New Diagnosis
Posted , 8 users are following.
I have recently been diagnosed with Achalasia Type 1. I really would love to hear from others with this condition - symptoms, advice and so forth. I am waiting for the consult with a surgeon. I am Canadian, and where I live, it takes months to get a consult, and then months to get treatment. I have difficulty swallowing both food and liquids. After eating, there is getting to be a sensation of a 'pressure' in my esophagus, that is beginning to hurt. Like stuffing a foot into a shoe too small for you. I also have the cardio-spasms, and they have started to happen at night, during my sleep. I have found that dark chocolate and ginger-ale, help relax the esp. muscle, and stomach sphincter a little, to get the food/liquid to move down and into the stomach. Does anyone have difficulty with constipation? Please respond to me, as I need to hear as much as possible about this condition.
0 likes, 37 replies
AlanJM donna15310
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It does help the system generally if you are not constipated. Perhaps a contributory factor might be a difficulty in drinking enough water, or achieving the right balance in diet?
Trying to relax whilst eating, and maintaining an upright posture can be helpful, because it is the nerve endings that seem to go wrong rather than the muscles themselves in the oesophagus. So finding food that is soothing and comfortable, and avoiding rice, white bread etc that congeals, or food that has skins or stringy texture, or spiciness will all be likely to help.
donna15310 AlanJM
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AlanJM donna15310
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donna15310 AlanJM
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It would be good to have a support group in Canada. I went onto the site you suggested in the UK, registered, but had trouble being able to 'read' any of the postings. I will try again. What do you eat instead of bread, rice, potatoes?
sjk24 donna15310
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Hi Donna. This is my first time also replying to anyone on this forum. I was diagnosed with Type 1 last July whilst living in America and had my surgery exactly one year ago today. Touch wood, the surgery has given me back the ability to eat and drink without regurgitating and coughing all night! You mention constipation and that is something that I had major issues with prior to surgery, and after surgery for a while. For a while my Dr wanted me to take laxative medicines, but I was loathe to get dependent on them on top of everything else, and so he recommended taking a daily probiotic. It took a while to find one that suited me (for example the probiotic drinks actually upset my stomach), but when I did find a probiotic that suited me it has made such a huge impact to my life and I no longer have the constipation issues. Another issue that affects constipation is our ability to eat fibre. Typically the fibrous foods are the ones that are the most difficult to swallow, so it's important to make sure that you get enough fibre in your diet. I mention a bit more about that later on. I also, at my GI's recommendation, take magnesium on a daily basis as like you I too suffer from spasms. I find that they are worse around my menstrual cycle, and have been prescribed a calcium channel blocker (diltiazem) to take when they are really bad, and it does work for me when I have to take it. If I keep on top of the magnesium though I tend to not have to take the diltiazem very often. Prior to my surgery I was advised to eat small portions frequently and to chew chew chew my food and to eat slowly. I was also told to not eat for at least 3 hours before going to bed and to sleep with my head raised. You can achieve this by putting blocks under the feet of the head of the bed or by getting a long wedge pillow (please avoid the shorter wedge pillows as these can cause neck / back issues). The food that my GI told me to avoid was things that he specifically described as 'roughage', so fibrous things that are bulky, difficult to chew to 'mush' and slow to transit down the esophagus and likely to have difficulty passing through the LES. He also noted caution when trying to eat foods that can cause a bolus/kind of clump together. So this included things like salad, fruit, raw vegetables, steak, some types of bread/pastry. He did say that I could have fruit and vegetables blended and so that is what I did. I blended raw fruit and vege everyday to ensure that I was getting fibre (as a lack of fibre is also a huge problem if you have constipation). All the very best to you and know that you are not alone X
donna15310 sjk24
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Thank you so much for everything you have shared; and yes, it good to know that one is not alone, and that others 'know' what you are experiencing. Like anything else, if one does not 'experience' something it is so hard to articulate it, especially Achalasia. You get all sorts of advice from people who simply don't understand what it is like to have food stuck in the esophagus and it feels like you are going to choke, or that it is hard to breathe. And the spasms... Where I live, wait-times are long for everything. When you refer to a 'long' wedge what would you say the length, and width, and height would be best? When you speak of that shorter wedge, is the kind of wedge people get to put under their knees? I find that I'm eating less, and drinking tons of water to try to push the food down. I don't like drinking pop, but have started to drink ginger-ale with supper, as others on the forum have mentioned this helps the food move down [as well as dark chocolate]. Again, thank you.
sjk24 donna15310
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Oh yes, I know what you mean about advice, lol. I think the funniest I ever got was from an elderly friend who told me that she had Achalasia when she was in her twenties (I don't think she did, but who am I to say?) and that what I should do when I was having trouble swallowing something was eat a handful of nuts. My eyes nearly popped out of my head. With regards the long wedge what I mean is that there are many wedge pillows out there. Some are short and kind of start at shoulder level so effectively raise your neck and head. Some start a bit lower than the shoulders and raise you mid spine. Both of these type of wedges are not great for your spine and can cause back issues. There are some that are a long wedge, where the wedge literally starts at the base of your spine and gradually raises up. This would be the best kind of wedge to get and doesn't play havoc with your back. Some folk swear by raising the bed head on bricks, but I'd not heard this tip by the time I'd bought my long wedge. It would have saved me a few bucks. Width wise they all tend to be the same, a little wider than a standard pillow.xx
donna15310 sjk24
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Thank you for that great info on the wedges. Using a wedge, can you sleep on your side? And, can u use a pillow on the wedge? I don't think I've ever seen one that starts at the base of the spine. Where did you get yours?
sjk24 donna15310
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Hi, I got mine online. I think it might have been from somewhere like J C Penney. I think I might have looked it up as a wedge pillow for acid reflux. You can use a pillow on the longer wedges. All it does is gradually raise you from the base of your spine. I use a pillow with mine. I don't really feel like I'm sleeping on a wedge at all because the incline is so gradual and the wedge itself is relatively firm so it feels more like an extention of my mattress. I sleep on my side without issues. Interestingly if. You sleep on your side my surgeon told me that sleeping on a certain side can aggravate our illness. Supposedly if you sleep on your right side you are more prone to acid reflux than if you sleep on your left due to the position of the stomach and the ability of acid to return up the esophagus. I've always slept on my left side, and do find that I get more spasms if I try to sleep on my right.
donna15310 sjk24
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Thank you for the info. I live in Canada, so I will have to do some research online for the wedge. I've checked in stores, but found nothing so far. I'm glad that one can use a pillow on the wedge, 'and' sleep on one's side. Also, the info left side vs right side is quite intereseting.
donna15310 sjk24
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Hi there. I went to the only store in my city, that said they carry wedge-pillows. In the end, the store had to special-order the pillow online, and I will get it in about a week. It is 23" long, so hopefully this will be like the one that you have, and suggested. I would imagine it will take some getting used to. Just a question. In one of your replies, you mentioned that an elderly lady suggested eating a handful of mixed nuts. Are nuts a bad idea for Achalasia?
1blindmice donna15310
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I am so sorry you got diagnosed. It's nice to know it's not all in your head, but then when you find out the treatment options are so limited it doesn't help. I was diagnosed not to long ago, but my GI doctors has said there is no more he can do for me so I need to find another GI doctor. I live in Florida and the only real doctors I can find for the disorder are surgeons. I don't want to be cut on and my GI and physcian don't think I am a well enough for that. It seems like everyone has given wonderful tips, but am I the only one who says wait a minute instead of cutting the check engine light should we not find out why the check engine light is on (my analogy for the surgery). I wish you all the best.
donna15310 1blindmice
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Tassy 1blindmice
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My understanding of this disease, is that the nerves in our E which control the swallowing muscles, are short circuited. They cannot be repaired or replaced. So, our swallowing effor is forever "broken". Causing our Lower Esoph Muscle to fail to open when we swallow. Since the door to our stomach is forever clamped shut, it only makes sense to me to fix it so it is open.
donna15310 Tassy
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Oh yes, I am more than willing to have the Hellermyotomy, and to get on with life, and eating. But, knowing we have great wait-times in Manitoba, its going to be awhile before that wheel turns. Has it been your experience, that once you really notice the 'sticking' of food/liquids in the E, and the 'pressure/pain' in the chest, that this only gets worse? I have read some posts where people have experienced inability to eat much, and drastic weight-loss.
Tassy donna15310
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I used to belong to several Achalasia groups on FB, and everyone's timeline was a bit different. Some had a drastic decline in ability to eat, while others coasted along with a much slower decline. My personal story was that it took about 2 years from the time I started to feel that something was wrong, until the time I was VERY skinny and finally got diagnosed. But each person is different. Have you joined any of the FB groups ? A lot of helpful people there who are very supportive.
donna15310 Tassy
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Yes, this group and one other. I have my diagnosis, Achalasai type 1. My GP sent me to an ENT Specialist, because I was having some difficulty with swallowing [I also have hypothyroidism]. The specialist did a test, and then asked me if I would be willing to have a myotomy [motility test] done. I think she suspected A. When the techncian [myotomy] was asking me questions, she reacted a couple of times to my responses, which made me feel that something 'was' wrong. The specialist phoned me with the diagnosis, and that she had consulted with her husband, who is a surgeon, and his recommendation was that I was to be referred to the only surgeon in my Province that does the Hellermyotomy surgery. So I feel very lucky, that the medical people dealing with me were very proactive on this; that I didn't have to wait years for a diagnosis. For this, I feel blessed. But now I wait.
AlanJM donna15310
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I do not think the condition actually improves, as such, but you will find it worse if you eat the wrong things, or suffer from tension and anxiety around eating. So you can make things easier to some extent by being very careful.
?In the long term, the weight of food stuck in the oesophagus can make it go 'baggy' and lose its muscle tone, making it much more difficult to fix by surgery.
?There is a great range of experience of achalasia, but maintaining a healthy weight and nutrition levels are, to some extent, criteria for working out whether you are managing it OK.
donna15310 AlanJM
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AlanJM donna15310
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Primarily things like white bread and rice that will congeal; food with skins (eg tomato); or with a texture that might be 'stringy'. I have a copy of 'A Patinet's Guide to Achalasia' that I will send separately to you if I can manage the system.
donna15310 AlanJM
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