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Pyloric Stenosis and long term effects

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Hi - my son had this condition and was operated on at 4 weeks. We were told at the time it is usually noticed at 3 months plus and he was very young and the muscle was very thick. He is now nearly 21 but has always been thin but with a good appetite but always had a 'full' feeling. GP now thinks he may suffer from IBS. I have always wondered if the PS has had an effect and wondered if there were any studies undertaken to question long term effects or eating habits of boys with this condition. Any info would be appreciated.

4 likes, 146 replies

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  • moT
    moT Guest

    Posted

    I had PS as a baby in 1983, scar of about 4-5 inches across my abdomen. 

    Always had trouble gaining weight, growing up I had trouble eating being very picky with food and always having this sick feeling after eating (but was never sick). As I got into my teens I found the symptoms subsided (or at least I don't have many memories of issues) but was still never able to gain weight and to this day I have a skinny frame. 

    The past past 4-5 years I have had a pain on the right side of my abdomen, which is about 2 inch below my scar. Went to the doctors and had a ultrasound but they didn't find anything. 

    The pain back then was very very uncomfortable, stopping me in my tracks sometimes, but again it slowly subsided and became unnoticable (or maybe its there but I have come to ignore it).

    Accompanying this is has been poor bowel movements, piles and all that fun.

    Now this month I the pain has come back in a serious way, and yesterday I was sitting watching TV and got this immense pain in around the same location. This pain felt like my bowel being pinched, it latest around 5 seconds but now I have had a really bad pain. 

    Its interesting reading this thread as I never made a connection between my PS and the pain, thinking that having the surgery as a baby it would now be fully healed. I was also never told of any possible complications, such as IBS (as some have mentioned on here) or other issues. 

    Sorry for the long post, wanted to share my experience. 

    I am a bit apprehensive about going to the doctors as I think they will not consider the PS surgery. 

    • FredV
      FredV moT

      Posted

      You are putting up with a lot of misery, but thanks for reading this thread and sharing some of your story. Yes, you could have IBS, it sounds more like adhesions (look this up on the web) that cause this pain and they don't show up easily on U/S), or it could be something else. Adhesions get my first vote: they affect only a minority after abdominal surgery, may cause no trouble or do so within years or much later, and they are hard to remedy - usually management is the best option (but not easy). You can rest assured a surgeon will only operate in extreme need.

      Many (but far from all) PSers are of slim build - this may have to do with the nature of PS: high acid, fast metabolism.

      And as for PS having no long-term effects: sadly, that's all far too many doctors want to know: "push 'em through!"

      Facebook has a great Forum on PS too - if you're a member, take a look at what others have reported there.

    • moT
      moT FredV

      Posted

      Thanks FredV, I am apprehensive about going to the doctors and think I may go private, but thats costly.
  • jessica34211
    jessica34211 Guest

    Posted

    My daughter was 3 weeks old and had pyloric stenosis surgery. Now she is 13 All the sudden she started puking after she eats and she is in lots of pain. For the last 3 months we have been in and out of doctors, emergency rooms, and walk-in clinics they have done all different kinds of tests and we still cannot figure out what is going on. I am curious if the Lining of the pyloric sphincter can thicken  causing her to need another surgery. If anybody has had the surgery  and is having any side effects like this please let me know.

     

  • FredV
    FredV Guest

    Posted

    Reading through the latest posts to this thread will give you some idea, Jessica, that you can be relieved to know that these problems are almost never caused by the pylorus regrowing. But quite often adhesions which have formed over your daughter's 13 years, or PS-related GI problems such as IBS, or the development of food intolerances can cause them. Adhesions are hard to find by the usual tests such as U/S, cause a lot of misery, and are hard to remedy. Hopefully it's a diet issue which she can live with. Best wishes.
  • brandon00865
    brandon00865 Guest

    Posted

    So I am a 27 year old male. I was treated for PS as an infant and until recently haven't had any issues, however, I recently had a bout of extreme intermittent abdominal pain and decided to go visit the Gastroenterologist because I have a family history of gall bladder issues. They told me that the pain is very likely a result of issues developed after the PS surgery. They said the area around the surgery site is very susceptible to ulcers. Scar tissue can also cause issues as well.

    I don't think his being thin has anything to do with the surgery though as I was on the chunkier side until I went into the military at 18.

    When in doubt, pay a visit to a gastroenterologist.

    • FredV
      FredV brandon00865

      Posted

      What you report is quite common, Brandon. Because the cause of PS is linked with high gastric acid levels and this doesn't change after a pyloromyotomy, the risk of ulcers and related problems (incl risk of stomach cancer) doesn't change either. And because all abdominal surgery results in damage which trigger adhesions, these can sometimes restrict other abdominal organs. Gall bladders are often removed from PSers only to be found quite healthy - the cause of pain is usually what your GE doctor said. Best wishes.

  • lauraGC
    lauraGC Guest

    Posted

    I had pyloric stenosis and was operated on at about 10 days old.  I had three children and the scar was a non-issue.  You should know, however, that because of the incresed suceptibility of boys to PS, any boys you have will have a 25% chance of having PS themselves (coincidentally, I am in genetics).  Good news is that treatment is now much easier!
  • kelley18606
    kelley18606 Guest

    Posted

    I had p/s surgery at about 4 weeks. Have 2 children 5 & 9. No problems with the pregnancy or birth. Never had symptoms at the scar site other than a bulge of fat that will always be there. Ugly but I guess I wouldn't be here without it so I don't kind. 

  • chris50782
    chris50782 Guest

    Posted

    I've been interested in this too, not as a medico but an ex p/s patient. Have not been able to check the medical libraries and journals, but not seen anything on this topic on the web's growing selection of books and research articles re IHPS

    • FredV
      FredV chris50782

      Posted

      Chris, I'd prefer not to have to blow my own trumpet, but... as another former Py baby, I've had a long interest in this condition and its connections also. There are so many areas of relative silence and/or ignorance! I've blogged about what I've learnt - mostly from the web but also from internet networking and Facebook's several PS groups. If you're interested, my blog (though not very active at present) goes under the title "Surviving Infant Surgery". I'm also classifying the 2500+ items I've downloaded over 20 years to give me a better oversight and more detail for a big edit of the blog. I'd be interested in what you have learnt! 

  • koko47908
    koko47908 Guest

    Posted

    My son is 9,5 months old. He had PS operation when he was 6 weeks old. He is very thin (under normal weight, height and head is smaller than children of his age). He was absolutely normal after birth and the dynamic of growth during the 1st month was upper optimistic. But after operation we have weight gain problem. He was diagnosed for endocrynology, immunology - everything is normal. We gave him a lot of food, but he is very small. He has normal stool once a day, so I do not suppose IBS. What it could be and how you overcome it?
    • FredV
      FredV koko47908

      Posted

      You'd be aware that children develop in a large variety of ways, so if he seems otherwise healthy I would not worry too much at this stage about slow build development. Keep in touch with your pediatrician or GP - this forum is not able to help in ways open to medical people - although there's not always "on the ball". This trait is not one I have come across as connected with PS or its surgery, except that there is a frequent link between PS and fast metabolism and slim / ectomorph build - and possible continuing gastric issues in later life (but who doesn't have some of these?) Best wishes.

  • heather61074
    heather61074 Guest

    Edited

    hello. Both my boys had pyloric stenosis. I was reading some literature this morning about pyloric stenosis being a side effect of vaccines. im going to continue reading into it. its supposed to be an uncommon thing. but both my kids ended up with it. my oldest is pretty healthy today. he is 21. my younger is 14 a d has suffered with stomach issues ever since. Throws up a lot with seemingly no good reason, has acid reflux like he is a grown man. and just overall a sensitive stomach. nothing like this runs in our family and I believe it is a direct cause of the pyloric stenosis way back then.

    • FredV
      FredV heather61074

      Posted

      Heather, I haven't visited Patient for some time, and just found your post.

      As a PS survivor myself I have followed the medical literature and personal stories for many years. Dr I M Rogers' published theory is that the main cause of PS is high gastrin (a blood hormone), which (in lay terms) causes high gastric acidity. His online reports and his books strongly persuade me that he's right, as all the characteristics of PS fit his theory. The only reason his lifework is still a theory is because it involved injecting dogs with gastrin causing many of them to develop PS (as some dogs and other animals can). Obviously, babies cannot be subject to such an experiment! But the same PS development changes in mother (before, during and after giving birth) and baby have been mapped in both dogs and humans.

      Bowel problems (though not PS) are on both sides of my family. My operation didn't change my genes and makeup. My Mum was easily stressed and had lifelong IBS. She was too traumatised to talk about my story, but what I know of it suggests she was very stressed before and when I arrived. I also have a sensitive nature and stomach, have trouble handling stress and also certain foods which give me IBS.

      We're all different so don't be surprised if both your Py-sons have a different ongoing history. I'm tall and lanky and can't put on weight, which although it's typical of PSers is not general - some of us become obese.

      I've never read of a link between PS and vaccines, and was born in 1945, well before vaccination became common practice. In my 75 years, the incidence of PS has varied little although vaccination rates have risen steadily.

      Best wishes!

    • callum56947
      callum56947 heather61074

      Edited

      hi,

      i have just read your comments i had this op when i was young and im constantly ill vomiting, cramps, carnt eat just constant hell this has happened for the last 4 year and i get acid reflux and just vomit out of no where i carnt go the the toilet when im like this i constantly feel like i need to go in the bath to feel better.

      i honestly dont Believe a word the GPs are saying after reading this it just shows there is others with the same problem and they are pushing it as IBS and other things when its clearly because of the op.

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