Category Archives: Adhesions

How Japan handles infant Pyloric Stenosis

Most readers of this blog are more than interested in Pyloric Stenosis (“PS”), either because they or one or more of their children had infant PS as a baby.

PS is the most common form of bowel blockage to affect newborns in their first 4 or so months.  In most developed countries, all but the mildest cases are treated surgically. The surgical technique is a long-standing and firm favourite among surgeons: once mastered it is quick, simple, almost bloodless, and usually immediately effective. Parents who had been traumatised by their baby’s uncontrollable and violent vomiting and then by having to surrender their little one to be anesthetised and then cut open receive their little one back alive and with the promise: All done, you have a new baby, sick no more, home soon, and nothing to worry about in the future!  No wonder surgeons just love the Ramstedt procedure!

But if you look up “pyloric stenosis” on any of the larger social forum websites, you learn more.

  • The parent trauma resulting from PS and infant surgery can be deep and long-lasting,
  • this can affect the child also, and
  • the surgery is not always free of long-term problems, in both the immediate and long terms.

Such problems are probably far from the rule, and most Py babies seem not to look back. However, there are no substantial studies on this subject, and the ongoing effects of infant surgery on parents and sometimes the whole family, let alone the patient, can certainly be significant.

During my 20 years of researching the many issues related to PS, I have been surprised to learn that in some developed countries far from the Anglo-European world, surgery is the exception rather than the rule for PS babies.

The reports relating this are few but persistent.  For many decades now, academics and medical practitioners in countries including Japan, Taiwan, and Turkey have reported on regarding PS  surgery as a last resort.

ranitidine01Their policy is to treat most infant PS medically as the first option. The drugs involved are atropine sulphate and Ranitidine, drugs that reduce gastric acidity production. Very small or fragile babies, and those that do not respond to medical treatment within a stated time, are referred to a surgeon.

The outcomes are comparable by almost every standard: morbidity, mortality, and short-term problems. The hospital stay is longer, but the total cost is lower. Parents are happier and less traumatised.

Now a  2018 Japanese study has reported a small trial of adding a second drug, nitroglycerin or glyceryl trinitrate (GTN), in those cases that do not respond to atropine sulphate.  GTN is widely known as an explosive but is also often used to treat heart conditions.  Using both drugs meant success in treating all the PS infants in the study.

It is well worthwhile clicking on the link in the previous paragraph to read the full article, published by Open Source publisher Science Direct.

This is a story worth recording also! Most medical reports are published by large for-profit companies that first charge researchers for publishing their work and then the readers for access to the reports and discussions.  Open Access publishers believe that new research and discoveries should be published online without cost to the authors and should be freely available to anybody interested.

Posting this great news makes me soooo happy!

I am one of many millions who have gone for years hating our scars from infant surgery. PS survivors know that without this damage most of us might not be alive today!

But what if we knew that our parents had had a choice between a few days or weeks of supervised medical treatment – and disfiguring surgery?  And that they chose surgery without considering how we their child might be affected by that in years to come? We PS babies had no say in our treatment – but our parents were our advocates!  And parents who learn that infant surgery not only saves lives but can come with adhesions, collateral GI damage, and/or long-term psychological effects… who would not give medical treatment a try first?

This free medical article from Japan explains how treating infant PS medically is their first option – and it’s all that’s needed for up to 90% of PS babies to survive. This case reports details 2 cases when old-established medical treatment failed but was successful when combined with skin patches of another drug!

But… can our surgeons wean themselves off their favourite surgery?

Is there a link between infant PS and later abdominal trouble?

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?

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 the immediate and personal subjects of the widespread ignorance and misinformation about the possible long-term gastric and other problems that can come with PS and/or its surgery.

113This 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.

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, 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 – 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 rejection and ignorance.  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.

In 2014 a pediatric surgeon friend and I published a small book, in which he explained what many still regard as the elusive cause of PS and I outlined my personal experience of this condition.

Pain01Lay 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.

Of course anyone with any such symptoms would 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 get it sorted out.

Networking after pyloric stenosis (2): blockages and pain

The previous post looked at some of the benefits of the internet age enabling us to network with people worldwide about issues of common interest.  I gave links to some of the websites I have found very useful for people with infant pyloric stenosis (“PS”), whether they be parents or survivors now in their adult years.

This post starts a series in which we listen to what people from all over have shared about the hassles they have experienced before and more often after PS surgery.  True, we can be grateful that the problems mentioned seem to occur to only a minority, and there is probably a “silent majority” who find they can easily put their PS nightmare behind them and “move on”, never or hardly ever thinking about it again.

However, that does not make the problems about which so many take the trouble to write any less real and troublesome.  The medical world’s ignorance about PS is widespread and reprehensible, as the many online forums and this blog have often demonstrated and stated – but in 17 years of following this subject area I have never yet seen a single research report on the frequent and serious grievances about shoddy diagnosis of this rather common condition!

The fact that ongoing problems occur as often as they do after PS flies in the face of the bland assurance of too many of those doctors who know anything much about PS: the common mantra is that “PS is quickly and easily fixed, with only rare post-operative problems and no long-term hazards”.  Ahem, what was that again?

Adhesions can form without an obvious cause, but usually result from damage to tissue and organs caused by surgery, such as those shown in this diagram caused by an appendectomy.

Adhesions can form without an obvious cause, but usually result from damage to tissue and organs caused by surgery, such as those shown in this diagram caused by an appendectomy.

In this and the following posts I pass on some of the comments from six PS survivor networks on Facebook.  This selection of comments is about adhesions and related conditions following PS surgery.  This blog has devoted several posts to the post-operative adhesions which can cause bowel blockages and pain: readers can find these posts by using the Categories box near the top right of this page.

KD was born in 1949 and wrote:
I am a 64 year old survivor.  Have over the past 2 years had a lot of problems with partial small bowel obstructions that are apparently caused by adhesions very probably from my PS surgery all those years ago.  I am also lactose intolerant and have IBS, and often have pains at the top of my scar!  I have bowel adhesions caused by scar tissue my surgeons say from that P S op all those years ago… in between i am ok, plus years of having pain at the scar site,
Electric Heating pads, hot baths and lots of either swimming or exercise are really good to keep things moving.  Strong pain killers are a whole other issue, and you have problems from them too, so I try and avoid them but sometimes u have to.  Every time you have abdominal surgery you run the risks of more adhesions so be careful about that too.  I get small bowel obstructions with my scar tissue, not nice.
I had it done at 12 weeks.  Huge vertical with big dots horizontally…  It is amazing to see how far surgery has advanced.  Have been embarrassed by my scar all my life and never wore a bikini.  I have suffered so many digestive problems.
now I have partial bowel obstructions caused by adhesions which surgeons say probably came from my ps op all those years ago, as I haven’t had any other abdo surgery.  I still feel pain at the top of the scar from time to time.  Weird!!

TF, 1977
I had surgery for this in 1977.  I have a ton of scar tissue and adhesions everywhere because of it.  Also my small intestines are stuck to my abdominal wall because of all this.  Been painful for the last year, so I’m going to have to have surgery soon to fix all this.  Just have been going through all the tests to be sure that is the problem and ruling anything else out.

LH, 1980
I have an almost 5 inch scar that has is bulky and is such a mass that it has attached itself to my diaphragm.  I am going to a general surgeon in a couple of weeks to get it checked out and possibly reduced a bit.
I was just diagnosed anemic and put on iron pills after lots of testing and a colonoscopy.  It’s great to know that the iron might be a part of the ps stuff.
Mine bothers me when I exercise because I breathe heavily, so my diaphragm moves a lot then it stretches the scar tissue and tears.  Once I have been exercising for a while as long as I keep it up regularly it doesn’t shrink again and I’m good.  But if I stop it shrinks and hurts like hell when I start up exercising again.
How do I know it’s attached?  I was just told by a doctor years ago… I explained the pain and after an ultrasound they confirmed it.

JM, 1986
I get bad pains like a stitch but worse.

PM, 1969
I am having some tenderness at the surgery site and acid issues.  Wondering about scar tissue?  Just had an endoscopy to try and figure things out.  Anyone else have issues many years later?

AB, 1992
I have acid reflux and gastritis as well, they are side effects from the surgery.
I had PS as well and surgery when I was a month old.  I’ve always had pain with my scar too.  It gets hard at time and sinks in very nasty.  I’ve had ultrasound scans, even cat scans, mri scans and xrays.  My doctor told me that my scar didn’t heal properly internally and as a result I have scar fibers extending to my ribs and even to my liver.  All the doctors say that I have nothing to worry about because in time they will tear on their own.
I have a hard time bouncing back [after a stomach bug attack].  Leaves me weak for weeks… sometimes months.  My doctor says it’s because my stomach went through such a major change when I was a baby.

RR, 1987
I had pyloric stenosis surgery at 10 days old.  I went to the E.R yesterday because I was having bad pain in my rib / back like someone had punched me a few times.  I was given an ultrasound scan but nothing was found.  I was told it could be a muscle strain or scar tissue issue from my surgery… Never did I think of my surgery from that long ago: I had always overlooked it.

Next time:  poor diagnostic work

Pyloric stenosis and adhesions

One of the most frequent long-term causes of grief after surgery for infant pyloric stenosis (“PS”) is adhesions.  This subject has been 3rd on the list of the most frequent of the 50,000+ visits to this blog, which is some indication that adhesions are not an insignificant matter.  So much for the assurance to parents when they submit their baby for an operation to remedy PS:  “This surgery never (or hardly ever) has any long-term effects”.

There are many informative websites devoted to the pain and other distress caused by adhesions, such as the one on the Better Health Channel of the Victorian Government in Australia.  I have often posted on this subject, as the “Categories” and “Search” boxes on the upper right of this page will show.

What are adhesions?

AdhesionWhen the body tries to repair the damage inevitably caused by surgery, scar tissue develops not only in the incision but also around it or from the cut tissue.  After PS surgery this means: around and spreading from the incision and the pylorus.  Adhesions can also grow between the inside of the abdominal wall and abdominal organs near the surgery’s work area (the bowels, liver, spleen, etc.).  This tissue can be as fine as plastic wrap or hard and fibrous like a web of string, in which case it is also inelastic and firm (like the skin surface of the scar).

Adhesions develop in more than an estimated 90% of people who have an invasive abdominal event such as surgery, injury, infection, radiation therapy, or a condition like endometriosis.  However, only a percentage of those with adhesions will be affected by pain or discomfort.  Most of us with them can be thankful that our adhesions are “just there”.

But this is far from true for everybody with a PS past.

Why won’t my doctor do anything about my adhesions problem?

What you read above really explains why doctors are reluctant to advise those of us who suffer with adhesions to get them removed: every time the body is opened it is likely that more adhesions will form from ever greater damaged areas.  There are ways of reducing the likelihood of adhesions forming, but prevention is better than a rather chancey remedy!

What can I do about adhesions?

Father compassion01eParents of a baby with PS should do their best to be good advocates for their baby, considering his or her long-term welfare and need for information about issues that they won’t be aware of.

Parents should also try to avoid surgery as the sexy “quick fix” for PS that most surgeons love, unfortunately without much care for the possible longer-term consequences.  There are less hazardous and less traumatic alternatives to the knife available – which only some doctors seem willing (or able, due to the rigidity of the usual training regime) to discuss and consider.

Mild cases of PS (where there is no weight loss) can be “toughed out” with or without the help of medication like Ranitidine which I have discussed elsewhere.

PS infants older than 3-4 weeks can also be treated medically – as they are in several non-English speaking but developed countries.  In these countries it is recognized that most babies recover without surgery, and those 10-25% that do not respond well enough to the medical therapy are sent to surgery; the mortality rate after PS is no different in these countries than in the Anglo-world!

Adults with a PS surgery past will probably begin to come across the word “adhesions” soon after they start having problems including –
– ongoing or intermittent abdominal discomfort, cramping or pain,
– what seems like gall bladder disease,
– bowel obstruction or blockages,  and sometimes even
– dyspareunia (painful intercourse) and infertility.

Adhesions can sometimes range far and wide from the pyloric (upper abdominal) region, especially if the surgery was rough and/or if the location of our internals is not textbook (as happens).  In my years of researching this subject area I have come across quite a number of people who had a healthy gall-bladder removed and were only then told their problem was caused by adhesions from their PS operation.

constipationIf you have any of these or a similar problem, insist that your doctor or specialist consider checking you for adhesions before you sign for anything major!  More surgery will usually make the discomfort and pain worse – although usually only after some more years have rolled by.  A few of my correspondents and friends have had adhesion surgery several times over a lifetime: this may well be the best course for some.

Several therapies other than surgery to break up or help live with adhesions have been mentioned on this blog, such as here, and here – and there are more on the web.  Most of these helps have been praised by some and found a waste of time and money by others.  One of my Facebook Friends wrote to me:
I used to belong to another group where they discussed in depth [a] physio clinic in the US and a lot of people felt they had been made worse with it.  It involves a lot of hours of intense therapy and the manipulations left them [with] worse pain and no relief from their adhesions.

Hmmm… “Taste and see”, if you have the need.

Adhesions and pregnancy

Like many who had surgery as a baby, I’ve been left with a few issues as a result.  Abdominal surgery at any age often leaves a bit of collateral damage, and when the surgery happens in infancy, this damage can grow with us.  The harm may be physical, cosmetic, or even emotional.

When I was just 10 days old I had surgery, caused by a stomach blockage, pyloric stenosis.  Discovering that I am not unique in having some “issues” as a result of this, and being in a position to do something about it, I started blogging here just over three years ago.

Adhesions 01One of the most common problems after abdominal surgery is the growth of adhesions, web-like inelastic scar tissue that can develop wherever the surgery went.  Adhesions may connect the abdominal wall to abdominal organs, link one abdominal organ to another, and sometimes obstruct them from working as they should.

Many of us have adhesions without being aware of them.  Virtually everyone who has had abdominal surgery will have adhesions, although in the great majority of people these will also remain unnoticed.  But a minority of former patients will be troubled by adhesions, some to the extent of choosing to have further surgery to get relief, all-too-often only temporary.

Such adhesions will be a special worry for those women who wonder how their already annoying or uncomfortable adhesions will behave when they are carrying a baby.

Will the abdominal surgery I had stop me from having a baby?

Most unlikely if the surgery had something to do with the gastric or food passage.  The scar and/or the adhesions may cause extra grief during a pregnancy, but they won’t stop it or damage the baby.

Will the surgery I had affect my pregnancy?

There is a small chance that adhesions will add to the discomfort and pain that are an expected part of most pregnancies.

The good news:
Good news bad news11)  From the published material it seems that only a small minority find that their surgical scar and/or the adhesions under it become more of an issue during their pregnancy, and those who do have found (as is usual) that every pregnancy is different also in this way.
2)  Although there may be unpleasant but understandable itching, stretching and tearing pain at or under the surgical scar, and some have reported a little bleeding, nothing more serious has been reported.  A mature scar is stronger than the surrounding abdominal wall and won’t tear open.  The stretching and bleeding will heal.
The bad news:
1)  If any of this happens to you it is hardly pleasant and it’s an unwelcome extra challenge during the long months of waiting and wondering.
2)  Count yourself privileged if you have a doctor or obstetrician who pays attention to this aspect of your pregnancy.  Because there is no easy “fix” for adhesion pain most medical people won’t want to hear or say much about it.  Be prepared for a brush-off.  Be content with some pain relief.

What can I do to reduce the discomfort caused by my earlier surgery?

As mentioned, most doctors believe it’s best accepted.  Creams and massaging are worth a try.  There are more costly and specialised therapies advertised online which some have found very good but others not.

Considering mild pain relief as recommended by your doctor, exercising and keeping weight gain to a safe minimum are sensible options.

 *         *        *

Two and a half years ago I wrote a more detailed post about this subject with some fear and trepidation for reasons that will be quite understandable.  How many males untrained in medical science would take it upon themselves to write a post on the effect of abdominal adhesions on a pregnancy?

boy writing1Yet this 2011 post has become by far the most read one of the 160 I have written about some of the issues that can arise from infant surgery later in life.  WordPress, the host of my blog, has encouraged me to revisit the subjects of my most read posts, so with a new year, I offer the above points as a summary and a lead-in.  I have not repeated most of what I wrote in the 2011 post on adhesions and pregnancy.

The 2011 post was the 4th of a series dealing with the problems adhesions can sometimes cause after abdominal surgery.  If this is an “issue” for you (the reader), I suggest you follow the link (click on the highlighted words) above and read all 4 posts and other readers’ valuable first-hand Comments on their subjects.  The “Categories” and “Tags” boxes on the right of this page will help you locate other posts that may be of help.

Communication04Many have found this blogsite to be a good place for getting information about a list of possible issues around infant surgery – especially the treatment and possible effects of infant pyloric stenosis, the most common reason for life-saving infant surgery.

You won’t get personal professional advice about your particular medical problem here, of course.  But this blog wants to continue to give well-informed, responsible, and practical facts and experience-based advice about infant surgery and its possible effects.  I have brought this together from the writing and reports of thousands of not only medical professionals, but also from parents and the survivors of infant surgery who have posted their experiences and stories on the web.

When infant surgery causes ongoing trouble (2) – the gut

The previous post looked at how different people have found relief from the trauma or PTSD that may be an ongoing problem after early abdominal surgery they had.  We look here at another group whose infant surgery for conditions including pyloric stenosis (“PS”) gives them a lot of grief.

Several of the online forums (such as Facebook, MedHelp, Patient UK and Topix) have a “page” for those of us who had abdominal surgery in infancy.  Anyone who checks out these forum pages will be struck by the fact that gut or gastro-intestinal (“GI”) problems are all-too-common among us “survivors”, and that most doctors have very little time for these complaints.

constipationThis kind of GI disorder carries the acronym FGID, or Functional Gastro-Intestinal Disorder.  (“Functional” implies that this kind of disease is not organic (caused by a physical disorder or malfunction) but nevertheless real (affecting the body’s functioning).  Googling for either will yield a long list of useful material.

In a previous post I wrote about this at some length.  Here I want to revisit the subject more briefly, not repeating what I wrote in the earlier article but hopefully shedding some added light.

What kind of GI disorders do people report after infant surgery?

  • GERD – gastro-esophageal reflux disease and RSD – Reflex Sympathetic Dystrophy (including painful, distasteful and/or smelly burps)
  • Nausea after eating
  • Bloating (feeling full)
  • “Dumping Syndrome” – pyloric muscle sometimes stays open when it should not
  • Continued vomiting (intermittent or after certain foods or situations or in stress) or gag reflex
  • Phobia at vomiting
  • Inability to to burp or vomit, often causing discomfort
  • Muscle twitches, spasm or stabbing pain in the scar region and stabbing or tearing sensation during exercise (Chronic Regional Pain Syndrome) – may be intermittent and/or sometimes intense
  • Confused “on-off” switch – to quote one sufferer: “for both hungry and full, can go days without feeling hungry, and have puked from eating too much, yet still felt hungry afterward”
  • Food intolerances
  • Difficulty gaining or losing weight
  • Irregular bowel movements

The list is not short!  It will be clear that some of these symptoms are not hard to relate to the actual surgery or the condition that led to the surgery.

What kind of remedies (if any) are offered?

As this blog has often mentioned, many GPs and MDs shrug off these complaints and frustrate their patients by not engaging with them or their complaint.  They are not able (or willing) to take the time and trouble to help.

belly pain1From the web I have gleaned some “diagnoses” and suggestions about how to find help –

1                    There may be an interaction of physical and emotional responses here, perhaps to the infant surgery and perhaps to other related or more recent triggers or circumstances.  In other words, these symptoms may be psycho-somatic: real but not caused by a malfunction in the body alone.  A short presentation I found helpful is FGID Information – click on the link to look it up!

2                    Lactose intolerance, a GI disease such as Crohn’s, and/or an allergy to gluten are another area of possibility.  Diagnostic tests are necessary to establish this.

3                    Antispasmodic drug may be effective in reducing twitches and scar pain.

4                    Many items of the list of symptoms can also be caused by adhesions.  To learn more about this very common and sometimes very troublesome result of infant surgery Google for this word or click on it in the “Categories” or “Search” boxes on the right of this screen.

OLYMPUS DIGITAL CAMERA5                    When children complain of the above symptoms, parents must monitor their weight gain and physical growth, and if this is impaired (static or falling) for any length of time, medical advice and possibly treatment for ‘growth impairment’ (idiopathic, “from unknown causes”) must be sought.  Pyloric stenosis (“PS”) often causes dehydration and malnutrition in babies too young to weather their effects, and studies have noted lasting damage to the developing brain.  Similar life-affecting mental, physical, learning and social damage can be caused by the inadequate intake of nutrition while the child is growing up.

This post underlines what I have so often stated here: that infant surgery for conditions such as PS is certainly not without all-too-frequent long-term effects.  The complaints discussed here are not only distressing for most sufferers – but would frequently have been avoidable also.

Medical treatment alternatives should almost always be investigated, and in the case of infant PS used far, far, far more often than it is in “Western” countries.

In my next post I plan to explore some more the trauma (PTSD) that can can result from pre-1990s infant surgery.   While PTSD is not as commonly reported as FGID it is just as distressing and troubling, and is another powerful argument why surgery for infant PS should even today be avoided if possible.

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!!!

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.