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.

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  • 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.

    The research interest seems to be on other issues around IHPS, relating to issues like its diagnosis, treatment and its immediate outcomes.

    I share what you write about your son, though I'm glad not severely so smile , and have written some more comments in answer to an earlier listed experience at this site.

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  • Posted

    Hi. My son Had pyloric stenosis and was operated on at just short of 4 weeks old. We were also told that he was very young to have ps but by the time he was treated he was losing weight dramatically and his blood had become alkaline due to the loss of acid through vomiting. Unfortunately he had an incisional hernia caused by the op and was operated on again the following day. He is now 4 months old. The severe vomiting stopped immediately post op but he has barely had a contented day since. His bowels open infrequently and he appears to be in discomfort much of the time.I too have tried to research post op issues and can find nothing. He is my fourth child and his behaviour is totally different to my others and I just feel he has residual issues from his ps. Would love to hear from anyone with similar experiences
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  • Posted

    Not wanting to detract at all from this excellent site, have you considered adding your query to sites similar to Patient UK? FaceBook has a large PS Support group (270 members) and so does the US \"BabyCenter\".
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  • Posted

    Hi I am 27 F and had Pyloric Stenosis at 2 weeks. my scar is also about 4 inches acriss and on the right side right under my diaphragm. I have been told that the surgery was supposed to be a permanent fix but that also as I age and develop more scar tissue, I will eventually need another surgery to remove scar tissue and release the muscle and fat that has grown on top of and on the scar. I also tend to have spasms and a pulling sensation sometimes during/ after exercise, eating, or just randomly. Mine is not an intense pain at all though just kind of a weird feeling. Whenever I get the stomach flue or drink a little too muc I tend to have trouble ending the vomiting unless I take phenigran or another anti- nausea medication. I also have Irritable Bowel Syndrome so I wonder if there's any correlation there?

    So two questions-

    Have any ladies out there who had PS as an infant carried and delivered a baby? Was just wondering if that effected your scars in any way. My hubby and I are considering starting a family soon and that scares me a little, with the extra weight in the belly could it pull too much???

    Also, has anyone out there had there scar surgically \"released\"? If so, for what reasons and how bad was the process?

    Thanks All!

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    • Posted

      Hi. My 18 yr old had ps surgery at 2 weeks. She has always sufferd with stomach pain and nausea. She can be in discomfort and have nausea whether she has an empty or full stomach so we can't pinpoint any causes. I'm wondering if her problems are connected to the ps surgery so I'm attempting to connect with other ps people.
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    • Posted

      My daughter had PS and had SX @ 3 weeks old. She still vomits all the time. At least once every two weeks we have takin her for multiple test and they cant pin point what causes it I think it still has something to do with the PS alot of ppl I have talked to have stated their kids still have tummy issues. Im gonna bring this up to her Gastro Dr when we go

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    • Posted

      I had ps when I was a baby and I get pain! I thought it was due to my scar tissue attaching as I get bigger? I'm not sure. Would really appreciate it if you got back to me maybe telling me more about what sort of problems she has x

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    • Posted

      It seems megan03285 and I both suspect the pain could be from adhesions, which often take years to develop to when they start causing trouble. Some sufferers get their gall bladder removed because doctors get their diagnosis wrong. Adhesions can choke or otherwise affect the functioning of abdominal organs in the area under the scar, hence the kind of symptoms you mention. I've posted several blogs about this ("Surviving infant surgery") including the stories of PSers who also have these kinds of troubles. PatientUK, Facebook and Topix each also have several forums where you can read such comments and interact with the writers. Adhesions are a big hazard and a nuisance hard to treat. Best wishes!
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    • Posted

      It seems megan03285 and I both suspect the pain could be from adhesions, which often take years to develop to when they start causing trouble. Some sufferers get their gall bladder removed because doctors get their diagnosis wrong. Adhesions can choke or otherwise affect the functioning of abdominal organs in the area under the scar, hence the kind of symptoms you mention. I've posted several blogs about this ("Surviving infant surgery") including the stories of PSers who also have these kinds of troubles. PatientUK, Facebook and Topix each also have several forums where you can read such comments and interact with the writers. Adhesions are a big hazard and a nuisance hard to treat. Best wishes!
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    • Posted

      Hi,

      I had pyloric stenosis as a baby and my scar is in the same position and similar size to yours. I have a 5 year old daughter and another on the way and have had no real issues with either pregnancy relating to the scar. I get a little bit of a burning sensation sometimes in the muscle above the scar but I think it just because it can't quite stretch as well as the other side. I also delivered my first naturally with only gas and air and hopefully this next 1 with no pain relief at all (fingers crossed)!

      I hope this is helpful, however I have had no need for any further surgery in relation to scar tissue.

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    • Posted

      Yes It Helps Alot Thank You So Much For Your Response. Do you or did you as a child have stomach issues my daughter still throws up all the time at least 3x a week we have tried to see if something triggers it more or less than others but nothing is consistent.
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    • Posted

      Not as far as I'm aware. I have had travel sickness as long as I can remember and get nauseous if I leave it too long between meals but don't think it's PS related. Growing up I would eat anything and everything but didn't put on weight until I started on the depo injection in my 20s. I can lose and gain weight quite easily now.

      Sorry I couldn't help more.

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    • Posted

      Hi I am now 48 I had the old style operation in 1967. Despite lots of vitamin e cream you can still count the stitch marks in my very thick scar. have also had two babies. The first pregnancy at 31 I did not have any issues with the scar. I put on approx 15kgs. The second pregnancy at 33, I put on same weight but the baby was an unstable lie and I carried him very differently. I ended up with a stretch mark on the scar. 

      Post pregnancy in the last 10 years in have had cramping in the scar, particularly after exercise if I lean down say to tie up shoe laces.

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    • Posted

      Hi Im also 27 and had pyloric stenosis as an infant. I had my first child, (a baby girl) about a 11 months ago and my scar stayed the same. I was also worried about my scar when I first found out I was pregnant but I had no problems.

      Sorry I cant answer your 2nd question.

      Ps.

      My daughter inherited pyloric stenosis as well and had the surgery around 3 weeks. Luckily, my mom remembered the symptoms and we didnt wait like her primary doctor wanted us too and went straight to the hospital and had a specialist take a look at her. Just a little more info. ☺ They tried to convince me it was acid reflux beacause usually first born males are the ones that inherit it.

      😞

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    • Posted

      Fred I've seen you have fair knowledge over ps and I was wondering if you knew how to keep the weight. I was trying to put on weight through high calorie diets and lifting. With mft28 I put on 28 lbs in 30 days, for some reason unknown to me now I had to stop lifting for a few weeks. in those 2-3 weeks I lost 25 of those 28lbs. Blew my motivation away thats for sure. Do you know how to maintain the weight you gain? I can't keep my calorie intake high enough to deal with this issue. i had ps surgery at 2 months never have a vomiting issue now. I'm never sick anymore. The only two issues ive had post surgery are gaining weight then keeping it. Also something i picked up on reading these articles it seems only females are experiencing the vomiting and the males have constipation issues. 
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    • Posted

      Daniel, sorry that I'm really out of my depth on this one. Is there a diet expert at your gym or or a sports doctor who could advise you? Perhaps a reader here? I could also suggest posting your issue on a bodybuilding forum site or on Facebook's "Pyloric stenosis Support Group" page, where there is more traffic than anywhere else I know. Very disconcerting to lose so much ground so quickly. Hope you get some good and prompt input on this. Best wishes!
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    • Posted

      I had pyloric stenosis at 3 weeks old.  I'm 43 and had 2 healthy boys.  the dr told my parents that scar tissue would probably prevent this but I did.
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    • Posted

      Sorry to say it, Nollie09, but your doctor at the time told your parents a porky! One of the many that so many ill informed medical staff tell anxious parents... and the list is too long to include here.

      If you are on Facebook, have a look at the Groups of PS parents and survivors, and you'll lose count of the PS survivor mothers who have children! The scar often distorts and may well ache and hurt, but in nearly 20 years of reading and writing about the long-term effects of PS I have never come across anybody who couldn't have children because of their PS history. Best wishes!

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    • Posted

      Im 21 had ps as a baby . now have an ugly scar on the middle of my stomach just had a baby and i am only 5'0 110 pounds was huge during pregnancy it stretched but barley you should be good to go but beware because it is hereditary and mt son also had it at 2 weeks
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    • Posted

      So sorry I haven't got back to you until now. I didn't realize people were responding to my post. My name is Marjorie Macdonald and you can fb me a private message and I'll answer any questions I can seeing as my daughter is now 20 yrs old and we've been dealing with this for that long.

       

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    • Posted

      Thank you. We have a gastro appt coming up may 20/2016 and I'll ask about the scar maybe being part of the problem. It seems my daughter's symptoms are worsening.
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    • Posted

      I never thought about it being hereditary. Did your baby have to have PS surgery too?  Also, did you have nausea during pregnancy from your surgery?
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    • Posted

      Hi, I am 26 F and I had PS and was operated on at 5 weeks old I've a scar on the right side under my rib cage and my scar has fatty tissue attached to it and I seen a plastic surgeon as a teenagers to get advice on this and they said they would have to operate to remove the tissue if it bothered me that much. I never got the operation as it doesn't bother me, and I carried a perfectly healthy baby full term 3 years ago and the scar stayed the same didn't stretch or anything And thank god my daughter didn't have PS as I heard sometimes it can be hereditary. Hope this helped any of your questions.

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    • Posted

      Hey there hun I'm 30 I had pylorics stenosis when I was a baby and operated on at 3 weeks old my scar sounds similar to yours same place and about 4 Inches I've have 3 children the scar didn't pull at all and wasn't uncomfortable and it just grew with the bump :-) having the scar didn't make any difference at all to pregnancy or labour the only thing is that all 3 pregnancies I have threw up all day everyday in lol I blame my reflux caused from the lasting effects from ps all of my children didn't have ps but my son is such a sicky baby but gaining fine he is almost 1 so just reflux really hope this helps xxx

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    • Posted

      Hi I'm 27 f ...and also had this at 2 weeks old ..my scar has a lot of tissue there and you can see it clearly threw my clothes ...I've looked into having surgery to remove it, I have had 3 pregnancies all healthy babies and the pregnancy never interfered with my scar you have nothing to worry about 😊 Xx

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    • Posted

      Hi! 33yo female here. I had pyloric stenosis as a baby and have had 2 children. My scar is similar to yours but not as severe. Pregnancy caused a bit of discomfort for me but it wasn't too bad. But my oldest son also had pyloric stenosis so that is something to consider. Since we are women who had it, it increases our children's probability of having it also. I hope this helps!

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    • Posted

      Hi!  I am 52 year old female who had pyloric stenosis as an infant (1965), and surgery at 6 weeks of age.  My scar is about 3 ½ inches wide.  My younger brother, age 51 also had pyloric stenosis as an infant with surgery at 3 months old.  My older brother age 53, did not have pyloric stenosis, but his son (now age 18) had pyloric stenosis and also had the surgery as an infant.  It is believed my mother had pyloric stenosis as an infant back in the 1943, but they did not do the surgery then and gave her some kind of concoction of yeast and something else to drink until her symptoms subsided.

      Regarding having children, I had 2 children, both of which never got PS.  I had the first one by c-section and the second child by natural birth.  I had no complications with pregnancy by having PS, it did not affect my scar.  Although, my scar got wider during the pregnancy, but it went back to the original 3 ½ inches wide after I gave birth.

      As an adult, I have now been having problems with stomach acid popping up into my esophagus and throat (acid reflux?) especially at night when I lay to sleep.  I find myself sleeping half way sitting up and eating lots of Tums antiacids throughout the night.  This may be a long-term effect of having pyloric stenosis, but I don’t know as I have not seen any follow-up studies of what happened to all us PS infants as we became adults.

      Hope this helps! 

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    • Posted

      I have exactly the same I can't lay down to sleep as much as I feel sick and reflux too it was horrendous when I was pregnant but I'm 28 3 baby's all didn't have ps but sickness for me is awful

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    • Posted

      I am 28(F) and I had surgery for PS when I was 3 weeks old. I have successfully carried delivered 2 children. The only issue I had with my scar was stretching and as my stomach grew I would get pains in my area where my scar was(my doctor said this was because the area was thin because my staples popped after surgery as a baby) 
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    • Posted

      I had PS at 3 wks old in 1943 and yes I was operated on at GOSH. I was a second born girl which was unusual.

      My first born son also had PS at 3 wks old and he too was operated on.

      Other than an uglier scar than my son we are both fine. I am now almost 75 and not had any major problems other than sporadic IBS.

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    • Posted

      Differing PS operation experiences back in 1943 were reported here by katie90348 and Greenfly, which I found telling, esp as I had this operation also (1945). In fact PS has increasingly been fixed by surgery since the German Dr Ramstedt discovered a relatively simple technique in 1912, but esp. in public hospitals it was many years before babies survived the operation in the numbers they do today (>99%). In some UK public hospitals even in the 1940s close to half the PS infants died from surgical shock, infection, and other dangers, but (somehow!) in “private” hands very few babies died! I’ve read some horrible stories about this. How things have changed! Besides this, until recent decades many countries treated most PS babies with medication at first: only small and very weak babies went straight to the OR, and if after a week a baby did not respond to medication (20-25%) it also went for an operation. I found this bit of history to be the probable answer to the different experiences you Greenfly and Katie’s mother had. 

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