hi I was wondering if anyone with Achalasia also has Pylric stenosis? I have had Achalasia for most of my life. I am 26 now and had heller myotomy back in 2002. Also have gone through dozens of dialation after surgey. Now they found that I have Pyloric stenosis and my esphagues is still closed and has no motility. Please help!
My understanding is that the combination of problems in both the lower esophageal sphincter and the pyloric sphincter would be unusual in primary achalasia. Such a thing is not unheard of though. It is interesting that you were told you have pyloric stenosis. Most doctors only use that term for infants patients and use other terms for adult patients, but it is used by some for adults.
notan
Hi there,
Well, I don’t know if I am talking about the same thing as pyloric stenosis, but I just googled on the term and found pictures etc. that made me go: aaaaaaah…
I have had achalasia for very long now too, my first myotomy was done 11 years ago, my 2nd one (last January) failed and I am going in for my third one next year.
My stomach problems are pretty bad. I feel really sick (nausea, severe pain and diarrea) a few times a week and we still don’t know what the cause is. The problems worsened severely after my 2nd surgery. It was expected then that they were caused by a damaged nerve. Nevertheless I would expect that nerve to have healed by now. April 23 I had Botox treatment and rests of food were found in my stomach, whereas my last meal had been eaten the day before. During the night I felt the food in my esophagus, so I am not sure when it arrived in my stomach.
Just Thursday I sent my Dutch surgeon an e-mail asking him what he thinks the problem might be. I explained all things that bother me now concerning my stomach. My family doctor in fact told me a couple of weeks ago that he hoped I didn’t have the same problems at the end of my stomach as my achalasia problems at the beginning of the stomach. Well, when I look at the p.s. pictures I found on the internet I know exactly what he means and I guess he must have been talking about p.s. I got frightened by the term myotomy mentioned as treatment on the page I found by googling.
What testing did you undergo to find you had p.s.? As I truly want to find out what’s the matter with my stomach. I want to get rid of these problems! I bet you understand what it is: first you need to worry to get the food in (I am on a liquid diet now, as normal foods don’t go down faster than within a couple of hours, I take one normal small meal at about 17.00h and don’t take anything after about 19.00h). When food is in, I need to worry not to get stomach aches. I am so fed up with this all, I have a family to take care of, I am pretty young (33 y.) and I just want to live a normal life without feeling sick and tired every day.
What treatment are you undergoing for your p.s., if any?
As I am going in for my 3rd myotomy (TSE procedure probably) I want to have my other stomach problems sorted out before that time. Should surgery become necessary, they can do it in one go. I have also read a post from someone on Yahoo who had a dillatation on the p.s. this worked for her, so that might be an option too.
Thanks in advance and please keep me posted, this really is an important subject to me.
Love,
Isabella
Hi Isabella,
I had a gastric empty study and a transit study done. It showed that the food did not go into the stomach after 15 minutes. then once I took a drink some food went into my stomach. From that point they measured how much of that food emptied to my stomach after 2 hours. Also my surgeon did my dilation of my esophagus and he saw food in my stomach. He had me on a no food or liquid diet for 2 days before. I was in the hospital so I had an IV. I get the same feeling nausea, pain and bloating. I don’t get dire aha I can’t go. I take reglan and that really helps with the nausea and move the food through my system. I’m sure you know the feeling of the food moving in your esophagus and when it is in the stomach. when I take that medicine I can feel it moving all through my whole system. it’s weird. I am only 26 about to be 27 in September. My surgeon doesn’t believe in doing myotomy for a second or third time. He tries dilation over and over again hoping that works. Now he is going to Dilate my esophagus again after having it done just a week ago and he is going to dilate my stomach to take care of the Pyloric stenosis. Also he plains on injecting Botox in both. I hope it works. If nothing works the I will be look at esophagus re sectioning (esophagus removal). My surgeon has many patients wish achalasia.
I was wondering if you have ever been to south America? I was when I was little and I wonder if I have chagas. I am going to have him test me for it. I read if you have both achalasia and a narrowing of the stomach you should be tested. Also I was wondering how you kids are? My son was born with a horrible heart defect and went into heart failure a 6 months of age. Luckily he got a heart transplant and is doing great. I hate having this illness and now having this P. S… Also to let you know Peppermints work great for spasms. Also peppermint tea. My surgeon swears by it. I have gotten spasms since I was 14. In the last year I really don’t get them much. That has really been nice. I hope they figure it out. I wouldn’t go to you PCP for help. I would go to your surgeon or a gastroentrologist. Either one should be able to help. Also I wanted to let you know that you shouldn’t eat fatty foods or nuts or anything that causes delay of the stomach emptying. That should help the pain some. Even ice cream can really delay your stomach and cause pain. Check on line and they mention a whole lot of things to stay away from. I really hope they can figure it out. Feel free to email me anytime.
Abigail
hi,
Yeah that is what my surgeon said too. It is unusual it is another motility
disorder.
Abigail
Hi Abigail,
Thanks for your response. I am still hoping to only have achalasia, I find that quite enough. Yet, there certainly is something the matter with my stomach and p.s. really is an option, although I think chances are really little to have both (well you have proven otherwise…).
Coming Thursday I’ll talk to my Dutch surgeon again and I’ll ask him to run some tests on my stomach problems.
Indeed I have been to South America (Mexico), but that was after I was diagnosed with achalasia, so I don’t see a connection there. As I am from Europe Chagas in my case is probably not the matter.
My kids (2 boys, 9 and 5 y. old) are both fine. Our eldest son did have a narrowing between his left kidney and his blatter when he was born. This resulted in a mega-urether and his left kidney functions a bit too less, but he has no problems at all because of that (the right kidney functions enough to reach 100% function all together).
I am sorry to hear your son had to have a heart transplant. How wonderfull that he’s doing great now! I am so glad, that it’s me who’s got to go in and out of hospital and not one of my kids!
At the moment I am under the best possible care. Dr. Schulz in Germany (Europe’s top surgeon on achalasia) is going to perform my upcoming surgery. In Holland I am in the hands of Dr. Broeders, who is also great. Dr. Broeders performed my 2nd surgery. There were so many complications, I don’t blame him at all for the surgery to have failed. I know he did the best he could for me. Now he’s backing me up in my decision to go abroad for my next surgery. Both Dr. Schulz and Dr. Broeders are not only great surgeons, they are also great persons. I am blessed to have them looking after me.
Furthermore I have great contact with my family doctor. He’s always one of the first persons I turn to when having a problem. He understands what I am going through and he has done lots of research for me regarding my achalasia. He always backs me up and supports me. He’s also a great mental support and he knows how heavy things have been on me lately. He’s also the first one that mentioned that something might be the matter with the muscle at the end of the stomach. He’s the one that made me think that I have p.s. (even if he didn’t mention the name, which I learned from your post yesterday).
Mentally things really weigh so heavy on me right now. I am positive and I am looking forward to my upcoming Botox, yet I know I need to have another surgery… I keep having my doubts: is it necessary; is it dangerous; am I selfish; can I not live on like this; etc. etc. etc. I really could write a whole page with those stupid questions and it really doesn’t help… I wish we were a year further ahead and the whole thing would be over and done with. I am so much looking forward to normal swallowing again.
Why does your doctor not do re-do’s? It’s very common procedure, for as far as I know. I know several patients who had successfull second/third myotomies. Dr. Schulz has performed hundreds of first myotomies and I think about 25 re-do’s. His re-do success rate lies at about 75%. So chances are OK, but guarantees of course cannot be given.
For as far as I know having dilatation after dilatation doesn’t do your esophagus much good. Maybe you should do some research on re-do’s and on your doctor’s experience. He might have several achalasia patients, but if he doesn’t perform surgery on them…
As for the Botox: I had my first treatment April 23 and it was simply great. It worked wonderfull for about 3 to 4 weeks and then it has worn off. I am looking forward to July 16 when I am getting my next. The Botox is to fill the gap between both surgeries. Botox seems to work about 5 or 6 times in a person and then it is to loose it’s function. Everytime you get new Botox it also seems to work a bit shorter, I was told.
Love,
Isabella
Had a myotomy done and both vegas nerves were cut during the procedure. This caused trapping in my stomach which involved bloating,pain,gas and pretty much very little emptying. GI doc was talking about sending me to another surgeon for gastric tube when a local surgeon was consulted and suggested a pyloraplasty.
This was a godsend! Since the stomach no longer worked they pretty much cut the muscle at the bottom of the stomach to loosen it so I’ve got pretty much a straight pipe from my mouth to my upper intestine. worked pretty good so far but there are some issues arising now (as yet to be determined) that may have to be addressed. May need another pyloraplasty to open it somemore.
Hi Jim,
I hardly ever check in on CarePlace, just every once in a while. I read your post and am glad the pyloroplasty does the trick in you!
My story has changed quite a bit, I decided not to go for the German TSE surgery, but I am going to have my -ectomy done somewhere March/April. The Dutch surgeons thinks it’s my best option and so do I. The TSE myotomy is much too risky for me, so my plans have completely altered. I guess you already learned that from my posts on the Yahoo site, but just wanted to let you know to be sure.
If you want to know more about my choice, just let me know, I can give you more details, it’s been a hard time for me this past year.
Love,
Isabella
Hi,
I have been having stomach problems since 1989, I had to have a hiatal hernia hernia repair due the fact my pyloric vaulve was ripped due to all the throwing up I was doing. They replaced it with a piece of my small intestine.
It helped with the throwing up but I was still having trouble with the swollowing and the emptying of my stomach…Just like a lot of the others I have a horrible time with nausea and my food going down and it takes forever. Like everyone else I can tell you when I used to be able to eat I could feel when I took a bite and where it was in my esophugus all the way thru the pyloric valuve.
It took several years then I had my first dilation and it seemed to help it go through pyloric vaulve. But of course it did’nt help with the swollowing. It took years and going to the Mayo Clinic in Minnesoto before I found out I had achalasia and dysphagia…they also leaned towards P.S.; I have had so many dilations and other procedures I can’t count. One thing I did find out that my pyloric vaulve only closes about 60% so I take reglan which helps for the nausea however, I can’t eat anything to speak of without getting sick and having severe stomach pain. I also have gastroperesis(YEA, ANOTHER STOMACH ISSUE) they said fixing my vaulve would help but, they are afraid to do anymore SX on my abdomen. They are afraid of more complications…I am 5"8 and weigh 110 lbs and wear a size 3/4 its getting a little scary. The last time I had I.V. feedings I was in the hospital and then they sent me home with the I.V. I developed a blood clot which almost killed me it was almost in my brain… So I don’t get real thrilled when they mention that if I lose anymore weight it will either be a feeding tube or the risky blood clot I.V.
They have mentioned P.S. but, I don’t know what to believe or not to believe…I am also tired of being nauseated,tired,throwing up and not being able to eat!!!Along with my RSD,RLS,KNEE REPLACEMENT,DEPRESSION AND ANXIETY. My prayer is for all of us is to get to live some kinda normal life. I would like to hear how everyone is doing! Please keep in touch and GOD BLESS YOU Kris
Indeed, they are looking into stem cell transplant. But that’s something they have been doing for quite some time already and something they will be doing for a long long time to go.
If you need treatment, you better don’t wait or set hopes on this just jet…
Love,
Isabella
Heard that their doing stem cell research on achalasia