My Story With The Gory Bits Left In!

Hi I'm Daisy.

I'm 14 and has been suffering with achalsia for 18months and this is my story. ... Shift+R improves the quality of this image. CTRL+F5 reloads the whole page.

 

I started with achalsia in July 08 it started slowly with just denser foods feeling stuck and heart burn, me, at 14 thinking this was normal but then in Sept 08 when it had gotten worse i finally told my mum.  my mum believed me from the start, and as i was only sick once a week for the first few weeks and the acid reflux i kept getting in the back of my throat, i was displaying symptoms of an hernia that my mum had. we tried lots of stuff like gaviscon, antacid tablets, even omeprazole from the dr. but nothing worked. eventually by may 2009, i was being sick ( when i say sick, its not like normal sick, its all mucussy, foamy,lumps of uneaten food sick ) everytime i had something to eat or drink, so i got referred to hospital for a barium meal.  however i was accussed of having an eating disorder an was told to see a psychiatrist, but my mum stuck up for me and went mad and demand that i had a barium meal, and low and behold, i was diagnosed!!!!! but thats were the good news ends for quite awhile...we asked what achalasia was and was told that they didint know cos it was so rare and to go home and look on the internet, can you believe that!!!!!!!

Remember that was in may 2009......for two months i carried on with my by now none exsistant life. Before i used to play rugby for my town,bolton and also for my counties, lancashire and also the north west, but as i wasnt getting much nutrion or fluids, i was getting weaker and weaker, and as i was also being sick throughout the night and the acid reflux was happening mostly during the night, i was literally going to school being sick, going home being sick and getting straight in bed for some sleep as i was only getting afew hours each night..ihad afew test over the months to confirm my achalasia and each test come back extremely high..the nasal tube test-you drink water while the monitor how it goes down-the camera down the throat-this was a bad one as the doc said he had alot of difficulty getting the tube past my achalasia and that he had cleared my oesophagus of all the stored food, which when i ate something made it more painful as it was like throwing a ball to a brick wall, that kind of impact but when the stored food was there when i ate it was like it landing on a trampoline, if you understand what i mean. ANYWAY once again we were sent home with the promise that things would be sorted within a month, the gastroenterologist was that confident that i was even given my follow up appointment for september. As you can imagine, i was sooo excited, i had eaten anything for a year, an i am a growing girl who loves her food, and by this point i was losing alot of weight and being nearly 6ft tall and a broad built girl, this wasnt really a good look...as the weeks and months passed, i was being sick day and night arond 35times a day. i was being called anorexic at school or sometimes bulimic, which although was hurtfull was understandable, i was eating then throwing it back up straight away plus all the weight loss. i was also staring to have time off school through shear exhaustion. eventually my mum came into school and explained my illness and that i had to be able to use the bathroom at all times trhoughout lesson times and school also gave me sick bags to use. i would go out anywhere as i had to be near a toilet within a 3 minute radius at all times,so shopping, pictures, and just generally hanging out with mates at night was a no no, unless they came and sat in my bedroom all night.

Now it was time for my September appointment which there was no point in going to as nothing had been done. The doc was very angry that nothing had been done by the surgon.He then arraged for the surgon to meet us which he finally did, in October. where by this time i was really weak, iahs lost 2 an a1/2 stone, my skin was all dry and flaky, my hair was lank and colourless and i was starving and thirsty 24/7,not only that but i was really angry all the time, was sick of explaing what was wrong and what achalasia was (ecery single nurse i have met from the start and right up to writng this has never heard of this disease }, and was constantly asleep. i saw the surgeon, and even though i am only a child dealing with a rare disease that is mainly affecting adults, and the none digesting of nutrion solids and liquids, and the none exsistant life i was leading, he said that i wasnt going to be operated on soon..my mum hit the roof and demanded that something be done in the mean time to help get some nutrion in me. he gave me a script for some tablets but when the pharmacy saw the dosage they said that they had never given out a dosage that high before and that if i had had just one, it would have been fatal to me because i have low blood pressure and i had to trust the same man to operate!!!!!! anyway, i ended up having a gastro nasal tube fitted in november as i was deteriorating. this was hard as i couldnt do it myself so at 14 years old i was having to be fed by my mum. she had to come into school every single day to feed me and medicate me and hydrate me through my tube and the first few weeks was very hard as i blamed my mum for it as she took the decision for me to have the tube put in, it was all her fault and i hated her for it and would be extremely nasty to her when we were alone but nice as pie to her in front of people, butbi got used to it and was the feeling of not being starving had stopped and the colour had come back in my face and my hair was glossy again, it wasnt so bad..but obviously this did nothing to help my achalasia, just gave me the nutrition i needed, iwas still being sick and so the tube was constantly coming out. now its easy to pass an ng tube through the nose and into the stomach but i have something wrong with the back of my nose so it takes about 5-9 attempts each time to get it in and its that bad i have to have midazlopam to sedate me before they pass the tube, so for something that takes afew minutes to do, all in all it takes half a day for me as i am not allowed to go home till the sedative  wears off. by now i was being sick 45 times a day, i was tired at school all the time, i had my exams to revise for, and even though i was on anasal feed during the day and on a machine for ten hours at night, i was still losing weight..i had nurses coming to my home to help me out and give me and my mum support, i had open access to the ward as i was going that much, i had had to give up my rugby completely, i loved cooking, making stuff out of left overs, that i didnt do anymore and i i had no life as i had to be fed when i got home from school, then i had to be medicated, then i was sick between having a tea time feed and going on my machine and i had to be on that for 8.30pm or i wouldnt be in school on time, i had no time to fit a life in, the surgoen still wouldnt operate!!!!! this was continuous back and forth to have my tube put in sometimes 3 times a week, it was the medical director at my local hospital who took me under his wing and said enoughs enough, that my achalasia had got that bad it was the worst case he had ever seen or heard about and that with the fact that the tube was coming out when i was sick, and coupled with the fact that i couldnt even keep the spit from brushing my teeth down, the doc begasn to terrorise thechildrens hospital for them to do my op. That began at the beginning of december and it was the 9th february 2010, when i was finally given the op. i had to have the major surgery op as anything else would only last afew months and the surgery would give me normality for afew years, i was told that if it was successful it would work with immediate effect!! i couldnt wait, i was even scared about surgery, i was told, have the op tues, drink weds, go home thursday. it is now the 14 february 2010 an i am still in hospital,the operation hasnt worked an i am now waiting to have a tube fitted in my tummy so mum can feed me and i am on a drip cos i am dehydrated, i have got to stay in for at least another week an the docs from all over the hospital are having a meeting tomorrow to decide what to do as they cant believe it hasnt worked, and that is because i was left for so long that my condition has got as serious as it gets and i am just 14 years old. my story might seem long but its necessary to understand how bad it is not just for me but my family, who all suffer because i need 24hour access to the loo, i have thrown my ten year old sister off the toilet, made her get out the bath, picked on her when i have had a rough day, and done exactly the same to my mum and not once have they ever thrown it in my face, they have let me deal with it my way and without there understanding i would be very hard so i am greatfull for both there support and like my mu always says to people........ACHALASIA IS THE HEAD OF OUR HOUSEHOLD AND WE FIT EVERYTHING IN AROUND ACHALASIA..............What a life for us, i hope that reading this people will learn to not take " its cos its so rare " as an excuse not to do anything as soon as its diagnosed, cos thats all it is, its an excuse not to treat it straight away and not a reason x x x x x

JellytotBandit JellytotBandit
13-15, F
6 Responses Feb 14, 2010

Where are you from? My son is 13 with achalashia and they've wanted to operate for years now. They are a little cut happy here in the US. He is going to a surgeon this week to talk about the heller's myotomy and partial fundoplication. I'm scared of surgery but also praying it can normalize his life some. He has spasms, vomiting, stabbing stomach pains. This is the worst disorder. Everything I read stresses that stress makes it much worse. My entire family has this disorder but none as bad as him. None of us vomit. We just get the spasm & have never needed surgical intervention. He's the first boy in our family with it. My aunt, my cousin, my little cousin, my mom, me & my grandma all suffer the spasms since we were kids. My aunt is 67lbs. Due to it. She just doesn't want to eat because it hurts. She could probably benefit from surgery. I hope your doing better and can get back to a normal life. I know that knowledge is power. Read everything online about it and find doctors who specialize in it. Look up poem. It's a new way to do the myotomy by scope. There is so many advancements in technology that's out there if you seek it. It helps me to read these to see were not the only ones dealing with this and learn what works and doesn't work for people.

I totally understand how you feel, I was diagnosed with it when I was 16, I went through 4 major surgeries, I am now 42 years old and still suffering with it every day, it cause me dilated esophagus, you still young and you can recover from it if you get the right treatment, wish you recovery.

hi JellyTotBandit..<br />
I can totally relate to what you are goin thru.. and hope by the time I am writing this.. the doctors have been able to sort out ur issue. And what u said is true.. this is such a rare disorder.. even the celebrated gastros have very little knowledge abt this and moreover, they don't even acknowledge of what we are telling them as symptoms. It is that "it can't be achalasia" kind of mannerism makes patients like us suffer for years. Let us know what happened after ur first post.<br />
<br />
Regards<br />
Praveen.

Your details are very helpful. My daughter is only 8 and has been going through this alone in the dark for the last 4 years. ( literally half her life) it started when she was 4 she stopped eating and would even hide her food to prevent enduring the pain of food stuck behind her chest bone. The bottom of her esophagus is completely closed and I was told approximately a tear drop of fluid would pass into her stomach every 4-5 min. She lost 8 lbs from her 4th birthday to her 5th birthday and had horrible night terrors along with several other symptoms as you can imagine. All the dr.s told us it was an eating disorder. Before her 5th birthday she started eating again but would throw up every couple bites and constantly begged for food, " I am starving mommy" she would say. 2 pediatriciens, 3 different hospitals, countless walkin clinics and my family dr. Sent her for a simple barium swallow witch showed instantly she had achalasia. Yesterday she went for the tube down her nose that measures the muscles when she swallows. If you have any helpful tips on how to talk to her or comfort her in what you and her are going through I would forever thank you!

hi Siyara,
I have the same condition.. though a lot elder than ur daughter. First is.. the food for ur daughter shud be soft.. and importantly hot. It helps me swallow more easily. And another thing, I target to eat when I am actually hungry. Otherwise.. it is not acidic enough and the food doesn't go down.. and I have to keep emptying in the wash. Let me know if u want to know anyything abt my lifestyle. Currently thinking of a the HM to be done.

Regards

i am so sorry the myotomy didn't work for you. Hang in there!

Hello, I am also someone who has achalasia and I agree achalasia is not something easy to deal with for yourself nor your family but I just want you to know even though we dont know eachother well I want to help you. I have undergone the balloon surgery and also some surgery a year ago and I am living a healthy life and I hope you will to. I have also trusted and prayed to God to help me with my achalasia and he has always heard me. i know this comment wont mean much to you but I hope you will let me help you through what you are going for and I will also pray to God to help you and your family because God loves all his children and he will help them when they need help.