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.
This 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.
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.
5 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.