It’s Only The Beginning

As some of you know, and some of you don’t know, I have Crohn’s Disease. I began showing symptoms in 2010, and was officially diagnosed in 2012 after being misdiagnosed twice and treated for other things (first was intestinal parasites, second was Celiacs disease as my bloodwork did show the markers for that). The antibiotics obviously didn’t work, and going on a gluten free diet didn’t help, and just made me cranky because I was missing all of my favorite foods (popcorn chicken, hamburgers, chocolate cake) as they didn’t have such a WIDE variety of gluten free foods even back then! 
I was 17 and had just graduated high school at the time of my diagnosis. I had gone from a comfortable 110-115lbs to 90-95lbs in just a few months time. So far, it had been managed by a few difference medications in pill form. Pentasa was one I distinctly remember due to the sheer size of it. I continued to take those through around December 2012 when I stopped because it didn’t help me at all. I was a freshman in college at this point, and was starting to feel better once I stopped taking them. I started to gain weight back, less frequent bathroom trips, started feeling “normal again”. Then came June 2013. I was had been having pretty bad back pain for a couple days, and just thought I’d pulled a muscle as I was working on a lobster boat, working on my home towns volunteer fire department working in the kitchen of a nursing home, working as a CNA, and was starting another job waitressing. One day, as I was attempting to get ready for training for the waitressing job, the pain was awful. I couldn’t lift my left leg to put on my sock, or tie my shoe once my sock was finally on. I couldn’t bend over to do either of those things, it hurt to sit, it just hurt. I was in tears. I KNEW something was wrong. I called my mom and told her I was going to the emergency room, she honestly didn’t think it was anything serious. Not wanting to bother my local FD, I drove myself to the hospital. They made me take a pregnancy test, even though I told them I certainly was not pregnant- and I was right. They finally administered morphine via IV. I needed to get up to use the restroom and a nurse helped me, and soon as I got back and sat down on the bed I SCREAMED because just the action of sitting sent pain shooting to every part of my body. It was a pain I never wish to experience again. They wouldn’t give me anything stronger, even though now at this point I was writhing in pain. Around 10pm, one of my primary care doctors came in and ordered them to give me something stronger and to admit me (I had been in the emergency room for about 5 hours at this point). Finally they gave dilauded and I was comfortable. They sent me upstairs to be admitted. I had a severely swollen ileum causing all of the pain. I was released after 6 days, had a colonoscopy after a few weeks and all swelling was gone. 
I became pregnant with my son in 2014, and went into remission during my pregnancy, and was in remission until 2016, only symptoms being loose stools and weight loss- but I was also breastfeeding. Around April 2016 I began getting cramping that would come and go, and it was pretty bad. I made an appointment with a new GI as I had moved from Maine to Virginia and hadn’t yet established a GI doctor. Had a colonoscopy, and that showed that my Crohn’s had spread from my small intestine to my large intestine and was currently active. We decided to start me on Remicade, which is an IV medication that is low dose chemo. I got through three rounds of that, and ended up hospitalized. I’d had a perforation, which led to sepsis, as well as little pockets full of fluid on my intestine. I needed drains in my chest due to fluid build up, and a drain in the pockets to get that fluid out. I was released after two weeks. It was a terrible stay and I have terrible memories from it, but I won’t get into that. I continued to lose weight though, dropping to 86lbs. I started Remicade again. Things were going well, but again after three rounds, I began to get sick again and was hospitalized. For the same thing. Perforation, which lead to sepsis. They decided to do surgery on me. They started out going in laproscopicly, then ended up cutting me open (they went through my c-section site), and removed over two feet of diseased bowel plus my appendix (didn’t need it anyways, and might as well take away the risk of appendicitis while they’re at it, right!?), and left me with a temporary Ileostomy to let the rest of my bowels rest and heal up. I continued to lose weight, lowest point being 77lbs. Yes. 77 POUNDS. Finally, at almost 2 months post-op, I’m up to 84 pounds, and hoping to get up to 95lbs again! So far, I’m feeling the best I’ve felt in years, and I’m loving it! 

If you’re a fellow ostomate, soon to be ostomate, or just someone with Crohn’s/IBD…never give up! This is a hard journey, and sometimes it’s hard, so hard, to wake up and put a smile on your face, but remember this…you woke up! You have air in your lungs, thoughts in your mind, and love in your heart. Each day is a true gift, too many fellow warriors have lost their lives to this horrid disease. 


5 thoughts on “It’s Only The Beginning

  1. Today is my birthday. 26 years of living with Crohn’s, ever since my first accurate diagnosis only days into my sophomore year of college. Just decided to share a few things with my friends today to help them better understand what I go through. It would be the best gift ever to have more people understand. This is not my story. However, the similarities are remarkable. To all those suffering with this devilish disease; keep FIGHTING!

    Liked by 1 person

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