Most General Practitioners (GPs) will reject any link out of hand. Some GPs have even been known to ask their patient (or client) what “PS” (pyloric stenosis) is.
We can be sure that every medical textbook and training includes at least a page or part of a lecture on PS, which is the most common reason for non-elective surgery on infants in their first months and years. But who can blame a medical student for not remembering everything they are told and read over six or more packed years? Let alone what is currently known about a condition most GPs will encounter only rarely?
However, the almost universal denial of a link between PS and later abdominal trouble is more than a nuisance. It may be “textbook” but it misleads and misinforms the parents of a PS baby and most will continue with this false assurance until they discover the truth – usually only after much frustration. As for PS survivors, they are living with the widespread ignorance and misinformation about the possible long-term gastric and other problems that can come with PS and/or its surgery.
This kind of trouble does not seem to afflict the majority of PS survivors, and may only affect a small minority. But considering PS affects between 2 and 5 in every 1,000 babies, that is still a lot of people! I have on file hundreds of stories just from those who have told something of their story on Facebook’s several PS Group pages – and elsewhere! There are several other social forum sites carrying the stories of worried or unhappy PSers.
And consider this: about 80% of the posts about digestion issues come from women, who represent only 20-25% of infant PS cases!
The pattern is typically like this:
- The “survivors” endure some years of increasingly nagging (though not mortal) discomfort, pain and frustration with real but unidentified gastric and/or other abdominal symptoms (tightness, pain, bloating, irritable bowels, dietary misbehaviour like reflux, vomiting, etc).
- Their doctors seem loathe to acknowledge these symptoms, giving their patients medication or dietary advice.
- There is outright rejection of PS possibly having long-term consequences. However, the high acidity of PS, damage to the gastric passage and even the lungs (from ingested vomit), post-surgical adhesions, and trauma after old-style infant surgery and hospitalization are just some of the hazards which should be considered. All of these possible conditions have been documented and reported in medical literature.
- It seems that often the “survivor” discovers the link between their malady and their PS past only when they stumble onto an online forum where they find they are not alone.
- Sadly, because PS-related problems are low on the medical world’s radar for several reasons, there is virtually no interest in researching them. Hence the medical juggernaut rolls on in ignorance and rejection. However, there have been a few small studies and (from what I have found) just one very large study that have confirmed that infant PS is not always free of long-term consequences.
If the reader is interested to trawl through enough pages of stories on this blog and on the screens of the largest three of Facebook’s PS Groups, they will also find reports that several GI specialists have (usually after many, many consultations) admitted to a connection, agreed on tests, and arrived at better advice treatment.
Lay reading of medical journals and even a basic understanding of how our gut and PS work tell us there certainly can be a link. More specifically, the high acid that causes PS continues with the patient, raising the risk of related issues including reflux, irritable bowels, esophageal damage, and gastric ulcers and cancer. Reduced gastric emptying could well be caused by damage to the vagus nerve or adhesions from the operation constricting the working of the stomach and gall bladder, whilst the throat / voice problems are likely caused by erosion / scarring of the esophagus caused by reflux, high acid, or lack of care with the breathing tube during surgery.
Anyone with any such symptoms would of course need a proper diagnosis but it’s not hard for even lay people to understand the links. With countless numbers from my Facebook networks, I plead with the medical profession, parents, patients and the family and friends of PS survivors to recognise and help spread the awareness of this quite common condition and its possible ramifications.
And if what you the reader has learnt here “rings a bell” … I sincerely hope that you have been greatly encouraged to pursue your problem and succeed in getting it sorted out.
– Fred Vanderbom