Does anyone else with achalasia dread breakfast? Because its the worst meal for me. Don't know how much is in my mind .

[Nellie-1928]

[strangetimes]

I don't have achalasia but feel for you . And the "how much is in my mind " resonates a lot with me .

i'm sure it's not all in your mind ,but I know my mind is a tricky thing . I try and distract myself a lot - watch TV or read while I'm struggling to get tablets down . Or I tell myself that certain things help - lychee juice seems a little thicker and slippery ( in my mind ! ) and helps get the tablets down .

What do you have for breakfast ?

[Nellie-1928 in reply to strangetimes]

Usually weetabix or a boiled egg which I can usually tolerate well. It's the bread that I struggle with.

[Hidden]

I do not think achalasia is just 'in your mind' at all, but to the extent that the nerves do not send the right signals to the muscles that operate the digestion process, there may be an effect of tension and anxiety making things a little bit worse perhaps? But it is natural to feel apprehensive when you know the consequences of eating when things do not go down properly.

It would be a good question to ask others at the open meeting for achalasia patients on 12th December. If you are not there, I will ask on your behalf.

The details of the meeting are:

Thursday 12 December 2013 from 5pm - 7pm at

3rd Floor, Brampton House

Hospital of St John and St Elizabeth

60 Grove End Road

London

NW8 9NH

It is near St Johns Wood tube station, which is one up from Baker Street on the Jubilee line.

[Nellie-1928 in reply to Hidden]

I would have loved to attend meeting had it been nearer, if ever you have one in Manchester I would attend . I would be grateful if you could put my concern forward .

[2Chrissie4]

I have Achalasia and felt that I had to have the Ivor Lewis Oesophagectomy with gastric pullup back in 2004. By then the swallowing symptoms had got so bad that major surgery was the only option for further quality of life. Even so I within the last 4 years my swallowing had deteriorated to such an extent that I lost a hell of a lot of weight and was hospitalised for 6 weeks so that I could be put on TPN feeds through the veins. By then only weighed 6 stone and was very ill. After managed to put some weight back on the Gastro specialists along with General surgeons felt that I would benefit from a permanente Jejunostomy feeding tube. They felt that as I could never eat enough to get nourishment, was advised to use the jejunal feeding tube overnight as a boost to what I would manage during the day. That is what can happen with end stage Achalasia. The surgeon who performed the operation was sceptical at the time that the operation maybe to late to be of any help to my quality of life but disagreed with him and said that between operation and when I had the Jejunostomy fitted I led a good life which I wouldn't have had without the operation. Ok, have to supplement my diet with a nightly jejunal feed so what my life is as good as I can possibaly be. Besides have a more urgent and pressing illness that I have to cope with on top of Achalasia and that is Parkinson's for which was diagnosed last year. So on the whole have a lot to contend with but I deal with problems as they come along as there is nothing else to do is there? Take your medication and get on with what life you have and say to others that there are others out there who are a lot worse off than you are. GOOD LUCK.

[Nellie-1928 in reply to 2Chrissie4]

Good advise thankyou and good luck to you too.

[strangetimes]

Nellie does it help if you toast the bread ( let it cool before buttering so that it's crispy ) ?

I think sometimes soft or spongy food can be very hard to swallow . Seems counterintuitive but it's a common experience .

Could you fancy yoghurt for breakfast ?

I guess you need a specialist dietician ,might be worth asking the hospital ?

[Nellie-1928 in reply to strangetimes]

Thankyou will try toast

[chris_usa]

I have achalasia, and had failed myotomy with esophagectomy 10 yrs later. From the period before my esophagectomy, I'll try to give a few things that helped me.

I found that warm liquids help the food go down. Cold tends to cause the esophagus to constrict, so warm coffee or tea with the meal may help. I also found that mornings were difficult, maybe because mouth and gullet tended to dry overnight, and so I preferred soft, warm food. Grits mixed with scrambled eggs was always something that worked pretty well. Look at medications you are taking to see if the schedule of those may be making your morning worse.

As to the mental aspect, I did see food as a burden and dreaded any meal. This is tough to overcome, but it is completely due to the physical problem. Fear or dread of meals is merely a pain-avoidance or problem-avoidance mechanism. There may be some thought processes that aren't optimal, but the problem is not in your head. It's in your esophagus and neuromuscular system.

I was seeing one of the top gastroenterologists in the US in Charleston, South Carolina. For three years he tried every normal treatment for achalasia while I was steadily worsening. When he mentioned me seeing a psychiatrist is when I pushed to be sent to get a surgical opinion because a lot of my problems stemmed from the myotomy that was performed while I was in the US Army. With one day of testing the thoracic surgeon at the Cleveland Clinic figured out exactly what was going on. And then everything fit together and explained my symptoms completely. Unfortunately, esophageal resection was necessary.

Don't stop pushing until you get a good explanation and good treatment. Ask for a second or third opinion. Go to the specialist that your doctor would send their own son to. Be your own best advocate, and Good Luck.