The Silent Struggle: A Life with Crohn's Disease
Imagine a life shadowed by an unseen enemy within – a relentless saboteur that transforms simple pleasures into sources of anxiety. A meal becomes a potential minefield, a social gathering a logistical puzzle, and a restful night's sleep a distant dream. This is often the reality for those battling Crohn's disease, a chronic inflammatory bowel disease (IBD) that can strike anywhere along the digestive tract, from mouth to anus, though it commonly targets the end of the small intestine and the colon. Living with Crohn's is more than just managing physical symptoms; it's a continuous negotiation with physical pain, emotional distress, social limitations, and the unwavering pursuit of "remission," a state of symptom relief.
The most immediate and tangible challenge of Crohn's is its physical impact. Symptoms vary greatly from person to person and even within the same individual over time. They often include persistent diarrhea, the urgent need for bowel movements, severe abdominal cramps, rectal bleeding, overwhelming fatigue, and unintentional weight loss. The pain can be debilitating, sometimes a sharp, sudden jab, other times a persistent, gnawing ache. Fatigue is not just feeling tired; it’s a profound exhaustion that makes everyday tasks feel like an uphill battle. This physical unpredictability means that "good days" are precious, while "bad days" can confine a person to their home, always within reach of a bathroom.
Beyond the visible symptoms lies an equally challenging invisible struggle. The constant uncertainty fuels anxiety – the gnawing fear of public flare-ups, the mental mapping of every restroom, and the constant worry about dietary triggers. Social situations, intended for enjoyment, become laden with potential difficulties. Eating out can be a source of significant stress, requiring careful menu scrutiny for "safe" foods and often leading to a feeling of burdening others. Spontaneity is a luxury many with Crohn's can rarely afford; every outing requires meticulous planning and contingency plans. This can lead to social isolation, as individuals withdraw to avoid embarrassment or discomfort, further impacting mental well-being. Depression often accompanies Crohn's, fueled by chronic pain, fatigue, and the feeling of being misunderstood.
Life with Crohn's is also deeply intertwined with the medical system. Regular doctor appointments, blood tests, invasive procedures like colonoscopies and endoscopies, and imaging scans become commonplace. Treatment frequently involves a complex combination of medications – anti-inflammatories, immunosuppressants, biologics – each with its own potential side effects. For some, surgery to remove damaged sections of the bowel is necessary, sometimes resulting in the need for an ostomy bag. The ultimate goal is to achieve and maintain remission, a period where symptoms subside, but the threat of a flare-up always lingers. This medical journey is not only physically demanding but also financially and emotionally draining.
Yet, life with Crohn's is not defined solely by its hardships. It's also a testament to remarkable resilience and adaptation. Individuals become experts in their own bodies, meticulously tracking symptoms and triggers. They develop effective coping mechanisms, find strength in support groups, and frequently become passionate advocates for themselves and others with IBD. They learn to navigate their limitations, find joy in moments of wellness, and develop a profound appreciation for the simple things in life. The "invisible" nature of the illness means that many with Crohn's become skilled at masking their suffering, appearing "fine" on the outside while weathering an internal storm.
In conclusion, living with Crohn's disease is a complex, lifelong journey characterized by physical discomfort, emotional strain, and the constant need for adaptation. It demands a reevaluation of what is "normal" and a redefinition of strength. While there is currently no cure, ongoing research holds promise for improved treatments and a better quality of life. For those who live with this silent struggle, understanding, empathy, and unwavering support from friends, family, and the medical community are invaluable in navigating the challenging landscape of Crohn's disease.
无声的战斗：克罗恩病患者的生活
想象一下，一种被潜藏在体内的、看不见的敌人所笼罩的生活——一个无情的破坏者，将简单的快乐变成焦虑的来源。一顿饭变成了一个潜在的雷区，一场社交聚会变成了一个后勤难题，而一个安稳的夜晚睡眠则成了一个遥远的梦想。对于那些与克罗恩病作斗争的人来说，这往往是现实，这是一种慢性炎症性肠病 (IBD)，可以影响消化道的任何部位，从口腔到肛门，尽管它通常针对小肠的末端和结肠。与克罗恩病共存不仅仅是管理身体症状；这是一种与身体疼痛、情绪困扰、社交限制以及坚定不移地追求“缓解”——症状缓解状态——的持续协商。
克罗恩病最直接和明显的挑战在于其身体影响。症状因人而异，甚至在同一个人身上也会随着时间的推移而变化。它们通常包括持续性腹泻、需要紧急排便、严重的腹部绞痛、直肠出血、压倒性的疲劳和非故意的体重减轻。疼痛可能使人虚弱无力，有时是尖锐、突然的刺痛，有时是持续、啃咬般的疼痛。疲劳不仅仅是感到疲倦；这是一种深刻的疲惫，让日常任务感觉像一场艰苦的战斗。这种身体上的不可预测性意味着“好日子”是宝贵的，而“坏日子”可能会把一个人限制在家里，总是在浴室的触手可及的范围内。
除了可见的症状之外，还存在着同样具有挑战性的隐形斗争。持续的不确定性加剧了焦虑——对公共场所突然发作的隐忧、对每个卫生间的心理定位、以及对饮食诱因的持续担忧。旨在获得乐趣的社交场合，却充满了潜在的困难。外出就餐可能会成为巨大的压力来源，需要仔细检查菜单以寻找“安全”的食物，并且常常会让人觉得自己是给别人带来了负担。自发性是许多患有克罗恩病的人很少能负担得起的奢侈品；每一次外出都需要一丝不苟的计划和应急计划。这可能导致社交孤立，因为个人会退缩以避免尴尬或不适，从而进一步影响心理健康。抑郁症经常伴随克罗恩病，由慢性疼痛、疲劳和被误解的感觉所驱动。
患有克罗恩病的生活也与医疗系统息息相关。定期的医生预约、血液检查、侵入性手术（如结肠镜检查和内窥镜检查）以及影像学扫描变得司空见惯。治疗通常涉及复杂的药物组合——抗炎药、免疫抑制剂、生物制剂——每种药物都有其自身的潜在副作用。对于某些人来说，有必要进行手术以切除受损的肠段，有时会导致需要造口袋。最终目标是实现和维持缓解，即症状消退的时期，但复发的威胁始终挥之不去。这段医疗旅程不仅在身体上要求很高，而且在经济上和情感上也很耗费精力。
然而，患有克罗恩病的生活并不仅仅由其困境所定义。它也是对非凡的韧性和适应力的证明。个人成为自己身体的专家，一丝不苟地跟踪症状和诱因。他们制定有效的应对机制，在支持团体中找到力量，并且经常成为为自己和其他患有 IBD 的人辩护的热情倡导者。他们学会了适应自己的局限性，在健康时刻找到快乐，并对生活中的简单事物产生了深刻的感激之情。这种疾病的“隐形”性质意味着，许多患有克罗恩病的人善于掩盖痛苦，在外表上表现出“很好”，同时又在忍受着内心的风暴。
总而言之，患有克罗恩病的生活是一段复杂、终生的旅程，其特征是身体不适、情绪紧张和持续的适应需求。它需要重新评估什么是“正常”，并重新定义力量。虽然目前还没有治愈方法，但正在进行的研究为改善治疗方法和提高生活质量带来了希望。对于那些生活在这场无声斗争中的人来说，来自朋友、家人和医疗界的理解、同情和坚定不移的支持，对于驾驭克罗恩病充满挑战的局面来说是无价之宝。
发病记录
2024-05-24
下午三点左右，身体感觉到了冷，起初以为是下雨并且我还在吹风扇导致，但是后来发现并不是，因为风扇已经关了，我披上了外套，但是还是感觉冷，我回想了一下，是不是因为我上午吃了一个橘子没有剥皮，小肠又堵了，导致炎症上升，所以我发烧了，38.7的温度属实让我感觉难受，我的头疼，四肢酸痛，肚子时不时难受一下，那种感觉就是：时不时感觉到右下腹的小肠位置鼓起了一个包，然后过了一会，随着一阵咕咕叫，那一块地方又消下去了，反反复复，不断折磨着我，并且每次的疼痛程度不一。
我吃了甲硝唑和多西环素，恢复效果不明显，我后来吃了退烧药，也就是布洛芬的液体瓶装版，我上床睡了一觉，出了很多汗，感觉像退烧了，结果一测体温，38.5，我心想，这退烧药怕不是假的吧，我后来又吃了点颗粒的布洛芬，那药是红色的，难怪布洛芬的液体是红色的，过了一阵，测体温后，38，ε=(´ο｀*)))唉，明天再看吧，希望明天能好点。
关于手抖的问题
当血红蛋白仅86g/L，属于中度贫血阶段，身体供养不足，血红蛋白低，组织缺氧，肌肉和神经兴奋性改变，手抖大概率是贫血和营养缺乏导致的，而不是单纯的神经系统疾病
当血红蛋白过低时候，身体的供养能力下降，劳作或流汗后会进一步加速心率与耗氧，容易出现：头晕，心悸，呼吸急促，突发性昏厥风险。
身体处于强制代偿状态：在休息时尚可维持基本供氧，但一旦活动量增大，血液运氧能力就难以满足需求，容易诱发危险症状。
目前只适合安静修养，减少消耗，避免重体力劳动和长时间流汗劳作。
我目前因为贫血，身体供氧不足，不能做剧烈活动，需要休息，否则容易晕倒。