我的术后心路历程

我的就医经历,促使我从建立qq群做解答,到建立肠癌网站,最终写一本肠癌治疗工具书的心路历程。

术后为配合医生治疗,全身心投入到研究、学习、实践治疗肠癌、化疗期护理、身体调理知识的海洋里

术后我几乎放弃了病前所有的生意和工作,屏蔽了所有我不开心的事情,全力以赴全身心的投入到研究肠癌、治疗、护理肠癌知识的海洋里,几乎看遍了我网上所能够搜索到的肠癌治疗权威文献和研究报告,请教了可以请教到的中西医医生,把从小就自采草药、购买中草药自我治疗各种疾病对中(草)成药的知识;加上10年前在北京朝阳医院做了肛门pph手术时医生的讲解和交流;40年肠胃虚寒和时不时痔疮发作自己学习治疗调理的中西医知识积累,我很快就建立起对肠癌治疗/护理知识的认知基础;在术后一个月开始化疗的每个疗程辛苦的日子里,我每天除了定时吃药吃饭睡觉,几乎都泡在肠癌群的聊天室里与老患者交流;为新患者或家属做力所能及的解答,在帮助群友的过程中努力找回自己失去的自信心,因为做解答必须非常严谨,要经得起群友刨根问底式的询问;所以我的研究很快就涉及了对肠癌的治疗、护理、康复的几乎所有问题,以期能够回答群友所有的疑难问题。

半年多时间我就仔细的在群里研究了群友数百张肠镜报告、术前CT、核磁报告和术后病理报告,比较各级医院对类似病例的治疗方案和跟踪治疗效果;加上自己的治疗护理经验总结,总能够指导群友解决很多护理疑难问题,我很快就成了3个1000多人肠癌群的解答主力,并在群友的大力催促下,于2016年10月份自己创建了结直肠癌康复护理联盟群,每天给肠癌患者和家属做治疗、护理问题的解答,群友人数也从创建时跟我进群的几十个人,发展到去年的2000人,长期处于满群状态,要经常踢出去一些入群不改群名,长时间不发言的群友,才能够空出位置来,让新确诊搜索qq肠癌群发现我们群群聊火爆、或老群友介绍慕名而来的患者或家属加入到群里来。

四十几年的肠胃调理经验,30几年治疗痔疮护理肛门的经验,从小对中成(草)药的认识和试用实践经验,长年独立生活自己调理身体的经验,成为我术后护理自己、调理自己的知识宝库。 

术后第二三年的康复期我开始处理治病时暂时放下工作,因为心情和时间上的原因,我已经没时间每天坚持在肠癌群里回答群友所有疑难问题了,从而萌生了写一个能够解答群友日常经常问到的共性问题,和我独创的千锤百炼、经常能够药到病除的十几种护理、调理方法,和对新群友来说事关重大的专业医院选择、专业医生选择问题,手术、放疗、化疗疗程的选择问题,写成文件放于群文件里,让没有得到我及时解答的群友,也可以通过管理员的指导去看我写的系统文件,就能够补我恢复工作之后无暇在群里做解答的遗憾;入群必读文件《结直肠癌的治疗和护理经验集成》成文之后,经过不断的修改、细致和完善,至今已是数十页的肠癌治疗、护理、康复的系统文件,但是每天还是有几个慕名入群的群友,艾特我要我亲口解答她们才放心,所以我每天晚上休息前进群爬楼查看群里有没有管理员、老群友解答不了或解答不清楚的问题留言,再研读上传的各种报告再做稳妥的、细致、系统的解答。

在6年的解答经历中发现自己几乎完美的手术经历、化疗期护理、康复期调理经验分享与解答,可以造福几千个患者和家属的巨大价值,群解答和病例跟踪、反馈循环,形成了得天特厚的循证医学研究环境。

几年的解答经验和几百个深度跟踪指导的案例经验告说我,我深知我每天辛苦选择复杂而重要问题做解答的分量和价值;它经常是可以很快帮助无助患者很快解决痛苦和能够完成救命的放化疗疗程的护理和食疗问题,有时是事关性命的医生甩给患者家属艰难决策的治疗选择问题;有时是刚确诊入群六神无主、一脸茫然,患者入错医院、选错医生、做错手术就补救不了、后患无穷的病情判断和专业医院、医生专家的选择问题;有时是低位直肠癌处于保肛边缘的患者,选错保肛手术就大概率会复发转移的保肛与否艰难的选择问题;有时是复查报告出来、怀疑复发转移而惊慌失措的群友,急需有人给她们做出相对准确的复查报告的研读和判断问题;有时是肿瘤内科医生不处理或处理不好,导致患者化疗后上吐下泻,患者拒绝化疗治疗的及时止吐止泻指导问题;有时是患者术后、回纳后肛门疼痛等五种大便紊乱,每天十几二十次大便,痛苦不堪,上吐下泻导致营养不良,患者急速消瘦的问题;有时是一看血常规就知道患者血象处于不符合化疗条件边缘,不立即细致的指导群友做好升红细胞、白细胞、血小板血象的食疗工作,患者下次化疗疗程就会因为血指标不合格而被医生叫停化疗的迫切问题。

用常年疗效明显的各种中(草)成药 ,调理血象确保放化疗顺利,护理、调理回纳后肛门炎症、吻合口炎、大便紊乱的各种有效方法;看大便形状调理肠胃功能的方法通俗易懂,在群分享之后被群友争先仿效。

面对2000人群、2000个患者每天都会出现几例上述的迫切需要解答、指导、解决的疑难、危难问题,我每天身体再疲倦也无法看到紧急艾特我的呼声而听之任之不做认真的解答;责任感、使命感和成就感支撑着我每天睡觉前一定要爬楼看一遍当天有没有这类危难的紧急问题需要我解答,经常从晚上11点留言解答到凌晨1-2点才放心的入睡,此时患者和家属早已入睡了,而休息日基本每天白天都在群里解答3-5个小时。医学本来就是一门循证科学,自己患病总结的经验和6年来的解答经历,研究和经验得到的治疗、护理、调理方法,身为2000个来自全国数百家医院的患者或家属的肠癌群群主,拥有得天独厚的循证医学研究环境,我一生自学的法宝——观察、归纳、思考、总结、形成理论、再放到实践中去观察、归纳、思考、总结、印证理论。。。。。。形成了完美的闭环。在研究治疗、护理、肠癌知识方面,发挥了神奇的效果。自己实践印证的理论,再放到群友中去实践、印证理论、在癌群这个宝贵的循证环境里,得到成百上千的群友的反复实践,反馈印证行之有效,绝大部分方法都是药到见效、见效明显的方法。

应群友要求,把系列护理、调理身体的方法,系列分病情选医院、医生的方法,和肠癌的术后、化疗期、康复期的注意事项写成几十页的《入群必读,群主编写的肠癌治疗、护理、康复经验集成》的文件之后,被患者与家属誉为必读经典。   

6年来,特别是最近2-3年群友不断有人认为我除了不会拿手术刀手术之外,我的肠癌治疗、护理知识和经验已经超越一般的中西医医生了,更鼓励我把我的研究和亲身的治疗护理、康复经验系统的写成一本书出版,可以造福天下千千万万的肠癌患者和家属,以解决长年以来买不到一本比较系统的、全面的、中西医结合医学理论扎实,调理经验丰富、护理、调理方法行之有效、药到病除的结直肠癌治疗、护理、康复经验集成的工具书籍的遗憾;导致患者和家属5年的治疗过程都在彷徨无助、提心吊胆的做医疗选择、经历着痛苦不堪的治疗折磨过程,因中西医医生两种医疗争议而导致中西医难以配合治疗,和大部分的类似癌症书籍和研究文章要不是没有得病经验的西医所写的泛癌症的书籍,根本没有针对肠癌系统的治疗、护理、康复知识的书籍,要不就是肠癌群里久病老医生的患者或家属的片言只语的经验之谈;而导致患者治疗时进退失据,治疗失败的概率大大的提高。

形成《入群必读》文件之后和日常的不懈的群解答推广,极大的提高群的化疗疗程完成率、吻合口炎和肛门炎症的发生率、大便紊乱康复率、病情判断正确率、选择就医医院正确率,减少患者一半以上不必要的痛苦。

而从我创建肠癌群6年来的经验,我群里因为有我每天做解答和有相对比较系统的《结直肠癌的治疗和护理经验集成》文件可供学习,群友普遍的肠癌知识修养比较高,90%以上的患者都能够顺利的完成放化疗疗程,(国外有个2万多人参加的肠癌化疗大型研究结果确认,有大约50%的人完成不了全部化疗疗程)90%以上的术前入群患者都能够选择到适合病情的医院、医生手术,选择了适应病情的正确手术方式或术前新辅助治疗;所以据群里不完整的统计,感觉群里患者术后复发转移率特别低;而成功治愈率或五年生存率都远远的高于世界或国家的肠癌患者的五年生存率,6年肠癌群的经验告诉我,我每天做研究和解答的价值有多大,但是长期独力维持一个2000人肠癌群的免费解答工作,时间上、体力上有点捉襟见肘,经济上更加压力山大,长此以往我将有一天会面对群友每天求救的呼声而心有余而力不足。

通过《入群必读》文件和每天解答,服务2000群友取得成功之后,萌生了写一本肠癌工具书、建立肠癌知识经验分享网站每天做解答,每天实时服务千千万万患者和家属的想法。

故此,我萌生了建立一个专业的、系统的结直肠癌网站,写一本全面、系统的肠癌的治疗、护理、康复的电子书;再翻译成多国文字,使国外过千万和每年过千万新发病的肠癌患者都有机会在网上搜索到这个网站,让进入过网站的患者和家属可以口口相传,像我创建的qq癌群一样,可以让千千万万的患者和家属,只要付出对治疗肠癌来说九牛一毛的金钱,就可以得到一本确诊到康复五年内都有极高参考价值的肠癌治疗全程的指导工具书,(先电子版,付得起出版社的钱之后出版纸质书)和每周不断更新的肠癌治疗、护理、康复的最新知识和资讯;我希望能够尽快的完成研究和电子书的写作、编辑工作,尽早出版纸质书,用我一生的时间全身心的投入到向全世界普及肠癌治疗、护理、康复系统知识的神圣使命中来,尽我所能的挽救更多处于生死边缘的肠癌患者逃出生天,就是我下半生的不懈追求;五月份我们悲痛的送走造福全世界,让人类能够摆脱饥饿痛苦、人类最伟大的袁隆平老先生,但是他无私的献身精神和一生的伟大追求却时时鼓励着我,我愿意学习袁老先生用一生的经验和知识,尽我微薄之力,在肠癌的这一亩三分地上,默默的耕耘下去,在责任感、使命感、成就感的驱使和支撑下,争取做一个像袁老先生那样能为人类做出某种贡献的人——这就是我创建这个网站、写一本肠癌工具书的初心,我也将一如既往、坚持不懈、义无反顾、死而后已。

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我的术后心路历程》有61个想法

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  33. Prodentim

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