The websites with information about infant pyloric stenosis (IPS) all assure us that the surgery is simple, effective, and that there are no long-term side effects. This is normally true from a professional and medical point of view and it often seems to be the case for new parents and the babies concerned. However, a quick search through the many on-line forums on IPS makes it very clear it is by no means unusual for there to be all kinds of unhappiness and even despair about this “straight-forward” surgery.
In time I’d like to devote a post to each of these, but here is a quick overview…
1 It is not surprising that abdominal surgery upsets and leaves bruising and collateral damage to the organs and area worked on. This often causes continued vomiting for some days or longer after the surgery, but should then disappear. The vomiting should not be as explosive and powerful as the IPS was. If it is, or continues beyond a few days, it should be urgently referred to the pediatric specialist concerned. It may be caused by infection or an incomplete division of the pyloric muscle, which could mean repeat surgery.
2 Many parents report continuing mild vomiting, constipation and or reflux. This is often blamed or diagnosed as gastro-esophageal reflux disease (GERD) or irritable bowel syndrome (IBS) which are both quite common in infants and sometimes continues for several years or even a lifetime. Ongoing gastro problems may also signal other and more serious gastric conditions, so further specialist consultation is important. Specialists usually reject any link with IPS but the number of stories available suggest that parents’ questions about linkages may be worth researching.
One mother reported: My son has had bowel problems ever since his op, he’s now 2. The docs say that the operation put his bowels in distress and they haven’t developed properly. He says they will eventually catch up but it will be a slow process. He has diarrhoea all the time L – his has been ongoing since the op though.
3 Some IPS survivors report having ongoing problems that suggest an undiagnosed incomplete pyloromyotomy or a redeveloped pyloric stenosis. From the many reports I have on file, doctors seem inclined to dismiss also these complaints and questions, even though the vomiting can be as sudden and strong as their earlier IPS was. Here is a sample:
Hi, I am a mother of a child that was diagnosed with pyloric stenosis; she had the surgery when she was 2 weeks old. She is now 19 years old and is still suffering from it. When she was in high school she was very athletic and it seemed that during that time her illness seemed to rear its ugly head again and to this day she is still having a lot of trouble. My baby and I have not found answers on how to get rid of this ugly thing.
4 Some complain of strange symptoms which are clearly not ongoing or returning IPS, but still uncomfortable and annoying. This is another well-documented but generally ignored group. The symptoms include any or many of the following:
sudden violent vomiting associated with particular food intake, illness or other triggers (such as being tickled); muscle twitching or spasms in the stomach region, also associated with illness; adult onset reflux; extreme sensitivity to being touched at the scar region; sensitivity to spicy food; extreme fluctuations of hunger and bloating episodes; unusually fast or slow metabolism, weight gain or inability to gain weight; and frequent mild nausea. Many of these symptoms are quite likely caused by other factors such as diet, personal constitution, and other illnesses, but because of my own experience and what I read from others I do not find it surprising that many PS survivors are inclined to at least question the claim that “the surgery effectively cures pyloric stenosis, and that without side- or ongoing effects”.
5 The few research projects I have found on this generally reject any link between infant PS and later gastric nuisances. Two are Australian studies: a small Adelaide project which compared 6 PS survivors and six “controls” found (a) that there were differences in stomach behaviour but (b) that these were insignificant and confirmed that the body can override such variations. A Sydney study of 85 children after PS surgery in 1984-91 found few gastric problems, no significant pain, but two had significant vomiting and one colic.
Among the many possible abdominal faults and maladies affecting babies, PS is by far the most common and also one of the most treatable. I am an IPS survivor who feels deeply grateful for the saving of my life under very trying circumstances in 1945 by what has been called “this elegant and simple operation”.
However, I am dismayed that more than 65 years later, so many recent parents and now-adult patients continue to express frustration, suffering or dismay over many, many facets of the after-story of infant pyloric stenosis.
The medical world may well agree (and no doubt quite rightly so) that many more serious human conditions are more in need of scarce funds for medical research. However, I am sorry that from what I have found –
> what research is done seems to deal with rather technical or specialist details of IPS and its treatment;
> there seems to be little or no interest in the many ongoing conditions and complaints after treatment for IPS; and
> there are so many continuing complaints about the medical community in regard to its attitude to these ongoing needs.
There is much reason for gratitude – but, it seems clear, also to improve.