Achalasia Member Introductions

Pain, all the BS treatments–only a esophagectomy/LES removal/stomach reconstruction left.

AND THAT DECISION TO DO/NOT DO IT IS MINE!!!

I have had this condition for mostof my life and still do not have it under controll.

Had Achalasia for 10 years. Had the heller two years ago. It was great but i put on 9 kilograms! Lately though it’s returned and just yesterday I had to pull over my car to throw up after eating just a few jelly babies…

Interested in this condition because I suffer from it and would like to hear of other people’s experiences and share support.

Have had A for many years, had an open, thoracic myotomy and pyloroplasty in Dec/05 in Toronto, complete success, just want to keep up to date in case I have issues sometime down the road.

I have just been diagnosed with Achalasia and have severe GI symptoms. I also have several autoimmune diseases that affect my GI system. I am looking for people to talk to that also have this condition and have other GI issues

Hi,
I’m 39 years old and have been living with my condition for about 6 years. At this point I don’t even know if I can say I suffer from Achalasia, however I do have trouble swallowing and my GI has done 3 dilatations and I am scheduled for a fourth this Friday. He is also sending me to Shands Hospital in Gainsville Florida. He has done all the normal test and all but the motility came out ok the motillity test shows esophageal spasms. We have tried the drugs and the dilatations only work for a short period of time. I am beginning to feel defeated and need support and information.
Blessed Be,
Janine

hi, im teri, i have achalasia, gerd, an esophageal ulcer, gastroporesis, & constipation. was with a GI that put me on meds that only made things worse. now with a family practice homeopath that has me on a number of suppliments that have started to help, but !!!

Hey, it’s Kim in KS. Only I moved to South Carolina for a couple years, but I’m back in Kansas again.

I had a relatively short time between symptoms, diagnosis, and surgery. I started feeling terrible in the summer of 2004. Went to the doc, he sent me to get a barium swallow, and the radiologist tech knew what it was right away! Lucky me!! They referred me to Dr Moncure at the University of Missouri, Kansas City, Hospital. I had my surgery in December of 2004.

I’ve been mostly great since then. A few sticks here and there (mostly with bread, bagels, or dry sandwiches), but nothing major. Certainly not complaining, as life before my myotomy was horrible. I’ll take a few sticks!

Anyway, I’m here, checking out this Careplace idea. wave

Kim in KS

Hello I have been member of the yahoo group for sometime but stopped going to site and retreating into my self . I have had the heller to many dialations to count and many sleepless nights. I know this is a diease i will have for the rest of my life but i am so tired of not getting any help from doctors here they do a dialation send me home and usually less then a month later the problem is back . I am going on day 7 of no solid food. I choak on everything so i have tried to thin out ensure and it still comes back up or i have to flush it down with lots of water and it hurts as most of you know . Well thats my daily life in the nutshell any ideas on good doctor in Ontario Canada would be great thanks Keep smiling Penny

My husband had a Heller Mytomy by a very prominent doctor back in March of 2007. It’s been less than 6 months and he is beginning to have difficulties again. Has anyone else experienced a “failure” of the HM? Just curious and would like to know if anyone else is in the same boat… We’re back to the choking… and I’m so sad…

Hi, the only problem i find is a feeling of being full all the time… I have to drink whilst eating and sometimes i have to stand up to eat but thats not really a problem as i am usually running around after my son during meal times

do you have any problems since having E removed . LIke after eating breaking out in cold sweats or rapid pulse. had dumping symdrome but found that after eating if i lie down for about 15 min. helps. also i don’t drink anything with meal.

Hi all my name is Jan i am 46 a single parent of 3 children aged 26, 24 and 6 I have been living with this disease for 4 years. I have had a hellers myotomy and then i had my E removed 2 years ago.

Its nice to know that i am not the only one to have this horrible disease.
Jan

Hello Jan,

I had my heller myotomy 3 years ago and it seems like the symptoms are coming back though they tell me it happens in 10 of people only. I developed an esophagus ulcer last year and they told me if it does not get better I have to have my esophagus removed as well.

They put me on a lot of protonix, nexium dosage and the ulcer is gone. I found Nexium to be really helpful but insurance does not pay for it. What was the reason for removal of your esophagus? was you achalasia coming back? was your esophagus getting larger?how do you live without it? sinc the heller myotomy the top of the stomach is open as well and without the esophagus it is sort of directly connected to your throat?

I am father of 3, 48 years old and they tell me this disease is so rare there is not much research for a cure for it, just surgery which in my case I think I should have just gone with the balloon treatment since surgery was the reason for the ulcer and possibility of esophagus removal.

Thanks
Kamran

Hi,

The reason for my E to be removed was that it became so stretched that is was of no further use to me. My stomach now has been stretched up to meet my throat and therefore my stomach is only the size of an orange and i have to eat small meals but more often. I get a lot of reflux but i seem to handle that ok.

Im sorry to hear of your problem but i was told that as far as they know there is no cure for Achalasia.

I am in the UK and a single parent to ill to work so therefore i dont have to pay for my prescriptions or treatment. But i do sympathize with you.

Jan

Hi all!
New kid on the block, just upgraded my old Yahoo account and wanted to re-join the Achalasia Group. I’ve been diagnosed with Achalasia in late 1999 and am going back to my specialist for a check-up, it’s been since 2004 since I’ve last seen him. I’ve had 3 dilatations, but nothing else major…yet. Just weighing out my options.

I am a 33 yr old father of 2, an Art Director at a local publication house and live in Wisconsin.

Thanks for letting me join,
Best Regards,
EroblesJr

Hi I’ve just joined. I am a sufferer of Achalasia for about 5yrs now, but still don’t know much about the condition. I am here because I’d like to know more. please feel free to leave me a message.

New here, Hello everyone!!!

I had a heller myotomy and a nissen fudiplication (wrap) 2 years ago. Unfortunately for me the idiot cut both vagus nerves so my stomach no longer moves. I then had a pyloraplasty done so my tummy would empty and was mostly fine until about a month ago when the hiccups and occasional food stoppage began again. G

oing to see my GI today, guessing that I’ll have to go through the mynometry tests again (damn) which I hate. I told my doc that this was a real rare condition and he said it’s not as rare as people think in his opinion, just under diagnosed. Unfortunately since I live in the sticks in upper MT there aren’t a lot of docs with experience in this condition and none who do repairs.

I guess I’ll have to decide to do the myotomy again or something else…

What pains me the most out of all of this is the thought of the childeren and teens I’m seeing on these forums that are cursed with this… I’m 48 and it’s been hell on me but to have this happen to kids??? I sure hope that it’s not passed down, I’d hate to see my son go through this.

Oh well, enough with the downers… It’s almost christmas!!! Hoping all can enjoy the season and then we can get back to normal programming.

Do NOT go to someone without a load of experience. Nissen fundo’s are NOT being used anymore - I know this because I had one in 1989 and I’m heading up to Pittsburgh in 22 days for an esophagectomy.

I don’t know of any doctors out in MT but there is the Cleveland Clinic in OH and there are some really good, experienced docs in Seattle, Wash. It will be worth the time, effort and money to travel to someone good.

If I had known any better (back before the internet) I would have gone to someone with experience the first time and maybe not be looking at an -ectomy now.

Good luck!
-Michelle in NC