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.

6 thoughts on “When infant surgery causes ongoing trouble (2) – the gut

  1. Dean

    Good list of problems Fred… I have several of these… but I’d like to add a couple if I may: one funny, one not so much. The (somewhat) funny one… I seemed to have developed an inability to belch! Weird, I know. I feel nauseous after eating and would dearly love to belch… but alas I cannot.
    When I was young, my sister used to get in my face and talk or even “sing” while belching. Just big sister to little brother razzing but she had no idea how much this bothered me. In fact I was extremely envious of her ability to do this. Some kids want to dive off the high diving boards at their pool… I would have settled to be able to belch like my sister. Neither one of us were aware that I had had some major surgery (without anesthesia as I’ve recently learned… that may have destroyed my ability to belch… or I’d have been belching away like my sister… the frog woman). But seriously, that operation may have altered my stomach’s ability to let out the gas that is a natural byproduct of digestion. She thought she was brilliant. Yes, it could be psychosomatic but I doubt it… because alka seltser helps, but only sometimes with a belch… the other times I can feel the excess acid being overtaken by the alkalinity of the alka seltzer.
    Then there is the inability to throw up. It’s not that I can’t… like when I have food poisoning I can… but this one definitely could be considered psychosomatic… if it wasn’t for the waves of pain coming from my pylorus all the way up my neck. When I was young my friends used to drink and drink and they thought me a drinking wimp because I tried to keep my alcohol consumption to a minimum so I wouldn’t throw up. It always amazed me how some guys would barf and just go about with what they had been doing. Amazing, I would think… “why can’t I seem to do that?” I would feel miserable after it… and that’s where the psychosomatic might come in… maybe alarm bells would go off in my nonverbal memory saying ..”you’d better stop this and fast… ’cause if you don’t they will come and strap you on a gurney… and cut away”. What do you think?
    Lastly I want to commend you on the article with the babies with scars… wow that really hit home. I could barely read it, it was so sad. But necessary. I have recently learned that there is a huge lobby effort in Washington to allow just about anyone with a basic knowledge of anatomy to preform vasectomies. It’s very profitable for the physicians… and the insurance companies like it too (no more babies to pay for)… But the truth of the matter is that bad vasectomies are way higher than the .05 level at which a surgery should be considered unsafe.
    Do you know if there are lobbies to keep the PS operation a staple money making machine for surgeons? I can see it. And I can also see the being unwilling to test the new antacids like pepsid ot tagamet etc because it would kill this cash cow surgery. They used to think ulcers were from stress and treated with valium. As we all now know that it is a bacteria.
    More later… excuse the spelling errors the spell checker threw off!

    1. wendy williams

      Fred, don’t you think that Dean’s ideas about lobbying apply to surgeons pressuring the field of medicine to consider surgery first for PS babies and succeeding in knocking off altogether the medical option for treating ps? While there may be no formal paid lobbyists, don’t you think that there has been a movement afoot, in the U.S. at least, to discredit or discourage the medical treatment of PS?

      Btw, Dean, I’m so sorry you suffer from stomach issues.

      1. Fred Vanderbom Post author

        Thanks for the query: I wanted to say just what you have written here and fully agree with you.
        And after the personal story of which you and I have just become aware, who could doubt that some doctors are addicted (for whatever reason, conviction, training, personal experience or crass self-interest) to hasty and perhaps often unnecessary surgery for pyloric stenosis?
        Although I find that in recent years more frequent acknowledgement is given to the medical alternative for managing PS, it seems to be token rather than supportive recognition, at least in our parts of the world. And I keep finding websites and stories that anger me, where the advice is simply and bluntly that “surgery is the only answer for PS”.

  2. Fred Vanderbom Post author

    Thank you so much Deon, for adding some of your own painful experiences to my list. That adds value. And it’s always great to hear from you, as you are somebody who “knows” what I’m blogging about here.
    I have edited my list in response to what you write above here.
    It is clear to me too that your unhappy experience with back surgery (as you mention in your Comment on my previous post) triggered your “somatic (body) memory”. Our brain is a giant library, with our conscious memories like the books on the shelves – and there are other books or pages hidden from view. It’s usually when one book is added or taken out and read that we can get in touch with one or more of those hidden chapters. PTSD often works like that, and it’s why trauma so often doesn’t surface until some later life event brings it out.
    The post about parents being traumatised by their child’s surgery was deeply felt by me as well as by other readers, and yes, I decided that those images I chose to include certainly added greatly to the impact. I can only imagine how my appearance-conscious mother would have felt when she saw me after my operation, with black rubber tubes coming out of various places and a bloody wound with black stitches down my middle: her first baby, longed and waited for for so many of her 28 years. And if (as may well have been the case) she could only see me through glass for the first 2-3 weeks, for fear of cross infection, that would only have sharpened her pain.
    You ask “if there are lobbies to keep the PS operation a staple money making machine”. I very much doubt if this happens in an organised, deliberate way in the way many drug companies at times promote their products with doctors. But as I have written, I’m also very certain that training methods, conservatism and self-interest combine with the established protocols and interests of other specialists and hospitals to make it very, very hard to reduce the numbers of surgical treatments of PS in countries like yours and mine. The fact that other developed countries use medical treatment with so much success and acceptance speaks for itself, I’m afraid.

  3. wendy williams

    Excellent material, Fred. I want to add a condition as well, which is Candida or yeast infection in the gut. I’ve known several people who had been quite sick with this condition. After I read the list you presented and then read the FGID material, I felt 1) gratitude that I’ve had no stomach issues due to my early pyloric stenosis surgery and 2) anger over the fact that a ps surgery is often presented to parents of PS newborns as a 100% fix. Well, yes, if you mean the baby lives: the surgery is a life-saver, and at the time, this worry is probably foremost in parents’ minds. But of course, parents are concerned about, rightly so, long-term effects and deserve the truth, not some dumb-downed version of how life for their newborn will turn out. The point is not to worry our little ones unnecessarily with this information but for parents to be able to be on the lookout for symptoms or conditions that may appear later. Parents are often not given the respect they deserve.

  4. Fred Vanderbom Post author

    Thanks for these additional comments. I’m not sure that Candida qualifies for this list, as I have not come across any link between PS and its surgery and Candida; can you help me there? Perhaps i’m also influenced by my wife having ongoing problems with yeast while I (who had the PS with some ongoing gastric issues) have never had problems with it.
    And yes, we try to walk the narrow line between unsettling PSers and their parents without good cause and giving both groups the information they need to help them with any troubling issues they may have, whether recognized or “sleeping”.


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