.

  1. Cecilia says:

    Your story is very similar to mine. I had colitis for three years before I decided I couldn’t ignore it anymore! It’s comforting to read stories that are so similar to mine. I often get angry and wonder why all this happened to me but to see other people with the same story makes me feel not so angry!

  2. Lisa says:

    It is true. It can feel so isolating can’t it… then you realize 1.4 million Americans have IBD! We are not that rare. Hang in there. I’m dealing with some new issues including being pretty depressed. I’m battling myself, big time. XO

  3. Gerri Endicott says:

    I certainly admire your courage, strength and determination Lisa!! My son Drew had similar symptoms as you and was hospitalized for 5 weeks prior to the doctors recommending a total colectomy in July 2012. He had just been diagnosed in November of 2011 with severe UC. In 4 weeks he lost incredible amounts of blood and 45 lbs. In less then 2 days after his colectomy, the resident told him he could eat a regular diet. He ate eggs, toast, juice for breakfast and a small amount of a chicken sandwich for lunch. By late evening he developed nausea and spasmodic cramps which continued to intensify. Within the next 2 days and obstruction series was done and another repeated later on the 2nd day. All results were negative for an obstruction. The third day his cramps and nausea began to worsen and he was given some stronger meds for the nausea very late in the evening and I went home feeling as though he was more comfortable and was in good hands. By the time I got home, my son texted me and explained that they decided to insert an NG tube to relieve the nausea. I was going to return to the hospital but it was now 1:00 am and he didn’t answer my calls or texts and I assumed he was sleeping. During the next few hours a CT scan was done and he was diagnosed with an obstruction in the small bowel. He vomited during the night and aspirated bowel content into his lungs. Upon arriving to the hospital my son was being transferred to ICU in critical condition. Surgery was later performed when he was stabilized. His small bowel was so distended that it was pressing into his chest cavity. The obstruction was at his stoma and he would be fine except his lungs were now becoming the main concern. Drew would battle aspiration pneumonia which eventually developed into ARDS (acute respiratory distress syndrome). This is a very severe lung disease that required my son being placed on a respirator as his lungs stopped functioning and he could no longer breath on his own. Drew was such a fighter, but his immune system was so compromised from prednisone, remicade and cyclosporine that he couldn’t fight infections like MRSA and sepsis. After 2 months on a ventilator and ECMO life support we lost Drew on September 13, 2012.I can’t believe how quickly he became ill and how it intensified just as it seems your symptoms did too. I feel in my heart Drew would have been fine had he not vomited and aspirated. He was going to have a J pouch also. I think of how brave he was at 24 to have to make such a decision. I admire your strength in not giving in to this disease. You are an inspiration to so many young women and men too. You will be in my prayers for continued good health. Promise to always ask questions if you are in doubt and never hesitate to get second or third opinions. Your life is so precious and I’m sure loved by so many!!
    Sincerely,
    Gerri Endicott

  4. Hi, Lisa! I’m another Lisa with a J-pouch! I was 12 when I started having blood in my stools. I thought I had cancer. I battled UC for almost 21 years, and finally decided to go for the 2 step J-pouch surgery. I too was worried about what the meds were doing to by body, especially the prednisone. I am so glad I had the surgery. I am now 48 and doing well except occasionally I get dehydrated and need IV fluids. Thank you for sharing your story! The more that others know about Crohn’s and UC the better. It seems many people I come in contact with know someone or someone in their family has Crohn’s or UC. They are horrible diseases, but I always tell my mom, “It could be much worse!” My faith in God has really helped me on my UC journey! God bless you!

  5. Vicky G says:

    I can relate to SO much of this. In a way, being ill makes you so much stronger and tougher than a healthy person! I’m proud of what I’ve overcome and how I deal with my life – we all should be. Here’s to all of us!

  6. activeguts says:

    Semi-colon tattoo! Love it!

  7. Lisa says:

    So true. What I can handle far outweighs what “healthy” people do! I go about my day at a 6 in pain like nothing. Most people would be moaning and groaning. Cheers to us and being strong in our battles!!!!

  8. Lisa says:

    Thank you. So many people ask me what it means and I get to raise awareness passive aggressively! 😉

  9. Lisa says:

    Gerri, I am just seeing this now. I’m in tears. I am so sorry. This makes my heart so sad. Sending love. I don’t have words.

  10. Julie says:

    Lisa- You are so strong; thanks for sharing! I’ve had UC for 13 years and there are so many days I think about surgery just so I can get rid of my dysfunctional colon and move on with life! I’m currently doing better, but I’m never out of remission. I don’t think I’ve ever had the strength to say I won’t be defeated, and even now that I’m feeling better, it is so hard not to think of myself as the “sick girl.”

  11. Lisa says:

    It is hard. I have to really convince myself some days. On a good day I “forget” I have issues I will have forever. Somehow after all this time I don’t have a picture of me older and struggling. Everything is my battle and today. Ousting my colon didn’t fix it. Yes, I’m not bleeding to death anymore, but being colonless comes with it’s own set of issues. Some days life is all about the lesser of two evils.

  12. Rachel says:

    Hi , I’m having pouch surgery in June , step 2 of the 3 stage surgery and I’m just really concerned about how many time I would be going to the toilet and whether I’d ever be incontinent ?Also I’ve heard it can make you infertile , is this true ?

  13. Avi says:

    Thank you for sharing your story Lisa!With UC and Chrones, the battles are never over unfortunately!
    You are tough and brave, keep it up and don’t let the CD and UC win!

footer color trail