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患克隆氏症近10年 痛到想放弃自己

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发表于 2017-10-2 17:43 | 显示全部楼层 |阅读模式
患克隆氏症近10年 痛到想放弃自己
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1/10/201717:56  http://www.kwongwah.com.my/?p=398695

[backcolor=rgba(120, 124, 129, 0.3)]她连起身都需要妈妈在一旁搀扶,否则就没力气起身。每天需要服食不同的药物,来减轻痛楚。


(吉隆坡1日讯)是否曾经听过克隆氏症?它是一种可以令病患痛不欲生的病症,最严重时可以说是每隔十秒痛一次,腹痛腹泻天天找上门,这种痛楚谁能了解?而不幸患上此病症的曹淑芬苦忍多年,没有办法之下恳请社会大众伸出援手,急需10万令吉医药费让病情不再恶化!

35岁的曹淑芬在2009年开始患上克隆氏症(Crohn’s disease),刚开始是胃不舒服,医生把它当做胃痛来医治,病情一直没有好转反而更为严重,期间也探访过无数医生,直到2012年才发现不是患上胃病,而是在大马有20万人中只有1人会患上的克隆氏症。

“你想象肚子里面好像有蛇在扭转,真的痛到大喊大叫,一直哭一直哭,那种痛你是没办法想象得到的。”



从80瘦到40公斤

病魔每天反复折磨她,从原本80公斤的胖妞变成今时今日只剩40公斤的瘦骨如柴,甚至痛到连一口水也无法咽进肚里,根本没胃口,完全不想吃也不想喝,“想干脆放弃自己算了。”

除了痛得死去活来,根本连站起来的力气都没有,上厕所或是要起身都需要靠妈妈搀扶才能起身。记得有一次在巴刹跌倒,现场有5、6个人都没有办法一起扶她起来,最后只能被人抱着回家。

她回忆,2012年动过一次手术,医生开刀把小肠切了42寸,当时的小肠已经薄得像纸巾一样,幸好手术成功也没有生命危险,原以为就这样会康复,摆脱病魔,殊不知开刀的地方发炎,结果大肠和小肠处有3个不同地方变窄,因为食物不能顺利通过肠的部分,她再也不能吃高纤维的食物,肠道已经细得像头发一样。

病情加重的她,每一天都在喊痛,父母是看在眼里痛在心里,一直想要为孩子减轻痛楚,到处找医生,什么药方都尝试过,情况却没有改善,反而越来越严重,直到朋友介绍她去中国中山医院治疗,病情才出现好转。

在过去为了医治曹淑芬的病症,曹家几乎花光积蓄,即使她有买医药卡也是属于旧款的,只能索偿9万令吉,很快就所剩无几,如果再没有办法拿出一笔钱去中国治疗,父母已经盘算可能要将居住的单位变卖换取女儿的续命钱,“要不是迫于无奈,我也不会想要筹款,在没有办法之下,才恳求大众能够帮助我。”

日渐瘦弱的曹淑芬续说,从去年开始就前往中山医院治疗,至今已治疗4次,只有在那儿她的病情才有好转,但是如果她拖得太久没去打针吃药,病情又会再次复发,而且会变本加厉。

较早前,在没有办法之下她在个人脸书分享自己的病情借此筹款,有些人很热心帮助,有些则半信半疑,她希望,借助报章的力量能够帮助她早日筹得款项到中国治疗。

[backcolor=rgba(120, 124, 129, 0.3)]桌上摆放着一堆药物,在8月份时刚从中山医院回来,带着药物才能帮助她不让病情恶化。


前男友撂狠话:早知有病就不在一起

这个病症让曹淑芬看清现实社会的残酷,前男友就是因为她患病,撂下狠话:“早知道你有病,就不会在一起了。”

雪上加霜的是,一手辛苦创立开办的补习中心,最后也因为她生病,家长们不再让孩子去中心补习,这些都让她痛上加痛。

但无论怎样痛都好,她坚持要活下去,若有一天能够健康站起来,她要回报父母、回馈社会。

期盼康复回馈社会

“我病了快接近10年了,曾想过要放弃,每天都和妈妈说我想死掉算了,因为我根本只能躺在床上像个废人一样,妈妈她每天都为了我为了家里忙,爸爸也一样在家专心照顾我,他们都无怨言。”

她说道,“曾经有和妈妈说让我死吧!一了百了,把骨灰撒在大海”,妈妈哭着说,“我还没放弃,为何你那么想不开要放弃自己。”至于是什么让她坚持到现在,淑芬道,是家人让她坚持至今,再加上身边的朋友鼓励,还有家中2只狗狗的陪伴,让她想要为他们而努力坚持,她想象活着是很美好的,她想要努力活着每一天。

“如果有一天我能康复,我会回馈社会,我很喜欢狗狗,以后有能力的话会去当义工为流浪毛孩做些什么,还有捐助孤儿院等等。”这个病症已经让她痛苦了9年之久,她已经受够病痛的折磨,如今中国中山医院的设备完善,中西合璧,还有服用类固醇帮助她减轻痛楚,在那儿能够更好的医治她,给她一次重生的机会。

[backcolor=rgba(120, 124, 129, 0.3)](左)患病前的曹淑芬,明艳照人。(右)曹淑芬不幸患上克隆氏症,从80公斤的胖妞变成今时今日只剩40公斤,瘦骨如柴。


贺志鸿:避免患克隆氏症 经常肚疼消瘦需检查

当肚子出现不适甚至突然消瘦,而且排泄呈水状时,千万不要掉以轻心,一定要及时进行身体检查。

槟城医院肠胃科医生贺志鸿说,克隆氏症(Crohn’s disease)是属于一种肠道发炎疾病,一般上较难及早发现,所以感觉到肚子疼痛、突然消瘦及排泄呈水状时,不要掉以轻心,一定要去检查。

“原本这病症较为少见,但是现在有日渐增加的趋势,大部分与日常饮食习惯相关。”

他说,要确保避免患上这病症当然是基本要饮食及运动均衡,不过当面对肚子一直出现不适或疼痛时一定要检查,不要忽略。一旦患上克隆氏症后,患者肠道需进行手术而变小,然后吸收能力也变差,也导致营养不良,所以会突然消瘦。

他说,患上克隆氏症病患必须服用类固醇,主要是避免肠道继续发炎,也减轻患者的痛楚。

了解克隆氏症

它是一种发炎性肠道疾病,可能影响肠胃道从口腔至肛门的任何部分,症状通常包含腹痛、腹泻(如果发炎严重可能会呈血性)、发烧和体重减轻,是由环境、免疫和细菌等因素在遗传易感个体上的组合所引起的,它会导致慢性发炎疾病,身体的免疫系统可能针对肠胃道的微生物抗原进行攻击,目前并无任何药物和手术能根治克隆氏症,只在于改善症狀,使病情缓解以及预防复发。

新诊断为克隆氏症的病人通常会接受短暂的类固醇治疗,使病情有显著的改善。(资料来自谷歌)

本报代收义款 请帮她减轻痛苦

救救她,虽然克隆氏症被医生诊断为不治之症,但是所筹获的善款可以帮助她减轻痛楚,不再让病情恶化,让她有延续生命的机会。

有意捐助曹淑芬的社会热心人士,可在办公时间,周一至周五,早上9时至下午6时(1时至2时为午休时间)将义款交到《光华日报》总社“好人好事”义款部或各地办事处,交由本报代收;或者将义款直接汇入“好人好事”户头(Kwong Wah Yit Poh Press Berhad),CIMB银行户头号码:8004320381或OCBC银行户头号码:730-109307-2。

汇款后须将收据传真到光华总社义款部:04-2617724(9am-6pm),或电邮至donation@kwongwah.com.my,并附上捐款者姓名、转账者英文姓名(Acct. Name)、电话、地址,捐款对象及款项,以便寄出正本收据。

此外,读者可通过支票或WANG POS方式捐款,抬头注明:KWONG WAH YIT POH PRESS BHD CHARITY FUND,邮寄到:《光华日报》义款部,地址:19,Lebuh Presgrave,10300,Pulau Pinang。


x 0 我要送花

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 楼主| 发表于 2017-10-2 17:44 | 显示全部楼层
Michelle ChooSeptember 24 at 9:15am · https://www.facebook.com/michelle.choo.16?hc_ref=ARQgOqEPbXLYUdpbryhEsxNWAZFN0xQ6IuMoltqxReVgjyZQxRbtmfu0o74RRbWN3zQ&fref=nf


希望每个看到这个po的都可以捐rm10给我,每个小步都可以让我迈进一步。
你的一個share和like,对我很重要!!!
我真的很需要这笔筹款尽快到中国中山医院治病。筹款了几天已经达到三十多千,但是距离我要到中国的医院治疗的费用还相差一大截。
请大家把我的故事分享给更多人知道,也谢谢所有捐款给我的热心人士,我会努力对抗这个顽强的克隆氏症。
我从一个八十多公斤的胖妞,变成不到四十公斤的骨头人。我的克隆氏症已经破坏了我身体整个消化系统,消化系统指的是从喉咙开始到屁股洞,我的屁股开始每天都在流脓。克隆氏症,是指免疫力出现问题,去攻打自己的消化系统,而这个病,比癌症更严重,它不会好回,只会慢慢地在折磨着我,然后病患就因为身体缺乏营养而死去。现在的只能在中国中山结合中西医的医疗,把我的病情压抑下去,让他不再恶化。
其实,想了很久,到底应该写这个po吗?
我是克隆氏症病患,在马来西亚,每两百千个人只有一个。我从09年病倒到现在,医生一直把我当胃病医,直到12年发现原来不是胃病,是小肠要爆了。结果开刀把小肠切了42cm,当时的小肠已经薄得像tissue一样,还好没有生命危险。
12年开刀地方开始发炎,结果大肠小肠内有三个地方变窄。我不能吃任何high fiber食物,因为食物通不过。因为肠道细得像头发一样。
当痛折磨我时,是大概每十秒一次,痛得死去活来,也吃不下,可以几天内连一口水也喝不下,喝一口水一桶水,每天都泻十多二十次,大部份时间都只能躺在床上。
在中国治疗时,厕所都是蹲着的,我根本没力气起来,都是妈妈抱我起来的。最离谱的一次是我大号了,在医院厕所爬出来。脚根本没力气,一级楼梯都上不到,好几次都在马路旁因为脚抬不起来而向后跌,弄得头破血流。
曾经在菜市跌倒,五六个人来扶我都站不起来。
同善医院的医生唯有为我打类固醇,但根本压抑不到身体的发炎。我的病势是自己的免疫系统攻击消化系统,医生说再不能就把大肠小肠都切了。但是马大教授说我还年轻,不要做这种手术。同善医院和马大就像我第二个家。
结果一直不停在外面看中医,买产品,买所谓的箭猪枣都被骗了不少钱,根本都没有效。应该说,不但没有效,而且越来越严重,一直不停住院。爸妈的积蓄都花光了,还想着可能要把我们住着的小公寓卖了。我的健康卡是旧款的,一生人只能claim90千,我也用到所剩无几了。
直到去年去中山医院医两次,我病情有好转,但是过后我拖得太久没去打针吊药,又再复发,而且更严重。进了两次医院,瘦的剩下三十多公斤,像个非洲难民般。医生说我会因为没有营养而被折磨死去。
结果最后次进第二次进同善医院,医生吊药令我皮肤敏感,花了好几个月都不能好回,全身严重脱皮和肿,晚上睡不到,因为晚上特别痒。然后被逼又再进院,才发现原来我对albumin过敏,当时奶奶又去世,我连基本的孝道都尽不到。
DR KUAH 说我太弱了,骨头也开始变脆。我真的连提起脚走路的力气都没有。坐飞机到中国治病,在机场里都是用轮椅的,多少路人投来异样的眼光。
我病了快接近十年,想过要放弃,每天根妈妈说我想死,因为我根本只能躺在床上像个废人。妈妈辛苦的照顾我,把教车工作给放了,专心照顾我。让我感觉我自己更像一个废人。和妈妈说让我死吧,把我烧了撒在大海。妈妈哭着说她都没放弃我,我为什么要放弃自己呢?我不想看到妈妈每天以泪洗脸。
现在我要去的医院,是十大医院之一。他们医疗设备先进,中西合拼。医生要我在那里逗留至少一年,整个医药费用大概四百多千。
我真的拿不出这笔钱,所以才开帖请大家帮帮忙。
现在的我没有假发都不敢出去,头发掉太多了路上的人都会对我指指点点,批评我太瘦和没头发,真的很伤我。
多多益善,谢谢大家,谢谢各位善心人士。

Hong leong bank
Choo soo fun
245-0000-9916

Your share and like, it's important to me !!!
I really need to raise some fund as soon as possible to the Chinese hospital in Zhongshan. Fundraising for a few days has reached more than thirty thousand, but there is still a huge gap with the medical cost needed
Please share my story to more people know, but also thank all the donations to friends that has been donated, I will try to fight this chronic disease.
I am from a more than 80 kilograms of fat girl, into less than forty kilograms. My disease has destroyed my whole body especially the digestive system, the digestive system is from the throat to the annal, my anal began to pus everyday. Crohn's disease refers to the problem of immunity, to attack their own digestive system, and the disease, more serious than cancer, it will not be able to recover, but it will only slowly tortured me, and then the patient will die due to lack of physical Nutrition. Now only if I am able to be treated in Zhongshan, China combined with Chinese and Western medicine, my condition will be under control.
I am a Crohn's disease patient, and in Malaysia, there are only one for every two hundred thousand people. I fell from the 2009 to the present, the doctor has been treated it as my stomach disease, until 2012 they found that is not stomach, but the small intestine is about to burst. And the 42cm of small intestine were removed, when the small intestine has become very thin, but fortunately no life-threatening.
I can not eat any high fiber food because the food can't pass through the intestine. Because the intestine is as thin as the hair.
When the pain tortured me, is about once every ten seconds, most of the time I can only lie in bed.
In China, due to it is squatting toilet, I don't even have the strength to stand up. I always needs my mother to hold me up. Feet did not have the strength, I can't even lift my leg and step on a staircase step. And sometimes due to this reason, I lose balance and fell backward, and hit my head
Tong Shan hospital doctors gave me steroids, but simply not suppress the body's inflammation. My disease is their own immune system to attack the digestive system, the doctor said worse case, I have to remove the whole intestine. But Professor Ma said that I was young, do not do this surgery. Tong Shan Hospital and Ma Da is like my second home.
I tried chinese medical treatment, buy products, buy the so-called arrow pig juvenile, simply no effective. It should be said that not only ineffective, and it became more serious, has been kept in hospital. Mom and Dad's savings are spent, but also thinking about the need to sell our small apartment. My health card is old, life can only claim 90 thousand, it has been used up. Until last year to Zhongshan Hospital, twice , I have a better condition, but after I dragged too long did not go back for treatment, and then relapse, and more serious. I am now left more than thirty kilograms, like an African refugees. The doctor said I would be tortured to die without nutrition.
DR KUAH said I was too weak, the bones also began to brittle. I really did not even have the strength to lift my feet.
I was sick for almost ten years, thought to give up, I told my mother I want to die, because I can only lie in bed like a waste. Mother have to take care of me, scarify her work, and concentrate on taking care of me. Let me feel like I am more like a waste. Mother crying that she did not give up on me, why should I give up myself? I do not want to see my mother crying everyday.
Now I want to go to the hospital, is one of the top ten hospitals. Their advanced medical equipment, Chinese and Western combination. The doctor asked me to stay there for at least a year, the whole medical costs about four hundred thousand.
I really can't afford it, so I would like to ask for your help.
Thank you very much, thank you kindly.希望每个看到这个po的都可以捐rm10给我,每个小步都可以让我迈进一步。
你的一個share和like,对我很重要!!!
我真的很需要这笔筹款尽快到中国中山医院治病。筹款了几天已经达到三十多千,但是距离我要到中国的医院治疗的费用还相差一大截。
请大家把我的故事分享给更多人知道,也谢谢所有捐款给我的热心人士,我会努力对抗这个顽强的克隆氏症。
我从一个八十多公斤的胖妞,变成不到四十公斤的骨头人。我的克隆氏症已经破坏了我身体整个消化系统,消化系统指的是从喉咙开始到屁股洞,我的屁股开始每天都在流脓。克隆氏症,是指免疫力出现问题,去攻打自己的消化系统,而这个病,比癌症更严重,它不会好回,只会慢慢地在折磨着我,然后病患就因为身体缺乏营养而死去。现在的只能在中国中山结合中西医的医疗,把我的病情压抑下去,让他不再恶化。
其实,想了很久,到底应该写这个po吗?
我是克隆氏症病患,在马来西亚,每两百千个人只有一个。我从09年病倒到现在,医生一直把我当胃病医,直到12年发现原来不是胃病,是小肠要爆了。结果开刀把小肠切了42cm,当时的小肠已经薄得像tissue一样,还好没有生命危险。
12年开刀地方开始发炎,结果大肠小肠内有三个地方变窄。我不能吃任何high fiber食物,因为食物通不过。因为肠道细得像头发一样。
当痛折磨我时,是大概每十秒一次,痛得死去活来,也吃不下,可以几天内连一口水也喝不下,喝一口水一桶水,每天都泻十多二十次,大部份时间都只能躺在床上。
在中国治疗时,厕所都是蹲着的,我根本没力气起来,都是妈妈抱我起来的。最离谱的一次是我大号了,在医院厕所爬出来。脚根本没力气,一级楼梯都上不到,好几次都在马路旁因为脚抬不起来而向后跌,弄得头破血流。
曾经在菜市跌倒,五六个人来扶我都站不起来。
同善医院的医生唯有为我打类固醇,但根本压抑不到身体的发炎。我的病势是自己的免疫系统攻击消化系统,医生说再不能就把大肠小肠都切了。但是马大教授说我还年轻,不要做这种手术。同善医院和马大就像我第二个家。
结果一直不停在外面看中医,买产品,买所谓的箭猪枣都被骗了不少钱,根本都没有效。应该说,不但没有效,而且越来越严重,一直不停住院。爸妈的积蓄都花光了,还想着可能要把我们住着的小公寓卖了。我的健康卡是旧款的,一生人只能claim90千,我也用到所剩无几了。
直到去年去中山医院医两次,我病情有好转,但是过后我拖得太久没去打针吊药,又再复发,而且更严重。进了两次医院,瘦的剩下三十多公斤,像个非洲难民般。医生说我会因为没有营养而被折磨死去。
结果最后次进第二次进同善医院,医生吊药令我皮肤敏感,花了好几个月都不能好回,全身严重脱皮和肿,晚上睡不到,因为晚上特别痒。然后被逼又再进院,才发现原来我对albumin过敏,当时奶奶又去世,我连基本的孝道都尽不到。
DR KUAH 说我太弱了,骨头也开始变脆。我真的连提起脚走路的力气都没有。坐飞机到中国治病,在机场里都是用轮椅的,多少路人投来异样的眼光。
我病了快接近十年,想过要放弃,每天根妈妈说我想死,因为我根本只能躺在床上像个废人。妈妈辛苦的照顾我,把教车工作给放了,专心照顾我。让我感觉我自己更像一个废人。和妈妈说让我死吧,把我烧了撒在大海。妈妈哭着说她都没放弃我,我为什么要放弃自己呢?我不想看到妈妈每天以泪洗脸。
现在我要去的医院,是十大医院之一。他们医疗设备先进,中西合拼。医生要我在那里逗留至少一年,整个医药费用大概四百多千。
我真的拿不出这笔钱,所以才开帖请大家帮帮忙。
现在的我没有假发都不敢出去,头发掉太多了路上的人都会对我指指点点,批评我太瘦和没头发,真的很伤我。
多多益善,谢谢大家,谢谢各位善心人士。
Hong leong bank
Choo soo fun
245-0000-9916
Your share and like, it's important to me !!!
I really need to raise some fund as soon as possible to the Chinese hospital in Zhongshan. Fundraising for a few days has reached more than thirty thousand, but there is still a huge gap with the medical cost needed
Please share my story to more people know, but also thank all the donations to friends that has been donated, I will try to fight this chronic disease.
I am from a more than 80 kilograms of fat girl, into less than forty kilograms. My disease has destroyed my whole body especially the digestive system, the digestive system is from the throat to the annal, my anal began to pus everyday. Crohn's disease refers to the problem of immunity, to attack their own digestive system, and the disease, more serious than cancer, it will not be able to recover, but it will only slowly tortured me, and then the patient will die due to lack of physical Nutrition. Now only if I am able to be treated in Zhongshan, China combined with Chinese and Western medicine, my condition will be under control.
I am a Crohn's disease patient, and in Malaysia, there are only one for every two hundred thousand people. I fell from the 2009 to the present, the doctor has been treated it as my stomach disease, until 2012 they found that is not stomach, but the small intestine is about to burst. And the 42cm of small intestine were removed, when the small intestine has become very thin, but fortunately no life-threatening.
I can not eat any high fiber food because the food can't pass through the intestine. Because the intestine is as thin as the hair.
When the pain tortured me, is about once every ten seconds, most of the time I can only lie in bed.
In China, due to it is squatting toilet, I don't even have the strength to stand up. I always needs my mother to hold me up. Feet did not have the strength, I can't even lift my leg and step on a staircase step. And sometimes due to this reason, I lose balance and fell backward, and hit my head
Tong Shan hospital doctors gave me steroids, but simply not suppress the body's inflammation. My disease is their own immune system to attack the digestive system, the doctor said worse case, I have to remove the whole intestine. But Professor Ma said that I was young, do not do this surgery. Tong Shan Hospital and Ma Da is like my second home.
I tried chinese medical treatment, buy products, buy the so-called arrow pig juvenile, simply no effective. It should be said that not only ineffective, and it became more serious, has been kept in hospital. Mom and Dad's savings are spent, but also thinking about the need to sell our small apartment. My health card is old, life can only claim 90 thousand, it has been used up. Until last year to Zhongshan Hospital, twice , I have a better condition, but after I dragged too long did not go back for treatment, and then relapse, and more serious. I am now left more than thirty kilograms, like an African refugees. The doctor said I would be tortured to die without nutrition.
DR KUAH said I was too weak, the bones also began to brittle. I really did not even have the strength to lift my feet.
I was sick for almost ten years, thought to give up, I told my mother I want to die, because I can only lie in bed like a waste. Mother have to take care of me, scarify her work, and concentrate on taking care of me. Let me feel like I am more like a waste. Mother crying that she did not give up on me, why should I give up myself? I do not want to see my mother crying everyday.
Now I want to go to the hospital, is one of the top ten hospitals. Their advanced medical equipment, Chinese and Western combination. The doctor asked me to stay there for at least a year, the whole medical costs about four hundred thousand.
I really can't afford it, so I would like to ask for your help.
Thank you very much, thank you kindly.





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