Living with a fistula: friend or foe

Living with a fistula: friend or foe?

Thirty-five years ago, I had an ileostomy for bowel disease, it gave me my life back.

Five years ago, I had a hysterectomy for severe endometriosis.  It nearly killed me, and my bowel perforated – I was introduced to the world of fistula, something I’d never even heard of.  A fistula is basically an abnormal passageway between an organ and some other surface; in my case it goes from my small bowel to my skin.  It’s horrible and I’ve struggled with it from day one.

Three years ago, I had an operation to try and repair my fistula.  This operation failed, gave me sepsis, respiratory failure and I ended up with a worse fistula than I went in with.  I was vein fed for 3 months which caused liver problems and gallstones.  I also have PTSD and depression as a result of this surgical disaster. Definitely my Wilderness Experience.

I now have 3 bags to manage, but this situation is not going to go away, so I have to somehow deal with it all, I really have no choice.  Since getting some psychological support I’m now trying to live with it rather than wishing it would all go away as that isn’t going to happen.   

So, what is day to day life with a fistula like?

At first it was a nightmare!  I’d had a rather well-behaved stoma for practically all of my adult life.  It made me well, didn’t impact on my life one bit.  I never really spoke about it as in those days it was one of life’s ‘unmentionables.’  But that was ok, as why would I talk about my toilet habits?!  I just got on with it and it was mostly without problems.  I worked full time and just lived my life.  Plus, since the acquisition of a stoma had made me well, I could look after my little girl who was just 2 years old so I saw it as a gift Pray

Management of a fistula however is a totally different beast.

For example, prior to acquiring the fistula, I had a stoma on my right-hand side.  I’d change the bag two or three times a week and all I needed was- a bag!  I’d have a bagless shower, apply a clean bag and that was it, job done!  It rarely leaked and if it was going to leak, I’d get some warning, usually in the form of itching, alerting me to the fact the bag needed to be changed. It was as much a part of me as one of my limbs.  I didn’t miss my rotten colon one bit. 

The fistula – oh what an ordeal!  It took me months to find a bag that didn’t leak.  I tried so many different products and methods of application, but they all failed.  My fistula is currently a small little lump recessed in my midline scar so getting a bag to stick is not easy. The output varies from a liquid to a sludge.  It’s not always faecal, but it is always there and never stops.   

I eventually found an Eakin wound bag to be the most reliable and even though it’s not pretty, it does the job (at least some of the time).  I have to change the bag every day.  Even if it doesn’t leak, the output burns my skin so every night I have to go through the same routine:

  • 7pm shower with bags on. I make a gap at the top of the fistula bag and run water through it to give it all a good clean. 
  • Lay out my kit - lots of paraphernalia - so different from a stoma!

  • Warm all bags and sticky extras on radiator to have a hopefully better result.
  • Remove old bags and clean skin with various wipes until all pristine!
  • Replace stoma bag, that bit is easy.
  • I require help with the fistula bag. The hole on the bag has to be cut to size and bear in the mind the fistula changes.  Sometimes it gets smaller, other times bigger or a new one will develop.  At first I had 3 on my midline scar so that was very difficult.  Now I have one on the midline and another one on the left.  I have to lay completely flat and my husband will apply the wound bag which needs various pastes and wafers to get a reasonable seal.
  • Apply 3rd bag to left hand fistula. This can sometimes be managed with a dressing, it depends on how active it is.
  • Lie still for an hour and apply heat to my abdomen. A hot water bottle does the job! Great in the winter, not so in the summer!

It takes about two hours from start to finish.   Every Single Day Of My Life.  It’s a real health burden I could live without but I’ve been told more surgery could make things worse and I could end up on permanent parental nutrition which can cause a host of new problems ( plus you can’t always eat or drink and having had experience of that, it is just hell).  So, I’m stuck with it and I live in fear of it every day as I know how quickly it can make me very, very ill. 

So, friend or foe? The thing is about my fistula is it’s probably keeping me alive.  If it stops draining it usually means it’s blocked and I invariably become very ill as all the toxins from the damaged piece of gut leech into my system rather than escape via the tube (fistula).  I’ve had sepsis a few times since this happened and it’s just awful.  My husband has named my fistula AD (for Absolute D**k) because at times that describes it perfectly).

So, AD and I are reluctant friends, one I didn’t choose and one I could live without but one that is actually doing a very important job. 

Footnote – the development of an enterocutaneous fistula (ECF) is a very rare complication of surgery. I had a combination of factors that led to this over many years thereby creating ‘The Perfect Storm.’  Mine has not been caused by Crohn’s, in fact I have not had any definitive answers on the cause.  I’ve been told it’s probably ‘iatrogenic’ i.e. caused by complications of surgery.       

The majority of people with a stoma do not get an ECF!

  • Hi what a nightmare for you, I am relatively lucky in that my fistula is attached to my stoma so one bag does it ( although it poos about the same amount as my stoma so can leak ) I hope one day something can be done for you.