Pyloric stenosis and chronic abdominal pain

This past week another medical report appeared on my screen about surgery for infant pyloric stenosis (PS) possibly having long-term effects.

kid stomach pain3So many of those affected by PS, either themselves or in a child, have to put up with their doctors’ constant denials of this possibility or they hear false and self-serving assurances that PS and its surgical treatment have no after effects.  It is heartening therefore that at long last there seems to be a fairly steady trickle (and sorry, that’s all it is) of research reports on this subject, all of which affirm that, yes, there can indeed be ongoing consequences.  Most of these studies are small and narrowly focussed, but at least they speak with one voice.

How valuable would it be for parents and the medical community too if some medical researchers gathered and published the statistics on (say) the long-term effects of operating on PS babies compared with treating suitable cases medically and/or on a “watch and wait” basis!  I’m afraid there is a deafening silence on this: I have not seen even one such study in all my reading which covers all that I can access of a century of medical writing about PS.

Yet this must be an area in which surely all parents of PS babies would dearly love to have some answers before they sign for a surgical “fix” which they fear and loathe but which is almost always presented as the only available course.

But almost always it is not.  Only about 20% of PS babies are diagnosed before 3 weeks of age, and especially after this age it is usually safe and effective (in about 80% of cases) to try medical therapy and to regard surgery as a last resort.  But the medical world loves PS surgery: it strokes the surgeon’s ego, hospitals want to get patients off and away as soon as possible, and the medical industry is understandably petrified of not following “best practice” as defined by “what we’ve always been taught and done”.

The 2011-written article that was posted on-line this week (but only in Abstract) comes from two Chicago researchers (S Bonilla and M Saps) and bears a long but very clear title: Early Life Events: Infants with Pyloric Stenosis Have a Higher Risk of Developing Chronic Abdominal Pain in Childhood.  Do click on the Abstract: it is well worth reading.  This study is from the same people as the Mexican study I reviewed in a post almost 3 months ago.

Pain01Several things are worth highlighting –

  • This study is large enough to be significant.  Some statistical reports I have read are based on a very small number of subjects, but 100 people with a PS background and compared with 91 controls is a solid sample.  The results are also very clear and thus significant.
  • I was interested that the writers had already “hypothesized” that PS surgery would have long-term effects and the results of their work showed this to be so convincingly.  In the light of this I would be most interested to understand why so many pediatric specialists are still reported as spruiking the fable that PS babies can forget about trouble after their surgery.
  • Also telling is the claim that We have described a new model to study early life events in infants.  The writers mention that PS and its surgical treatment include risk factors which may well result in continuing abdominal and gastric problems.  The internet has much angst and many complaints about this, and this blog has quoted and discussed this subject several times.  The researchers state that they must underscore[s] the importance of early life events in the development of chronic abdominal pain in children.

I am very pleased that the link between PS, infant abdominal surgery and functional gastrointestinal disorders (FGIDs) has been established beyond reasonable doubt, both by academic work and personal experience.  This will be reassuring for many who suffer with various abdominal complaints, and will I trust make doctors more sympathetic, even if effective remedies and treatment are still elusive.

Sadly, there is a continuing silence in the medical community about the link between the infant surgery as it was often done 30 and more years ago and post-traumatic stress disorder (PTSD).  There is just as much reason to hypothesize about that linkage.  Wouldn’t it be honest and healing to look into that subject?

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3 thoughts on “Pyloric stenosis and chronic abdominal pain

  1. Wendy

    Again, thank you so much for keeping us abreast of the latest findings in research about PS. Now that I think about it, my pediatrician did mention such a possibility to my mother one day. Trouble is, I was within hearing distance. He told her that I could have stomach problems at age 50. (He gave no particulars and my mother did not ask.) I kept that number deep in my subconscious, and when I turned 50, I felt a huge weight drop off my shoulders as I’ve been blessed not to have any gastrointestinal problems over the course of my life. This scene depicting my mother, my pediatrician and me is the first page of the memoir manuscript that I wrote about my PS journey. I think I was in terror about it all those 49 years (I heard the doctor’s words when I was one.) When I realized I was safe, I finally felt free to write about it. If a doctor is going to give the real story about the prognosis after PS surgery to parents, I hope he/she keeps it for the parents’ ears alone until the child reaches such an age whereby the child can benefit from knowing the truth. Indeed, the conclusion reported in the abstract that you refer to is a huge breakthrough. Huge.

    Reply
  2. Fred Vanderbom Post author

    Your personal experience is so valuable in this context, Wendy. Thank you for adding it to this post. I’m sure that other readers will be able to identify with you and I hope they add their own story here.
    My daily scan of new online material about pyloric stenosis today (3 November 2013) has gleaned a BabyCenter discussion on the fear some infants have of doctors and their rooms and examination tables, often when only months or a year old and often after earlier surgery or other medical procedures.
    Your warning about discussing sensitive matters in front of infants must be heeded by parents. We remember much earlier and more than usually realized. Never try to tell a parent that little ones have no memory!

    Reply

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