Post-operative Infant Pyloric Stenosis?

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.

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13 thoughts on “Post-operative Infant Pyloric Stenosis?

  1. wendy williams

    How I wish research into the cause of pyloric stenosis were a number one priority! What if babies didn’t need these surgeries at all because preventive medicine was practiced and the reason for the disease in the first place was discovered and perhaps prevented. I don’t like to think of any operation as easy and elegant and simple. Invasive surgery is invasive surgery and if it can be avoided, it should be. How lucky I am that since my ps surgery, I’ve had no symptoms. My heart goes out to those children and parents who suffer.

    Reply
  2. Phillip C.

    My child was diagnosed with pyloric stenosis when she was two months old. After she had the surgury she was a totally different baby. My wife and I were very relieved and I thought that everything would be fine. Years have gone by and she is a healthy strong little girl. My daughter is five years old now and I am worried. She has a problem gaining weight. She weighs about 38 pounds soak and wet and is just a tiny little girl. The women in my family are all petite, and my doctor says she is fine. She has irregular eating habits, but we make sure she eats. She just can’t seem to put on weight, does anyone have any feedback that might relieve my stress that something may need to be done.

    Reply
    1. Fred Vanderbom Post author

      Phillip, I’ve read a lot of reports and have come across many personal stories of feeding and gastric problems after PS, but I also come from a family with several members who have had these problems (without having had PS) but outgrew them. Children (esp. the petite and finer build ones) can be a real test that way: two of my sisters and one of my daughters certainly were. We spoon-fed our daughter for a while, taking up to an hour per meal, as following others’ advice left her looking sickly. She later went into a growth stage, but stayed a slow eater till teenage. Her total life story has been quite normal and she now has 4 children, incl. another slow eater.
      My advice is: allow your doctor to reassure you unless your girl starts showing signs of malnutrition (lack of condition and energy, sick too often): then it is time to get a second opinion, probably from a nutrition or child health practitioner. If you need to give more time and support to her, or to learn about motivating her to eat, or improve her diet (kids can be too picky!), do that!
      Considerable percentages of PS sufferers get IBS and other gastric problems, but what you have mentioned does not suggest that should be your or your daughter’s worry at this stage.
      Best wishes: I’d like you to let us know here how you get on.

      Reply
  3. Phillip

    Fred,
    Thank you for your feedback, it was reassuring. Our pediatrician is one of the best in our state, so I probably should be reassured from her advice, I just see other children growing and she still looks almost the same as she did two years ago. So thanks again, and I appreciate your research: it was very helpful. I will be sure to post anything regarding her condition.

    Reply
  4. Fred Vanderbom Post author

    Phillip, thank you for this added comment. I’m glad you could write these things about your pediatrician. It’s often difficult to know what we should and should not think and do when we have concerns about one of our own. The best way would seem to be to continue to build a good relationship with her, stay as independently informed as you can, and make sure your questions are satisfactorily answered. Best wishes!

    Reply
  5. ped doc

    Fred,
    one of the key factors that your correspondent Phillip’s pediatrician will have been reassured by is your daughter’s growth. You can track this yourself for further reassurance by plotting her height and weight for her age on this chart: http://pediatrics.about.com/cs/growthcharts2/l/blgirlstwo.htm

    It’s best to get figures every three months or so, and let a good year’s worth of data accumulate so that you can see a trend. She should be following (more or less) one of the pink lines in both the height and weight section (not necessarily the same line in both!). If she starts slipping down across the lines, you need to see your pediatrician again.

    Reply
  6. Fred Vanderbom Post author

    Thank you Ped Doc, for that valuable advice. It will strengthen the parents’ confidence to look for their daughter’s trend, which we trust will show that all is continuing to go in the right direction.

    Reply
  7. Tracy

    My baby was diagnosed with acid reflux but I think he has pyloric stenosis because he can’t drink a lot of liquids without throwing up. It may be 30 minutes to an hour before he throws it back up. The doctors here in Alabama USA just listen to the complaints but haven’t done an ultrasound on him to check. Since I just found out about this disease he’s now 15 months. Is it too late to correct it if it is this?
    He has projectile vomiting by the way.

    Reply
  8. Fred Vanderbom Post author

    Thanks for the question, Tracy. It’s certainly not too late to have something done – at least some tests and if the problem is serious enough, medical or sirgical treatment may be worthwhile. There are indeed other possible reasons than PS for your little one’s problems.
    You would have to insist on those tests being done: perhaps take somebody with you to another MD who is more sympathetic. One method that seems to work is to arrange for your infant to vomit when in your doctor’s care.
    I’ve had quite some discussion of your issue in answer to another post – http://survivinginfantsurgery.wordpress.com/2011/07/14/is-there-a-mild-form-of-infant-pyloric-stenosis/
    It would be helpful for you to read that discussion as well as the one here.
    Best wishes, and you may let your readers here know how you get on.

    Reply
  9. Krisen

    My daughter is 5 and has pyloric stenosis, she also had a nissen fundoplication done at 7 months old due to severe reflux. They recently dilated the muscle and put botox in it but we have not noticed a difference. Her doctor said she needs the surgery, pyloroymotomy. I am worried about her having the surgery, especially if it’s not guaranteed to help. She can’t throw up or burp due to the nissen so she gets very bloated and in lots of pain. She also can’t eat much. She is 5 and only weighs 38 lbs. Any thoughts? Has anyone’s kids had this surgery and what are your thoughts?

    Reply
    1. Fred Vanderbom Post author

      Kris, thanks for your question and also for posting this on the Facebook (closed) PS Support Group page, something I was going to suggest.
      Your daughter and you have had a rough few years, and your question made me realize how much and yet how little I know about just a very small part of what is a huge subject area: the abdominal and gastric problems we can have from infancy. So what I can comment may be irrelevant or ground you have already covered.
      Reflux or GERD is usually caused by high acidity and/or just the muscle ring at the top end of the stomach being too lax, while pyloric stenosis is an enlargement problem with the stomach’s exit ring-muscle. This makes me wonder how a pyloromyotomy would help your daughter. A Nissen fundoplication is done to tighten the entrance ring-muscle, but its effect can be far from problem-free. Possible complications include dysphagia (trouble swallowing) and achalasia (the ring being too tight or closed) which the symptoms you mention show your daughter seems to have: dilating and botox are two treatments for these but neither is always effective.
      Again, from the little I know I really wonder why a pyloromyotomy is recommended, unless your doctor means a “Heller myotomy” which Wikipedia tells us is a similar technique but used to relieve the blockage at the esophagus: as with the pylorus, the muscle is split lengthwise down to but not including the inner lining of the gastric passage.
      As you ask, it would be so very valuable if a parent or adult who has traveled your rocky road could comment. My best wishes are with you. If you have the time and energy, please let us know how you go.

      Reply
  10. Fred Vanderbom Post author

    In response to my Response here (as above) and also on one of the Facebook PS Groups, Kris wrote:
    The doctors said a pyloromyotomy to open the pyloric valve. They won’t touch her nissen, even though they think it’s a little too tight. She has a list of GI problems… nissen, hiatal hernia repair at same time as nissen, extensive tracheal thrush as a baby, celiac disease, gas bloat, gastroparesis, pyloric stenosis and possible autonomic dysfunction. The dr said the pyloromyotomy would help open that muscle to allow food out of her stomach. We meet with him Monday but I will bring up everything that everyone suggests and has experienced. Thank you for you response.

    Reply

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