Carmel’s Story

... by Wim's mum

Wim is our third child, now aged 16.  He is a frequent flyer at the Royal Children’s Hospital in Melbourne, so much so that I have a sheet of co-morbidities that I take with us whenever we attend.  Thirteen items on this list are not gut-related, and nine of them are gut-related.  These are what this article is about.

From when Wim started solid food, he has had constipation.  Like his sister & brother, dairy played a large part so was eliminated early.

We tried him on many different laxatives, on the advice of many doctors.  We could have started a pharmacy with what we had in our medicine cabinet.  Over time, they all failed.

Wim’s first Colonlytely washout (by naso-gastric tube) was at 18 months of age.   He was in a cot then of course, and they are quite high.  My mother & I were sitting in armchairs, & as we are both short we couldn’t actually see the cot mattress.  But we heard Wim sitting up & going splash, splash, having a lovely time.  What a good result that washout had!

At age 3 ½, once again he was very ill, vomiting & feverish.  He had to be transported by ambulance to Box Hill Hospital.  At my request, they did a plain abdominal x-ray.  The look on the doctor’s face when he came back was shocked.  He had never seen a child so full.  It took 5 days of naso-gastric Colonlytely washouts to clear him out.  He was started on 1 sachet of Movicol when he weighed just 20kilos – the half dose was not around back then.  Even so, it took a full sachet daily to keep him emptying properly.

Over the next few years, he had semi-regular naso-gastric Colonlytely washouts.  On one memorable occasion, the washout was not emptying.  He just got fuller & fuller, until I stopped the staff putting any more in.  Fortunately this happened just before he was due to have a minor procedure done under general anaesthetic, so he was emptied out in theatre.  He never had his hands bandaged to prevent him pulling the tube out.  The trouble came when nurses tried to remove the tube (or I.V. line).  They had given him this thing which helped him get better, & then they wanted it back!!  He still gets upset at having to give them back.

It was decided that his anal sphincter was very tight (was he consciously holding on?  In my opinion, NO!  Not if the sphincter was still tight when he was under anaesthetic!).  Wim had Botox injected into his anal sphincter, which made him faecally incontinent.  As he was still in nappies anyway due to urinary incontinence, it didn’t really matter.  Botox is not permanent, & it eventually wore off.  A second injection was not successful.

Wim had a transit study, which showed a megacolon.  The surgeon wanted a more precise picture, so Wim had a barium enema.  Afterwards he was placed on a toilet to get rid of the barium.  I said, he can’t get rid of it, that’s why he’s here!  It took 3 weeks for the last of the barium to pass.

The barium enema showed that Wim’s gut had stretched due to his constipation.  He had a redundant loop.  The surgeon decided that removing this loop would fix the problem.  Ten centimetres of gut was removed.  By this stage Wim was 9.

The partial colectomy did not solve the constipation, it merely removed his holding dam.  He became sicker over the next few months, with frequent admissions for naso-gastric washouts.  Colostomy was discussed, but the surgeon wasn’t convinced that Wim would tolerate wearing a bag, due to his intellectual disability.  I said I would make sure he tolerated the bag, as I felt it was his last option.  By the time the surgeon was convinced, he was due to go on 4 weeks’ leave.  Another surgeon did the procedure (a Hartmann’s stoma, retaining his rectum and anus) after 5 days spent in Care by Parent administering daily Microlax enemas (which didn’t work).  During this time I also managed to get Wim continent for urine.

Wim had been under the care of a dietician, because he had not grown or gained weight in 3 years.  After the stoma was made, he grew 10cms & gained 6 kgs in 6 months.  Without that stoma, I am sure Wim would not still be with us.

He had annual minor revisions for the next 2 years.

By the time he had had the stoma for 2 ½ years, I knew something was wrong.  The stoma was severely retracted, he seemed to be in pain (he has very poor communication skills).  Without seeing him, the surgeon said he must need to lose weight as abdominal fat was probably causing the problem.  This child who had trouble keeping weight on??
We saw a different surgeon in clinic who said immediately that as the stoma had been made for constipation, & he had had 2 years of good bowel function, the most likely cause was that the bowel had shrunk & was pulling on the stoma.  Some sense!  Sure enough, that was the problem.  His splenic flexure was mobilised during laparoscopy, the stoma was revised and all settled down.  Wim regularly had blood tests done when he had surgery, as getting bloods any other way has always been difficult.  This time he had a RAST test for peanut allergy, as his older brother is allergic to peanut.  The result was so high that Wim is now considered anaphylactic to peanut, & carries an Epipen.  How that happened I don’t know, as there was no peanut at home or at school.

Wim’s other problems caused the paediatrician to order a spinal MRI (under GA).  This showed that Wim has a cyst on his spinal cord.  The surgeon said that yes, some of his patients who have bowel problems have spinal cord cysts.

In 2013 no-one in the family had any hospital admissions – the first time in 10 years!

Gradually we had to increase the dose of Movicol to 4 sachets daily to keep Wim’s gut moving.  He had several washouts in early 2014 & no-one really knew what was going on.  His older sister was diagnosed as gluten intolerant at that time, so we decided to take Wim off gluten to see if that made any difference.  Several weeks later he was accidentally given gluten, and had very smelly diarrhoea.  So, no more gluten.

Over the next few months, his alertness and communication slowly improved, but his gut did not.  We had so many visits to Emergency with Wim clogged again.  I said I felt something was pulling the stoma in, as had happened before.

Eventually the surgeon agreed to a laparoscopy to see what was going on.  The Registrar said “I hope you’re wrong”.  Well, I was right.  The appendix was adhered to the wall of the descending colon (which is apparently not as rare as you would think!) and blood vessels were wrapped around the colon.  As soon as they were detached, the stoma popped out.  Surprise, surprise!

Over the next 24 hrs. he seemed to be recovering well.  Then he fell in a heap, obviously in severe pain, restless and febrile.  The night staff worked in him to get another IV line in & do blood tests to see if they could figure out what was wrong.  48 hours after the original surgery he was back in theatre, where they discovered that his bowel had been perforated.  The surgeon was unable to repair the colon, so he pulled it out through the stoma past the torn part, and refashioned the stoma.  Wim was a very sick young man indeed, with peritonitis and septicaemia.  We were in RCH for a month.

In March 2015 it was decided to do another transit study.  Blow me down, this showed Wim has rapid transit!  So why does he have constipation rather than diarrhoea??  What a mystery.  We stayed in Care by Parent for the duration of the study, in case he had a negative reaction to not having laxatives for 8 days.  After the last picture was taken in Nuclear Medicine, we went back to Care by Parent for breakfast.  Wim had apple juice for the first time in a week.  About 30 minutes later, he was vomiting & had massive output via his stoma – the first output in a week.  X-ray showed his gut was totally empty after this clearout from both ends.  So he hasn’t had fructose since then, & we are waiting on a fructose & lactose breath test to see where we go from here.

Life is certainly interesting!

The above article was provided to Y.O.U. Inc for publication (May 2015)

Note: the co-morbidities are available, contact Lilian.

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