Welp....

     I'm back at square one. I've been taken off of the medications used to treat crohn's disease. The reason for this is because I had a colonoscopy on December 15th. Guess what! All the biopsies came back negative. I sincerely hate that word, and normal. So I've been off of Pentasa for about a week. Although I am now on Prednisone but that is for a completely different reason.
     This last week or so has been one of the hardest of my life, emotionally and physically. I did not react very well to Osmoprep the night before the procedure and I felt terrible. I was bloated from taking the pills and drinking so much liquid and to top that off I was nauseous (and add in the normal colon prep pain). Then I had the procedure and I woke up and I was nauseous but the fact that I hadn't eaten since Saturday won out and I ate the cookies. I then proceeded to be nauseous until Wednesday night. On Thursday I received the news that my biopsies were negative and everything came back normal. Except there was still inflammation in my ileum. Though in defense of Pentasa I felt a lot better while I was taking it, I was in less pain and it helped keep my acid reflux at a minimum. I really wish they would have consulted me before deciding what to do. I realize they are the ones with the medical degrees but I do know how I feel better than they do. Thursday I was an emotional wreck. I was so done with everything. I was furious that they can't figure out what was wrong with me and even more furious that I am back where I started in February. Well not really more like April.     
     So I went on for the next few days feeling really down about everything and then Tuesday I wake up and I felt like my head had been punched several times. I chalked it up to an ear infection took tylenol and applied hot compresses to my ear area. Wednesday morning I wake up and my ear feels worse than the day before I can hardly swallow and when I do it feels like someone is running a knife down from the outer part of my ear to the beginning of my mouth. So I went in and turns out I have TMJ dysfunction, which is Temporomandibular joint dysfunction or disorder. Great another thing to add to the list of what is wrong with me. It is believed I got this lovely dysfunction from clenching my teeth and the occasional popping my jaw would do. TMJ is basically the area where your jaw and skull meet gets inflamed and hurts like none other. TMJ is likely to come back eventually after treated. I was given Prednisone to treat the inflammation and Naproxen for pain. That first day I was regretting not getting a muscle relaxer, as the doctor had offered to prescribe me one.
     I'm still getting used to all of the lovely side effects, which sucks because I'll be off of it in a few short days. But any way hope you all had a Merry Christmas!

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"It's not your fault"

I was reading excerpts from the book "The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed" by Jill Sklar and the first chapter is about how it is not your fault you have this disease. Despite what others are telling you, you cannot give yourself Crohn's or UC. At the end of the first chapter was a little summary in a sentence which was "It's not your fault, nor is it anyone else's fault". That really struck me as profound, as I've previously mentioned I've had people from day 1, even though I'm not technically diagnosed with anything aside from ileitis, telling me how to eat and how to cure it. Which really has discouraged me. But it is not my fault, it's not your fault either. Remember that the next time some hints that it is, because it is not.

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After That Intense Post...

Here are some songs I've been listening to on repeat:

1. "Hope is What We Crave" - For King and Country

2."Without You" - For King and Country

3. "It's Not Over Yet" - For King and Country

4."Imperfection" - Skillet

5. "Always" - Kristian Stanfill

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The Truth is, I'm scared.

Do you ever feel like your world is crashing down on you? Every where you turn people you used to trust, love, rely on, are suddenly no longer there. Every where you turn you get criticized, because well you simply aren't good enough, or perfect, or whatever. I feel like every thing I am trying to accomplish in my life is simply being turned to dust and ashes. I'm so tired. Yet I can never sleep. I need a break from being me, from being sick. I cope ever so well on the outside, but sometimes the inside doesn't want to listen to the voice of reason. I'm emotionally tired. I think I've had more strain on me emotionally than physically. It can be hard to believe that I was fearfully and wonderfully made when my body doesn't work properly. This post is kind of a downer, but in other news my sister might be finally making her dream of owning a greenhouse business thing come true. Which is awesome. In fact she called me and was telling me how scared she was  because she sees herself as a failure and I told her how she shouldn't believe that because she too was fearfully and wonderfully made and how God had this plan for her, though it might not make sense now. I obviously needed that talk as much as she did.

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It isn't THAT Bad...

Yesterday at school I seriously got told that having (potentially in my case) Crohn's wasn't THAT bad. Um what? Excuse me? Did I hear you right? I was in complete shock. Please keep in mind this individual does not have Crohn's. I told this individual while yes there were worse things, Crohn's was definitely not anywhere near the top of my awesome list. This individual then proceed to tell me why she is an expert in all things related to Crohn's. You wanna know why she is an expert? Because her friend is dating someone with Crohn's. Her extent of knowledge was that this friends boyfriend farts uncontrollably because of Crohn's and it put a strain on their relationship. Sweetheart there is a lot more to Crohn's than farting and the bathroom. I realize this is going to become the norm of what people say to me when they find out, if they ever do. People don't understand, and frankly most of them really don't care to understand. And anyway they will never truly understand unless they personally have an IBD. No matter how far society comes, I believe, those who suffer from any disease are treated more like they are the disease, not that they are a person who happens to have a disease. If you really want to help someone, don't play doctor, chances are they want someone to just listen to them and feel valued as a person, not a disease.

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If You're Perfect, Ignore This

I'm a Christian. Yet I still question God. My disease may not be as deadly as others, but to tell you the truth it has completely altered my life. Before Crohn's I was a happy upbeat person who loved to play practical jokes on people and make others laugh. Now most days I don't have the energy it takes to still be happy and upbeat. I would rather spend my energy doing more basic things that are necessary for life. When I first got sick I could hardly take a shower, once I was done I was pooped. How is that fair? To me, to those I know? How could they ever treat me "normally" when I can't act "normally"? I realize I already have a post on fairness and I'm not going to dwell on it in this post. It frustrates me when people take their health for granted, I'll admit it, I did too. I never in a million years thought I would ever EVER get a chronic disease, I figured best case scenario I'd end up with breast cancer. I question God about why I, a 20 something, would get a disease that will forever be a part of my life until they find a cure. All I ever wanted in life was to be happy. But being happy is a choice and that choice is a lot harder to make every single day. Sometimes I make the choice, other days I don't. The whole question of "Why does God let bad things happen to good people?" comes to mind as I type this. The answer is simple, hard to swallow, yet ever so simple. We aren't good people. Well at least I'm not. I mean I haven't killed anyone, but I can be mean and crabby and a jerk. Sometimes I'm not nice to others. I sin, I'm very prideful. I'm not sure how to end this because lets be honest, conclusions aren't my strong point. But in summation I know that God has a plan for me and all the these hardships and diseases will ultimately lead to something beautiful. I can't see the big picture all I can see is the itsy bitsy piece of the puzzle that I'm holding. Things will get better and they will get worse, that is ultimately a fact of life everyone will have to face. Maybe not to certain extremes as others. That is all.

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Awareness

I don't know about you but every. single. time. someone asks me what I have and I say that I more than likely have Crohn's disease, I have to explain what it is. Like the weekend I went away I was tempted to bring along a bunch of pamphlets so I could save my breath. Why isn't Crohn's disease as talked about as many other diseases? Because its an invisible disease? Well actually it isn't for everyone. Why? I think Crohn's disease and Ulcerative Colitis are just as important and life altering as all the other highly publicized diseases. I was scrolling through CCFA (Crohn's and Colitis Foundation of America) and I saw someone had posted a video similar to the extremely popular ice bucket challenge, except it was the lego bucket challenge. The person who accepts the challenge has to walk across a line of legos. Feel the pain to end the pain.

Found this here

I thought this pictures was fairly accurate haha :)

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