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
Nae_Nae donna15310
Posted
Hi Donna , this is my firest time writing back to anyone on here. But I know how it feels to not have anyone else feel like we do. I have been diagnose wit Achalasis for 5 years not. i didn't know here was a type. I'm from California and the docotrs here are just learning more and more about this disease. I have the heller myotomy with dor fundoplication. I had some relief up until 6-7 months ago. Now I have hernia , which they think that might be my problem with food getting stuck again. yes I have constipation to. If i get really bad then my stomach bloat and I notice my food/liquids are hard to go down. So my surgeon and GI Doctor have recommended me to take Miralax twice a day to help and it works! well i hope all goes well with you. I peresonally know of one other person. who has Achalasia( whos my patient) I worl in the moedical field. I get so happy to see him. because no one seems toknow how much we suffer. we loke lok on the outside but hurtingn on the inside, until we can't eat anymore and then we look sick because we lose weight.
donna15310 Nae_Nae
Posted
Thank you for taking the time to respond. Do you find that dark chocolate and ginger-ale helped you? they are supposed to 'relax' the esophageal muscle and the stomach sphincter muscle, to help the food and liquid move down.
Nae_Nae donna15310
Posted
Hi Donna, No i've never tried it before. i must tired it . I'll try anything to help!
Thanks
Nae_Nae donna15310
Posted
Hi Donna , this is my firest time writing back to anyone on here. But I know how it feels to not have anyone else feel like we do. I have been diagnose wit Achalasis for 5 years not. i didn't know here was a type. I'm from California and the docotrs here are just learning more and more about this disease. I have the heller myotomy with dor fundoplication. I had some relief up until 6-7 months ago. Now I have hernia , which they think that might be my problem with food getting stuck again. yes I have constipation to. If i get really bad then my stomach bloat and I notice my food/liquids are hard to go down. So my surgeon and GI Doctor have recommended me to take Miralax twice a day to help and it works! well i hope all goes well with you. I peresonally know of one other person. who has Achalasia( whos my patient) I worl in the moedical field. I get so happy to see him. because no one seems toknow how much we suffer. we loke lok on the outside but hurtingn on the inside, until we can't eat anymore and then we look sick because we lose weight.
donna15310 Nae_Nae
Posted
Tassy donna15310
Posted
Hi Donna,
You describe classic symptoms that I too experience. You will find that different people find that different things help or cause problems. Some people do better with warm things, some with cold things to drink. Some people avoid mushy food that clumps, such as soft chicken, potatoes, breads, etc. Some avoid raw fruits and vegs. Over time you will learn what helps you and what are your problem foods. The good news is that treatment (Heller myotomy or POEM procedure) generally provide very good relief. Since you say you'll be waiting a long time, I would suggest some things in the meanwhile that most everyone finds helpful. Don't eat much in the evenings before bed, sleep with a wedge pillow or put a few books under the head of your bed so that you sleep at a slight incline. It helps a lot at night. Eat slowly and for now eat what you CAN eat and don't worry so much about proper diet, you don't want to become underweight too badly. Some people find that fizzy drinks help to "push down" the food to relieve that pressure pain after eating. Others swear by warm or cold beverages. Some people do have issues w constipation. I think for me it is partially due to being borderline dehydrated, and not being able to eat much fiber. You may want to add a fiber and vitamin supplement to your daily routine. Perhaps even a stool softener. Over time you'll learn your own quirks, then combine that with treatment and eventually you should be able to live fairly much normally agian soon. I hope this helps. I have had achalasia for over 20 years.
donna15310 Tassy
Posted
Oh my gosh, thank you SO much for your sharing; it is really helpful. I find that drinking ginger-ale is helping and eating bitter chocolate. I haven't drunk pop in years, and really don't like the idea of drinking it [I have IBS as well], but hey, if it helps. I need to find a wedge, for sleeping, as I remember, when I did initial research that was suggested. And, I am so careful what I eat..and you are right about ruling out the things that seem to 'stick.' I'm alredy taking a supplement, and we always have Glucerna [like Boost/Ensure, for diabetics - hubby] in the fridge. So, I know that drinking a bottle of that will give me some nutrition. Maybe I should be drinking one a day.
Tassy donna15310
Posted
Hi Donna - I'm glad I was able to help a bit. My advice to you for now, is to just pamper yourself. Eat in whatever way you need to eat. Before my surgery I was a grazer, nibbling little things all day because I couldn't eat a meal. I sipped coffee all day too because for me, warm relaxes my esophagus. Eat when and how you are best able to. You want to avoid that pressure feeling. Your E can get stretched out and baggy over time. You don't want that to happen. It makes the surgery more difficult and is a place where food can stay for HOURS. So be selfish, eat or nibble what works, avoid what doesn't. Drink the Glucerna and whatever you can to keep up your nutrition. Experiment with fizzy, warm, cold, thick, thin, Find what works for you. I got an adjustable bed finally because I would "drown" at night as stomach contents came up in my sleep. It helps a lot to stop eating in the evenings, sleep on a wedge or prop up on the sofa. Before my surgery I lived by nibbling cereal, cookies, chips, etc. Things that turn to "dust" when chewed up, and washed it all down with warm beverages. Cold stuff just siezed up my E to where I could barely breathe. But now 20+ years later, I eat most everything, occasionally have a bad day or a bad meal, do keep a thermos of warm beverage handy and other than that, am doing well. I even eat out fairly often without worry. Sorry you are at the beginning of this journey, but rest assured you will get to where it is just another "thing" in your life. Like having an allergy or weak ankles, it becomes something you just adapt to and have a new "normal".
donna15310 Tassy
Posted
I so much appreciate all the information you have shared, and your support. I have a couple of other questions. How 'tired' do you get with Achalasia? And, do you experience aches in your joints, a stiffness, esp. in the hips/legs? What do you drink in terms of 'warm' liquids? Do you drink 'hot' liquids, or are they best warm?
AlanJM donna15310
Posted
You can get tired because of lack of absorption of nutrition, so get your mineral / vitamin levels checked and you may need supplements, probably in non-pill form. 'Tired' meaning p****ed off, anxious and depressed with the seemingly insoluble situation is, I think, quite common, for very understandable reasons. Some people do concentrate on warm, soothing liquid drinks. Have the confidence to drink what suits you, but I have heard that some people appreciate cold water at times.
donna15310 AlanJM
Posted
donna15310 Tassy
Posted
I have just been re-reading the responses to my initial post, and so appreciate all the information, and especially your 'supportiveness.' So, when I get that 'pressure' feeling, almost a pain, that I can also feel in my back, does that mean the food/liquid is sitting there? And, does this also mean that it is 'stretching' or pushing out the esophagus? I really do want the Hellermyotomy...and look forward to this just becoming another 'thing' that I have to adapt and live with.
ramgobind donna15310
Posted
I have similar problem and had the myotomy in 2008.Now again problem started in April 2016. Doctors confirmed failure of mytomy operation by conducting UGI Endoscopy and barium swallow test. Doctors recommended for POEM or repeat myotomy.However one Gastroenterologist recommended medicine ""calcigard 10mg and Beson tablet before meals, With this medicine I am able to swallow food and gained weight. I am taking this medicine since last two months. You can also share this exprience with Gastroenterologist and get advice.If any body has exprience with this medicine please share
ella06819 donna15310
Posted
Hello! I feel your pain! I was diagnosed about 3 years ago and here's some tips and tricks that I learned:
Always follow food with water!!
Don't eat late at night! And if you do elevate your bed!
Hope this helps
Good luck
donna15310 ella06819
Posted
I seem to drink three - 16 oz glasses of water with supper, and two with lunch, otherwise the food does not seem to move down. And, I've stopped eating anything in the evening. thank you for your advice.
donna15310 ella06819
Posted