In the process of being diagnosed

How I sympathise. I have only suffered from this complaint for 19 months and have already reached the stage where I can not even get one Fortijuce down (the hospital sent me home to take 3 per day). I can get a couple of squares of chocolate down if I'm prepared to put up with the harsh coughing and sneezing and discomfort that this causes.

Yours symptoms are definitely those of achalasia. Through this site I had actually diagnosed myself within 2 months but the experts, with all their fantastic technilogical aids took a further 12 months. (Why don't they listen to the sufferer).

I was finally diagnosed last September and since have had an unsuccessful botox injection (don't advise, such a short term solution), attempted and failed balloon dilation (don't advise - it was barbaric (the nurses words not mine) as I was fully conscious throughout. The doctors in the normal hospital environment have not enough experience of these procedures. They finally agreed I needed surgery (I asked for it before I even had the botox) and at a meeting on 5 January this year they told me it may be March before any operation and although I said I won't last until then they are refusing to treat my case as urgent.

I have now lost over 2-1/2 stone, am so weak I can hardly lift the Fortijuce and very afraid, as I live alone.

Hope this hasn't depressed you but I wanted to convey the need to have sympathetic GP's (I didn't), hospital doctors and surgeons and urge you to get these in place before your symptoms worsen to the stage I am at.

It is now 7 months since I had any solid food whatsoever and 19 months since I had a proper meal. I've had no social life throughout this period as I cannot even go for a coffee with a friend as I am unable to drink coffee.

I urge you, once again, to seek sympathetic support.

Jean

I'm so sorry to hear of your experience. That is awful. I'm glad that you had a nurse who realised the balloon dilation was barbaric. At least it helps to know that someone is feeling for you. I am able to drink, so I'm very grateful to not be as debilitated by this as you, but you have both my sympathy and my empathy and I hope that surgery is next on the list for you and that it works.

It's just so useful to have somewhere to talk to other people who are going through a similar experience and to not feel alone and mentally done in by the whole thing. Like you, I live alone and sometimes when this thing is at its worst, it feels very lonely, which is ridiculous because I've always loved my own company!

I'm sending best wishes to you and hope that you get some relief very soon. I have my barium swallow on Monday and am very much hoping that things speed up from there. Probably an optimistic hope, because my experience so far is that diagnosis of anything at all is very slow and I keep being palmed off with drugs that do absolutely nothing!

Thanks to finding this site, I am feeling optmistic today. It's nice to not be alone in this.

Take care.

Gracie

At least your barium swallow shouldn't contain any horror story as it is a straight forward procedure.

Call back on Monday and let me know how it went.

Jean

Spooky ... your story could have been written about me.

I was diagnosed in 1999 after suffering for only around a year - It started with food becoming lodged and I lost maybe 2 stones in weight.

The specialist I went through for the investigations seemed quite competent and the tests seemed to flow quite smoothly to diagnosis .... pressure monitoring (tube up nose/down throat for 24hours), endoscopy and barium swallow.

I had the heller myotomy (surgery to relieve the muscle strength) by keyhole ... it went smoothly and I am back to full weight and eating ok.

It's not a 100% solution but it's totally manageable

The key part of your story which struck a chord with me was the foods you mention. For me potato is an absolute guarantee of pain - either immediately or up to 3 days later. Root veg are not too good and fruits - esp banana I need to limit.

Avoiding problem foods and taking care to eat consciously means I avoid most eating problems and suffer little with the night time cramps.

The eating problems, as you say, are only really dealt with by waiting it out .... the food either goes down or comes out. I worked out the technique (for me) to get it up without too much distress ... trial and error tho.

I find ice cold water is useful if the cramps start whilst in bed at night.

I hope this helps a little.

And keep us posted on how you get on.

Richard.

It's such a relief to come here and talk about it to people who understand. I'm in a particularly bad mood at the moment due to the muscle pull. I have a problem with breaking my ribs anyway, so this just seems to be the last straw at the moment. Of course it isn't at all, but I'm sure you know how it is. There are days when you just get on with it and there are other days when you've just had enough and want to be normal again.

I have to say that so far I am very lucky in that I don't get the night time cramps, I'm guessing that it goes on much longer that's the next item to tick off the list! I'm glad you've found a method for dealing with bringing the food up, Richard. I thought I had it sorted, but I think that sometimes it must be hanging around a tiny little corner and just refusing to move either way. I've had that a couple of times in the past week and it's making me rather angry, but generally - more than half the time at least - I can shift food by a quick trip to the bathroom and some judicious and rather horrible vomiting techniques. I've begun to call my \"condition\" involuntary bulimia because of the number of times I have to do this in a week.

However, I can't complain. I've had two days of not needing to do this. Granted, I have eaten far less, but I have managed to get what I am eating down. Not without some choking, but not so much that I have to intervene myself. Small mercies and all that!

I'll drop in on Monday evening to let you know how I get on with the barium swallow. As I said, I've had one before so I know what to expect. It will be interesting to see how my oesphagus is holding up five years after the last one. I don't think it's going to be pretty viewing for anyone!

I hope you both have good weekends, especially you, Jean.

Gracie

x

I have a date of 4 March for Heller's myotomy and fundoplication but no idea how I am supposed to last this long on one Fortijuce, 4 squares chocolate and 1/2 pint water/tonic per day.

One for you Richard, they have me listed as a day patient although it doesn't seem like a day patient operation to me. Where you in for just the day?

Jean

I think I was in for 2 nights.

They gradually increased my intake ... started with nothing ... moving to cold liquids ..... to liquidised food ... then I could go home.

It was 10 years ago so things could have moved on since then, although I struggle to see how they might be able to do the op and release you on the same day?

I'd suggest you contact them just to check.

:-)

Thanks for that. Intend to check tomorrow. I cannot think of anyone I have been in contact with who has had the surgery and been discharged on the same day but nothing about the handling of my case would surprise me.

Jean

I'm so glad you've got a date for your op. Have to agree that day surgery seems a bit of a short stay, although they do try to get people in and out much more quickly these days and on the positive side they must consider you a pretty healthy patient - other than all the obvious -to even consider you for day surgery. I know it seems a long time to wait, but it is just over a month now. I will be keeping everything crossed for you.

I had my US scan on Monday which was fine. Due to my intercostal muscle strain it was a bit uncomfortable, because lying down on my back is not easy atm, but it's done and now I just need to get the appointment for my barium swallow to see where we go from there. Also saw my doc on Monday and got tiny painkillers for my ribs. Embarrassed myself by crying in the surgery, but she's nice and understood that I was a bit at the end of my tether. The intercostals are strained due to violent regurgitation (sp?) and they're not getting better, due to ongoing violent regurgitation, etc.

Feeling a bit more positive at the moment, despite problems not getting any better. Trying to hang on to that feeling for a while.

Will pop back in soon to see how you are doing Jean and keep you up to date with my situation.

Take care.

Gracie.

At last good news. I was so fed up with the team here, I phoned the RVI at Newcastle and spoke to one of the surgeon's secretary, who advised me to get an urgent referral from my GP. This happend and I had an appointment for 4 February, however, with the magic of the internet I obtained a cancellation appointment on 26 January and what a beacon of hope this presented. The hospital, staff and particularly the consultant surgeon couldn't have been more efficient, concerned and understanding. The surgeon took the time to explain everything to me via his own graphics, he arranged for me to have a gastroscopy next Tuesday whilst I sat there and said he would operate the following week!

I had a phone call from the secretary yesterday to say the pre-assessment would be carried out on the same day as the gastroscopy to save me journeying to Newcastle twice. There is still a manometry to arrange (I knew this was essential but the team in Hartlepool had by-passed this with the excuse the catheter had been thrown out by mistake) but hopefully this will be arranged to take place prior to the surgery, scheduled for 11 February.

These are the guys at Newcastle, so knowledgeable and efficient compared to the team handling my case so far. I really don't know how to express my gratitude to them. The friend that accompanied me actually started to cry because she couldn't believe I was finally getting some help. I'm still too dazed to cry.

So joyful, I just had to let someone know.

Hope things are looking up for you Grace.

Jean

That is such wonderful news! I'm so pleased for you and will be thinking of you next week when you go in. I find that all along the way you experience doctors who are better than others. I'm not overly fond of my consultant, but he seems to know what he's doing, so I withhold final judgement on him for now. However, today I had my barium swallow and the doctor doing that was the loveliest man. He was so kind and gentle that I felt like crying. I wish he was the person I dealt with all the time, but of course, he's speciality is different, so I won't.

The BS went well. I'd forgotten how much I disliked it, but it confirmed that my oesphagus is in a huge mess and also located a hiatus hernia, which seems to be a pretty normal thing in either GORD or achalasia. He is now insisting that they do the manometry so that's my next step on the road to eventual diagnosis.

I've had my appointment to see the consultant cancelled and it's now at a later date, but I'm going to call and ask to be given a cancellation if one comes in, because I really don't want to be waiting until May to see the doctor again.

I'm feeling relatively chirpy tonight, despite my intercostals giving me a lot of pain, having vomited violently on my return from the hospital and still being in limbo. I feel that at least things are going somewhere. More slowly than I would like, but hopefully I will be out of limbo soon.

Please come back and tell us how it went, Jean. I'm partly feeling so chirpy because of your news. It's just wonderful to know that you're finally going to be helped.

Take care and speak to you soon.

Gracie

Was at the RVI Newcastle all day yesterday as they had arranged to do the pre-assessment, then manometry and finally gastroscopy on the same day so I wouldn't have to travel up again until surgery. This was very good of them but at the end of the day I was really shattered and I think the experience was a little too far for a 72 year old to take. However, it is all over now until the surgery. I didn't manage to stay the course for the full manometry but the lady conducting the procedure said they had enough information for their requirements. Hope they did, although the consultant surgeon who conducted the gastroscopy himself, did mention I hadn't completed the full test! One is only capable of whatever one is capable of. I agreed to the gastroscopy with just the throat spray as I so wanted to go home by this time and, once again, found it a most unpleasant experience both during and the few minutes afterwards. Don't be put off by my experiences however, as I do have a low pain threshold, never having suffered much ill health throughout my life.

Cannot wait for next week now to get things over and done with, I am so tired of it all.

Grace, I do hope they are not leaving you weeks and weeks before appointments and procedures, as they did with me. Have you done any research to find out the best place to be in your particular area for this rare and distressing complaint? It has paid off for me by finally deciding I should have been at Newcastle.

I will let you know how the surgery goes as soon as I am able.

Jean

It has been quite emotional reading all your posts. I had surgery last July and, thankfully, am coping so much better with the condition now. My experience has been quite similar to all of yours by the sounds of things. My story was posted on 30th Oct on this site. . . if you want to read it it has a very positive outcome and may give you a boost. I lost about 2 and a half stone before I had the op. I had to ask for fortisip nutritional drinks as I could hardly keep anything down. Jean, they should have admitted you to be given food intravenously in my opinion, I really feel for you and hope the op was a success.

Here is a link to a study that they carried out at University Hospital in Zurich. My surgeon gave it to me. I found it very helpful when deciding if surgery was the best option for me. http://209.85.229.132/search?q=cache:iwTEy9JIC1IJ:www.jgld.ro/32007/32007_10.pdf+university+hospital+zurich+achalasia&cd=1&hl=en&ct=clnk&gl=uk

If any of you are interested there is a website called 'Meetup' (you can Google it) and there are a group of Achalasia sufferers who meet occasionally in London to swap stories and get support.

Wishing you all the best.

Anna

Well here I am, still a sufferer of achalasia. Due for surgery 11 February at Newcastle, received confirmation letter 6 February but when I phoned the secretary 8 February for more information, was told the surgery was off she thought it was because another test was needed and she didn't know either when the test would be arranged or the surgery rearranged. I just fell to pieces after this news and could no longer manage the situation any further. Thank goodness for my dear daughter-in-law. She phoned the Newcastle hospital and persisted until she spoke to the surgeon who apologised twice for the fact I had been given no explanation. The manometry and the gastroscopy had not confirmed the diagnosis and the barium swallow x-rays received from the previous hospital did not provide the required information (this did not surprise me). However, as most articles seem to believe the manometry is the deciding factor for the diagnosis of this complaint, I am, once again, somewhat baffled. The barium swallow has been arranged for tomorrow, after pressure from my daughter-in-law, but the surgeon is on holiday this week so nothing is going to happen immediately.

To add to all other pressures, my son and his wife were due to fly to Australia on 22 February for a months holiday, which is now going to have to be rearranged.

I am really now in no fit state mentally to take any more kick-backs from the NHS and am beginning to wonder why it is the envy of the world when they have now reduced me mentally, not just physically, to the lowest I have ever been in my life.

Sorry to sound so defeatist but I am now.

Good luck to other sufferers. Am going to trawl for the Meetup site now.

Jean