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pyloric stenosis scartissue(infant)causingproblemsin adult
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pyloric stenosis scartissue(infant)causingproblemsin adult

Pyloric stenosis surgery at age 6 weeks. Now, as an adult, (age 42) severe gastro problems. Cramping, vomiting, extreme pain. "Attacks" come anywhere from every 3 or 4 months to 7 or 8 months. are very debiliting, and last several days. This has been going on for at least 15 years. Drs. could not find cause and even removed appendix, until someone thought it might be a result of the pyloric stenosis surgery as an infant and resulting scar tissue.  Is any one else who had this surgery in infancy experiencing these problems? Can anything be done?
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I had Pyloric stenosis surgery at 2 weeks old. I have 2-3 inch horizontal scar on my right side. The scar is puckered, which I'm assuming is excess scar tissue. It feels as though it is connected to my ribs. I have been researching plastic surgeons to have this corrected. I'm a little nervous that when I become pregnant whatever the scar is connected to, will not stretch. Over the past 2-3 years, I have noticed a severe increase in acid reflux to the point I feel I need to cough. I haven't noticed anything as severe as cramping or vomitting but after doing some research on here, I'm wondering if the acid reflux is a sign of something gone wrong. Now that I understand more about the surgery I wonder if the muscle around the pylor has overgrown again. I don't know if anything can be done. I'm surprised they haven't tried to go in and remove excess scar tissue.
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Avatar_f_tn
I am 27 weeks pregnant and I have the same pain. It feels as though the scar is some how attached to my ribs and my growing belly is pulling on it. It feels like something is slowly being ripped inside of me, some days it is a slight ache while others it is a throbbing/shooting pain on my side. It seems to come later in the day, as if the pull of the weight of the baby is straining it somehow. Also, some days it feels numb and tingly, but not in a good way.
I told my OB about it but she didn't really seem to know anything nor did she seem to care to find out. It just feels like something is not normal- I know that the surgery is usually performed on males who don't have this problem later in life- I wonder if the surgical practices 20some years ago were outdated and now I'm feeling the effects of it..?
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Avatar_n_tn
I had the same operation at 6-weeks. I have a 5-6 inch scar across the right side of my stomach. I am a male unlike the other 3. I have noticed when I do cardio workouts, I get very sever cramps/pains in my scar. It sometimes feels as if the scar is ripping open (painful, right?)

Now sure what it may be, no one else seems to know either.
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Avatar_n_tn
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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Avatar_n_tn
I am a 27F and had pyloric stenosis at 3 weeks. I too have a 4 inch scar on my right side, just below my rib cage. I am the third child, with two older brothers. My male cousin also had it. About six months ago I had my first "attack." I thought it was my gall bladder. I had just eaten some spicy meat and attributed it to that. Today I had it again. I talked to my dad who damaged his pylorus (the same muscle that thickened in us as babies) in an auto accident about 20 years ago. He now has acid reflux and alot of stomach problems. I was describing the pain I have been having and said it was right under my rib cage and he picked up on the similarities and suggested I see the doctor. He said it could be related. I haven't been vomiting, but have had severe, acute pain right below my scar. The area around my scar is very swollen and tender and I can feel a lump underneath it that moves when I press on it (try pressing on your thumb joint...the tendon above it that moves...that is what it feels like.)
My husband and I are also thinking of having children soon, and I am now concerned. I'll be going my doctor Monday and will post any results. Anyone interested in keeping in contact on this? Anyone had any updates since their post?
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773851_tn?1349237835
I'm 64 & M, sorry it's taken me so long to read your bit here.
Interested in what your doctor said (last October) and any progress.
Haven't had any pain issues myself, but 2 comments -
Facebook has a few PS Groups, and from them and other stuff on the web it seems the scar and adhesions causing problems in pregnancy are rare but do happen, with pain and even some bleeding. Your GP or Obs would be the best to advise.
From my reading it seems the surgery is often done involving incisions in 2 planes - I have a 4" vertical midline but under it I can feel a hard lumpy area ruinning across under the surface scar. This makes sense as it seems wound rupture is a real issue and is much less likely if the cutting runs 2 ways. You may need to ask if your lump underneath is normal or a recent thing. As said, I'm 64 but didn't discover the scar under my scar until a year ago after I read about how the surgery is done.
Best wishes!
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Avatar_m_tn
I had to respond to this because my husband just had gallbladder surgery and the surgeon came in to visit me and said the problems with his gallbladder were more from his ps surgery when he was 3 weeks old.  He removed his gallbladder and all the adhesions.  Basically the adhesions were causing the gallbladder problems.  I think he will be a new man.  We have had every test ran on him for all his gastro problems all our married life and before.  
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Avatar_f_tn
My daughter had PS when she was 3 weeks old, and now is 14 years old, having many problems with pain and bulging, she is having LOTS of reflux problems and we are headed to the Dr next week, I will repost when we get back....
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Avatar_f_tn
I also had poloric stenosis as an infant, adhesion surgery at age 5 and after 20 years of severe pain, vomitting...that comes and goes....may not have any pain for a year or two, then months of pain...finally my doctor sent me to hospital for possible exploratory surgery...surgeon did xray after two days of no solid food and found another blockage, more surgery, and I'm told this surgery may last 10 years, but be ready for more surgery to come. I am a female, and had absoutely no trouble with any pregnancies...all full term.  My orginial incision is middle of stomach about 4 inches long.
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Avatar_m_tn
Hey all,

Me n my twin bro had the same operation one at six weeks and mine a week or so earlier than his ( i was born five mins before him). I have the same problem with abdominal exercises, where my tummy seems to contract and spasm real tight. Then beats erratically like it has a pulse in their - a little random I know. My scar is a little to the right and of 4inches, lumpy, bumpy and still have staple marks - i presume the scar has stretched and filled with collagen as i have grown up, now 31. Paul's scar is more central and in much better condition than mine. i always seem to have a constant greasey spot that inflames at the lower part near my belly button. I am going to try and get scar revision on the nhs to try and relieve the tension and discomfort, is this possible and has anyone had it done. Thanks all Lee
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773851_tn?1349237835
Leeroy,
Sounds like adhesions could be the problem, but a good doctor could tell you. On Facebook there are several PS Groups and there's some feedback there from people who've had scar revision done. If it's adhesions, though, I'd be careful. One of the other PS discussions here at MedHelp has a blog from someone who has had 2 ops for adhesions since her PS surgery, and she thinks she's heading for another one. If you've got adhesions try to live with the discomfort, as every surgery brings a risk of more developing.
Best of luck.
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Avatar_n_tn
My daughter had pyloric stenosis at weeks old recovered quickly and seemed normal. She is now three years old and for the past six months i would say has had alot of problems. Her problems have mostly occurred during the night will she will awake with severe  abdominal pain and vomitting. The area around her 4-inch abdominal scar will be hard as a rock and she complains of pain right at that spot. This will continue through the night for usually about 3 to 4 days. She is usually fine in the daytime there have only been two instances taking place in the daytime. She was diagnosed with the flu this last time as i took her to the ER due to her abdominal pain being so severe...nothing was found on exrays, blood tests, or the upper GI...she sees her family dr in the morning where I am requesting to see a specialist...I just dont want my baby hurting so badly. help???????????????????????
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773851_tn?1349237835
You must get your DD seen by your family doctor and if need be a specialist. From what you and others have described, keep in mind possible adhesions from the ps surgery. Check out some of the "Related Discussions" links on this page, like "Intestinal Scar Tissue" and "Stomach Trouble". I hope your problem is something less troublesome because adhesions doing this at your DD's age may be a taste of what she'll have to cope with thru her life.
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Avatar_f_tn
I am a 36 year old female, with 3 children. I had pyloric stenosis operation in 1974, at 6 weeks old. My scar is now about 5 ins long, a cm wide and has 4 'stitch' marks down either side. It sits off centre to my right side, vertically. And without a doubt is attached to my abdomen at the bottom of the scar! My mum said it was just about two inches long when first done.
Throughout childhood I complained that my 'scar' hurt and was dismissed by GP as part of growing! At 18 I had my first pregnancy, and had a dip in my stomach as it swelled, with a feeling I can only compare to being jabbed with a pin. It wasnt so bad with my second child a year later, although the dip was there as stomach grew.
I had my third and last pregnancy at 33 years old, and my last baby was bigger than first two.
I collapsed with severe pain in middle of right side 2 and half years ago, and initially was diagnosed with kidney stones, but urologist did not think stones were big enough to cause pain I was in. (They were smaller than grain of rice.) I am now awaiting endoscopy with gastroentorologist to see if I may have adhesions.
My scar is definately pulling upwards towards my right ribs and I am rather unhappy that I have had to suffer for this long to get any answers! I have been back and forwards between the specialists 4 times now as neither would pin point pain, but if I were able to 'operate' on myself, I am convinced I could put my finger exactly where my pain is! The pain is at best mild, but can get worse, usually 30-45 mins after eating. It is constant, but I have learnt to recognise ofset and control with painkillers.
I have been lucky that none of my children inherited the pyloric stenosis. I am convinced that my life time of constant stomach problems, cramps, constipation, stabbing pains, nausea, etc etc!! has been a result of this condition, and wouldnt wish it on anyone! Good luck to you all on getting it sorted, and insist on help if your child continues to suffer.
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Avatar_m_tn
I am 42 and my whole life had digestive problems.  I am male, and had the piloric stynosis operation a few days old.  Only just this week, after thinking I had a gall bladder attack did I finally - after decades of basically being told I am crazy when ever I went in for stomach pain - did a doctor tell me I might have adhesions.  I was actually in the hospital thinking I had a gall bladder attack, but when I explained to the doctor that as long as I remember I have had pains under the scar from the surgery and throughout my intestines...worsening as I got older - did it seem to click.  Still have to see more specialists and determine things....but it is great to finally perhaps have an answer.
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Avatar_f_tn
I have visited this post many times while searching for answers, I am glad to see I am not alone with this, but maybe someone has been able to find relief with it...I am a 22F and I have spent the last 7 months going to the Dr to not get anywhere with this issue. I had surgery for Pyloric Stenosis in 1988 when I was 6 weeks old, I have a 3 inch vertical scar under my right rib cage, I regularly experience severe stabbing, ripping and burning pain. I have a knot that protrudes over the scar and burns and throbs when you touch it. I had an ultrasound that revealed a 3mm non-specific thickening of the gallbladder wall, a HIDA Scan that came back 1 point under normal, which is not enough to remove it. One Dr has blamed everything on stomach acid so I am now on 40mg of Omzeprazole. I went back about 2 months later still experiencing pain and she still blames it on stomach acid and told me to double my dosage, which seems unreal to me since I am on the 2nd highest dose available currently. I have had pain on and off associated to my scar since I was little, but it just seems to get worse. I also have insanely high ANA's and my Thyroid panels are off...has anyone else had an Autoimmune Disorder related to any of this or found any answers or relief with this?
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I had pyloric stenosis as an infant at about 6 weeks, had surgery. I am 23 now. My first child (my little girl) was also diagnosed with it and had her surgery at 6 weeks and 3 days. Now that I'm pregnant again and with a little boy this time, I'm wondering if he will also have it. Any insight will be greatly appriciated. Thank you so much!

Also,
My scar gives me problems all the time and until today, thought I was the only one.... Seeing all this has really helped me out personally! Pregnancy is a little tough on my scar the pulling sensation and sharp pains suck to say the least but the little angel in the end makes it all just disappear!
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does anyone have any remedies i could try to help ease the pain? I'm 27 weeks pregnant today and the pain seems to be a little worse everyday and I'm wondering what I can do to be as comfortable as possible. My scar just feels like it's going to bust open.... The pulling, burning and stabbing pains are becoming unbearable and any advice is much appriciated!
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1941041_tn?1323863116
Hi my name is Laurie and I had this same surgery when I was a very small baby, been having tons of stomach problems growing up, now have irritable bowel syndrome, gastritis, hiatal hernia, acid reflux, barrets disease of the esophagus, chronic inflammation of the stomach and tired of feeling nauseated all the time, periods of throwing up for weeks several times a day to feeling so sick but I can't unless I make myself, after I mentioned to Dr.s could this be from the  pyloric stenosis and told no many times now my Dr thinks it may have to do with that, still going through tests and same day surgeries to find out what is going on but destroying my life, hardly eat and when I do I feel so sick all the time, they tell me on paper I look like a million bucks and can never find anything, this is getting very irritating, how can I keep living like this?
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1959966_tn?1325200102
My son had PS surgery when he was 2 weeks old. He is 9 years old now and his scar is tucked way in and he complains of pain and pulling. I took him to pediatrician and she referred him to pediatric surgeon. The surgeon knew exactly what was wrong, he had a hernia and tearing from the pulling of the scar because it was attached to his abdominal wall and as his belly grew it got worse and pulled more and also the scar tissue prevented his ab muscles from growing together. He just had surgery on Tuesday , December 27th 2011 and they detached the scar from the ab wall, repaired hernia, and attached the muscles how they are suppose to be.
The surgery went well, but recovery is pretty tough. He stayed overnight at hospital and we came home the next evening. He is in a lot of pain and has a hard time even walking to the bathroom. I know it will take some time to heal and feel better, but he is going to have a better quality of life now without scar pain.
If you have insurance this procedure is usually covered b/c it is a health concern and NOT cosmetic reasons. So a pediatric surgery is the best way to go and not a plastic surgeon.
The incision now sits flat on the tummy and isn't tucked way in.
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Avatar_f_tn
I am bit late coming into this thread.  I had surgery for Pyloric Stenosis at age 6 weeks (in 1965) and am now 47 with a horizontal scar on my right side about 3-4 inches across.  My younger brother age 46 also had Pyloric Stenosis and had surgery at 6 weeks, my mother had Pyloric Stenosis symptoms back in 1943 (she couldn’t keep any food down and lost weight drastically, the doctors fed her yeast water back in the day as they didn’t have this surgery back then.).  My older brother age 49 (the brother who did not get Pyloric Stenosis) his son, now 13 had Pyrloric Stenosis as an infant and also had the surgery.  So, it is hereditary.  So, in my family we 2 females and 2 males having Pyloric.  I have experienced pretty much the same as others have said, when I exercise I get sharp stabbing pains in the incision area.  The top of the incision is quite fatty, but the bottom is not.  I just have been having acid reflux so bad that my throat feels sore and raw all the time.  Also like someone else said, bad cramping episodes every few months.  When these episodes happen, it is unbearable, almost like having labor contractions, it cramps up to the point I hold my breath and I am in tears, then eases off, then cramps up, then eases off.  So much worse than labor contractions (and I have 2 boys)!   I never thought about Pyloric Stenosis as a possible cause.  In fact, I don’t think much about the Pyloric at all.  I never really thought much about my scar and it never bothered me as I was growing up with it because it was always there.  Funny, I didn’t realize there were so many of us out there.     I also was born with “Brachial Cleft Cyst” it is a hole on the outside of my neck with a tunnel that goes thru to my throat.   It doesn’t do anything and it is small as a pinhead.  Can’t really see it.  When I was a child and had a cold mucous would come out of it, guess this passage goes up to sinus ear area.  Anway, another odd thing that I was born with.  Now, it doesn’t do anything, but the hole is still there.  
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2148885_tn?1336415020
For the past 4+ years I started having not so nice stomach problems.  I know I have had stomach problems longer then that but I used to model so I didn't think much of it.  I am not a big eater, but I love hot foods. I have always had eating problems in my life, as I used to model, and even though I don't model anymore, I don't eat very much, about 1000 calories a day, and I work out for 2 hours everyday. My problems all started when I was going through my divorce so I considered it stress. So I thought it was an ulcer and I have been eating tums like candy. The biggest problem is the feeling like someone is stabbing me in my stomach as the same point every time. It is right under where my rib cage ends, right in the middle of my stomach. The funny thing is that is where my scar is from my Pyloric Stenosis, which I had at 3 days old in 1982. I have about a 4" scar that is vertical, and starts right where my ribs end. I have been to the doctor so many times with heart burn, and stomach pain and they also thought I had an ulcer at first. Now they have found gallstones and I am talking to a surgeon today about removing it. I am wondering if that is going to make my problems go away or is it the Pyloric Stenosis that is causing all the problems. I also have a lot of problems with the lower part of my stomach hurting at different times. Help Please!
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773851_tn?1349237835
Hi, I've read several stories from people who had gallstone surgery only to find their trouble was caused by their PS scar. If gallstones have been found for sure, fine,but you need good disgnostic work to be sure this is your problem. Otherwise you may be better off seeing a plastic surgeon. Many doctors seem to think PS surgery never has after-effects but a scan of the web will give you lots of stories about adhesions and other GI issues. Best wishes.
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Avatar_m_tn
I am 20 years old and had my surgery at about 5 or 6 weeks, I believe. I've had horrible stomach problems since ..  as long as I can remember. I couldn't tell you the last day that went by that I didn't feel sick to my stomach from eating, or the last day that I didn't fall asleep or wake up with a horrible stomach ache. I just really want to know if my PS is the reasoning for all of this. Almost every doctor I've went to has said the same thing, 'it has nothing to do with your surgery as a baby.' I've been hospitalized twice for severe stomach pain, severe weight loss, and loss of appetite. Once when I was 14 (for a week) and once about a year ago (for a night). That doesn't count all of the times I've been up puking all night, had to call off of work, or just went in because I thought I had food poisoning. All of the ER doctors have said that they can't find out what's wrong with me, though, and usually tell me that they think I have the stomach flu. A twenty year long stomach flu!?!?! I went to see a specialist only once, and even he didn't exactly know what was wrong with me. I felt like he was almost toying me around, so after five times of 'it might be IBS', 'it might be this/that/etc', I became fed up and stopped going. Seeing posts about women who go through pain with children also frightens me because dealing with this for twenty years is enough! I just really would like to know if the PS could be the real problem for all of this. Any kind of relating or feedback would help.

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Avatar_f_tn
I just ran across these postings while researching my symptoms, and I am relieved to hear that other PS adults are having similar issues to mine. I have the exact symptom you are describing; the feeling of a ball being under my PS scar/rib cage area.  I have always had tension and spasms in the scar area, but it has evolved.  It is really scaring me, and I hope it is not something serious, like a liver issue.   It is very painful when I sleep on my stomach or right side where the scar is.  I too had PS as an infant and the now, 4" scar is very pronounced; lumpy, hard, with a deep valley where the stitches were.  The sensations from the scar have gotten worse in the past few years.  I am now 43. I have always had severe stomach problems from motion sickness, ulcers, chronic stomach pain almost every morning including irritable bowel syndrome.   I would love to hear what your doctor has to say.  I hope you will post your follow up.
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Avatar_f_tn
I am 29, female, and had the surgery as in infant also. I have had 2 babies, and both times the scar would hurt like someone was stabbing me!! If I work out a lot, it cramps really bad too. I have had the most sever acid reflux  for at least 15 years...I really think it is all related, too many of us having similar issues for it to be a coincidence!!!
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Avatar_f_tn
I am 46 and had the surgery as an infant in 1967.  My scar is horrible and like others here it looks like I was butchered and left disfigured.  I feel relieved to hear that others have the same horrible puffy scar that goes inwards in places and is about 6" long.  I have always suffered with digestion and cramps amd never thought that it was linked to my PS.   I have 3 children and luckily none of them had PS.  I get very depressed by my scar and have never been able to wear a bakini and I have always tried to hide it even from my nearest and dearest.  I would like surgery, is this something I could get done on the NHS?
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773851_tn?1349237835
Many people have mentioned here their various digestion problems, abdominal discomfort, pain and cramps. What next?
We need to realize that from the medical viewpoint abdominal problems are very common.  It seems between 15 and 20% of the teenage and adult population suffers from the “Chronic Functional Abdominal Pain Syndrome” (in other words, pain when the alimentary canal is functioning).  Look up http://gut.bmj.com/content/45/suppl_2/II43.full.pdf for many more details.
It has a nice general name and it's fobbed off: oh dear, it may be physical, emotional, passing or chronic or dangerous, and GPs find it easiest to ignore it unless it looks obviously bad or we're very persistent – many doctors are taught to take it seriously only after 12 months of complaints.  Small wonder the connection with Pyloric Stenosis gets little research attention. Remember how many of us when we were a baby with PS were not taken seriously until we were nearly dead from dehydration and hunger?
On my blogsite (SurvivingInfantSurgery - it has a Search box and tags) I have written about this and mentioned that a few studies have discovered that PS patients do have various of the problems you people have mentioned more often than average, as well as adhesions, which result from almost all surgery although they only sometimes cause the kind of problems you mention.
So it may well be hard finding a GP, MD or a GI specialist who will take your cases seriously: going by countless reports I have seen, most will fob us off as just another CFAPS case, and dismiss that our PS or scar has anything to do with our trouble.  After all, most doctors and websites take the short-term and narrowly “medical case” line that PS has no long-term after effects.  They probably don’t realise that hardly any studies have actually been done on this!  If the baby stops vomiting the case is closed … and the operation is declared a total and lifelong success.  How unscientific.
I'm sad that I sound cynical but 15 years of web research and correspondence with a few pediatric surgeons has confirmed all this for me.
My blog and several PS forums on Facebook and on this and other forum sites seek to raise general awareness of the several issues around PS.  Please consider joining, show your support and tell your story.
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4772035_tn?1358973509
Hey, I Am A 17 Year Old Female. I Have Had The PS Surgery When I Was 2 Weeks. Unlike Most Of You My Scar Is in The Middle Of My Stomach Level With The Bottoms Of My Rib Cages. Now I Have Bad Stomach And Digestion Problems. I Can Only Eat Certain Amounts Of Certain Thing, I Have Sever Pains, Vomiting, Low Immune System. Also I Have Been Hospitalized 3 Times For Bowl Problems. For Some Reason Even Since The Surgery I Still Tend To Not Be Able To Digest Food Right. My Little Brother Also Had The Surgery. He Has Few Of This Things But Their Not Severe.
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Avatar_f_tn
My son is now 14 and had his done at 27 days old but is now having severe stomach problems again as well. He vomits for several hours several times a week now and will be going to have another upper GI done in the morning. Praying for answers
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Avatar_f_tn
I know u posted this years ago but if u see this I'd like to know how your pregnancy turned out as far as the scar pulling is concerned.
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