“我学会了为我想要的东西而奋斗。”

我的症状开始于我12岁左右。我有一些直肠出血，但我很长时间没有告诉任何人，因为我认为这是我不够健康的错-我吃得不好，我没有锻炼。不过，回过头来，我意识到这根本不是我的错——我只是个未成年的女孩，我很尴尬。

当我14岁的时候，我开始有严重的腰痛。当时我是芭蕾舞演员，所以一开始我们以为是舞蹈伤。然后我们想可能是关节炎，但也不是。最后，经过两年的预约和诊断，我开始有明显的肠道症状。所以我做了结肠镜检查，当时我被诊断为克罗恩病，一种炎症性肠病（IBD）。

I was 16 years old at the time, and it was just months before my junior prom. It was a tough time. If you look at my prom pictures, I had a really puffy face because I was on steroids for my Crohn’s. I remember my grandma had to let my dress out for me because it wasn’t fitting me anymore—on such high doses of steroids, it’s not uncommon to put on weight pretty quickly. So yeah—being a 16-year-old girl who was just diving into the world and then to be handed this diagnosis? It was terrible timing.

我不得不停止跳舞，我也会在舞蹈课后进入汽车，只要哭泣，因为我的预科炎的痛苦都是如此糟糕地辐射到我的背部。而且我的病也影响了我的学术生活。我是我班上的顶级学生之一，但突然，我生病了，不得不错过很多天。我不得不获得残疾计划，这对我来说是羞辱，因为我只是不想被标记为不同。很难从一切都对一个地方挣扎的地方来。

当我诊断时，它是一个救济，因为我终于有一个名字对我有什么问题，我知道有办法对待它。当时没有人说有一定有可能的机会，有一天需要手术或者那些 - 我的医生在开始时非常有信心，他们可以找到一种帮助让我的克罗恩受到控制的药物。

但我没有控制住，反而越来越糟。

高中的最近几年和上几年的大学都非常可怕。我尝试了各种各样的药物，从类固醇到生物制剂。当我在一个生物学时，事情平静下来，但随后，在我大学的新生年底，我对其称为后逆转脑病综合征的严重和罕见的反应。在24小时内，我有七个癫痫发作 - 我的大脑非常肿胀。我在ICU中结束了一个星期，它正在恐吓。那时，我显然无法留在那种生物学，所以我回到类固醇。在我的二年级学年结束时，没有什么真正的工作 - 所以我的冒号必须出来。

我的克罗恩病尤其复杂，因为尽管我的第一个诊断是克罗恩病，但有一段时间他们认为我可能得了溃疡性结肠炎。我甚至做了一个j形眼袋，这通常是为患有严重疾病的UC患者做的手术。我实际上是第三代肠易激综合征患者，所以我的诊断有一部分混乱，那就是我妈妈得了克罗恩病，我奶奶得了溃疡性结肠炎，所以我想我得了克罗恩病，很长一段时间看起来和行为都像溃疡性结肠炎。但在2012年左右，当我的j型眼袋有活动性疾病时，我们一劳永逸地确认这肯定是克罗恩氏症。

At that point, I went back on biologics—ones that I hadn’t tried before. Things didn't really calm down, though, and then my j-pouch just failed completely. It swelled up to fill nearly my entire pelvis, so it had to come out. A week before Christmas in 2013, I had my permanent ileostomy placed. Since then, I’ve had a lot fewer symptoms. However, it did take almost a year for my wounds to heal, and I even had to have wound revision surgery. And then, even after all that, I still had active disease in my remaining small bowel.

但我的医生让我终于让我进入了缓解。经过11年的处理这种疾病，我到了那里 - 我现在已经过了大约四年了。也就是说，我仍然有来自所有手术的一些问题，并只是处理我身体中的多年的活跃疾病。例如，我有水合的问题，所以我每天都有一个港口并在家中做IV液体。我也仍然仍然在时钟周围恶心的药物。但尽管症状，但我可能还有，我能够运作 - 我能在很长一段时间内第一次工作。

So now, when people say, "How you're doing?" And I can say I’m doing well—for me. This is still not a great scenario, you know? I have medical equipment helping me put fluids in my body, equipment allowing me to empty waste from my body. It's not an ideal situation. I'm still very fatigued a lot of the time. I'm not one of the people who has an ostomy and is out running marathons. But that said, I've been able to have a life that is not just about having Crohn's disease.

尽管我的手术和学校和研究生院挣扎，但我能够获得神经科学的硕士学位，现在我是一个生物学教授，目前教授主要是解剖学。我非常幸运，我在一个奇妙的部门内在一所小学工作。我的同事非常奇妙，我认为我有这种疾病，我可能需要一些特殊的住宿。例如，如果我有一个课程和实验室回来，我需要他们在同一个建筑物中，所以我不必在介于两者之间的10分钟内穿越校园。It’s also been great to work with other anatomy professors because they have a good understanding of what's going on in the body when you have Crohn’s—and I've actually been invited into classes by a couple of my colleagues when they are teaching the digestive system to talk to their students about Crohn's disease and about ostomies.

在我们学校学习解剖学的大多数学生都想成为护士，所以我有机会和一组组学生谈论克罗恩病，给他们看我的视野中活动性疾病的照片，并谈论我的旅程。我甚至会把我的造口袋取下来，给他们看我的造口，因为很多新护士和护生都对造口感到恐惧。如果我能让更多的人加入护理队伍，他们对造口术有更好的了解，并帮助他们明白，病床上的人仍然是人，那么在我看来，这是一个了不起的成就。护士们在克罗恩病患者生命中最艰难的时刻看到他们，但他们仍然有一段旅程和一个故事，对他们来说不仅仅是躺在病床上的人。这就是为什么我对我的学生对我的疾病非常坦诚和开放的原因。对我来说，重要的是他们明白病人就是人。

Beyond teaching, I’ve been on the board for the IBD organization有胆量的女孩自2018年1月起担任发展总监。当我还是一个青少年和大学生的时候，当我得到诊断和做j-眼袋手术的时候，像是有胆量的女孩对我来说会有很大的不同。我希望其他女孩和妇女能够与这个网络联系，并获得我最终通过有胆量的女孩找到的精彩资源，因为IBD是一件可怕的事情单独经历。我不想让其他年轻女性像我一样独自经历这么多。有胆量地加入女孩理事会，是我参与汇集这一姐妹情谊的有力方式。

It’s interesting being part of an organization for people with chronic illness that’s actually run by people with chronic illness. We have to really work as a team and be able to say things like, "Hey, I'm not feeling well today. I need you to pick up this thing for me. I need you to take this call, or write this post, or whatever it may be." The good thing about being on a team of people who all also have this disease is that when you say, "I'm not feeling well today,” you know everybody truly understands.

成长，我以为我不得不在职业生涯和家庭之间选择，我非常善意。但是我生病了，事情开始分崩离析，我以为我不会得到职业生涯或家庭。但是现在，即使一切都在努力，我诚实地在一个伟大的地方。我生命中有很多支持性的人 - 我的家人，我的社区通过工作，我的教会和胆量的女孩。所以我终于在一个我希望拥有职业生涯和家庭的地方。

我丈夫和我正在组建这个家庭。这是一个疯狂的旅程，我从来没有想过我会在。几年前，我甚至不能接受当妈妈的想法，因为我病得太厉害了。现在我的未来看起来也很光明。我们现在正开始体外受精的过程，有一个怀孕的携带者，对我们生命的下一个篇章感到无比兴奋。

对于像克罗恩病这样的慢性病，会有人说他们对自己的疾病心存感激，因为它让他们变得更好，或者它让他们走到了今天的位置。我不是那种走那么远的人。我坦率地说，克罗恩病给我的生活带来了很多创伤，也让很多事情变得非常困难，所以我不想把疾病归功于我造就了我自己。

我不得不学习如何争取我想要的和learn that non-ideal circumstances can still be pretty great. And I’ve certainly learned to be grateful for the days where I am feeling well and I'm able to get things done and spend time with the people I love. And on the other side of that, I’ve had to learn how to cope on the days when I don’t feel well. This disease made me grow up really fast. I'm kind of like an old lady—physically, in terms of how my joints feel, and emotionally, in terms of what I feel is important. I find I've almost been an old lady since I was a college student because I had to learn quickly that if I wanted to be successful in school and now in work, I can't be someone who procrastinates. If I'm feeling well, I have to get things done—because I don't know how I'm going to feel in an hour, and I don't know how I'm going to feel tomorrow. I’ve definitely learned how to seize the moment. If you’ve just been diagnosed with Crohn’s, one of my best pieces of advice is to make sure you're asking questions. Make sure you understand what your treatments entail, and why the treatment you’re given is the best choice for you. Make sure you're seeing a GI who is knowledgeable in IBD, and find your people. Find people who have been through this, who have been living with the disease, who have taken the meds, who have had surgery, who have learned how to cope with it—because even if you have an amazing GI, the people who are going to help you cope the best may actually be those who have been through it themselves. And now in the age of the internet and social media, it is easier than ever to find those people.

并且知道有时会令人沮丧。在控制下可能需要一段时间才能获得疾病。但只是因为第一批药物不起作用，你感觉不舒服并不意味着你永远不会受到缓解，永远不会稳定。每个人的疾病都是不同的，弄清楚你的身体所需的需要一段时间。所以你有时必须耐心等待。在那里有很多治疗选择，每个人都对他们不同，所以可能需要一段时间才能弄清楚你的身体需要什么，以便在控制下获得疾病。

当我想到未来时，仍然有很多不确定性。我尽量不去想永远。是的，我会一直有克罗恩病。但我已经成长为不仅仅是一个克罗恩病和造口术的人，我比几年前更有希望，这是一个不同的世界。