Real Life Stories – Lauraine

Lauraine has IBD, which has resulted in an ileostomy and she also suffers from endometriosis and an enterocutaneous fistula. Here, Lauraine tells us her story and how she is learning to live with her illness.

“32年前,我被诊断出患有溃疡性结肠炎,因此需要做回肠造口术。我做完手术后,医生告诉我,我的情况更像是克罗恩病。在做手术之前,生活很艰难!当时我20多岁,有一个两岁的女儿,我丈夫在海军服役,所以我基本上是孤身一人,没有父母的帮助。我每天要上20次厕所,带着带血的腹泻,我经常不舒服,好几周都不能和我的小女儿在医院里待着。因为这个病,我失去了我的第二个孩子,我也失去了工作,我无法工作。

After I got my ileostomy things improved considerably, my husband had left the navy and I found a new job. I started to experience lower abdominal pain, which the doctors first put down to adhesions. An MRI found a mass, which they were concerned was ovarian cancer so I ended up having an emergency laparotomy and they found that I had severe grade 4 endometriosis. The surgeons closed me up as my insides were seriously stuck down with the endometriosis and I spent my 30’s and 40’s in a lot of pain and having many surgical procedures to control the disease.

2015年1月,我做了更多的扫描,发现有不正常的肿块,我的妇科团队觉得把这些留在里面太危险了,所以我预约了子宫切除手术。在此之前,我的身体一直比较健康,自从我做了回肠造口手术后,就没有再出现过肠道问题。在子宫切除手术后,我经历了严重的并发症,手术非常困难,我的肠道最终穿孔,内容物淹没了我的腹部。我以为我要死了,事实上我想我可能死了。当时我住在一家私立医院,我不得不转到一家教学医院,因为我的顾问当时不在。情况迅速恶化,我最终接受了3个月的TPN,为了让穿孔愈合,我不能吃或喝任何东西。我发现我并不是很想念食物,但不能喝水是一种折磨。穿孔只部分愈合最后我得了肠皮瘘。有很多不同类型的瘘管最初的输出量很低我可以用敷料来控制引流,很快引流就变得更严重了需要我在上面放第二个造瘘袋。我发现吃东西会让排水沟更糟,所以我会限制我吃的东西,也不会在任何人面前吃东西。 Instead I would graze on sandwiches and biscuits in my room. I was devastated at having this fistula. Again, I became frequently unwell and needed antibiotics. I ended up in hospital again as another fistula burst through. This condition is unpredictable and took over my life. I stopped going on holiday, stopped having weekends away and there was no intimacy.

In March of this year, my surgeon felt that enough time had passed to attempt to repair the fistula. The surgery was once again difficult and I developed sepsis, went into respiratory failure and ended up in intensive care. The repair to my bowel failed and ended up with an even worse fistula and back on TPN for another 3 months.

I have struggled to accept what has happened and I’m hoping that the fistula heals, even though this is unlikely. I feel it still controls me and I still have a strange relationship with food. I am quite well most of the time but I find that negativity and depression can swamp me at times. I’m awaiting counselling to help me deal with chronic illness. When I am well, I love looking after my granddaughter and my nephews – they are my world.

If I could offer any advice to those in a similar situation it would be don’t let this control you as I have. Make the good days count and rest on the bad days. I don’t feel like I have overcome it yet but I am still trying.”