new member-please talk to me

Dear Jean

Thank you for joining in with me. I'd like to speak to as many people with this as possible as the condition is so rare.

I did have a flick through your previous posts and I remember thinking that you were one of the people with the most severe symptoms. However, I'm so pleased to hear that your doing a lot better now.

It took them ages to diagnose me too. Before I met my husband in 2008, I was living in a different city and the care I recieved there was very very poor. My GP was reluctant to send me for any tests and was patronising and belittling towards me. On one occasion he told me \"it's all in my head\", and on another he told me I had bulimia. During one visit he even said that he didn't believe my symptoms as \"in his 25years of medical experience he has not seen anyone as young as me with these problems\".

It was only when I moved and became pregnant that I started to recieve proper care. They wouldn't do any tests until my son was born (understandable) but they still had me up the hospital every 2 weeks, monitoring my health and the growth of my son.

I do feel better now I know whats wrong with me and that they can do something.

Jean, did it come to the point where you were hospitalised? I'm only wondering because one Fortisip is not enough to sustain an adult. It sounds like it was a really bad time for you. However, i'm so pleased to hear about your recovery.

The good news is is that I'm trying Mike's method and I would say that it's reduced my vomiting by about 50%. I always try one main meal a day and the rest is fortisips and complans but I think that I'm keeping some down.

Because there's a few people talking to me now, I'd like to ask about 2 things but they're both quite embarrasing. However, I'm going to be brave and come right out with it:

1) Do/ have you suffered from constipation as a result of achalasia? Obviously this is likely to occur through my lack of eating but I just wondered if anyone has any tips of advice? All the info out there is \"eat this, drink that\" etc etc but there is no recomendations when a person has achalasia. My GP doesn't want to prescribe me strong laxatives, lactulose doesn't work and I can't get fibregel to stay down at all (it's vile anyway). If you have experienced this, could you tell me if anything helped (liquid form preferably). Even the fortisips do not contain fibre I've noticed. This problem also means that I'll probably need another op at a later date to remove very painful and persistent hemorroids (gosh I'm cringing whilst writing this)

2) One user wrote (I think it was Mike) that they get food particles coiming up into their mouth at night. i get this frequently and also in the day. I also have this rotten taste in my mouth that I assume is the result of stomach acid, combined with salavia and undigested food. The thing is, i'm very very particular about dental hygiene and this constant rotten taste in my mouth makes me believe that I have bad breath. I brush my teeth and use mouthwash 3 times a day but it only takes the taste away for about 5 minutes. I've even noticed (he's the cringworthy bit) that my tongue now has a whitish/ yellowy coating on it, similar to how it looks when you have tonsilitus. again, I've used a tongue brush but nothing seems to work. Have any of you experienced this and do you recommend anything?

Hope to hear from you soon

Sasha

Hi Sasha,

My experience sounds very much like yours except I am about 6 months further down the line with treatment. I am a 40 year old female , married with 2 children.

I began having difficulty swallowing (mainly bread) about 4 years ago but ignored it at first and just thought it would pass. Then I started waking up in the night with a mouth full of liquid and traces of undigested food and sometimes with liquid pouring out of my nostrils.The doctors diagnosed acid reflux and put me on Omeprazole tablets.

I also started having really bad pain when eating and I described it as food getting stuck, but was told by doctors that it was impossible and it was just the reflux causing the pain. I found some foods to be far more painful than others and started avoiding anything fried, greasy, bread & pasta- most things tasty in fact!! For two years I survived on a very bland diet and tried omitting all the foods the doctors advised which caused reflux- alcohol, caffeine, spicy foods etc. but found no improvements.

I had an endoscopy in June 2009 but it found nothing. I was also getting chest spasms throughout this time which are very painful but I did not know what these were at the time.

Last May 2010 I was hardly eating anything apart from yoghurt, oatcakes, soup and chocolate and it was then that I started being sick after every meal, regurgitating all my undigested food. It was only at this stage that the doctors started to realise there was a major problem. My weight kept dropping and I was anaemic due to lack of nutrition. At first they kept increasing my acid reflux tablets- to no avail- and when my weight went below 8 stone they sent me for further investigations. I had a barium swallow in October 2010 followed by a manometry test in November which confirmed Achalasia.

I spent a month coming to terms with this and reading up as much as I could before deciding which treatment to go for first- dilatation or surgery. I opted for a balloon dilatation which I had in February 2011. It has been very successful for the first 3 months and I have been able to eat a far more varied and tasty diet- my weight is back to 8 stone 3 -but it is now starting to show signs of wearing off and I am getting the uncomfortable feelings of heaviness after eating and drinking and have started regurgitating a little.

I am not sure what to do next, whether to request another dilatation or opt for surgery.

I hope you find some relief soon and that it helps to know that you are not the only one suffering. This can feel a very lonely and depressing illness. One of the worst aspects is knowing how everyone around you watches everything you eat all the time. I also found the insensitive comments from some of my friends/colleagues quite annoying saying how they wish they could have my illness for a while to help them lost weight!!!!

There are some good support groups on Facebook as well as the wonderful group here.

take care

Dear Edz

Thanks for joining in too. Your right that your symptoms were/ are very similar to mine. your also in the midlands too which I where I live. Good to know that I'm not the only sufferer within the locality.

Saying that, i'm very sorry to hear what you went through. Sounds like a nightmare.

i too am on the Omeprazole tablets but I find them ever so difficult to get down. Tonight for example, it actually just came back up in my mouth so I had to swallow it again.

I don't have my appt with the consultant to discuss treatment options till the end of June. I'm assuming they will offer me the dialation first but if they give me a choice, i won't know what to do. I'm tempted to opt for the dialation as the quick fix suits me in terms of looking after my son. however, like yourself, i worry that the symptoms might return after a short space of time. My husband and I would like more children and I don't want to experience a relapse during another pregnancy.

Your experiences with others reactions are similar to mine. I get loads of women asking me what my \"secret\" is to losing my baby weight so quickly. I've got to admit that I feel like responding \"you don't know how lucky you are\". But then I remind myself that it's not their fault and they don't understand. One user on here advised me to be honest with people about my struggles so I've been trying that. i just say to people \"i have a medical condition where I can't eat very much and need a little operation\". Most people accept that and don't press any further.

During my teens i used to have quite a bit of what you'd called \"puppy fat\" and I hit the scales at 12 stone. Funny enough I said to my mate the other day (who struggles with her weight) that if I was offered the option of being 12 stone for the rest of my life without having achalasia, i would accept this deal in a heartbeat. It's only ignorance (unintentional) that makes others believe they would like the condition to help them lose weight. I've no doubt that if they did have it, they would wish that they didn't. I personally wouldn't wish it on anyone.

So can i ask you if you struggled to eat normally after the dialation or did your body just adapt to eating again straight away?

Thanks for your input

Sasha

Good morning Sasha

Regarding the two symptoms you describe (constipation and bad breath) I did not funnily enough, experience either. I cannot understand how my body kept on working because 3 months prior to op I could no longer get even Ensure down which is why they moved me to Fortisip juice and yet still they didn't treat it as urgent at my local hospital. I was also hospitalised on two occasions.

My main concern, at the time, apart from the obvious isolation and fear was loss of hair and unable to get any hair I did have to curl, even with a perm. This is only just now returning to anywhere near normal.

There are different solutions for different people as far as treatment goes but I told my doctors from the very beginning the only satisfactory solution as far as I was concerned was the surgery. I did not want to go through the botox treatment (which they put me through anyway); neither did I want the balloon dilation (which they tried and failed on anyway) and I finally got the surgeon in Newcastle to perform the surgery and I have never regretted it.

I sympathise with you having to wait until the end of June to see a doctor again, they don't seem to realise what a long time that is to someone with our complaint.

Good luck!

Jean

[quote:20974de902=\"sashahillsbury\"]Dear Pokey

Thank you for your post (it took me a moment to realise i was talking to someone different), you gave me some good advice.

However, i can't help being a little bit disappointed knowing that the ballon dialations didn't work for you. Do you know why they haven't? is your oesophagus still closing when it shouldn't? sorry for all the questions. I believe this is what they are going to offer me but I could be wrong.

I'm glad you can find some humour in this. Likewise, I'm trying to see the funny side of it. For example, my husband suggests that we should change our surname to \"Vomit\". I vomit, my son vomits (coz he's a baby) and my cat enjoys vomiting all over the kitchen floor after eating grass :lol:

So have your considered or been offfered the hellers myotomy Pokey?

Funny that fizzy water works for you. Like Mike, Fizzy drinks are not good for me. If it's going to be water, it has to be still.

The swallowing air at the same time as water is proving sucessfull (thanks so much Mike). It hasn't stopped me being sick completely but I'm getting more down than normal.

Sasha[/quote:20974de902]

Don’t be disappointed. Things work completely differently for everyone. And it’s not accurate to say that they didn’t work. The first one I had worked completely and lasted for about a month before the muscle repaired. My doctors had promised me before this that the dilatation would work completely and be permanent. My doctors were full of misinformation like this. I had repeat dilatations and they all worked temporarily for shorter amounts of time on each occasion until eventually they would work no longer. Even the sedative stopped working.

However, the major long-term effect that they had was to weaken the muscle overall, so that when it healed again it did not close as much, which enabled me to train myself to use carbonated water to swallow. It also seemed to weaken the nerves so that whereas attempting to swallow was once extreme agony, it became uncomfortable but without sensation. My LES had been left weakened and slightly open – not enough to allow me to swallow unaided, but enough to cause acid reflux. Before having the procedures my symptoms were identical to yours. I was ten years old at the time and managed to hide it from my family for a year before owning up. I used a similar strategy to Mike’s back then. Carbonated liquid wouldn’t have worked then. The treatments will have some effect for you; they do for everyone, as I said, to differing degrees.

I had a lot of conflict with my doctors as they continued to pressure me into repeated procedures and tests. It became obvious what they were offering was not going to have any further beneficial effect and I had begun to adapt and manage things effectively. At the time the Hellers was not laparoscopic and it would have meant some extreme surgery.

Five years ago, when my wife became pregnant, I had a thought that I would try to get it sorted again. I went back to the hospital and let all the new doctors run all the old tests again. It was like they were refusing to read my notes from previous years - they wanted to start from scratch again. They ‘discovered’ (as I had already told them) that I had a particularly severe case. My whole oesophagus is completely paralysed. I found myself being asked to come back for endoscopy after endoscopy, each time with a different doctor. The dilatations they performed as a formality had no effect at all. On the final occasion I was met by yet a new doctor, with half a dozen spectator student doctors, for the same procedure. I felt like I was some sort of exhibition. I refused to allow it and that was the last time I was in a hospital. I’m quite happy with the way my life is and I don’t need treating like that. I am a social worker and have worked with very politically active disabled people. My thoughts on the models employed by the health sector to

I can't remember if I suffered from constipation or not when I was in your situation.

However, as an aside and in regards to experiencing acid reflux, I find that ensuring I get enough fibre in my diet to keep me regular is a massive factor to preventing reflux attacks.

Obviously I try to do this using foods that are easy to swallow. Ripe bananas and skinless pears have loads of fibre and are easily to mash up. You can even juice or blend them and dilute them to thin it out for easier swallowing. Their added benefit is that they also provide a lot of water to rehydrate you (which is of infinite importance to anyone with Achalasia). It always seems random as to what goes down with Achalasia, so maybe it would be worth a try? Broad beans and other pulses can be mashed quite well and they contain a lot of fibre too.

Of course, they will still be a massive challenge and you'll want to be able to make it as soft as possible to eat. Even then they may not be foods that agree to stay down if you do manage to get them down to start with.

If your body has been lacking fibre for a while, start small as it will need to adapt slowly to increased amounts of fibre if you manage to get any into your stomach.

Dear Pokey

I was absolutely facinated by your story, thank you for sharing that with me. I apologise for mis-interpreting your original post. I'm glad to hear that the dialations did give you some relief.

Your absolutely correct when you say that the vomiting is more regurgitation, however, i experience a combination of both. Usually, i will properly vomit in the morning when taking my first few sips of liquid. The gaestroenterologist (however you spell it), reckons that this vomiting is due to the acid reflux i experience at night. Thats why they've put me on the omeperazapole.

Sometimes aswell, regurgitation of the food triggers my gag reflex, then the stomach contents will come up (sorry about the grossness of this).

Another strange fact: I strongly suspected that sometimes the food I regurgitate is not necessarily the last thing I've eaten. Wierd hey?

From reading your posts, i understand fully why you decided to leave things as they were. As you said previously, you are coping with it so I understand why you wouldn't want to keep putting yourself through these procedures. One thing I've picked up from my own experiences and from people on here is that the quality of treatment really depends on where you live. That doesn't sound right to me.

Yes, I've had the endoscopy, it was how I was first diagnosed with this.

Another interesting fact that we share: I'm not a social worker but i'm a mental health professional. Obviously, I'm on maternity leave at the mo but when at work, i was happily vomiting between patients! I never discuss my personal life with people at work so imagine my horror when they arranged a \"suprise leaving lunch\" just before I went off on mat leave? :shock:

So how do you manage your achalasia at work? I'm interested to know just incase I have to copy you.

Dear Jean

Thanks again for responding to me.

As a woman, i can fully appreciate the affect that hair loss would have on a person. I have long blonde hair which has been falling out for a while now. I assumed it was because of the pregnancy. However, I keep getting lots falling out and it is very frightening.

I was quite annoyed to read that your case wasn't treated as \"urgent\" despite the severity of your symptoms. What I can't understand is why they didn't operate the first time you was admitted into hospital? . However I appreciate that they eventually did help you which is great news.

Thanks also for responding to my embarrasing questions.

Pokey, I will buy a blender asap aswel as a mountain iof bananas and pears - thank you.

Sasha

Your symptoms are again slightly different to most that I’ve heard. But that’s a factor of Achalasia. It’s so unique to each person and often the symptoms seem to come in a way for which there’s no easy explanation. I still find it difficult now to explain to people how my LES is still too closed to allow any food to pass but at the same time open enough to allow acid to shoot into my oesophagus if I so much as sneeze in the wrong way or lie down at the wrong angle.

The different range of quality of care is always very surprising. Most people are doing well if they are able to get a proper diagnosis before their health becomes critical. GPs are usually useless in spotting and explaining Achalasia. It’s very rare so in some ways, that’s fair enough. But often they are also so persistent with their incorrect diagnosis despite arguments or signs from the patient which suggest otherwise. So many people get told they are just suffering from heartburn because they describe symptoms of food being stuck. Some GPs inform people that they are bulimic because they vomit or anorexic because they are losing so much weight and choosing not to eat rather than the truth which is that they can’t. I’ve spoken to people who have actually been diagnosed as anorexic, despite persistently describing their symptoms, and are eventually sectioned under the Mental Health Act and peg fed in an eating disorders unit. Being in a hospital environment, they eventually get the proper test just to rule out that what they are saying is wrong and, lo and behold, they’re found to be telling the truth and to not be anorexic or bulimic at all. And these people, sectioned, deprived of their liberty, forced to undergo unnecessary surgical procedures before being vindicated, receive no apology. A few I know have not even been released. They have had to fight their section at tribunal, despite it being found that their illness was not mental at all.

I moan about the treatment I received, but at least I had a quick diagnosis and was not a victim of such injustice.

It’s difficult at work sometimes. The best policy I think is just to be completely open, honest and frank. Achalasia affects me in so many different ways sometimes people make assumptions about my behaviour which aren’t correct and need an explanation to avoid misunderstandings.

I mentioned my voice previously as an example. My voice is very quiet and weak due to years of damage from acid reflux. I tend to conserve it as much as I can. As a social worker I am required to hold interviews, run meetings, give evidence, give presentations and undertake other tasks which require heavy use of my voice. I can give it my all in these situations but I know that as time goes on, my voice will start to weaken. After a half hour of heavy use of my voice, it’s on the verge of giving up. For the rest of the day it will be almost gone. As a result I instinctively don’t talk much, to save what voice I have and because often whatever I might try to say in a noisy environment which is the office will not be heard and I’ll have to repeat myself making additional effort to be heard – and because I’m not one for meaningless small talk as it is. People can sometimes get the impression that I’m uncommunicative, aloof and ignorant as a result. When I do talk, people hear my quiet voice and make assumptions that I’m a quiet, timid person, shy with little to say. It is far better for me to make people aware of the causes of my quiet voice as soon as possible, so that they don’t make these assumptions, which are not correct.

When it comes to eating at work, I use meeting rooms or interview rooms or time it so that I know I can use somewhere where no one else will be around. If it’s summer time I’ll go out of the office to a secluded part of the nearby park. Sometimes I’ll go out to the car. I’m often out and about anyway so I time my lunch for those times and have found many pleasant spots to use. Again, walking off from

Hello again Sasha

The hospital I attended and was admitted to in my home town did not help me. In desperation and urging by family and friends, I asked for an urgent referral to a hospital in Newcastle. They acted swiftly and urgently and had given me my life back after two weeks of first attending.

I had to travel to Newcastle again last Thursday for a gastroscopy check, as there can be a danger of developing cancer and, unfortunately for me, the doctor found ulcers (I had no symptoms - unbelievable) and advised to start a ppi once more and return for a further gastroscopy in 6 weeks. I absolutely hate this procedure as it seems to get worse every time for me and I've had about 8 of them, but if that's what it takes to be a normal human being, so be it!

Let's know how you go and what your eventual outcome is.

Take care and carry on getting support where you can. My surgeon advised me against these sites but in the early days it was the only place I received unreserved support, which I found invaluable and I do appreciate that everyone is an individual and all do not react the same.

Jean

Pokey

Your description of GP experiences is very very accurate. I'm glad you didn't experience this injustice but as someone who did, I'm still very angry about it. I can't help believing that if my first GP had listened to me properly, I wouldn't be in this mess I am now and the symptoms would not have got so severe. Thats not to say that I'm looking for someone/ something to blame because I know that it's not anyone's fault. I don't expect GP's to have indepth knowledge of every disease known to man, but I do expect to be referred onto someone that does.

I'm considering the possiblity of writing a snotty letter once I've had treatment but then again, I might be so relieved that i might not care anymore.

Your experiences with your voice also gave me food for thought (it seems silly using that phrase under our circumstances but you know what I mean). I have a stammer, something which I have had ever since I can remember so therefore is not related to the Achalasia. Despite this, i have always been quite a confident, outgoing person and have never let the stammer hold me back whether it be in work, relationships, friendhips etc. Infact, i'd go as far to say that I've accepted it as part of my person and wouldn't want to change it.

Of course, speaking for me takes a lot more effort and concentration than I expect it takes the average person but I've got used to it over the years. However, i've noticed a change in it recently. Rather than a repetition of sounds or a prolonged use of sound (which is what my stammer is normally like), I'm finding on the odd occasion that i cannot utter the word or any sound of it for love nor money. The easiest way to describe this is if you've seen the \"Kings Speech\" where he can't utter any sound of the word he's trying to say.

In addition to this, my voice sometimes sounds as if I've chain smoked 20 cigarettes with the addition of the chesty cough - nice.

Yes, that has made me wonder.

Anyway, I think you're very brave for being so honest with people. As I said, i don't normally advertise my difficulties to people but maybe I should so people don't mis-interpret. When i do disclose, i normally get the same response as you especially asking about what I can and can't eat. This is quite frustrating.

Jean, have you been told then that having achalasia increases your chances of getting oesophageal cancer? I'm not asking to panic myself, I'm just curious as to why they want to keep giving you so many endoscopys

Sasha

Hello Sasha

Yes, I was told immediately after the surgery that there is a greater risk of oesophagel cancer, mainly because of the undigested food staying for long periods in the oesophagus. He did also tell me, after he got me to volunteer to have a mamometry testing a new machine on loan from Holland, that my oesophagus had not returned to normal but remained stretched for the rest of my life. This is probably because of my age (74 years) although that is my theory I didn't ask him directly. When I return in 6 weeks for yet another gastroscopy, I will get him to confirm why this is so.

One 'ray of sunshine' he did say that the test will no longer be required on a regular basis once/and if I reach 80 years!!!

Jean

Hello again Jean

So does everyone who has Achalasia and who has received medical treatment, need to have an endoscopy every year? It's not pleasant, i admit, but at least they're keeping an eye on their patients.

So your actual oesophagus (not the muscle) remains stretched? If so, I'm curious as to what that means. Does it mean that it has stretched outwards due to food blockages in the past and that it's remained in that position? Or does it mean that it was streched anyway which caused the Achalasia in the first place?

74? Wow! You're an inspiration to us all Jean

Sasha

p.s) Thanks for all your helpful information by the way.

Dear All,.

On a light hearted note I had to smile at Pokeys input below. It reminded me of a playground experience I had with an inquisitive schoolmate (and from which I took advantage of :lol

many years ago.

[b:699188803f] Isn’t there anything that they can do about it? Isn’t it horrible having to live like that? So how do you go on when you go out for dinner?

Then there are numerous, identical, “Can you eat X? What about Y, can you eat that?” [/b:699188803f]

We were standing in the playground and having explained that I had trouble swallowing he offered me some of his crisps at same time arching his head across to listen to my throat. It went something like this,...

\"Didnt hear anything\"

Oh dear I said,...lets try again. (offers me more crisps)

\"Nope,.didnt hear anything again,.here have more crisps\",...

You still not hear anything ?

\"Nope\"

Puts my hand in crisp bag again. How about now ?

\"Emmm,...NO\" by which time the bag is empty.

Ah well I said,..goes like that sometimes,...

At which point he has a disgruntled look on his face as I moved off towards the toilets to down my fix of water !!!!!

Served him right,. Nosey kid !!!

regards

Mike