Networking after pyloric stenosis (6): adult forms of PS

Pyloric stenosis (“PS”) is far more common in babies than in adults, and its cause is also easier to diagnose – despite many stories of doctors being far too slow to suspect let alone test for it.

In babies PS occurs in between 2 and 5 times in every 1,000 live births.  Adult PS is a well-recognized and documented condition, but (perhaps because there are two forms of it making it harder to diagnose) there don’t seem to be any significant (i.e., large study) statistics on its frequency.  I read in one report that there are only 200 reports of it in the English language, but this gives no helpful indication of anything much!

Two forms

  • Primary PS in adults is quite rare and most similar to PS in babies: it is marked by a thickened pyloric muscle narrowing or even blocking the stomach outlet, causing nausea, pain, vomiting and food retention with stomach enlargement. This condition is caused by hyperacidity which is caused by raised levels of gastrin, a blood hormone that triggers the release of gastric acid.  Why this should occur later in life is not well understood; it is suspected that higher levels of gastrin may have existed through life but for some reason start to cause problems only at a later age.
  • Secondary PS is also caused by higher acidity in the gastric passage, but in these cases the acidity helps give rise to stomach or duodenal ulcers and/or cancers. These or the scarring caused by healed ulcers then narrow the pylorus, causing similar symptoms.

This background will help explain why the diagnosis for adult PS is often a challenge to make and why the choice of treatment will also vary.

Both forms are linked with infant PS in that their symptoms are similar, they are caused by high acidity, there may be an obvious hereditary link, and they occur about four times more often in males.

My search of medical articles on this subject produced a 2010 report of primary adult PS in a 71 year old man that is well worth reading for the information it gives and on which I have drawn here.

This medical report is instructive, but the personal experience of sufferers of adult PS will also be valuable to readers here.  Once again in this series I also want to draw on the stories of some of these people as reported to the PS Groups on Facebook.

BNL  (born about 1990)
Did anyone get diagnosed with pyloric stenosis as an adult?  Mine is not completely closed apparently but that’s what the surgeon who did my upper GI said I have.  He prescribed Prilosec 40mg twice daily.  Does this really fix it?  Just really worried.
I would like to introduce myself and give you my story.  My name is B and my diagnosis of pyloric stenosis was just made yesterday.  It all started when I was about 15 years old.  I used to get intense abdominal pains on my right side after running in gym class.  Over the next 10 years I had gallbladder surgery in which they found nothing wrong with my gallbladder, numerous pain medications in which I’ve had bad reactions to, was put on antidepressants and being told the pain was all in my head just to have terrible reaction to that that impacted my life negatively.
It was not until I was given an upper GI yesterday to show that I had pyloric stenosis, however the doctor was able to fit the probe through and look at my duodenum however was told that I still had pyloric stenosis because it was so tight.  I have endured so many years of pain and nausea that it was depressing.  I have a 2 year old son and 1 year old boy girl twins in which my boy twin has a rare genetic disorder that causes seizures.  I have a busy stressful but amazing life that the pain makes impossible to keep up with.  I look forward to hearing your stories and also getting and giving support from everyone.  I very much appreciate being part of this group and don’t feel so alone anymore.  I have included a pic from my endoscopy to better explain what I mean sorry if it’s TMI but I have gotten a lot of questions lately about this.  Again thank you!  Any advice is appreciated!…
Please help!  I am desperate!  Is there anyone here or knows someone with pyloric stenosis?  I am being yanked back and forth being told that I do, then don’t have pyloric stenosis.  Since I posted last my symptoms are getting worse.  I am nauseous all the time, severe right upper abdominal pain that is just below my ribs and I can literally feel a ballooning feeling there, I am losing weight and am feeling very tired and fatigued all day.  Apparently my esophagus is inflamed, my stomach is hard, biopsies came back normal, nothing on CT scan except for some most likely benign cysts on my liver and some fluid in my cul-du-sac.  Sorry if this is tmi, but I am at my wits’ end.  Was sent home on Prilosec 40 mg twice daily, they refuse to give any pain meds but tramadol which I refused now because I can no longer handle the side effects.  I called my surgeon’s office and told them I need a straight answer and treatment because I can’t handle this.  They gave me some “katafate” for my chronic ulcers although I was told I didn’t have one on endoscope.  Please any advice is appreciated.  I have three kids at home, one with special needs, and I can’t function like this.  Thank you so much and sorry for such a long post.  Below is my endoscope pics again if anyone can give their input.  Thank you!…
My surgeon confirmed that I do have pyloric stenosis and wants me to see him sooner than planned since my symptoms are persisting despite being on Prilosec 40mg twice daily and carafate four times daily.  (2014)

MM  (born 1991)
I’m a 23 year old female currently undergoing treatment for adult pyloric stenosis.  I was wondering if anyone on here was the same or if the cases on here are for infant PS, as I’m finding it difficult to obtain information on the adult version as it seems extremely rare compared to that in babies.  Any information or help would be appreciated, thanks…
Yeah, I think I’m like the 1 in a million person who has it (but classic symptoms)…
I have so far had two balloon dilatations via upper endoscopy.  My surgeon doesn’t want to do keyhole surgery f it can be helped.  The problem is they don’t know what’s causing my PS,  I have extreme ulceration of the duodenum which isn’t improving with certain PPIs like omeprazole.  So he’s looking at other things like dissolvable stents etc., but yeah, they can do keyhole surgery as they do in babies.  Rather than the older method of the larger scar.  It’s a waiting game with me, haha! …
I’m just glad to get a doctor who listens to my symptoms.  He’s been so great.  The keyhole surgery performs the same surgery as with the large scars but with technology advancements they don’t need to slice anymore.  But it should be the same surgery performed…
TB wrote in response to this:  … I was diagnosed with adult p s about 10 years ago.  And there really isn’t a lot of information out there for adults with PS.  I’ve had a balloon dilation probably about 15 times.  My doctor doesn’t want to do the keyhole surgery either because it is very dangerous on adults.  I get them done every 3 to 6 months with the dilation and that seems to keep things under control…

Other adult PS experiences including these have been shared on other web forum sites –

SG (born about 1979)
hi there im a 32 year old female with pyloric stenosis. i know this is very uncommon in adults and finding it hard to find any information. i have no family history of this and had no signs of it as a child. i got diagnosed with the condition about 4 years ago. i had severe abdominal pain and could not keep solids or liquids down. this lead to kidney problems from been dehydrated. it took over a year to find out what was wrong and during the process the doctors also found crohns disease and endometreosis (no family history of these conditions either). my bowel, uterus, and pelvic wall are all fused together so symptoms of all my conditions are hard to define as they all affect each other. i have had 2 balloon dilations on my stomach to stretch the opening. i would like to know if any one has information on whether it is common with no family history or common with the other conditions. also if anyone knows any useful advice on this condition which may help me.  (posted on Healthboards 2011)

NN (age not given)
I decided to start a blog so I can update people, raise awareness, and just get out my story when I’m having a rough day.  I have had many people messaging me to ask what has been going on in the past month making me end up in the hospital and on so much medication so this is an easy way to answer everyone :).  Right now I’m just living in the present moment and taking each day at a time.  I don’t know what tomorrow will bring or when I will start feeling better, but just have to try and be positive and get through it.  Here is my story…
My story

I have lived my whole life with a nauseous stomach and constant vomiting.  When I was three my parents said I would grab my stomach and cry.  No pediatric gastroenterologist or pediatrician could figure out what was wrong.  They all just attributed my stomach problems to stress and eventually abdominal migraines.  And that I just happened to get the “stomach flu” more than anyone else.  I thought feeling really full after eating a small amount was normal. The older I got I started having horrible side pains on top of the nausea. My mom and I went to the pediatrician when I was 19 and after having tests to rule out appendicitis, told me to try some yoga. I was appalled…was I really that stressed to cause this many health problems? I had vomited every week of my life almost… on road trips, my first communion, from eating too much (or rich of foods), in stores, and on field trips.  I threw up during a final my freshman year of college and was back to finish it right after. I spent my life in emergency rooms and urgent cares for iv fluids and nausea medicine.
Finally, I had enough and needed an answer or at least give it another try.  I found a gastroenterology clinic in Lone Tree and just happened to get Dr. Patt as my GI.  I remember my mom telling me to not get my hopes up when we had my appointment during winter break of my sophomore year of college.  But Dr. Patt surprised us and has been such an amazing doctor and even inspiration since then.  I got a blood test for celiac disease (gluten intolerance)… negative.  I had a gastric emptying study (GES) which came back abnormal.  For the GES I had to eat oatmeal with radioactive substance and take pictures of my stomach every so often.  Dr. Patt also did an endoscopy (boy was I nervous!) and saw my pyloric sphincter (muscle between my stomach and small intestine) was so small and tight.  Pushing the endoscope through made it bleed… he had never seen such a case.  Of course I had to be a rarity!  My diagnosis was adult pyloric stenosis and gastroparesis.  Pyloric stenosis is almost always only seen in infants and requires emergency surgery because the pyloric sphincter is completely closed leaving the food in the stomach resulting in vomiting.  My pyloric sphincter was big enough just to let a tiny bit of food through but not nearly enough.  Gastroparesis literally means paralyzed stomach and the stomach does not move correctly to get food through.  This is why I was always so full and vomiting so frequently.
I tried reglan (a stomach motility medication) which made me worse because my stomach was trying to empty against an almost closed opening.  Dr. Patt injected botox in the summer of 2008 in my pyloric sphincter with the endoscope to relax the pyloric sphincter muscle.  Wow it made such a difference!!  I was able to eat and live normally for a few months.  But of course I started getting worse again.  Botox was injected once again in January of 2009, but no such luck that time around.  The last option was surgery to widen the pyloric sphincter.  I went to a general surgeon who had never heard of pyloric stenosis in adults.  I later learned there is only one other reported case of primary adult pyloric stenosis so no wonder no doctor had heard of it!  I had pyloromyotomy surgery which is what they do in infants.  The surgeon cut some of the layers of my muscle.  He made his incision in my abdomen and was shocked at what he saw.  My pyloric sphincter had grown so much scar tissue and was extremely inflamed from food trying to push through my whole life.  My liver and gallbladder had attached itself to the pyloric sphincter with scar tissue… scary I was living like that!  This inflammation was causing me side pain and low-grade fevers.  He described cutting the layers as trying to cut a wad of rubber bands.  He also had to cut off the liver and gallbladder.  My stomach got punctured in the process and I woke up in the hospital with an NG tube (to vent my stomach) and on a liquid diet.  I had many complications with the surgery… ileus (intestines stop working after abdominal surgery) and a gross infection.  It would all be worth it though in the end I kept telling myself.  I would be cured I thought… little did I know…  (posted 2011 as a blog)

NN (age not given, source not recorded) –
I was diagnosed with this in the beginning of February after it was revealed in an endoscopy exam.
I had the same problem in April 2008 after complaining of abdominal pain. The doctor at that time was able to dilate the pylorus using a balloon.
In November I started getting abominal pain again after eating, bloating, vomiting if I ate too much (3 meals in a day), feeling of fullness, growling and gurgling noises at all times, etc.
The endoscopy showed the pylorus was now so closed that the doctor said he was afraid to dilate it due to risk of perforation. He said that 1 or 2 dilations is ok but when it keeps shutting the only option is surgery, especially since I’m young.
I saw a surgeon and he said that he would not perform a pyloroplasty (cutting the pylorus and widening it) because he believed the area is now scar tissue. This condition is found mostly in babies and it’s rare for someone my age to get it. As a baby the tissue is still soft and will heal well, but at my age he said there is a risk for the cut to not heal properly, and then I would be dealing with a ton of other problems.
He wants to do a gastroduodenostomy and create a connection between the stomach and the small intestine to bypass the pylorus. I’ve read about the complications of this procedure and they scare the shit out of me, mainly the dumping syndrome that arises from undigested food entering the small intestine as well as the possibility that bile from the gallbladder may enter the stomach and cause irritation.
Does anyone know if the pyloroplasty can be done at my age? The complications for that are much less problematic, no dumping syndrome, no bile leakage, and it is the preferred procedure for babies.
I would much rather get a pyloroplasty done but the surgeon I spoke with does not want to take that route. As of now, if I eat really small meals, avoid thick, tough breads or foods, and make sure I chew my food, I still get a little bit of pain but I am not vomiting and I can get through the day. I would rather hold out to see if the pyloroplasty is a viable option than jump right in and get the gastroduodenostomy.
Also, if you know a forum where I could get some really good advice, I’d appreciate it. I’ve read articles regarding this procedure (yay for college library access!) and the pyloroplasty has been performed on adults in the past with success, so that is a light of hope for me.

PS (born 1984)
I’m 22 yrs old and for the most part I have had a very healthy and happy life until this past January where I started having what I call the “rotten egg burps.”  I went to my primary care dr. and was diagnosed with having ulcer like symptoms and I was put on prevacid.  Shortly after in early march I started throwing up after eating.  To make a long story short I went to the gastro dr. and convinced that I was having ulcer problems he told me throwing up was normal and I got sick every day for three months dropping 30lbs.  I was hospitalized for dehydration after passing out where after several tests it was determined that I had a gastric outlet obstruction.  I had about six endoscopes with dilatations that proved unsuccessful and the burping came back almost instantly.  I decided to have a second opinion done and found that after about six more dilatations I bled internally and the talk of surgery began.  The prognosis was pyloric stenosis which apparently is very common in children but almost unheard of in adults.  The drs. felt that I could possibly have annular pancreas after doing an MRI and scheduled an exploratory surgery that would take care of whatever was going on.  I don’t have annular pancreas.  I have pyloric stenosis and no cause for it.  The first surgeon I talked to said no to surgery unless I had gone to Boston or New York to have studies done on me because I am so rare, and yet the surgeon at the same hospital went ahead and did it anyway.  I had a pyloroplasty and the side effects are dumping syndrome and I guess sometimes anemia.  The procedure could have been done laparoscopically but because they had intended it to be annular pancreas they cut me from under my rib cage to below my belly button.  I don’t mind the scar although it upsets me that further tests were not done to know for sure and lessen the area affected with scars.  I don’t have the burps but I still have an awful taste in my mouth from something that is unexplanable.  I was also told in passing that they detected H-Pylori in me at one time or another but all biopsies were negative for Crohnes and cancer. It’s been two weeks since the surgery and I’m on an emotional roller coaster. I’m angry that I have something this rare that no one knows what to do I feel like I’m the experimental patient and honestly that’s what I am. I don’t really know what I am trying to get out of this post but I guess at this point anything will help.

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2 thoughts on “Networking after pyloric stenosis (6): adult forms of PS

  1. Wendy

    Amazing stories. As a person who suffered from pyloric stenosis as a baby, my heart goes out to those adult sufferers. I hope they receive the help they need. It sounds like the pyloroplasty isn’t as successful in adults as it is in babies or perhaps, less is known since ps in adults is rather rare. Thanks for drawing attention to this condition, Fred. Hopefully, others who have adult experience with ps or who know someone who has will reach out.

    Reply
    1. Fred Vanderbom Post author

      Yes, the adult sufferers of PS have essentially the same condition, but their diagnosis and the choices open to them are quite different and even more complex than they were for the parents of us who had PS in our infancy. Again I wish there was more work done on establishing and reporting on what works and why, both in the immediate and long terms.

      Reply

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