Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 I am only 33 and had a transhiatial esophagectomy in 2000. It is a very tough surgery to get through. Eating and swallowing is not normal at all after surgery. I have been suffering from severe dumping syndrome since my surgery, I have lost over 90 pounds and am deficent in 5 vitamins and minerals. My stomach, which is pulled up into my chest, is not working like a stomach should, the surgeons cut the nerve that controls stomach digestion so there is no stomach peristalsis or acid production at all. My GI doctor is at wits end and does not know what to do. I have an appointment with a nutritionist today to see if a change in diet can help, nothing has helped so far. There has been talk about possibly putting back in the feeding tube to supplement what I am eating. I am still working and getting on with daily life, trying not to exert myself, trying not to skip meals, when I do eat, I sit close to the bathroom in case I need to vomit or have diarrhea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Barbara, This is the history of my lfe with achalasia and what led to the esophagectomy. These were the major events. I was diagnosed with severe swallowing problems at age 14. (I am 68 now) I missed a year of school and lost some 40 pounds. There were no treatments at time (1947) so I learned to live as best I could with the disease. I never heard the word achalasia until 1976 when I ended up in an emergency room with severe pain that had continued for about 14 hours. It was then that a GI Dr. used the term achalasia and said that I did not have to live like this and suggested the Heller Myotomy, which I had they also did the wrap. 14 months later they had to undo the wrap as it began to cause more problems than I had prior to surgery. After this surgery I was pretty much back to where I was before the myotomy. So began the long period of dilatations. In 1989 I was transferred to Kansas City and referred to a GI Dr. at Kansas University Medical Center. After early examinations I was told that my esophagus had stretched to about 2-1/2 times the size of my stomach. I could hold a whole meal in my esophagus, the plus to this is that I could eat in a restaurant and wait until I arrived home to empty it out. At any rate the prognosis for me was not good as the esophagus had begun to collapse in on itself, pain returned which seemed to be aggravated by stress and I was told that this condition was a breeding ground for esophageal cancer. In 1993 losing weight again (30lbs) I along with my DRs. GI and surgeon decided on the esophagectomy with gastric pull up. I was 17 days in the hospital 9 of those in intensive care. That was 8 years ago and while 5 of those years were tough because scar tissue had formed at the surgical sight swallowing was about as bad as it had ever been. Some Doc's were even talking surgery again and I said absolutely not. So I began the dilatations again there didn't seem to be any change until I insisted that they try a larger balloon to see if they could break lose the scar tissue which had formed a web like structure at the surgical site. They agreed to this as long as I understood the very good possibility of a perforation. I agreed to this and yes a perforation did occur, while at the time I thought there was no where to go from here. However the scar tissue was about 80 percent removed and did not appear to be growing back. So here I am a age 68 finally able to eat about anything, I have gained weight my overall health has improved. I have to eat several small meals a day because I don't have the capacity of a normal esophagus and stomach. I will always have the reflux problem but I can live with that. As I look back I don't know what I would have done differently. Well my response to you question has gone on and on, but I didn't think I could answer without giving you some background. I guess the point I was trying to make regarding age and time of diagnosis for me was 46 years to esophagectomy. Perhaps if there had been treatment in the first stages things might have worked out differently. If there is anything else you would like to know I would be glad to try and answer. Best regards. Fitzgerald P.S. I did not relate in my previous post that I was tentatively scheduled to see Dr. Boyce regarding placing a stent to keep the stricture open permanently. However in discussions with my Dr. this was in the experimental stage and apparently they had problems with the stent migrating. Things began to turn around after the perforation so I did not pursue this further. Esophagectomy Hi Ed:I am most interested in your esophagectomy. I have had Achalasia for many,many years and have had 2 surgeries. The last one a myotomy in Feb. 2000.I am again having swallowing problems and am in the process of getting intouch with my doctor, Dr. Boyce, at the Center for Swallowing Diseases inTampa. Looking forward to your reply.Barbara in Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Ed, Thanks for the detailed info on your esophagectomy. I noted in your ps you are scheduled to see Dr. Boyce. I have been going to him since l994 and he saved my life at that time. Am trying to get appointment with him now as my swallowing problems have again returned since my Myotomy 2000. Thanks again for the info. Barbara in Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Hi there, so sorry for all the problems you are going through. Is the esophagus stretching due to the achalasia being so bad? Is that why they have to remove the esophagus.? Sorry for all the questions I also would like the name of the doctor that you saw at the Cleveland clinic, and if you liked him. and now the surgeon that is going to do the surgery the 25th. Looks like I maybe heading to CC coming up also thanks so much write me at home.. rojakort@... janers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 In message <002801c210cb$bff4eb60$31158fd1@...>, Janers <rojakort@...> writes >Hi there, > >so sorry for all the problems you are going through. Ditto > >Is the esophagus stretching due to the achalasia being so bad? Is that >why they have to remove the esophagus.? >Sorry for all the questions > This is a question I'd like answered - I know my esophagus is badly stretched - but - if you're coping with the symptoms (as I am) - why does it need to be removed? Is the stretching dangerous in some way - or do the docs just like to have a fiddle around? If anyone has the answer - I'd like to hear it. Cheers Kev -- *********************************************************************** I am a phagocyte in the the bloodstream of the body politic *********************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Kev, One of the things I was told was that when the esophagus stretches to far it starts to collapse in on itself and when that happens things really begin to shut down. Mine had begun to do just that so I opted for the esophagectomy. Ed Re: Esophagectomy > In message <002801c210cb$bff4eb60$31158fd1@...>, Janers > <rojakort@...> writes > >Hi there, > > > >so sorry for all the problems you are going through. > > Ditto > > > > >Is the esophagus stretching due to the achalasia being so bad? Is that > >why they have to remove the esophagus.? > >Sorry for all the questions > > > > This is a question I'd like answered - I know my esophagus is badly > stretched - but - if you're coping with the symptoms (as I am) - why > does it need to be removed? Is the stretching dangerous in some way - or > do the docs just like to have a fiddle around? > > If anyone has the answer - I'd like to hear it. > > Cheers > > Kev > -- > *********************************************************************** > I am a phagocyte in the the bloodstream of the body politic > *********************************************************************** > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi. If the esophagus is removed, what on earth is put in it's place??? Can you ever eat normally again? I am so, so sorry to hear that you have to go through something so severe. I have been told by a doctor that I may have to have the lower half of my esophagus removed. I am getting a second opinion tomorrow. I do not know how many centimeters my esophagus is, but I do know that it is also very stretched out. I hope you are O.K. -Kari --- krcook1 <kcook1@...> wrote: > I joined this group about a month ago, but I haven't > posted anything > until now. I didn't realize that so many other > people were suffering > from the same condition that I am. I was diagnosed > with Achalasia in > 1985 when I was 22 years old. At that time it seems > as though not > very much was known about the disease. When > pheumatic dilitation > didn't work, the only option left was surgery, which > I decided > against. I learned how to deal with the symptoms and > was doing ok. I > went back to the doctors in 1996. We tried 2 more > dilitations and > also tried botox, neither worked. At that time I > changed jobs which > forced me to change to a different medical > insurance. I had a year > waiting period since the " A " was considered a > pre-existing condition. > This wasn't too much of a problem, I was still > dealing ok with the > symptoms. Last month, I was surfing the web and > wound up on the > Cleveland Clinic site. I made an appointment with > the > Gastroenterology Department. The doctor managed to > get me in for an > upper GI that day. I'm told that a normal esophagus > is 3 to 4 > centimeters in diameter. Mine has stretched to 12 > centimeters. The > only option is to remove my esophagus. I'm scheduled > for surgery June > 25. Does any have any experience or information on > this type of > surgery. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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