Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 - I am so frustrated for you. If I understand you correctly, they are going to give you motility drugs - but - your upper digestive system has NO MOTILITY!! What is up with that?? they can't dilate the narrowed area? I don't know if you remember, but after my ectomy I had to have a load of dilations done to clear the scar tissue. My surgeon even scraped scar tissue to remove it and I'm now open and clear and can eat most anything. I dilation not an option for this narrowed area? I hope, as always, that you find some kind of answers soon. ~ in NC > > Hi everyone > Went to Liverpool yesterday and the news is that the narrowing in my throat was ok on the Barium but and a big but it showed a severe narrowing in the bottom with a holdup in my new e (which is my stomach made into a tube after the ectomy). Classic birdsbeak they said, typical of Achalasia. They want me to try various medications to speed up the transition of food through that narrowing as the food is collecting in my stomach in the chest and like everyone elso who has Achalasia problems i have to empty my stomach tube before bed or i get severe reflux during the night. You see i still have reflux problems with the acid and the Barium clearly showed a narrowing. My question to anyone including the doctors is this: How can i still have Achalasia in the bottom of my stomach tube if i have had the ectomy done now what i mean? Puzzling. I go back to see them in 4 months they said as they want to give any change of medication a chance to work. Huh! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 Hi Yes it seems that i have to try different motility drugs to begine with but they said that is just the start and that there more options open to me. But they also said that they have to proceed carefully because of the scar tissue. Whether a dilatation of the narroed area is an option will be discussed next time in clinic along with any options for further surgery maybe? I don't know what can happen next but i am willing to try anything even surgery to scrape the scar tissue away. To go back and be able to enjoy even a small meal would be great because right now everything that i swallow even liquid seems to stick in my chest and it hurts so much that sometimes i say to myself that if i don't eat i won't get any pain but of course i must eat even though i have a jejunostomy tube i must eat. The surgeon said that if i can eat more then i can have the jejun tube out for ever but i must eat and they will do what they can to help. Seems that i am back to square one and if i hadn't had the ectomy then that is where i would be back to pre-ectomy. Bummer. from the UK From: zlmmom1 <mcnairmichelle@...> achalasia Sent: Tuesday, July 5, 2011 2:08 PM Subject: Re: Barium Swallow results  - I am so frustrated for you. If I understand you correctly, they are going to give you motility drugs - but - your upper digestive system has NO MOTILITY!! What is up with that?? they can't dilate the narrowed area? I don't know if you remember, but after my ectomy I had to have a load of dilations done to clear the scar tissue. My surgeon even scraped scar tissue to remove it and I'm now open and clear and can eat most anything. I dilation not an option for this narrowed area? I hope, as always, that you find some kind of answers soon. ~ in NC > > Hi everyone > Went to Liverpool yesterday and the news is that the narrowing in my throat was ok on the Barium but and a big but it showed a severe narrowing in the bottom with a holdup in my new e (which is my stomach made into a tube after the ectomy). Classic birdsbeak they said, typical of Achalasia. They want me to try various medications to speed up the transition of food through that narrowing as the food is collecting in my stomach in the chest and like everyone elso who has Achalasia problems i have to empty my stomach tube before bed or i get severe reflux during the night. You see i still have reflux problems with the acid and the Barium clearly showed a narrowing. My question to anyone including the doctors is this: How can i still have Achalasia in the bottom of my stomach tube if i have had the ectomy done now what i mean? Puzzling. I go back to see them in 4 months they said as they want to give any change of medication a chance to work. Huh! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 How frustrating ! Change of medication better not be Reglan! If they want to speed up the food going through . . . don't they know the medications speed it up all the way through!!! Graphic but true. I sure agree with the " Huh " What medications are you trying now? How is your weight? Hi everyone Went to Liverpool yesterday and the news is that the narrowing in my throat was ok on the Barium but and a big but it showed a severe narrowing in the bottom with a holdup in my new e (which is my stomach made into a tube after the ectomy). Classic birdsbeak they said, typical of Achalasia. They want me to try various medications to speed up the transition of food through that narrowing as the food is collecting in my stomach in the chest and like everyone elso who has Achalasia problems i have to empty my stomach tube before bed or i get severe reflux during the night. You see i still have reflux problems with the acid and the Barium clearly showed a narrowing. My question to anyone including the doctors is this: How can i still have Achalasia in the bottom of my stomach tube if i have had the ectomy done now what i mean? Puzzling. I go back to see them in 4 months they said as they want to give any change of medication a chance to work. Huh! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 Hi You guessed it right, i am on Reglan now also Nexium for the acid. They also want me to double the dose of Reglan from 10mg to 20mg at least twice a day or try Domperidone for a while and see how things go. They once tried to double the dose of Reglan and you can guess what happened. Neeless to say the dose was reduced back to 10mg quickly. from the UK From: <_40@...> " achalasia " <achalasia > Sent: Tuesday, July 5, 2011 2:58 PM Subject: RE: Barium Swallow results How frustrating ! Change of medication better not be Reglan! If they want to speed up the food going through . . . don't they know the medications speed it up all the way through!!! Graphic but true. I sure agree with the " Huh " What medications are you trying now? How is your weight? Hi everyone Went to Liverpool yesterday and the news is that the narrowing in my throat was ok on the Barium but and a big but it showed a severe narrowing in the bottom with a holdup in my new e (which is my stomach made into a tube after the ectomy). Classic birdsbeak they said, typical of Achalasia. They want me to try various medications to speed up the transition of food through that narrowing as the food is collecting in my stomach in the chest and like everyone elso who has Achalasia problems i have to empty my stomach tube before bed or i get severe reflux during the night. You see i still have reflux problems with the acid and the Barium clearly showed a narrowing. My question to anyone including the doctors is this: How can i still have Achalasia in the bottom of my stomach tube if i have had the ectomy done now what i mean? Puzzling. I go back to see them in 4 months they said as they want to give any change of medication a chance to work. Huh! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2011 Report Share Posted July 7, 2011 wrote: > > How can i still have Achalasia in the bottom of my stomach tube if i > have had the ectomy done now what i mean? > Achalasia is sometime a cause of stenosis and sometimes the words are used interchangeably though that is not accurate. I don't think that is the issue here though. There are other types of achalasia besides cardiochalasia, which is what most of us have. Other sphincters in the body, besides the cardiac sphincter, (we call it the LES), can have achalasia. Those are different disorders and generally don't have anything to do with our achalasia. You apparently have a problem with the pyloric sphincter which could also be called achalasia. The action of these sphincters is a part of gut motility. Inaction would be dysmotility. Drugs are sometimes used to help this " motility " . notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2011 Report Share Posted July 7, 2011 Hello Notan your post makes a lot of sense to me. As i have told the surgeon i will try the motility drugs 1st before my next appointment in November. I have already been on Metoclopremide or Reglan as it is know in the USA for some years now and have been offered Domperidone as an alternative. I have tryed Domperidone before and only had an effectiveness that lasted a couple of weeks before that wore off, but i will try it again. I will also speak to someone from The Oesophageal Patients Association here in the UK (although if the problem is the Pyloric Sphincter i don't know if it will be worth the effore of calling them). Can i ask you something Notan? If my stomach was made into a tube during the ectomy and the surgeon (who did the ectomy) told me afterwards that anything that i swallow should fall straight through, does that mean that he did something to the pyloric sphincter during the op? If so would further surgery give me success or would only the dilatation work here? I am in the dark as to what can be done and i would like to investigate all this prior to my next appointment. you see they told me in clinic on monday that should the problem of food not getting down get worse along with the reflux back up my throat that i should get in touch with his secretary and arrange an earlier appointment to see him but i want to give the motility drugs a chance 1st. Can you give me any advice as to what can happen next?? Please? from the UK From: notan ostrich <notan_ostrich@...> achalasia Sent: Thursday, July 7, 2011 7:14 PM Subject: Re: Barium Swallow results  wrote: > > How can i still have Achalasia in the bottom of my stomach tube if i > have had the ectomy done now what i mean? > Achalasia is sometime a cause of stenosis and sometimes the words are used interchangeably though that is not accurate. I don't think that is the issue here though. There are other types of achalasia besides cardiochalasia, which is what most of us have. Other sphincters in the body, besides the cardiac sphincter, (we call it the LES), can have achalasia. Those are different disorders and generally don't have anything to do with our achalasia. You apparently have a problem with the pyloric sphincter which could also be called achalasia. The action of these sphincters is a part of gut motility. Inaction would be dysmotility. Drugs are sometimes used to help this " motility " . notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2011 Report Share Posted July 7, 2011 wrote: > > ... the surgeon (who did the ectomy) told me afterwards that anything > that i swallow should fall straight through, does that mean that he > did something to the pyloric sphincter during the op? > I don't know what he meant. I guess he meant that food should move right to the bottom of the stomach and then stay there and be slowly released to the intestines. You wouldn't want it to just completely fall through without giving the stomach time to do what it should to digest and absorb some of it. Falling completely through would be dumping. Of course you don't want it to stay there too long either. > If so would further surgery give me success or would only the > dilatation work here? > They do surgery, dilation, Botox and more for opening the pyloric sphincter. They may be able to do a redo surgery if one was done before, but I think that would depend on why the other surgery is no longer working and if other means could provide as much benefit. You and I would only be guessing at those things. > ... Can you give me any advice as to what can happen next? > I don't know what the nature of the problem is with your gastric tube so I really don't know what would be next. We are working with assumptions of what your doctors mean when they say " through " , " achalasia " and " motility " and guessing at what the surgeon may have done in the past. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 , I am sure Notan can reply with much better info but this might help. I think many of us that have had an ectomy also had a pyloroplasty as part of the gastric pull-up. Here is a thread from several years ago that gives info about why pyloroplasty is done in conjunction with esophagectomy. Basically it is done to ensure delayed gastric empting does not occur after an ectomy and gastric pull-up. achalasia/message/46067 Of course some surgeons don't agree with this and prefer not to do pyloroplasty as it can often be the main cause for dumping syndrome and sometimes bile reflux. I thought I recalled in an earlier post you stated you did not have a plyoroplasty with your ectomy. Sorry maybe I am wrong. I guess even if you did there are pyloric issues. It is possible to do balloon dilatation of the pylorus for delayed gastric emptying after esophagectomy http://ejcts.ctsnetjournals.org/cgi/content/full/33/6/1105 also Patients with delayed gastric emptying often responded well to endoscopic pyloric dilation or Botox injection http://www.ncbi.nlm.nih.gov/pubmed/21105628 I am sure if you get to the point where dilation does not work that they could go back in and do a minimally invasive pyloroplasty as a permanently fix if they had not previously done this during your ectomy. http://affective.com/news/minimally-invasive-pyloroplasty http://www.nlm.nih.gov/medlineplus/ency/article/002922.htm You may want to clarify with your ectomy surgeon exactly what they did at that time of your surgery just so you have a clear history of what has been done. Hoping you find a course of treatment that helps you soon. Really sorry you have to go through this after going through the ectomy already. Must be very frustrating. -Jeff > > > > How can i still have Achalasia in the bottom of my stomach tube if i > > have had the ectomy done now what i mean? > > > > Achalasia is sometime a cause of stenosis and sometimes the words are > used interchangeably though that is not accurate. I don't think that is > the issue here though. There are other types of achalasia besides > cardiochalasia, which is what most of us have. Other sphincters in the > body, besides the cardiac sphincter, (we call it the LES), can have > achalasia. Those are different disorders and generally don't have > anything to do with our achalasia. You apparently have a problem with > the pyloric sphincter which could also be called achalasia. The action > of these sphincters is a part of gut motility. Inaction would be > dysmotility. Drugs are sometimes used to help this " motility " . > > notan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 Thank you Notan. The nature of my problem is that food and drink seem to stay in the bottom of my stomach tube far too long. This show'd up on the Barium as would you believe classic birdsbeak narrowing at the bottom of the tomach tube. Because of this i have problems with reflux coming back up my throat and burning my mouth because the reflux cannot get through the bottom of the stomach. That is why i am asking you all the questions as you are very knowledgable about Achalasia. Could i have Achalasia of the Pyloric Sphincter do you think? from the UK From: notan ostrich <notan_ostrich@...> achalasia Sent: Friday, July 8, 2011 6:15 AM Subject: Re: Barium Swallow results  wrote: > > ... the surgeon (who did the ectomy) told me afterwards that anything > that i swallow should fall straight through, does that mean that he > did something to the pyloric sphincter during the op? > I don't know what he meant. I guess he meant that food should move right to the bottom of the stomach and then stay there and be slowly released to the intestines. You wouldn't want it to just completely fall through without giving the stomach time to do what it should to digest and absorb some of it. Falling completely through would be dumping. Of course you don't want it to stay there too long either. > If so would further surgery give me success or would only the > dilatation work here? > They do surgery, dilation, Botox and more for opening the pyloric sphincter. They may be able to do a redo surgery if one was done before, but I think that would depend on why the other surgery is no longer working and if other means could provide as much benefit. You and I would only be guessing at those things. > ... Can you give me any advice as to what can happen next? > I don't know what the nature of the problem is with your gastric tube so I really don't know what would be next. We are working with assumptions of what your doctors mean when they say " through " , " achalasia " and " motility " and guessing at what the surgeon may have done in the past. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 Jeff, Thank you for replying to the post. I am no longer in contact with the surgeon who did my ectomy and it is a different surgeon who is looking after me now so i don & #39;t know how i can get the info on whether he did the pylorplasty at time of the ectomy so it is difficult for me to find out. All that i know is that there is a severe problem with my stomach tube emptying and when i eat it feels like there is a large ball in my chest and is painfull. That is why i am seeking help with a surgeon who could help me and if i need further surgery this surgeon has already told me that he will referre me bak to the thoracic surgeon who did the ectomy. ________________________________ From: jp_shaw1 & lt;jp_shaw1@... & gt; achalasia Sent: Friday, July 8, 2011 7:16 AM Subject: Re: Barium Swallow results  , I am sure Notan can reply with much better info but this might help. I think many of us that have had an ectomy also had a pyloroplasty as part of the gastric pull-up. Here is a thread from several years ago that gives info about why pyloroplasty is done in conjunction with esophagectomy. Basically it is done to ensure delayed gastric empting does not occur after an ectomy and gastric pull-up. achalasia/message/46067 Of course some surgeons don & #39;t agree with this and prefer not to do pyloroplasty as it can often be the main cause for dumping syndrome and sometimes bile reflux. I thought I recalled in an earlier post you stated you did not have a plyoroplasty with your ectomy. Sorry maybe I am wrong. I guess even if you did there are pyloric issues. It is possible to do balloon dilatation of the pylorus for delayed gastric emptying after esophagectomy http://ejcts.ctsnetjournals.org/cgi/content/full/33/6/1105 also Patients with delayed gastric emptying often responded well to endoscopic pyloric dilation or Botox injection http://www.ncbi.nlm.nih.gov/pubmed/21105628 I am sure if you get to the point where dilation does not work that they could go back in and do a minimally invasive pyloroplasty as a permanently fix if they had not previously done this during your ectomy. http://affective.com/news/minimally-invasive-pyloroplasty http://www.nlm.nih.gov/medlineplus/ency/article/002922.htm You may want to clarify with your ectomy surgeon exactly what they did at that time of your surgery just so you have a clear history of what has been done. Hoping you find a course of treatment that helps you soon. Really sorry you have to go through this after going through the ectomy already. Must be very frustrating. -Jeff & gt; & gt; & gt; & gt; How can i still have Achalasia in the bottom of my stomach tube if i & gt; & gt; have had the ectomy done now what i mean? & gt; & gt; & gt; & gt; Achalasia is sometime a cause of stenosis and sometimes the words are & gt; used interchangeably though that is not accurate. I don & #39;t think that is & gt; the issue here though. There are other types of achalasia besides & gt; cardiochalasia, which is what most of us have. Other sphincters in the & gt; body, besides the cardiac sphincter, (we call it the LES), can have & gt; achalasia. Those are different disorders and generally don & #39;t have & gt; anything to do with our achalasia. You apparently have a problem with & gt; the pyloric sphincter which could also be called achalasia. The action & gt; of these sphincters is a part of gut motility. Inaction would be & gt; dysmotility. Drugs are sometimes used to help this & quot;motility & quot;. & gt; & gt; notan & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2011 Report Share Posted December 2, 2011 > > Yes Lynn... Before my diagnosis I had an endoscopy, barium swallow, ct scan and finally the dreaded menometry! > > Sent from my iPhone Ohhh...I am dreading the manometry! I'm sure it is coming soon! Lynn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2011 Report Share Posted December 2, 2011 I said I would give birth to anther baby before I did that test again, lol! And ironically I have to have that test done this Tuesday! Keep us posted k? California Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2011 Report Share Posted December 2, 2011 Lynn wrote: > > ... Did anyone's dr. also order a ct scan? ... > When you were scoped the doctor may have done a biopsy. It is pretty much standard in these cases to do that, especially if the passage of the scope into stomach had more resistance than it should have and more so if symptoms progressed quickly. The results of that biopsy, if done, would either encourage or discourage a CT. A CT can equal hundreds of chest X-rays but it has to be considered with other findings. If there is good reason to have one, meaning there is enough risk that there is something they need to look for, then it would be good to have one, but if the doctor is being overly cautious then that much X-ray exposure is something to consider too. I have had at least four CTs but I would rather have had none. At least I don't yet glow in the dark. If you do need something consider if an MRI will do just as well, if it can be approved by your insurance. An MRI machine is not an X-ray device. There isn't really a right or wrong answer to this. Some doctors and patients are more cautious about the risk that there may already be cancer while others are more cautious about the risk of X-rays. Either CT or MRI is like fishing with a big net. You can get a lot more than the one fish you are after. Our bodies tend to grow all kind of funny little things. On the outside these are easy to identify as warts, moles, cysts, skin tags and what have you. On the inside it can be hard to know what they are and even though many are harmless like those skin blemishes, they still need to follow-up on them to see if they are or not. Follow-up may mean more CTs, MRIs, X-rays or other tests. On the bright side, after everything is taken care you have you have a good idea that things are pretty good in that part of the body. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2011 Report Share Posted December 3, 2011 Hi Lynn, it's my husband who has achalasia. Symptoms began last June and he went to our family dr, who ordered meds, then a CT scan and ultrasound when meds didn't work. Her final diagnosis was " dirty colon, " for which she prescribed stool softeners. Not being satisfied with that diagnosis, we asked for a referral (another 10 days). The GI had a cancellation and got him in within a couple weeks. Based on husband's symptoms, he felt it was achalasia and immediately ordered a scope. I asked him why our family dr would have started with a CT scan. He said he would have started with the scope but that the CT scan was helpful in ruling out masses and such. After the scope, he had the manometry at a hospital a hundred miles away, which husband surprisingly did very well with and 10 more days until finally a confirmed diagnosis! He was then referred to the surgeon, who ordered the barium swallow. Surgery was on Nov. 21st and he is thriving. He's gained 10 pounds so far! Food is going down and staying down. > > Hi all. I received my report from the Barium Swallow today. Impressions are persistent area of narrowing seen at the gastoesophageal junction, highly suspicious for achalasia. There was also mild tertiary contractions within the distal esophagus. The ENT ordered the test. He had me call my GI's office to see what the next step is. I left a message and probably will not hear back from them until Monday. I believe I am getting closer to a diagnosis. When I let my mind wander I still worry that they missed a tumor or that something other than achalasia is causing the symptoms but with a clean endoscopy report in October, the odds are in my favor that it is not something horrible. Did anyone's dr. also order a ct scan? I am thankful for the information and support here!! Thank you for being so open and willing to share and to help me keep it all in perspective. Lynn > Quote Link to comment Share on other sites More sharing options...
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