Networking after pyloric stenosis (5): Gastric grief

This post is the 5th of a series started before I took a 3 month pause while my wife and I travelled overseas.  We had a wonderful time of reconnecting with family and friends, explored scenically beautiful and historically significant town and cities as well as Christian congregations and cathedrals, richly endowed museums and art galleries, and in the process my awareness and understanding of my “roots” was deepened, something I plan to post about on my other blog, Fred’s Pages (which has had a longer recess).


 

112This post again presents some of the comments made on Facebook by people who started life with infant pyloric stenosis (“PS”): this time we listen to some of the people who were left with any number of frustrating eating and gastric problems.  If the line-up of people reporting here is too long, feel free to listen to just the first and last few: the stories are awfully and tellingly similar.

Many of these people report (1) these problems as being totally mysterious to them, and (2) that consulting with their doctor did not benefit them with any light or help.  Typical also of their comments: it was when they found online forums like the several PS support groups on Facebook that they realised that many other PS survivors were living with similar gastric “issues” – which prompted them to wonder if their mysterious and annoying troubles were in fact a long-term effect of the condition and / or surgery they had had early in their life.

AA (born in) 1966
I had mine [my operation to remedy PS] in 1966 (I’m 48) and have a two inch horizontal scar… I’m suffering hugely now though from digestive issues (GERD etc) and every year undergo a battery of tests to find what’s causing the issue…  I am wondering if there’s a connection with PS.  No consultant I’ve seen or asked seems to be aware of one.  My scar does hurt/pull when I exercise vigorously but not in a way that it would stop me.

SA 1952
I had PS at 3 days old.  I am now 58 and experiencing weight loss, horrible gas, indigestion.  Dr. has no idea why.  I have to wonder if it can be attributed to my PS.

KB 1987
When I was pregnant my scar would feel like it was splitting open – it was awful.  As for now I have indigestion, acid reflux and struggle to lose weight, it can’t just be a coincidence that so many others have experienced the same thing after this surgery.

LB (year of birth unknown)
…I have always had sensitive stomach issues throughout my life but when I was drinking a few weeks back I got issues with my gallbladder and was also told I may have a bit of IBS so it might be something you’ re eating or drinking that’s flaring it up.  I recovered with some meds to reduce acid and that helped.

DCS 1973
113Growing up I have always suffered with acid reflux and have a bad attitude to food.  I cannot lose weight, suffer with bad breath and over-salivating… the more I talk to people, the more I am thinking my problems are from my ops… [but] the medical sites say there are no long term effects.  To me, it inconceivable that an op on the digestive tract doesn’t then have some long-term effect… In these last few weeks I’ve discovered that I’ve been suffering side-effects all my life: food issues, acid reflux, leading to weight issues… I’ve always assumed it’s just the way I am, but reading other people’s blogs there is a noticeable link between having had PS as a baby and now having weight and digestive tract issues.

HC (re: her PS-affected children born in 2001 & 2003)
My daughter has been pretty much poorly from birth with gastro problems, she had surgery to correct a floppy larynx caused by acid reflux at 8, although she was born with that.  She suffers stomach pain regularly often ending with vomiting.  My son seems to be getting worse as he gets older, severe stomach cramps, always around his scar and he is always violently sick after the pain, usually in the middle of the night.  We have had loads of diagnosis from ibs to bowel disease, the most recent being a dairy allergy; call it mother’s intuition but I can’t help but think it’s all PS related.

HCT 1980
I can’t eat what I like, I need to lose a lot of weight which has piled on over the years.  21/5/14
I have always had bad acid reflux since I can remember, I also have to be careful with certain foods as my stomach rejects them and I’m in agony: eggs, mayo, a lot of dairy.  Eggs is horrendous but I love them, I do have ibs from a young age but I don’t think it’s related to ps as I got ps when I was born and ibs at about 13.

IC 1967
I’ve had reflux since a child… getting worse as i get older… omeprazole and peptac help a little…

KD 1950
Have over the past 2 years had a lot of probs with partial small bowel obstructions that are apparently caused by adhesions very probably from my PS surgery all those years ago.  I am also lactose intolerant and have IBS, and often have pains at the top of my scar!  Apart from that all is good, lol.

TE 1980
I had PS and have IBS, my son also had PS, he has trouble with his bowels (even worse than me), doctors say he’s too young to be diagnosed with IBS.  They also told me PS doesn’t cause stomach problems, but I’m sure there must be a connection.  We are the only two in family who had PS and have bowel trouble.

SH 1965
I have always had what I call intestinal distress and wonder if that is common.  The only other complication I have had is 5 years ago when I had emergency gall bladder surgery.  I had so much scar tissue that my gall bladder, bile ducts, etc. were basically cemented together which made the surgery last much longer than anticipated.

EK (year of birth unknown)
I needed to change my diet to stop the stomach aches and acid reflux issues.  My mom helped me figure out what I needed to change in my diet.  I rarely eat onions, garlic, intense peppers, greasy foods, raw cauliflower, beef (I can do pork fine), and some dairy products.  Prilosec seems to help the best when I have indigestion but if I eat something (raw or cooked) with a lot of onions/garlic, it could take 2-4 days for me to recover.

EM 1974
My wife is always concerned at how often I throw up, it’s hard to explain, it’s not the same as when you have the flu.  I can go out to eat and gave a salad, steak and potato and go to the bathroom and get sick and it will be just the salad dressing or just the steak, and it’s [the vomiting is] very powerful like I would imagine PS projectile would be.  The way I found this information was 2 days ago: my wife and I were out, we stopped and grabbed a couple of hot dogs for dinner, it was around 7:00 pm and I woke up around 6, went to the restroom went back to bed, then got up at 9:00, ran to the bathroom and got sick. …I’m sorry for being gross but when I got sick it was intact dinner, to me that is not normal, I get sick often.

PM 1969
Now, almost 45 years later, I am having some tenderness at the surgery site and acid issues.  Wondering about scar tissue?  Just had an endoscopy to try and figure things out.

HP c.1990
Interested to hear about not knowing when you’re full.  I’ve often wondered if my problems with that were related to PS.

JP 1978
Is it common for us to get GERD later in life?  It would make sense if the opening was bigger and letting more acid up.  I’ve had GERD for about 10 years now.

VP 1984
111Had the op at a few weeks old, just turned 30 and been having terrible stomach issues like colic.  Not acid but reflux straight after food.  Always feel stuffed to bursting when I eat.  My relationship with food / weight management has suffered all my life to control.  Finally controlling weight and stomach pains commence at this old age – lol.  Just had gastroscopy and ultrasounds but I’m apparently all well.  No issues.  Just been given anti sickness tablets to try.  Next step.  Used to be able eat 3 courses, then pain.  Now I can’t manage one course at a restaurant [without] pain.  Think I’m gonna be put in the IBS category even though the pain is high up under ribs and in my stomach, not the bowel.

HPS (year of birth unknown)
I’ve also found that I don’t ever feel full.  On holidays and at buffets, I just find that the food stops going down at some point and my stomach stretches to a painful point.  However, I also have trouble figuring out if I am hungry.  If I don’t eat on somewhat of a schedule, I just hit a point when I get a very bad headache or shaky hands, and then I know it’s time to find something, fast.  My parents say that I have been the same way ever since I had my surgery for PS, so I wouldn’t be surprised if they are related.

ARB 1992
I’m 21 now and I have a hard time bouncing back [after a stomach bug attack].  Leaves me weak for weeks… sometimes months.  My doctor says it’s because my stomach went [through] such a major change when I was a baby.

LS 1988
I get a lot of odd tummy issues, weird noises, acid reflux pain around my scar among other things.  Never really linked them until I joined the [Facebook] group and noticed others have experienced the same too.

CT 1985
I had pyloric stenosis and I had coeliac as a child and now I suffer from stomach pains, bloating and constipation. x  I’m sure it’s all linked.

HT 1993
When I burp, I still throw up a little.  Is that just a long term side effect?

kid stomach pain3CV (year of birth unknown)
I had pyloric stenosis as an infant and for as long as I can remember I’ve had a sensitive stomach.  I have started to wonder if there a tie between the pyloric stenosis/surgery and the frequent yet mild nausea.

DW 1962
I am 52 now, I have never been able to put weight on, wished I could.  I still suffer today, not with vomiting but bloating, bowel pain, excessive wind from both ends and acid indigestion.

Once again I cannot help noticing that –

  • the stories are very similar;
  • the medical world is not interested in diagnosis, research, or remedies;
  • it very much seems (at least to those most affected) that the long-term effects of PS and the Ramstedt operation for it are far from well-understood and acknowledged.

This series of posts has been based on Facebook common interest sites and bears out that the medical alternative to treating PS surgically should be considered in almost every case – as used to be the case in the UK and Europe in the 1920s and 1930s and as it still is today in several developed countries.

The medical treatment option like surgery is not always trouble-free, but it may well avoid most if not all the serious complaints and problems which fill the hundreds of PS pages of the web’s forum sites.

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4 thoughts on “Networking after pyloric stenosis (5): Gastric grief

  1. Wendy

    Excellent compilation of testimonies. The Internet is so awesome for the fact that PS survivors with stomach issues can all weigh in on their digestive problems, no matter that medicine tells them that they should have no problems. From these stories, others will see where they fit in. When one is suffering from an unknown ailment, it’s so essential to find just one other person who may fit into your category. And here, you’ve amassed so many! Thank you for your continued reaching out to pyloric stenosis survivors in need. Sometimes just knowing why we are suffering is healing in and of itself.

    Reply
    1. Fred Vanderbom Post author

      Thank you Wendy for these comments. Yes, the web is a wonderful way of exchanging information, experiences and stories. I have found that several of the 10 or so PS Groups on Facebook are at present the most active place on the web where this is happening, and as my last few posts have shown, what people have shared via Facebook in recent years forms a valuable and indeed formidable body of information. I agree that most of what is published on the web does not equal “scientific proof” – but in this case I believe it does raise a very loud, clear and challenging voice. If only the medical world would listen and respond to this!

      Reply
  2. Kathy Conahan

    I had PS surgery at 6 weeks old. I don’t remember a time in my life when I didn’t have stomach issues. I say I was born with them. I’m 55 years old now and still have many issues. I have mentioned having PS surgery to many gastroenterologists with only one saying “really”. There has to be a link between PS and further stomach issues. There are days when I literally cannot leave my home due to the fear of needing a bathroom in a hurry. I am lactose intolerant and have food allergies and sensitivities. Eating at a restaurant is a nightmare for me. I can sympathize with all the testimonies in your compilation. Thank you so much for this site. At least now I know it’s not “all in my head” because others are going through the same things I go through all the time. Medication helps, sometimes. Many days, I take the medication, lie down with a heating pad on my stomach and hope for the best. It’s no way to live but I don’t have a choice. I deal with the hand that was dealt me. Maybe a PS surgery survivor will become a doctor and try to help others in similar situations. If so, I’d be the first one at their door!!!

    Reply
    1. Fred Vanderbom Post author

      Kathy, you are certainly not alone, it’s not “all in your head”, and (in case you wondered from your doctors’ reaction) you are no freak! The post above this, many of the readers’ comments on this blogsite, and the number of visits here (averaging near 100 per day), make that very clear. It must be recognized that not all PS survivors have ongoing problem: there are obviously many variables. But that does not wipe away the experience of countless people like yourself.
      If you (dare to) network with Facebook, I encourage you to join, read, and interact with the comments on the several “closed” PS Groups’ pages related to GE problems after PS, both post-op and in later life.
      And sadly you are right, most GPs and GE specialists shrug off the obvious, the science, and the very few and small-scale surveys that confirm a link. Only very occasionally, it seems from the personal stories, does a medical worker acknowledge a connection. I also long for the day when a medical professional will be motivated to do some serious work on this: many PS survivors would be sooo grateful!

      Reply

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