Justin’s medical condition – Consultant version

Justin is a no ordinary man. He is extraordinary in every way.

He has had Crohn’s disease for over 10 years and in 2003 underwent major surgery to remove his large bowel and form a stoma (ileostomy).  Unfortunately he developed very serious complications with large abscesses in the abdomen from leaks in the bowel. These leaks came out onto the abdominal wall and are called intestinal fistulas.  His abdominal wall could not be closed up and had to be covered with a special bag.  One year later he underwent surgery to correct this problem and close his abdomen.  In 2007 he underwent an operation to remove his back passage.

All this surgery has resulted in the removal of a large amount of Justin’s bowel.  As a consequence he has insufficient bowel to absorb the nutrition that he requires to survive.

Justin has less than 1/5th of the normal amount of intestines.  This is called short bowel syndrome and as a result he needs to have his nutrition fed directly into his veins.  This is intravenous nutrition and is a form of life support.  He received this for a year around 8 years ago and had to restart it in 2007 as lifelong support. In order to give himself the intravenous nutrition, Justin has a tube (catheter) placed into his chest that goes into a major vein and the tip of this tube lies just inside his heart.  This is literally his lifeline.  However there is a fine line between this tube being a safe way of giving him his fluid and nutrition and being life threatening.  If this catheter becomes infected then it will spread infection around his body in hours.  He has therefore been trained to care for his catheter as a professional.

As if all this was not enough, Justin also suffered from a life threatening infection in 2009.  An infection of his heart valve caused a clot to go into the brain and caused a small stroke.  This was treated with antibiotics and the heart valve had to be replaced.  This is open heart surgery but Justin once again came through and made a good recovery.

Most patients see all this as being just too much to handle. People generally just cope with all this.  Not Justin.  He manages all this and still has energy and drive left to do more.  This is exceptional.  Furthermore he is able to challenge his body to do things that anyone with a healthy body will find hard or impossible.  In 2007 Justin trekked across Norway on a motorcycle and camped in a tent.  Tricky for anyone. Justin managed this and was able to put up his parenteral nutrition (TPN) keeping a sterile field when needed.  He used the motorcycle battery to charge the pump necessary for controlling his intravenous nutrition and dealt he with the pump when it alarmed in the middle of the night.

In 2010, Justin kayaked 240 miles from the Hope Hospital in Salford, Manchester to St Mark’s Hospital in Harrow.  There was a good reason for this.  These two hospitals contain the largest and most specialist intestinal failure units in the country, and are connected by inland waterways.

Now, Justin has a new challenge. In September 2013 he will be kayaking 420 miles from Skipton in North Yorkshire to Bristol in South West England. As far as we know, the completion of this trip will represent a world record for an endurance event surviving on artificial nutrition.

Intestinal failure is the term that is used when the intestines cannot absorb the nutrition that the body needs and therefore a person has to get their nutrition directly into their veins inorder to survive.  This is exactly the problem that Justin has and he is being looked after at St Mark’s Hospital by a really special nutrition team.

It is teamwork that works here.  The expertise of so many different disciplines is required to help patients with intestinal failure.

Patients come to the two intestinal failure units in Harrow and Manchester from all over the UK.  They come to us when other hospitals have reached the end of what they can offer to patients.  We help to get people back, back home, back to work, back to going on holiday and for Justin back to finding new challenges.

It is people like Justin who can show other patients that life is still possible and dreams are still possible despite intestinal failure.  This is something that is truly inconceivable for a patient at the beginning of the road: when they are in a hospital bed coming to St Mark’s with bags on their abdomen, in pain, losing weight and suffering repeated infections.

Justin is an inspiration to us all and is the very reason that I do the job that I do.

Please help this extraordinary man raise money for research into treating this condition.

Dr Simon Gabe
Consultant Gastroenterologist & Honorary Senior Lecturer
Co-Chair of the Lennard-Jones Intestinal Failure Unit