What Is A Fistula & How Does It Affect Me

Lauraine explains what a fistula is and how it affects her

What Is A Fistula And What Causes Them?

Fistulas are usually caused by injury or surgery, they may also form after an infection has led to severe inflammation. Inflammatory bowel conditions such as Crohn’s Disease and Ulcerative Colitis are examples of conditions that lead to fistulas forming, for example, between two loops of intestine. There are many different types of fistula such as an anal fistula or rectovaginal fistula, plus some fistulas are deliberately created by surgeons between an artery and a vein if someone needs haemodialysis for example. In this case, I want to talk about an enterocutaneous fistula which is my particular demonor angeldepending on how you look at it!

So What Is An Enterocutaneous Fistula?

This can be explained by breaking down the words into their different parts:

‘Entero’ means bowel or gut.

‘Cutaneous’ means skin

‘Fistula’ is an abnormal connection between 2 surfaces.

所以肠瘘意味着肠和皮肤之间的连接不正常。

Despite the fact they are viewed as a devastating complication, they are actually saving your life. If the bowel contents resulting from a perforation collected inside you and did not come out via the fistula, you would develop sepsis and become seriously ill.

I try and remind myself of that every day but it’s not easy. I have never accepted my fistula and I struggle with it, not everyone’s coping mechanisms are the same. If a fistula is as a result of a life saving bowel surgery for example, then maybe it would be easier to accept, I don’t know. They cannot tell me why mine happened, I went in for a hysterectomy in pretty good health but ended up with a fistula. I did have a long history of chronic health problems, bowel disease for which I have an ileostomy plus severe endometriosis but the experts say these conditions have not caused the fistula. Attempt at repair two years later nearly killed me as I had respiratory failure. They cannot give me any medication as they cannot find any underlying disease yet it doesn’t heal. It’s not stable and causes frequent problems with infections and pain, often requiring a hospital visit.

So What Does This Mean For Me?

A fistula is a dreaded complication of surgery or illness –acomplex medical and surgical problemthat will need to be managed initially by a large number ofhealthcare professionals working as part of a multidisciplinary team. The team will focus on four main areas:sepsis, nutrition, anatomy and protection of skin.

The defects in the bowel produced by the fistula can result in bacteria leaking into the abdomen, causing a collection of pus. This is often referred to as ‘abdominal sepsis.’ If this is suspected, imaging (e.g. a CT scan) will be used to see where the collection is. The collection will need to be drained using a small tube and treated with antibiotics.

The main role of the bowel of course is toabsorb nutrientsfrom food and fluid. If there is a connection between the bowel and the skin, there is less time for the nutrients to be absorbed, and some nutrients will be lost through the fistula, usually into a bag placed over it. In addition, when the body isfighting infectionit needs more nutrition than normal. Therefore, with less absorption and higher nutritional requirements, patients with fistulae can quickly becomemalnourishedand lose weight. Electrolytes are the salts in the blood like sodium, potassium and magnesium. These are vital for many important functions, including regulating fluid balance and controlling our heart and muscle contractions. The problems with absorption can result in losing huge quantities of these salts from the body. This can result indehydration and cramps which can lead to more serious complications.Whilst in hospital, the team may replace the salt and fluid using intravenous fluids or you may also be put on Trans Parental Nutrition (TPN) which means you will receive all your nutrition through a central line. This will ensure you get all the essential nutrients required amongst other things to facilitate healing, whilst resting your damaged bowel. TPN is called ‘liquid gold’ by some people as it is tailored to your individual needs depending on specialised blood tests. But like everything, there are massive down sides. I have been on it a few times for a few months at a time. Some people are never able to come off it.

Leakage from a fistula can be a distressing experience. The same enzymes in your gut that will digest a juicy steak will make contact with your skin and cause it to becomeexcoriated这意味着皮肤会变得又红又酸,就像那块肉一样。这是非常痛苦的,容易感染,使糟糕的情况更糟。因此,瘘管病护理工作人员,由一名造口专科护士领导,对预防这些问题是至关重要的。药物也可以用来减少瘘管的输出和酸度。当你在医院的时候,你会看到一个造口护士,护理计划将被放在病房护理人员遵循的地方。一旦出院,如果出现任何问题,你将获得一个造口护士。如果有必要,他们会偶尔做家访,或者你可以去医院。

The ongoing management of a fistula depends on so many factors. Each fistula is individual to that person and it’s very hard to generalise. Some people will have their fistulae repaired by undergoing more surgery. Unless faced with an emergency situation, there is usually a wait of at least 12 months before this can be attempted. Some people will have to continue to receive nutritional support at home (Home Parental Nutrition or HPN) through their central vein as the damage to the gut is too great and normal nourishment would mean essential nutrients would be lost resulting in malnourishment. In other words the food and waste would come out of the fistula before giving the bowel the chance to do its job – absorb all the nutrients and fluid from what we eat and drink. It depends of course on where in the bowel the fistula is. HPN tends to happen more with a fistula that is high up in the bowel, this usually means the fistula output is high (as much as several litres per day). If however the fistula is lower down and the output from the fistula is fairly low (under 200ml per day), then it’s usually possible to eat and drink normally, whilst wearing a stoma bag over the fistula. In my case I now wear two bags; one for the ileostomy which has served me so well for 33 yearsand one for the fistula. My fistula is before my ileostomy so you’d think everything would come out of the fistula. Thankfully this isn’t the case. Most goes out through the ileostomy which is great news but some comes out of the fistula and whilst this connection remains it will never heal spontaneously.

如果瘘管的原因被发现是炎症性肠病那么有时可以给一些药物来治愈肠道和瘘管。很可能你必须在一段时间内继续服用这些药物来控制潜在的疾病,这反过来可能会使瘘管闭合。

Sometimes no definite cause can be found for the fistula and the patient may not be suitable for surgical repair. In these cases the patient will have tomanagethe fistula. This can prove to be very challenging, as it is likely the patient will need to wear a stoma bag over the fistula along with dealing with the daily problems a fistula can bring. As a fistula is quite often recessed into the skin ( unlike a stoma which has a ‘spout’), managing the bag can be tricky as leaks are often frequent but there are ways around this and your stoma nurses will be a valuable resource. I personally have found a wound bag to be most effective, it’s not pretty but it does the job, most of the time anyway.

A fistula is essentially a tube which our brilliant bodies make to keep us alive. Unfortunately infections in this tube and surrounding areas are common and may require periodic treatment with antibiotics and /or painkillers.

瘘管被认为是一种外科灾难。它们肯定是非常困难的并发症,对医疗专业人员来说是极具挑战性的。然而,主要的挑战必须由患者来应对——就我而言,我发现它改变了我的生活。在健康状况良好的情况下做手术,结果却得了瘘管病,这是毁灭性的。在此之前的33年里,我已经有了一个造口囊,并且处理得很好,全职工作,过着正常的生活。我根本不需要做造口手术的护士。然而,这是如此不同,更困难的方式,三年后,它仍然是我生活中的一个重要因素。它不是那么稳定,经常导致突然的疾病,这意味着我不能真正拥有我曾经拥有的生活。This is mynew normaland I ( or I should say ‘we’ as it affects your nearest and dearest too ) are still learning toaccept.

But we carry on and enjoy the good days. I am actually very lucky compared to some fistula patients but I am obviously very sad it happened and struggle with the ongoing consequences.

I hope this has given you some insight into what an enterocutaneous fistulaactually is.