im scared nobody to talk to :( achalasia

Hello guest99. I don't have your problem but have a very good friend who has.

He had a repair to his oesophagus (not sure of spelling) when he was 27.His operation was filmed by the NHS as it was a first at the time for training purposes. Since then he's had lots of ups and downs, treatment, endoscophys and a couple of further operations at the hospital. He is now 66 and still going strong.

He lives on a restricted diet, takes regular medication and has learned to deal with all the problems this horrible condition brings.

I just wanted to say go back to your doctor and explain how you feel and what is happening to you.

You should not be left to struggle on your own.

I am sure that there is a charity site for people with your problem, look it up on the internet and log in. There will be people there who you will be able to talk to and share their experiences with.

This will help you to feel that you are not alone, I know it's hard as people are not always kind and do not understand chronic conditions that we all have to live with.

Try and think positive and live as normal a life as possble, try not to let depression take you over but if it does then please get appropriate help.

It is still early days after the surgery, please go back to your gp. Good luck.

hello fanny jane thank u for ur reply....i feel so happy to hear sum1 still can survive until 66

i was hope i was strong n brave enough to fight this sickness n think positive all the time... i was so worried about my sickness because it uncommon sickness n very hard to find..i will try to google other website about achalasia...so far this forum has all the informations i guess..i was so worried about my sickness until now i cant sleep properly at night thinking about it 24/7 ...i feel so relieve that u reply my post.thank u,may god bless u.have a nice day.

Hello, nice to hear from you.

So glad I was able to at least reassure you. My friend has every intention of living to 100 I can assure you, so he still has a lot of living to do.

I hope you manage to go back to the doc and have a chat about it all soon and hopefully be in touch with people in the same position as you.

When I can't sleep I slowly count back from 300...in my head not out loud. The brain gets fed up doing this and often you fall asleep. Or try and imagine a scene like walking along a beach (my favourite) walking through a wood or even swimming in a lake, it is possible with practice to do this and after a while your brain recognises that this is a switch to help you to sleep. It really works but does take practice.

Take it from someone who's been around a long time, everything passes. If you feel yourself getting het up try slow breathing. This automatically slows your whole being down and you then feel calmer.

Try and be kind to yourself, listen to music or do something that makes you feel better. Something you enjoy to take your mind of it all for a while.

I have had a lifetime of pain and disability and am amazed that I'm still here, when I was 25 I would have thought I'd never get to be old... and here I am getting there. I also now want to make 100 and am aiming for it even if I don't get there.

There are a lot of caring people out there that will be able to help once you contact them. Sitting at home worrying doesn't help at all. I shall be thinking of you and hoping that in time things will improve for you.

Try and be kind to yourself one day things will be a lot better, Bless you, Fanny Jane.

Hi im 25 yr old male. Diagnosed with osteomyelitis. Then told it could be a tumour. I threw up everyday with worry vomited blood it got so bad. I sat and sobbed into my chest on my own. Id sit for an hour crying uncontrollably. I was terrified and felt alone. Even though i have a loving girlfriend i felt alone as they dont go thru what im going through. Then i thought "to hell with this!!! Im not going to die young!!! Im going to live my damn life like i want and nothings gona get in the way" i also said a prayer asking for help. I receivdd a phone call the day i prayed saying its not a tumour its a bone infection.

Be strong!!! The light is at the end of the tunnel!!! Im still not out of the tunnel but im telling you its from kicking myself up the a**e and thinking positive. Dont dwell on it (near impossible i know) occupy your mind with things that make u smile. You will come out the other side of this a stronger person! Message me anytime my friend.

Mike.

Talk to people also even if ur crying while youre doing it made me feel great

I hope my previous message didnt sound harsh. I have empathy for you i know how it feels to be convinced ur not going to see your old age. But you will and are! We still be writing on here when were older like Fanny Jane (hope names correct ) you will be the one telling the next young lad that he can get through this. As you can too

"this too shall pass"

I always think of that quote as it is very true.

Mike

Hi guest99,

Hoping you are ok and begining to feel on top of everything. Really pleased that Mike had answered your post. He must be a soul mate of mine because "This too shall pass" has also been my mantra for more years than I care to remember.

Just letting you know that people are thinking of you and hoping that you have been back to the doctors for some help and reassurance.

You are not alone.

Good luck, let us know how you are doing sometime. Even at our lowest point life is a precious thing and time does bring better days, hang on in there.

Many blessings and best wishes from Fanny Jane.

we are not alone. Thanks Fanny hope everyone is okay. with each others support we will all be laughing and smiling like normal! Im here if u wanna chat

Much love Mike

Jane and Mike have given some sound advice for all of us Thank you. It is miserable vomitting I only had a

short spell of it and pray I never go through that again, so my thoughts and prayers are with you quesst99

Go to your doctor and keep going until you get the help you need. Take care Tina

Hi guest

there is help out there and these forums are a godsend when noone else seems to understand. let those close to you know whats happening, try not to hide away.most of us sufferers have to adapt our social life especially going out for meals etc.

It may be that the dilations aren't for you, they arent for everyone and you may need to look into and discuss with doctor other options, the hellors myotomy operation, but do your research. This condition may always be there but for most can be managed down the line.. Ask for a second opinion if what you need is not available locally.

Hello,

Hopefully you have decided to go back and talk to someone. I am going for surgery this week and my surgeon has said that 2 out of 10 operations fail usually because something needs adjusting as they can't be 100% accurate every time. He said that these failed operations can be improved as well. Definately go back and discuss...don't suffer this!

Don't worry about life expectancy. People with achalasia have no difference in life expectancy to the rest of the population.

As you are so low with this, talk to your doctor about this as well. It might be he could put you in touch with a counsellor to help you manage. Lots of people coping with illnesses need some help sometimes but you don't have to suffer in silence.

Good luck and hope it works out.

Hello,

Hopefully you have decided to go back and talk to someone. I am going for surgery this week and my surgeon has said that 2 out of 10 operations fail usually because something needs adjusting as they can't be 100% accurate every time. He said that these failed operations can be improved as well. Definately go back and discuss...don't suffer this!

Don't worry about life expectancy. People with achalasia have no difference in life expectancy to the rest of the population.

As you are so low with this, talk to your doctor about this as well. It might be he could put you in touch with a counsellor to help you manage. Lots of people coping with illnesses need some help sometimes but you don't have to suffer in silence.

Good luck and hope it works out.

Hello,

Hopefully you have decided to go back and talk to someone. I am going for surgery this week and my surgeon has said that 2 out of 10 operations fail usually because something needs adjusting as they can't be 100% accurate every time. He said that these failed operations can be improved as well. Definately go back and discuss...don't suffer this!

Don't worry about life expectancy. People with achalasia have no difference in life expectancy to the rest of the population.

As you are so low with this, talk to your doctor about this as well. It might be he could put you in touch with a counsellor to help you manage. Lots of people coping with illnesses need some help sometimes but you don't have to suffer in silence.

Good luck and hope it works out.

Just wanted to say good luck to everyone suffering here and hoping that you are all feeling reasonably ok at the moment.

Good luck with your surgery Marie. I hope the outcome is helpful for you and you feel so much better for it.

We all need good information and a positive outlook to get through life, especially when facing something difficult and painful.

My very best wishes to you all, Fanny Jane.

Hello. I just wanted you to know that you are not alone. Our 12 year old daughter was recently diagnosed with Achalasia in November. She has just been through her first balloon procedure. This is not only scary for her, but her loved ones worry about her too.

Talk to your family and friends and let them know how you are feeling. Trust me, their support makes a big difference. They may not know what to say, they just need to be their to listen.

Our daughter's doctors told us Achalasia is manageble.

A few things to take into consideration that may lift your spirits...

First, we talk to God every day.

Second, if you are a facebook person, there is a group of people on their with this same condition. Search for the Achalasia foundation.

Third, we are trying here in the United States to raise awareness of this rare condition. If you have time, please check out the link we provided to show what we are trying to accomplish.

giving.chop.edu/site/TR/Events/General?pxfid=11990&fr_id=1030&pg=fund

If you visit this link, please feel free to sign the guestbook.

Fourth-NEVER GIVE UP HOPE!

We will keep you in our prayers.

Hello All,

I was diagnosised with Achalasia when I was 16, had surgery when I was 17 and I am now 52 so I guess I have had a good run, although there are always concerns.

There are many groups who support folk with Achalasia. In 2000 I found what is the largest group which is on Yahoo. There are almost 2000 folks in the group from all over the world but mostly US and UK. You can find the group here....https://groups.yahoo.com/neo/groups/achalasia

I also have a group on Facebook called Cool people with Achalasia. You can find me here https://www.facebook.com/groups/coolachalsia/

Truth is you are not alone, there is lots of support out there for you.

Blessings,

and prayer

Jeanne