Pyloric Stenosis and long term effects
Posted , 76 users are following.
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
nishigarg Guest
Posted
There are no long-term effects. Recurrence of HPS is extremely rare with only a one percent chance. The rare baby with recurrent pyloric stenosis is still expected to have a normal gastro-intestinal tract long term, but may need additional surgery or nutritional therapy to recover
FredV nishigarg
Posted
Reading your post, nishigarg, I must beg to differ on a few details.
It is well-established that recurrence of IHPS is rare, about 1% , and also that the GI tract returns to normal after pyloromyotomy or related surgery.
However, the matter of long term effects is not as simple. The very few studies that have reported in medical journals are small and while recognising a short list of typical symptoms are often dismissive of them. However, the high gastric acidity that has been shown in dogs to cause IHPS has also been shown to accompany the condition in human infants, and being constitutional this is not eliminated by the surgery. So while the long term effects of high gastric acidity are not caused by the condition or the surgery, they do often continue through the rest of patients' lives. The effects mentioned include reflux, irritable bowel syndrome, gastritis, etc, and in later life occasionally gastric ulcers - all typical of high gastric acidity. This has also been attested to by countless sufferers on various social media outlets.
Sadly, IHPS is relatively easy to diagnose and a dream to remedy, with very few to no major long-term consequences, and as such seems to get little detailed attention in med school or practices. It seems that as a result of this, and according to countless reports I have on file, GI grief after IHPS that is not diagnosed as deadly is usually difficult to diagnose and treat, and seems to be routinely dismissed by GPs.
Most of those affected are indeed healthy and self-managing their GI troubles, sometimes with support from their pharmacist, GP or nutritionist.
callum56947 Guest
Edited
Hi,
i had this op done when i was around the same age. everything was fine im a skinny lad i always liked my food and i wouldnt really put any weight on but since recently around 4/5 year ago when i turned 17 i started being sick none stop for a full week i dont eat in this time because the belly cramps i get are so bad, i have used a hot water bottle to realise the nausea feeling when i am ill and ended up burning into my back because i just cannot feel the heat and this it normally lasts the full week and i will be so thirsty aswell and lethargic. none of my stools when going to the toilet are fully formed and the op scare feels like an elastic band is tied round my belly. this has happened around 14/16 times through the 4/5 year. im currently been sent to the hospital because the doctors have done every test on me possible but when i address that it could be the op they just push it to one side. i know that its because of this operation because its the only thing that seems to be a problem im a health 22 year old boy apart from this every other month which i dont know what else could be causing it. it has effected my day-day life i wake up on a morning and my belly feels that tight i feel sick. also it just comes out of no where one day you might be fine the next carnt do a thing. also i feel like i carnt breath normal like my bellys swollen and wont let me fill my full lung capacity.
Bamanda79 callum56947
Posted
my son who had this surgery also has breathing issues. He is only 6.
cody12380 Guest
Posted
Hi I'm 25 now and i had ps at 4 weeks had the op and everything was fine. However now that I'm older I easily and often get nauseous, I also have never been able to gain weight hardly 100lbs. I also commonly have stomach pain and discomfort but have not been to the doctor to get diagnosed with IBS i also get full very quickly i still eat off the kids menu...
cody12380 Guest
Posted
Hi I'm 25 now and i had ps at 4 weeks had the op and everything was fine. However now that I'm older I easily and often get nauseous, I also have never been able to gain weight hardly 100lbs. I also commonly have stomach pain and discomfort but have not been to the doctor to get diagnosed with IBS i also get full very quickly i still eat off the kids menu...
Mel_88 Guest
Posted
My son had Pyloric Stenosis surgery at weeks old. He is 18 months now. In the last month I have noticed he gets car sick (travel sickness) and vomits a lot. A simple 20 minute car ride and he vomits. Have any of you experienced this? Is this normal? Is it coming back? Do any of you have any advise for me? Thank you in advance!
FredV Guest
Posted
The main Facebook PS Group has over 2,000 members, most of them parents, but also many survivors, and our various griefs are the most discussed among this sub-group. Join up, share and learn if you are on Fb!
PS's long-term issues have had little medical attention because PS is the ped surgeon's favourite op - easily and quickly done, a game changer for baby, and very relieved and thankful parents! Surgeons also like to assure worried parents that there are no long-term issues, but little do they know. A few studies have shown there are, and that the worst are a troublesome GI system and adhesions, but most doctors don't have time to read such reports, let alone remember them.
Dr Ian M Rogers has written many med journal articles and letters as well as some small books on high gastric acidity as the cause of PS. His long-developed theory explains all the symptoms and also why reflux, IBS, gastritis, and ulcers can return to afflict us who've had PS. Obviously, the op doesn't change our constitution. Like your son, I have always been lanky with a fast metabolism.
Some need medication to manage their IBS troubles. I find I can do it by working out what foods cause my gut to misbehave - they are somewhat different for everyone but are usually the acidic/spicy and roughage foods.
FredV Guest
Posted
I understand you asked this question 3 weeks ago although this is not clear to me - but if so I apologise for a tardy response to a recent question.
I belong to the large Fb Pyloric Stenosis Support Group. Most of the adult PSers posting there complain about GI issues - reflux, IBS, food intolerances, dumping, bloating, etc, and (but of course) post-op adhesions. Because all but the last of these are very common among the general population, that means little in itself.
However, Dr Ian M Rogers, a British surgeon and academic, has studied the cause of PS for many decades and written 3 small books and many med journal articles on his theory that high gastrin (a blood hormone) causes higher gastric acidity which is the cause of PS. It's a theory because giving high gastrin doses to dogs gave them PS, but this cannot be tried on babies. However, his theory explains all the characteristics of infant PS and of course the surgery doesn't change our constitution - which often continues to trouble us.
Sadly but understandably, most pediatricians and infant surgery specialists aren't across all the research done on PS and so give unsatisfactory answers to those of us who ask them questions in this area.
Leest23485 Guest
Posted
hi, I have no medical background but I spent 18 months of my first 36 alive in hospital because of ps I projectile vomited feeds and was baptised In hospital as it was that bad they were not sure if I would make it and I had a synthetic tube placed surgically in my chest area between my lungs but now at the age of 35 I have no issues with hunger or eating a decent amount of food but I do find when I eat I cough a lot. as far as I am aware there is little research into the long term effects of ps but like yourself was curious about whether my symptoms are related to ps or not
kerry48565 Guest
Posted
I am also interested in this as my son is 21 and had PS and operated on at 6 weeks. my son had a healthy appetite growing up however for the last 18 months he is suffering with his bowel movements and gets quite painful cramps. He has seen the doctor but they just don't seem to do much but advise him to take over the counter medication but its starting to get him down abit
vanessa96403 Guest
Posted
i have a question if anyone has an answer .. im 19 yrs old i have ps ive had it for 3 years now , ive had 2-3 dialtions & 1 major surgery they cut tissue around it , i was suppost to get another last major surgery to see if it can permently fix me but i am pregnant & i do not know how this works if i have ps what are the risks? my first pregancy at 18 was an eptomic preg. had to have surgery not sure about this one yet im to early to tell . has anyone ever been through this before ? i didn't even think this was possible
vanessa96403 Guest
Posted
yes with ps surgery you will get full easy that was the risk of the major surgery they need to do on me its my last chance to fix this permently
Bamanda79 Guest
Posted
My son also had a very serious and very early case of pyloric stenosis. Unfortunately he doesnt have the best appetite. When he was a baby and on soft foods it was fine and even into early toddler years but now at age 6 we literally cant get him to eat anything. It seems like he is moving backwards. The older he gets the more he restricts his food options. I am so very worried about him amd his doctors dont seem to take me seriously. I dont know what to do. I cant help but think it has something to do with his Pyloric stenosis. All the studys seem to focus on is whether the parts work but nothing on the eating habits in children with severe cases that took way too long to be diagnosed. idk what to do.