What exactly is normal?

Lauraine Clarke
Lauraine Clarke
Even though we cope with these serious body conditions and the aftermath of sometimes mutilating surgery (because we have NO choice but to cope), I still have a desire to dress up, show up because I will never give up.

January. The time of year for reflection and change. Christmas mayhem over and it’s back to taking stock, to trying to change or improve your life, to become the best you can be.

Four years ago almost to the date my life changed massively.  Despite having had over 30 ops for bowel disease and endometriosis, I had never really had any serious complications.  I’d bounce back and return to normal life quickly until the next op became necessary.  I’d had an ileostomy in my 20s and cannot even remember life without a bag.  Obviously not having experienced complications is a good thing but it had lulled me into a massive sense of false security.  The hysterectomy of January 2015 caused life changing complications  as my small bowel perforated several times leaving me with an enterocutaneous fistula (ECF). 

So now four years later where am I? Well apart from having to deal with the many other problems that a fistula causes, I’m now quite overweight. I’ve always struggled with my weight mainly down to my sugar addiction but this is different and I’m feeling every pound. On top of my weird eating habits, my mobility is compromised as I’m in constant pain. The January health articles tells us all what to do as social media is bombarded with a myriad of dietary and exercise advice. 

But (and this isn’t an excuse) I am limited in what I can eat and what I can do. Not because of the ileostomy so much, more because of the fistula. I find if I graze I have far less discomfort from the fistula than if I eat normal food in normal quantities. Plus of course having spent many months in hospital on TPN  (trans parental nutrition ), I now have a strange relationship with food. The purpose of TPN was to rest the bowel and encourage it to heal. All nutrition is received intravenously via a central line called a  Broviac®/Hickman® central venous line (CVL) which is inserted under the skin on the chest wall and into a large vein that leads to the heart. Scary stuff !  Once this is in situ, all food and drink is a distant memory.  It’s not the same for everyone, some people can drink and some can even eat but circumstances differ.  In my case it was no food and sips of water initially, then as time went on food was introduced. Now this is where it really becomes stressful as they measure everything that goes in and comes out to establish how bad the fistula is. I became paranoid about eating and found the less I ate, the less problems I had. I was desperate to leave hospital so I had to find a way of getting off TPN. I found if I limited myself to low residue,  high calorie foods, I could just about manage without the TPN. So hello to the cake, chocolate and egg diet ! And yes, you’ve  guessed it, I now have a proper weight problem on top of 3 stoma bags and I really hate myself. So I now  have to somehow wean myself away from my sugar addiction and start losing weight. Apart from the obvious health benefits, it will help my self esteem which is rock bottom. I can’t feel good about myself when nothing fits nicely and wearing a pair of trousers of jeans is just a dream.

May I stress to all you ostomists who may be reading this, this is nothing to do with my ileostomy, I’ve had a stoma for 34 years and it saved my life.  I could eat, drink, party, exercise and lead an almost ‘normal’  life but the freaking fistula is a massive health burden that has changed everything.  

So what is normal? I don’t think there is a ‘one size fits all’.  We are all individual and will have different perceptions of ‘normal’. It’s about finding what works for you and becoming the best you can based on your circumstances. This is where I find social media quite depressing. The images of the perfect bodies seemingly having the perfect lives can be soul destroying when even your pyjamas are tight and your only love affair is with millionaire shortbread! On saying that a friend said to me recently ‘ how would these people cope if they had half our problems’ ( she also has severe gut issues but  looks amazing!). She’s right of course, but even though we cope with these serious body conditions and the aftermath of sometimes mutilating surgery (because we have NO choice but to cope), I still have a desire to dress up, show up because I will never give up 

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 Chron’s disease and ulcerative colitis are examples of conditions that lead to fistulas forming between, for example, two loops of intestine. There are many different types of fistula such as anal fistula or rectovaginal fistula.  Plus some fistula are deliberately created by surgeons between an artery and a vein if someone needs dialysis for example. But here we are looking at Enterocutaneous Fistula (ECF) which is my particular demon  / angel  depending 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.

So an enterocutaneous fistula means an abnormal connection between the bowel and the skin.  It will leak bowel contents onto your skin or wherever the fistula surfaces and usually a bag will be required to control the exudate. 

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  • Hi I have a fistula at the very base of my stoma, which can be very difficult to fit the bag to as poo comes out there too. Am debating surgery which may mean placing stoma the other side of tummy, so not sure yet.

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