Chronic or recurrent abdominal pain

Many of the questions discussed on web forum sites* by people who have had surgery for infant pyloric stenosis (“PS”) are about abdominal pain.  Any of us, whether we were “Py babies” or not, may have (or have had) a problem here: it affects babies, children, teenagers and adults alike.  Empathize with this typical cry for help:

kid stomach pain3My daughter had the surgery [for PS] at 4 weeks.  First female in my area.  She has just turned 11 years.  Easter break she started hurting bad.  She missed her own birthday party.  Now it’s 6 weeks later and our lives are on hold.  She is an A student but has missed 4 weeks now.  She hurts in her scar area.  We have had blood work, x-rays, cat scan, ultrasound.  And no one can tell us why she is hurting and losing weight, dehydration.  Please someone help me!!!

Questions:
On the basis of what this worried parent has asked, what would you advise?
Are these symptoms related to the young girl’s infant surgery?

In this post I want to overview this taxing area of personal health issues, so that those affected will be better able to –

  1. understand the possible causes of their problem,
  2. appreciate the complexity of the doctor’s task in helping them, and
  3. help their doctors to arrive at a good diagnosis and management as soon as possible.

Understandably, those with a history of PS or other abdominal surgery will regard that as a prime suspect, and justifiably so.  If more cases of PS were treated medically and by regarding surgery as a second option, there would be fewer RAP cases among “Py survivors”.  Several studies have shown that there is indeed a higher rate of gastro-intestinal problems after abdominal surgery including for PS.  This is also suggested by reading the web-based experiences of PS people.  Abdominal operations inevitably result in the formation of a surface and internal scarring (adhesions) which sometimes cause great grief.  My several posts about adhesions may be found via the Categories box on the upper right of this page.  And adhesions are only one of the possible long-term effects of infant surgery, as this and its sister blogsites bear out.

Sometimes the complaint or question about RAP will relate to the surgical scar or to pulling, tearing or stabbing pain under it.  But not often.  There is a very long list of organic (body organ) and functional abdominal disorders that can cause discomfort or pain, as many of the websites on chronic or recurrent abdominal pain will make clear.

Diagnosis01Chronic or recurrent abdominal pain has its own catchy acronym: “RAP”.

Doctors try to distinguish between organic gastrointestinal (“GI”), organic non-GI, and functional GI disorders.  This can be difficult, but specific criteria are used, as will be explained below.

RAP is significant because –

  • it is one of the most common symptoms in children and adults worldwide, estimated to trouble 13 – 15% of children.  These children with RAP account for 2% to 4% of visits to primary care doctors and 50% to pediatric gastroenterologists.  And again, RAP is certainly not limited to little people!
  • in children it is responsible for considerable distress, reduced school days and academic performance, disturbed peer interaction, family stress, and a high use of health resources.

RAP may be caused by functional disorders (those which cannot be explained by structural or biochemical disorders) and organic disorders.

Among the many organic GI conditions that can lead to RAP are inflammatory bowel diseases, esophagitis, chronic pancreatitis, and gallbladder disease.  One study found that only 8% of patients with RAP had, after extensive investigation, any organic disorder.

Diagnosis02Functional abdominal pain is not a specific condition but rather a description for a variety of symptoms.  By definition, children who have abdominal pain but lack blood, mucosal, radiographic, and structural evidence of disease are regarded as having a functional disorder.  Functional GI disorders have their own acronym (FGID) and are also divided into categories – four in fact.

The possible causes of each of these different kinds of RAP may be complex and only very partly understood.  They cannot even be outlined here, but the informative websites listed below are well worth reading by those interested.

The frequent uncertainty about diagnosis, RAP’s chronic nature, and growing parent/patient anxiety often follow the unrelenting and disruptive path of the RAP.  This can make management by GPs and pediatricians very difficult, time-consuming and expensive.

To answer my earlier questions…

On the basis of what this worried parent has asked, what would you advise?
My answer:  Read what the websites I have recommended** say about RAP and so help your doctor get the problem in clearer focus.

Are these symptoms related to the young girl’s infant surgery?
Probably not but possibly so.  If your doctor dismisses this possibility (as doctors are inclined to do) make sure you understand why.

* There are many forum discussion sites that share personal experiences in dealing with discomfort and pain after PS surgery, including BabyCenter (USA), BabyCentre (UK), Experience Project, Facebook, MedHelp, PatientUK, and Topix, and Yahoo! Answers.

** Websites that give more detailed information about RAP may be found here and here and here.

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2 thoughts on “Chronic or recurrent abdominal pain

  1. Wendy

    What great resources! I really feel for that little girl with RAP and her parents. I trust though that they are going to get some help through the resources you’ve shared. Talking with other parents and grownup PSers who’ve had RAP is key. And I love what you said about aiding your doctor’s diagnosis. Yes, let’s give them all the help they can get. Sometimes their own training has gotten in the way of their thinking. On the other hand, sometimes nothing gets through and it’s time to find another doctor. The only reason I’m alive today is that my brother’s pediatrician happened to look in on me when he made a house call to my 3 year old brother. The obstetrician who was ‘caring’ for me and advising my mother told her that I was losing weight because she wasn’t nursing me properly!!

    Reply
  2. Fred Vanderbom Post author

    Far from all doctors are good diagnosticians, and yet that skill is basic to so much of their work. I have not heard back from these people but like you I trust that the information I have included and the site-links I have provided help this parent to find some help for her/his daughter. Even since infant surgery without anesthesia effectively ended, the pain of PS so often does NOT end with surgery, as most doctors seem to claim.
    Thank you for your comments and your experience, Wendy.

    Reply

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