Pyloric Stenosis and long term effects

Indiam, thanks for sharing your experience, unbelievable as it is.

I looked up "Biliroth" in that treasure-house of information, Wikipedia, noted the slightly different spelling, and learnt that -

"Billroth I, more formally Billroth's operation I, is an operation in which the pylorus is removed and the proximal stomach is anastomosed (reconnected) directly to the duodenum.

"The operation is most closely associated with Theodor Billroth, but was first described by the Polish surgeon Ludwik Rydygier."

Wikipedia also tells us that Billroth's operation II is a variation on this and is also known as a gastrojejunostomy: the pylorus is also removed but the stomach is connected to the jejunum. It is often used to bypass a gastric ulcer.

When we look at how these rather radical ways of dealing with PS brings the bile duct closer to the stomach AND cuts out the valve (the pylorus) - it's small wonder you've had problems.

We hope the surgery you're considering brings relief.

hi

After posting yesterday , I found this really interesting site - it's called Past Pylorix Pages, It has a history of treatments, consequences and long term implications from the beginning of the century.

survivinginfantsurgery.wordpress.com/2011/11/17/past-pylorix-pages-pyloric-stenosis-treatment-in-the-1940s-1/

Fredadel, I'm not sure if l had a Billroth - according to this site, I may have had something called Ramstedt's precedure.

My son had surgery for pyloric stenosis when he was 1 month old. Since the incision was not healing, he had to have another surgery at 2 months to have some of the stitches removed (it was believed that they were causing the irritation). For as long as I can remember he's had periodic to frequent episodes of stomach complaints. It has been brought to the attention of various doctors, and was usually minimized. He did drink the white stuff and have x rays last year, but that came back negative. He is now 9 and at least once a week, if not more complains of EXCRUCIATING pain in his stomach, and back. This generally occurs about an hour, give or take, after a meal. Vomiting and diarrhea may also ensue. I will be taking him back to the Dr. and push for a referral to a specialist. I am thankful for the stories shared via the web, which indicate that YES there can be complications years after PS surgery.

My son was diagnosed with PS when he was just a Lil over a week old he was a premie at that.... He has always been thin.. But eats throughout the day... He's been diagnosed with constipation frequently and doesn't seem to go away... Now he is nauseated... And yes he goes regularly to the bathroom.. He's in so much pain... Nothing seems to work... The laxitives, the nexium... The Dr's keep saying that the surgery has nothing to do with his symptoms... I think it had everything to do with that surgery...

Hate seeing my son in so much pain... And I can't do anything about it.. I've asked if there was a specific diet that he needed to be on and was told no... My son is 11 yrs old now... He is now seeing a Specialist and she can't find anything wrong. He just had an endoscopy done a few weeks and still nothing..

Feeling helpless and frustrated.... Sorry... Does the pain ever go away???

Ronib and SCM, what you each describe could very well be caused by adhesions from the surgery. Abdominal operations almost always result in adhesions, strands of scar tissue that grows from damaged surfaces and often form a web. See the web for details and pictures. They don't become a problem for most of us, but if they do, they're a nightmare. They can choke off abdominal organs causing pain and other problems. They don't show up on tests and not easily on scans. Doctors don't want to know about them because they are untreatable. Some have found expert massage can reduce pain or release them, but others have found this treatment costly and worthless. Surgery can cut them out but they'll probably come back in time and worse. On my Blog (Surviving infant surgery) I've included several posts about this, including personal stories.

So much for pyloric stenosis surgery never having long-term effects... I wish the medical treatment option was given more respect in Western countries.

Hi all - very interesting reading this and I have never really given it much thought.

I too was diagnosed with PS when i was 4 weeks back in 1981. Operated on and all vomiting stopped instantly and went on to live a happy childhood. I too really struggled to gain weight until I was about 26 and at 1'80 i probably weighed around the 60kg mark.

With excessive weigh training i have managed to put on weight to around 86kg now with very hard work but i still have the slender appearance and look thin compared to others my weight.

Something else that has been developing is an increasing tolerance of spicy food - as much as i love a currry, sometimes the passing is excruciating and where ever i am i will have to beeline for a toilet almost immediately - very difficult when you are at London Victoria waiting for the circle line to pass. My partner thinks it too is IBD and with taking peppermint oils to settle my stomach and beyond I am inclined to agree.

Other than that i dont think i have had too many linked problems - maybe a lower tolerance to alcohol compared to my mates but I dont think it is linked to PS.

Funny - i googled - problems with PS in later life and stumbled upon this site - very enlightening.

Hi, not sure if this thread is still live but here goes...

I was born with PS and was operated on within a month or so. I'm now nearly 40 and have had constant irritation on a daily basis. The scar is very messy and is tethered down to muscle tissue, when I do a sit up for example the top or it pulls in. I also get some pain and twitching. I can't touch the scar tissue directly although I can wash etc. I think some if this could be psychological, as its always been like this. It sometimes also makes it difficult to sleep because of the itching.

Does anyone else have these sort of issues?

I have now seen a consultant to see if removing the scar will solve these problems, which was extremely difficult as even the thought of anyone else touching it makes me squirm ... has anyone had this type of surgery ?

Any advice appreciated

Jon

Jon, what you write here is a fairly common story. While most seem to (or say they) have no after effects fromsurgery for PS, the web is loaded with stories like yours. I last posted about this on my blogsite yesterday - Surviving Infant Surgery - Oct 3rd. Wow!

The super sensitivity and fear of visiting the doctor are also something I and others have struggled with, and these are probably related to ptsd, a subject I also wrote about recently - in the 2 previous posts.

I can't believe I have found this forum. My son had an op for pyloric stenosis when he was 4 weeks old. It was performed through his belly button, so he has no scar. He is now 9 years old. Last August he had a fever with vomiting and diarrhoea, the usual bugs kids pick up. But he has not been the same since then.

He now suffers from chronic pain in his stomach, heart burn, extreme bouts of nausea. So we have had scans and ultrasounds done and now he is being tested for helicobacter pylori.

Then this evening it just dawned on me that perhaps his pyloric stenosis could be a cause and I find this I am amazed with all the problems people have had. I will be asking my doctor next week if this could be my sons problem With regard to my son's weight, unlike his brother and sister (who are both very thin) he gains weight very easily.

It is very worrying to have a child who is constantly nauseous and has chronic pain and there is nothing you can do to help.

Thank you all for the information, I now have another line to go down with the doctors

I had taken my son to a specialist and well she basically gave up on my son.. So know I'm looking for a new Dr. Hopefully I'll find one that will listen to my son's needs. She was so head strong that PS had NO AFFECTS!!! I asked her to tell me, "then why is my son having so many abdominal problems??? Pain, diarrhea, vomiting and the burning feeling in his abdomin area? She couldn't answer me.... My son is thin... no weight gain... he tries so hard to gain weight... he's 12 now

Hi, my son had Pyloric Stenosis at 3 weeks old & had surgery to correct it. He is now 11 years old and has

had a continuing problem with swallowing and gagging. His weight is up and down. He's afraid to eat solid

foods because it causes him to choke so he sticks to soft foods such as cream potatoes, pudding, jello, etc. his doctor diagnosed him with anxiety and wanted to put him on antidepressants which is out of the question.

He's too young & I don't think that is the problem. He's been dealing with this since he was a baby. Always gagging & sometimes vomiting. Can someone give me answers as to what I should do? Thanks