Tag Archives: slow transit colon

Round Two: the Pellet study and other adventures

5 Replies
Courtesy of 123opendata.com

Courtesy of 123opendata.com

Once the NG-tube was finally in place, M and I then had 5 long days to survive the copious amounts of Klean-prep, senna and picolax that were pumped into his system to clear his troublesome bowel.  Although we appeared to be off to a slow start, these powerful laxatives finally did their job and by late Monday afternoon, the gastro registrar was confident that we were ready to start the pellet study and a x-ray confirmed his opinion.  I had already met with one of the gastro investigation nurses, so knew that the 3 pellets, containing different shaped plastic markers, were ready and waiting on the ward for M and all we needed to work out was how best to get him to swallow them.

Over the last year, we have made huge strides in getting M to swallow tablets whole and no longer need a spoonful of Grandma’s jam to help the medicine go down as he has conquered his struggles and now merrily swallows them with just a mouthful of water to help.  However, there were 2 problems we now had to overcome:  M’s new-found fear of swallowing capsules with the NG-tube in place and the fact that these pellets are of a size that even I would struggle to take easily, let alone a small child.  The nurse suggested we resorted to mixing the markers into a couple of spoonfuls of jam and that was our first attempt.  For reasons that will remain forever unclear, M found even this method difficult to manage and instead resorted to swallowing the pellets one tiny marker at a time.  It may have taken considerably longer than anyone expected, but the pellets were taken and so round 2 of our admission was well underway.

The week should have been an easy one, as it was supposed to require nothing more of us than completing the pellet study, but unfortunately it was at this point that I had to brace myself and find the strength to weather an unexpected and turbulent storm.  Despite both Mike and I having repeatedly made clear that we have almost no support from our local hospital and their paediatric gastro team, this information appeared to have got lost along the way and I found myself embroiled in a battle to keep M in hospital once the pellet study had started.  GOSH felt sure that we would receive all the care and advice we would need from our local and nothing I said would convince them otherwise. battle I spent more hours than I care to remember fighting M’s corner and insisting that the consultants didn’t discharge him before the study was complete and the NG feeding started.  The pressure was huge, both on me – as I talked, discussed and cried my way through numerous meetings with nurses, doctors, dietitians, psychologists, PALs workers and indeed anyone else who would listen – and on Mike – as he sought to juggle the challenges of working, looking after G at home and supporting M and me whilst we were several hours away and only contactable by phone.

It quickly became evident that GOSH simply could not conceive that we could be as lacking local support as I was asserting we were and I have no doubt that they were beginning to view me as something of an overwrought, overtired, over-emotional and somewhat neurotic mother, who was unbelievably arguing to keep her child in hospital, when most other parents were trying desperately to get their children discharged before Christmas.  By the end of the week, it had all come to a head and I was at my wits’ end, but was finally vindicated late Friday afternoon, when our local dietetics team refused in no uncertain terms to take on M on a shared care basis with the GOSH dietitians – an entirely new experience for GOSH, though sadly an all too familiar one for us.

lighttunnelDespite all the heartache and distress this unnecessary battling caused, there was some really positive light at the end of the transit study tunnel.  The final x-ray on Friday indicated that M’s bowel is working more or less as it should.  It may be a little slower than ideal, but the markers had moved through M’s system and the consultant was delighted with this result, which means that the bowel is currently doing its job.  We really couldn’t ask for anything more.  So, the conclusion drawn is that it is the complex and multiple food allergies that have been causing M’s diarrhoea and other symptoms because of his underlying condition, EGID and the final step is to identify these as accurately as possible.

The First Hurdle

10 Replies

Our GOSH admission had three key stages, the first of which was to dis-impact M’s bowel and prepare him for a repeat pellet study.  We knew that when the original transit study was done at our local hospital 18 months ago, he was chronically impacted and there was some debate over whether the results, that suggested his transit was relatively normal, were accurate or not. My honest opinion was that he was not struggling with a slow transit colon, but the gastro team at GOSH wanted to be certain and were more than happy to admit him for this test due to the issues we’ve experienced with our unsympathetic local hospital over the last 12 months. My instinct was that nearly 9 years of unrelenting diarrhoea meant that there had to be another root cause for his problems that was still waiting to be discovered and it would just take some persistent looking to find it.

Courtesy of ebsta.com

Courtesy of ebsta.com

Unfortunately, the first hurdle – after the resolution of the whole missing bed saga – proved to be far tougher than any of us had anticipated.  After his amazing courage in facing all the health and medical challenges of the past year, and despite knowing that he needed to have a NG-tube, M showed just how stubborn he can be and steadfastly refused to co-operate with the nurses who were trying to pass the tube.  Wednesday evening saw 5 different nurses, 4 attempts, a flurry of unsuccessful negotiations and 1 small boy, who pulled the last 2 attempts out himself because, according to him, the nurses weren’t listening when he asked them to stop and then told them to go.  Having kept the other occupants of the 4-bed bay awake until past midnight with his cries and screams, we all finally admitted defeat and decided to leave it to the next day’s nursing team to remedy the situation.

Thursday morning arrived far too quickly, with a disturbed night’s sleep for M and an uncomfortable one for me.  We talked about the tube and the need to have it in place as soon as possible so that we could start on the first round of treatment, the dreaded Klean prep – a highly effective laxative that would start the process of clearing his system.  M knew and accepted all the reasons for the tube, but at the heart of the matter was the fact I had a small, scared 8 year old, who had endured a great deal since his scopes last October and was evidently close to saturation point.

Courtesy of The Royal Ballet/ROH Johan Persson

Courtesy of The Royal Ballet/ROH Johan Persson

Even the lure of tickets to go to see “Alice in Wonderland” performed by the Royal Ballet at the Royal Opera House, Covent Garden that very afternoon looked unlikely to be sufficient draw, but my boy’s love for all things theatrical combined with my own enthusiasm for going to see anything at the Royal Opera House eventually overcame his worst fears and won the day.  He agreed to let one of the doctors pass the tube and with 4 of us holding his head, arms and legs, another distracting him whilst it happened and the doctor doing the deed itself, we finally got the tube in place.  With that hurdle tackled, M and I rushed to get ourselves ready and a bag packed for our trip to the theatre.  We went by taxi with another little girl from the ward and a nurse and arrived just in time to take our complimentary seats in a box before the ballet began.  The performance was an amazing visual feast and proved to be a more than adequate distraction from all the tears and trauma of the morning.  M loved the outlandish costumes of the Mad Hatter and we had a lot of fun trying to work out which of Alice’s family and friends were depicted by each of the fantastic characters we met throughout the rest of the ballet.

Courtesy of The Royal Ballet/ROH

Courtesy of The Royal Ballet/ROH

Naturally, as I’ve come to expect when dealing with anything to do with M, nothing was as straight-forward as we might have hoped as we headed into that all important first full day of admission.  The stress of the tube placement led to him being violently sick within 10 minutes and he spent the rest of the day retching and bringing up bile, meaning the Klean prep couldn’t be started until much later in the day.  He reacted to the Duoderm, a dressing usually used to protect the fragile skin of the face by forming a barrier between the cheek and the tube and tape, which meant there was no alternative but to tape the NG-tube directly to his face.  The final straw came in the middle of the night, when after I’d finally got my tired chap to sleep, the quantity of the Klean prep being pumped in at the speed it was upset his system and he woke to be sick for the second time in less than 24 hours.

By the time Friday morning came around, we were both feeling emotionally fragile and physically exhausted and M refused point-blank to move from his bed.  We sat quietly on ward, with M plugged into the television via his headphones and I immersed myself in the escapism of a good book.  It had been a bumpy start, but finally we were on our way.

 

The Pellet Study

5 Replies
Courtesy of sfia.org

Courtesy of sfia.org

Sometimes having a child with a chronic illness is like becoming part of a secret society.  You suddenly become well versed in a world of specialised language, medical tests and medicines that you never knew existed in your life pre-diagnosis.  Having spent a long time researching EGID both before and after M’s diagnosis, I thought I had come across most things, even if I had no idea what half of them were and whether they’d ever be relevant to M, but the turmoil of the last couple of months and the subsequent plan of action put into place with GOSH was to show me just how wrong I was.

As I agreed with the registrar over the phone about the next steps we needed to take following M’s abdominal x-ray, the words “pellet study” and “slow transit colon” were thrown in my direction.  The brief explanation given was probably not enough to satisfy my inner control freak, who needs to know everything and understand the whys and the wherefores, but I figured that I could boost my understanding by a quick further investigation with Dr Google.  Sadly, I hadn’t anticipated just how difficult I would find it to get the details and comprehension that I needed from that source.

Courtesy of warriorfitness.org

Courtesy of warriorfitness.org

This time round however, I knew where to turn.  Within minutes of getting off the phone to GOSH and my failed attempts to uncover more useful information on the internet, I hopped across from Google to Facebook and posted a question on the FABED forum.  I may have mentioned just once or twice before how wonderfully knowledgeable the wonderful FABED parents are and this time was to prove no exception.  A couple of hours after my original posting, several Mums had offered their support and advice and one even offered to phone me and talk it through.

Michelle, if you’re reading this, you were an absolute life-saver with that offer and that phone-call.  I really can’t thank you enough.

I now had a better understanding of what the pellet study was, what they were looking for and some key pointers to discuss with the doctors before we took the test any further.  Most importantly, I had some affirmation that my belief that waiting until October to perform the study, as was originally proposed, was just too long, especially for my desperately unhappy lad and I felt confident that I could go back to GOSH and argue my case.

As it happens, this turned out to be unnecessary as my follow-up call after the Movicol introduction, saw me talking to a new registrar, who agreed that we needed to be testing M now to understand what was going on with him and to make sure we were doing all that we could to help him back to the road of recovery.  However, I was able to ask my questions, understand not only what they were looking for, but what they would do with their findings and know where we were headed over the next few months.

The pellet study looks at how quickly food moves through the intestinal tract and whether there are any issues with a slow transit that could have led to M’s chronic constipation.  Over 3 days, M needed to take a series of “pellets”, which are capsules containing mildly radioactive and different shaped markers.  The pellets are taken at the same time on 3 consecutive days and then on the 4th day, he had another abdominal x-ray.  The images below show how the x-rays could turn out:

As you can see, image 1 shows a person with normal transit, who would have passed all or most of the markers out of their body by the time the x-ray is taken.  Number 2 shows someone with a slow-transit intestine, which means that the body is failing to move food through the intestinal tract as it should, which can lead to constipation.  The final image shows that whilst the transition through the intestines has worked as it should, a blockage at some point has prevented the markers being passed out as they should.

If M’s x-ray turns out to be like image number 1, then we are back to the drawing board to understand what’s going on in his insides, but a normal transition is great news.  Number 2 means the introduction of medicine number 8, a stimulant laxative which would effectively irritate the intestines into reacting as they should and push the food eaten along the intestinal tract.  Number 3 would be an indication that there is a blockage of some description at a point in the bowel and carries the likelihood for investigative surgery to find out what that blockage is.  None of them is an ideal answer, but at least we feel that we’re being proactive in trying to find out exactly what’s going on.

Answers

So, the million dollar question has to be – Which x-ray image will M have?  Answers on a postcard please…