37 year old female just diagnosed

Whatever else you do, you do have to try and keep up nutrition levels.   Eating and digestion is not easy when you are rushing around, so you may have to think of having high nutrition liquid drinks / soup for some parts of the day.   Concentrate on being relaxed when you actually are in the process of swallowing.   If you can find a way of adopting relaxation routines for at least a limited period, that will help.   

These things that our bodies do to us do not pay heed to the daily schedules you want to keep up, unfortunately.

Hi there, I'm sorry to say I feel your pain every bloody day, Iv had 1 x widening & 2 Hellers operations & all 3 have not worked, I'm a father of 4 girls and trying to keep my strength up is impossible, cup a soups chocolate and wetabix soaked for a few minutes is all I can eat, I'm sick to death of it, 

i used to a 200mph dad 13.5 stone and very nicely built, now I'm a 9 stone wimp, can't do my job, for fear of passing out, can't play with my kids as I have no energy, 4 years of this is beyond the joke, I fix cars, well used to, I don't understand why with all the science & technology the sugeons still don't have a answer, I'm nearly in my 5th year now, & I can't see it getting any better. I keep my chin up for the sake of my wife & girls, but when my 3rd daughter wrote a letter to Father Christmas asking for a new stomach for her dad as her top present is sweet but unacceptable , and hurts the most. Keep going it's all you can do for the love of our family's 

Bless you. Hubby was actually diagnosed wth Malnutrition eventually and like you, is starving hungry most of the time. He eventually settled with nutritional style drinks that have a high calorie content wtih the minimal amount to swallow, the sort you can buy in chemists or supermarkets... (I'm sure you know the ones I mean! And you can buy portable cartons of this for work also.) He is now prescribed special drinks to deal with this as he awaits surgery.

As one of the other poster commented, it is utterly essenrtial that you keep up nutritional levels and fluid levels as well. You will begin to suffer physically if you don't  Little sips often seemed to help my husband. 

You are clearly a very busy lady, but how about relaxation time? Could you meditate perhaps? Anxiety and stress do seem to make this condition much worse. Make time for you and make food times unrushed and as stress free as possible. Experiment with different textures and types of foods. Oddly, one thing my husband seems to handle when nothing else is working, is something crisp and crunchy! Don't know if this is the same for everyone, but it's a thought 

I wish you well and stay in touch on here. Take Care x

Hello Mom Of 3,

how are you?

Don't tell me, I can see your eyes and your tiredness, through these lines. I can see the shape of bones come off the skin...the courve on your shoulders and depressed attitude. Perhaps what I am telling you can upset you...it is normal...but this is not my goal. I would like shake you a little to let you see where Achalasia starts...

Energy, positive attitude, strongness, good health, start for fist in our head rather than our body.. medicines are not substitute of good will. You will not find any valuable solution if you really don't want it.

Please tell me, when your children were baby did you feed them with blended plain food? Don't you think this could help you some how to go through this hard fase of your life? Or is much more easy say :I am tired, that's it. Can anyone come and save me?... Nobody will be able to save you  if you do not help yourself and if you don't trust.

You have 3 beautiful kids which should be your pride and your joy, think about them. If you're not able to stand who will look after them?

All of us, I am talking about Achalasia suffering people, we went through these staff : food blended, weight lost, wedge to slip, antacid diet, painkillers, relaxation methods,antidepressants, bariomeal, manometries, endoscopies, myotomy, days and days of sitting in medical waiting rooms, and pain.

 But if you for first thing not simply accept Achalasia with acceptance relaxation and patience, there is not way to get rid of all discomforts related. As more you will force  down the food as more will rise up the pain and the food will jump back again, let you starve...

Reading your story I saw mine, with the same mistakes I did at the first..

I can tell you just one thing for sure, as more you will combat against Achalasia as more will be painful and nasty and will destroy your life.

As soon you will accept to live with it, as soon you will be back to enjoy life..

I hope this my lines will help you.

All Best Wishes!

Update: I saw a specialist a few days ago and he said the results of my tests were signifigant. He asked what I wanted in regards to surgery and I said the POEM operation. He knows 2 surgeons in this state that perform this operation. I have to get the upper gi endoscopy I'm scheduled for on November 18th. That is the last test to get done to make sure there isn't something else causing this. Then he will refer me to a surgeon. He told me to drink milkshakes or boost drinks to keep up my calories. He mentioned a feeding tube but doesn't think we'll need that, hopefully not. He said to eat whatever I can to keep up calories. I asked how severe my case is and he said signifigant.

I weighed in having lost a couple more pounds. I currently weigh as much as my 16 year old daughter. She's 5 foot 8 weight 116 pounds. I see her thin frame and it brings me to tears to think that is how much I weigh. She is thin and growing still and I am waisting away. I tried to eat dinner last night and got 2 or 3 bites and gave up. Trying to drink water wasn't helping. I tried later to eat a bowl of cereal and regretted it. It feels impossible. I feel so thin and so much suffering right now. I have to keep working through all of this. My work doesn't know about my condition.

I wonder if many of my coworkers see surely how much weight I've lost and worry if they think why. I don't want them to think bad of me. I am sick and I feel like I am dying but I'm not. There is hope, I need to get this surgery soon. My body hurts. I tried the boost drink and for some reason my body did not like it and I could feel the spasms going through out the whole day. It made it worse. So I've got to figure something out. I hate the way I look right now, so thin and unhealthy. I can't afford to buy the boost drinks anyway so it kind of works out. My sons father doesn't seem to care that I am ill and he will not stop with his anger of unknown origin toward me since dumping me on Sept. 16th. My girls father seems a bit more human in this though I haven't told him much accept that I need to get surgery, I am sick that is why the weight loss. I feel like I am fighting for my life if that makes sense. Starving, dehydration, lack of energy and stress. I know I'll get through this and I appreciate any support. I believe in God and pray but feel like of everything I've been through in my life to have this, what have I done to deserve this? Why me? But if my sons father hadn't dumped me so cruelly back in September I wouldn't have ended up realizing how serious my condition is and gone to my doctor for help. But I feel like I waited too long. Now I am desperate and fighting every day. Things happen for a reason. Thanksgiving is coming and I want to make it good for my kids but I won't be able to eat much.

I did find out that the upper gi endoscopy, I will be sedated, out cold for the procedure and won't remember anything. I am so happy to know that. I was so scared to get that test done. That is a big part of why I waited so long to get help. I have a coworker that will take me to get the procedure done and my sons father will watch him that day. I just wish he'd stop being so angry toward me as I am going through hell right now and wish he'd show some humanity. I just have to keep pushing on. One day at a time.

Update: My gi specialist called today and has suggested that I get botox to help ease my swallowing problem for now because surgery is at least 6 weeks away and he feels the situation is diar. I feel like it is diar. But I hadn't done much research on the botox for achlasia when I spoke to him so I asked to think about it and call him back. He said to hurry because my appointment is next week to get the upper gi endoscopy. So I'm just like not sure what to do at this point. Some stuff I read says that botox is not good to give to someone that is planning to get surgery because it can cause scar tissue where they'll do the operation in your esophagus. Not sure if it will indeed work for me. I feel each day less and less to my optimal normal condition. It's like I'm fading away and becoming more desperate. It's funny that he called me when he did because I was going to call his office today and ask what they recommend because I can't bear this much more like this, there's got to be something, I'd even do a feeding tube every day if I had to. I can't stand starving like this. So now I have to think about a botox injection that they'd do via endoscopy I'm guessing after my upper gi endoscopy test. With the holidays fast approaching and as well work picking up, my level of exhaustion is already high. I know I'm in a lot of trouble and my clock is ticking until...I don't know what but I can feel it. So a botox injection in the sphincter of esophagus to ease...to relax it so I can swallow better. There's no guarantees it would work. From what I see its usually given to candidates that are not good surgical candidates like elderly and such..but I am good candidate for surgery. I'm just in a little bit of a crisis situation right now. Not sure what to do.

Hello

I have been suffering with Achalasia for 5 years and was diagnosed properly about 30 months ago.

I have had 2 Botox sessions about a year apart and it certainly improved things while I am considering all the other options.

During this time I have researched a lot about this condition and have adjusted my diet and lifestyle to help manage it day to day. I am still considering a surgical procedure but if my current condition stays as it is I will put off surgery for the time being.

Initially I lost nearly 2 stone but have put back on about a stone with my new diet.

The list below has been very useful to me and was supplied by the organiser of the Achalasia Meetups in the UK.

NB These have not been vetted by the medical profession but are what have worked for some of us

Tips for coping

1

Eat smaller meals more frequently.

2

Eat slowly and chew well

3

Don’t eat too late

4

Beware of eating when feeling stressed

5

Eat fairly moist food

6

Lifting the chest and taking a deep breath also helps.

7

Keep a small bottle of water handy in case one’s oesophageal muscles go into spasm when out and about

8

Don’t have drinks too cold

9

Eat early in the evening

10

Don’t drink before bedtime

11

Don’t eat too many nibbles such as crisps and nuts or drink too many glasses of wine before a meal in the evening (I know one should only have 1 or 2 glasses of wine but . . . !)

12

A good start to the day is a fruit smoothie using a wide variety of fruit liquidised with a live yoghurt and probiotic (actimel) and a good teaspoon of manuka honey. 

13

Multigrain toast with Somerset brie is also a favourite, helped down with hot water.

14

With a good variety of nutrients early in the day, I don't have to worry about having to eat much else.  Ironically, that then makes it easier to eat.

15

Always have a drink with the meals: sparkling types can be beneficial, and gulps between every few mouthfuls help

16

My most important factor in managing my eating has been drinking hot water (temperature is important - half cold and half boiling).  Mastering a technique which worked for me took time, but is worth it because I am now comfortable eating out and the only downside is the copious amounts of hot water I might need to drink to get the food down.  The technique involves judging how much food I can eat before I have to gulp down some water. 

17

Soups are a good way of eating a variety of nutrients as they can be liquidised.  I include all vegetables and pulses and experiment to get something I really like, sometimes topped with cheddar cheese. 

18

I avoid eating skins on fruit and veg, but do churn them up in smoothies and soups

19

I avoid fatty meat and eat mostly chicken, fish or vegetarian dishes.  I can even manage pizza if I drink enough hot water with it.  

20

I also avoid spicy food and drinking alcohol with food is very difficult. 

21

Salads are best eaten with lots of dressing and in small quantities.

22

Be aware of the types of food you personally need to avoid, and what can be digested easily.

23

I avoid the following:-

 

a) Large lumps of meat. The only  meat I consider eating is mince usually in the form of a cottage or shepherd’s pie.

b) Dry chicken can be a problem. Meat in a sauce or casserole is usually better than anything else.

c) Pasta of any sort.

d) Too much bread. I can eat  crackers better than bread.

e) Potatoes can be a problem if boiled but thin french fries are not too bad.

f) Rice. My first bad experience of Achalasia was with a dish of paella. Fried rice is better than fluffy stuff.

g) Spotted dick or similar dry sponge puddings are avoided.

 

24

Food that gives me little trouble:-

 

i) Soup

ii) Fish - salmon or battered cod seem good.

iii) Salads

iv) Stir-fry food is usually fine

v) Funnily enough quiche or similar is usually not a problem

vi) Cheese with crackers

vii) For dessert ice cream is best.

 

25

Basically it seems it is the consistency of the food which has more influence than anything.

26

Don’t eat too much bread in one sitting and eat good quality bread rather than soft white bread which is particularly bad for blocking the oesophagus

27

Avoid very dry food like falafels, raw cauliflower, raw carrot

28

Best foods were weetabix, readybrek, custard, sponge puddings and mashed potato. .  Not the most healthy range but I was advised by the dietician at the hospital that it was more important to keep my calorie intake up than eat healthily.

I was prescribed Fortisip milkshakes which were a lifesaver as they are full of vitamins and nutrients.

29

Probiotic pills/Acidophilus powder as a major part of immune system is in one’s gut

30

Echinacea and Manuka honey to boost immune system

31

Sleep propped up with lots of pillows (before the operation) to help stop food and drink coming back up at night

32

A bed wedge is a useful alternative to lots of pillows to keep you propped up at night.

 

33

I always finish the day with a good teaspoon of manuka honey and lemon juice in hot water.  This is after I have ensured as much as much as possible that all food has been washed down.  That way I am left with manuka honey in my oesophagus overnight.  I haven't had a cold for the last couple of years so I think it might have given me some protection.

34

Relaxation helps to avoid spasms and pain with the sphincter. 

35

I find yoga helps as does drinking hot water to relieve the pain. 

36

Pain from the sphincter can be avoided by warming up cold food and drink in the mouth first before allowing it to go down.  Avoid letting the chest get cold.  Cold wind can set up pain.  |I wear a scarf even if I don't feel cold.

37

Talk to other Achalasia sufferers. It helps so much to know you’re not alone!!