6 Month Update

As of July 23rd, 2013, I am officially 6 months post op from my Heller Myotomy with partial (toupet) fundoplication. 

Recap: I was suffering from random chest pains for several years, started having trouble swallowing food around 23-24 yrs of age, then drastically began losing weight and went in for more tests and an official diagnosis at age 25. If I had to classify my Achalasia, it would be type 3, the most severe. The entire lower portion of my esophagus does not propel food downwards, and the LES was completely shut. I also suffered from painful esophageal spasms daily. 

Can I eat anything I want?

Being honest, no. But I can eat most things. Let's say 90%? I should emphasize that there there are various degrees of Achalasia, and mine was the most severe. The lower half of my esophagus does not function in propelling food downwards. So if I swallow a particularly large pill (vitamins are a good example), or try eating a hamburger, or a soft shell taco, etc, I will have some difficulty. It is nowhere near as bad as before, and gulping water helps, but it certainly is not comfortable, and so I find it best to avoid certain types of food. Most of what you can eat this far post surgery will depend on how severe your Achalasia is. I read about plenty of people on the Facebook forums that can eat just as they did before! For me, I still find small frequent meals are best, and I stay away from foods hard to chew/swallow, (i.e. meats, some breads). 

Am I still in any pain?

For the most part, no. I have had a few bad days, lets say 1-2 a month, where I will suffer from esophageal spasms. However, the pain is not as intense as before, and I find that it only happens if I push my limits. Meaning that I eat to much, or eat something I shouldn't have. I did for some time have shoulder pain post surgery if I ate too much, see the previous posts for more details. 

Weight returned? Energy levels?

I always have had trouble gaining weight (darn metabolism!!). But, I have gained back about 8 lbs since the surgery. As far as my energy level, that has returned in full. I have returned to my normal level of activity, and then some!  

I think the best part of this experience (if there is one), is that I have learned to be very grateful for every bite of food I am able to eat. Appreciating the small things has new meaning. Yesterday I successfully ate a breakfast of pancakes, corned beef, and bacon, and after getting to the end of the meal and realizing I made to the end of a meal without struggling, I was ecstatic. 

For those of you out there still wondering if life will return to normal, the TRUTH is no. And if your Dr. is any good, they will hopefully be honest with you and give you reasonable expectations (as mine did). Achalasia is permanent, but surgery does make it so that you can eat and return to a "normal" lifestyle with few restrictions. This may sound glass half full, but I promise it's not! Every meal to me now is a small victory, and I am proud to show my scars. 

Please post questions or comments below, and thank you to all for your continued support!

3 tips for those with newly diagnosed Achalasia

After joining a Facebook support group for Achalasia, I have learned a lot about other peoples' experiences. Here are top pieces of advice I would give.


1) Don't wait
Many people are waiting their symptoms out. Dealing with their Achalasia on a day by day basis. While I agree the surgery is not something you should jump right in to, sometimes it is the best alternative. Waiting and continuing to suffer is no good. Also, since the food is actually stuck in the esophagus, continuing to eat with this condition dialates the esophagus further. Wikipedia does not have the best example, http://en.wikipedia.org/wiki/File:Achalasia2010.jpg, but the point is, it is not a pretty picture. The esophagus becomes stretched out. This can create further problems. Meaning the overstretched esophagus will sag. You don't want to have to have your esophagus removed. So please people, common sense. You can live with this condition, but there is a point when you should seek further medical treatment.

2) Partial Wrap
RESEARCH! Not all doctors are familiar with this condition. Yes, a wrap should be performed to prevent heartburn and acid erosion. However, only a partial wrap is needed (Toupet or Dor Fundoplication). The process of Fundoplication was really created for GERD (Gastroesophageal reflux disease) patients. This procedure was added on to Heller Myotomys after it was discovered patients post Heller Myotomy often suffered from heartburn. Even from reading wikipedia, you can see that the complications of a full (Nissen) Fundoplication consist of dysphagia (trouble swallowing). http://en.wikipedia.org/wiki/Nissen_fundoplication
So please be sure to research and discuss with your doctor.

3) Don't waste time with Botox
I keep reading about people trying Botox. That is only a temporary solution. Again, do your research. Botox and dilations are often and only short term solutions.

I hope these tidbits help. Feel free to post any questions you have in the comments.

3 Months Post HM Update

As of April 23rd, I am exactly 3 months post surgery, which was the heller myotomy with a partial (toupet) fundoplication.

Overall, I am feeling great! Especially in comparison to where I was before. I have gained 5lbs, and am no longer on any medication. I have not had any chest pain (esophageal spasms) or heartburn in the past month. Sucess!

I do still have minor issues eating. Mainly that I can not consume large amounts of food in one sitting. But, I can swallow, and eat most anything within reason. Large chunks of meat, or bread (or tortilla etc) that does not break down easy, still give me trouble. It is easy enough to avoid those things though. I still have partial anxiety when it comes to eating in front of other people. I assume this will pass with time.

Thank you for your support! I have over 600 page views. My hope is to continue to update this blog with more info on Achalasia. But as I am now in the recovery stage, the updates will be fewer. Stay tuned!

I have been promising pics, so here they are:

Reader's Digest Article

It always excites me when there is recent information out there about Achalasia. So much of what I find is outdated. Here is a link to a recent article that was in Reader's Digest.

http://www.rd.com/health/conditions/amazing-medical-mysteries-solved/2/

Always nice to know I am not alone in my journey, and that what I went through was/is "normal" for my condition.

Petition

One of my motives behind creating this blog was to create more awareness about Achalasia. It is an embarassing and difficult disease to have to deal with. Running to the bathroom multiple times during a meal, having difficultly eating (which is a public activity), and looking like you ate almost nothing at all, can be humiliating. One of the reasons I was heasitant to talk about it was because I assumed most people would think I just had a eating disorder, rather than a physical ailment.
Please help by signing this petition: http://www.change.org/en-AU/petitions/the-dr-oz-show-please-broadcast-a-segment-on-achalasia-and-other-motility-disorders#share

One of the reasons so little is known about Achalasia is due to lack of research. By creating more awareness, hopefully more will want to help fund research so that one day a cure can be found.

Thanks!

Post Surgery Shoulder Pain

I mentioned this in an earlier post, but as it is bugging me again, I decided it deserved an article of its own.

Shoulder pain is actually very common post laparoscopic surgery. Reason being the CO2 gas used to inflate the abdomen during surgery. By lifting the abdomen away from the internal organs, the surgeon is able to get a better view. This same CO2 gas becomes trapped post surgery. So why shoulder pain? The diaphragm of the shoulder is connected to the abdomen and other organs of the body via the phrenic nerve. The CO2 exerts pressure on this nerve which translates to a sharp pain felt in the shoulder. For me, that means sharp pains in my left shoulder. I had pain the first 2 weeks after surgery and it seemed to dissipate after a nice massage, but now (7 weeks post surgery) the pain has returned. Tylenol does not see to help a lot. Other tips I have found online include: using heating pads, and drinking peppermint tea, ginger ale, or carrot juice to help dissipate the gas. So far the best thing I have found is a nice soak in a hot tub. I will be sure to update this post though if I find another solution! 

source: http://endometriosis.org/resources/articles/post-surgery-ailments/

The Little Things

If this disease has taught me one thing, that is to be thankful for the little things in life.I found a good place to get my lunch at. I tried a "Stawberry Hulk" today, which has a whopping 964 calories in it; just what I need to gain back the 20 lbs I lost!! Also, the slogan is perfect, chewing is over-rated. For those who suffer from Achalasia, we all know blended things are easier to swallow.
http://www.smoothieking.com/smoothies/smoothie-detail.php?id=62

Recovery - Week 4

It is now 4 weeks post surgery, and 3.5 weeks past when I was released from the hospital. I have gained back much of my energy, which is great. Still not gained back any weight, but that is due to my restricted diet more than anything else. Right now I am on soft foods, and what I find is that while I do not have trouble swallowing, my capacity for how much I can consume has greatly diminished. With liquids, I could eat a lot more, with more solid/soft foods, I find I can eat about a half cup; pressing myself beyond that leads to feeling uncomfortably full. But the recommendation is about 6 small meals a day, so that makes sense. I moved up my check-up appointment with the doctor. It was supposed to be at 6 weeks, but as I am feeling pretty good, and getting stir crazy at home, I decided to go in earlier and see what she says.

For those out there going through the same thing, recovery is a slower process than I thought it would be. I am not yet eating normally, but I am eating much better than before. Prior to the surgery, I was unable to even consume most liquids, and could eat only small meals before feeling the need to regurgitate. I have not thrown up at all since the surgery, which is excellent. 
Physically, I feel almost at 100%. However, I still find that I get tired much quicker after doing small things like cleaning the house, or going out shopping. So overall, I still need to take it easy.

The suggested recovery time is 6 weeks. At 6-8 weeks I can start to resume a normal diet, and after 8 weeks I can return to working out/lifting/stretching/ etc. I will check in at that time to let you all know how I am doing. 

Last comment/side note: I find it interesting how much the weather effects me. Michigan is mostly overcast during the winter, and on those days I find I just want to say in bed doing nothing. Today was sunny, and I was motivated to get out of bed earlier, and even grab coffee at a local coffee shop. Just think, if I had decided to recover in a sunnier state, I could have recovered more quickly!

Day 1 at Home

First day full day at home on the liquid diet. I have to admit, it is torture watching my husband nom down some Doritos and nachos from Taco Bell. Still a few weeks out before I can eat food like that.  I am very happy to be drinking liquids normally though, so I should not complain too much. Some may wonder, what is on the liquid diet? Here is an ongoing list of what I have come up with:

• Coffee
• Tea
• V8 Juice (the one that is 100% veggies and fruits)
• Protein Shake (I use ice cream as the base, add protein powder, honey, and almond milk)
• Carnation Instant Breakfast Powder (with Almond Milk)
• Cream of Chicken Soup (instead of adding 1 can water as instructed, try adding milk, much tastier!)
• Cream of Celery Soup (same as above, try adding milk!)
• Really any cream based soups without any chunks of meat or veggies, beef broth and chicken broth are also good, just very bland. 
• Cream of Wheat
• Coco Wheats
• Jello Vanilla and Chocolate Pudding Cups
• Greek Yogurt w/Honey
• Frozen and refrigerated Yogurt (Go-Gurt by Yoplait) 

I am supposed to avoid carbonated beverages for a while. So those are not on the list. Also, I will work on expanding the list over the next 2 weeks, since I am sure I will get bored of some items. Overall it is fabulous to be eating more normal.  I feel like I could take on a steak, but will refrain while my esophagus continues to heal.  

Home at last...

     After checking in at the hospital at 11 am Wednesday  I have now returned home at 10:45 am, Saturday. In total I was in the hospital 3 nights and 4 days. 
     Overall feeling much better. Abs are still very sore. And there is some slight pain and discomfort in my shoulders. This is apparently typical with laparoscopic surgeries.  For those curious, the shoulder pain is because during the surgery C0₂ is used to inflate the abdomen. This gas affects the Phrenic Nerve. When the C0₂ gas irritates the diaphragmatic nerves, that pain is directed upwards through the nerve connections, which leads to aggravating the shoulders. I was sent home with medicine for pain, nausea, and heartburn (as a precaution).
     While in the hospital I progressed from clear liquids (broth, tea, juice, etc) to full liquids. Breakfast today was cream of wheat, vanilla custard, coffee with cream and sugar, and orange juice. The vanilla custard was surprisingly yummy. So for now, I have 2 more weeks  to go of liquids only and then I can move on to soft foods.
     So why so many days in the hospital? My electrolytes and overall nutrition needed a lot of work. I went into the hospital weighing 96 lbs, and came out at 102. Yay for IV's and diligent nurses for helping restore my overall health. I think it will be a slow recovery, but for now I am just happy to be at home. :)

Post Op

Well, may I first say, "Good Morning"? After all is it 6am, and I cannot fall asleep. Decided I would add to my blog.

     On Wed, Jan 23rd I checked into the hospital at 11am. From there I was hooked up to 2 IV's and an arterial line was put in. The Doctors and Anesthesiologists all stopped by to ask more questions, and answer more questions. Around 1:15pm I was taken back to surgery. Thanks to lovely sedatives, I do not remember much. I remember seeing the robot, and being slid from my bed to the operating table, but that is all.
     I woke up in the recovery area, and remember being really upset at how drowsy I was. I strongly wanted to be awake to say hi to family and friends, but was totally out of it. While in the operating room, they placed a catheter, and gave me oxygen, I woke with items still in place. By 4am the following morning (Jan 24th), I was able to get up and walk around a bit, so they removed the catheter.
     For those who are wondering what it feels like post surgery, I would say like getting hit by a large truck. Ever run too much or too hard and you feel like you can use your abs? Yea that is me. Even still. Today is the 25th, they are speculating to let me out Saturday (tomorrow). I think I need to be more mobile and in less pain in order for them to discharge me. I think the pain will take some time though, the 7 lovely scars on my abdomen aren't going anywhere fast. Also, the nurses seem to check in quite often to change my medications, and take vitals, etc.. I did have a test early yesterday morning, that went well. This means I can now have clear liquids. Lunch was beef broth, tea, cranberry juice, and jello. Dinner was chicken broth, tea, apple juice, and jello. So far swallowing does seem better, except for the fact that my throat is super sore. That is due to the tube placed down my throat to help keep me breathing while under heavy anesthetic. It will be a slower recovery I feel.  Well that is all the updates I have for now. So far I have been very impressed by the service I have received, and look forward to going home where I can truly relax and recover.

Pre-Op Appt

Oh the never ending onslaught of doctors appointments! For those curious about the entire process, I decided I would continue documenting up until I am fully recovered.

     I spent a partial afternoon (from 2:30-4:30) at St. Joe's, running around for various tests. My afternoon began with a consultation. I met with a nurse who explained where I will check in, what I will be hooked up to, how long the operation is (3 hrs), and what happens afterwards. After the operation, I will be moved to recovery, where my vitals are checked every 15 mins and I am closely watched. Once I have woken up fully from the anesthesia, I will be transferred to my room. She also gave me a handy device that I am supposed to suck air into every so often once I am awake and out of surgery to get my lungs strengthened again. Not sure what it's called or the real purpose, medical professionals, feel free to comment on this if you have more info!
     What else? Hospital stay is 2-3 days. First day will be clear liquids only, and only after they have done a few tests to confirm that there are no leaks. After that I progress to a liquid only diet for 2 weeks. Then soft foods for 2 more weeks. Around 4 weeks I can expect to return to work, and ease myself into a more normal diet. It was recommended to avoid meats and breads for a while, as those may be uncomfortable until my esophagus is fully healed.
     All in all, I had a nurse consult, an EKG, blood samples, urine samples, and an x-ray. 2 hours later I returned home and took a nice nap. If anything odd shows up on the tests, they will let me know, otherwise surgery is still on schedule for 5 days from now and I cannot wait! At this point I am down 12 lbs; so while it would have been nicer to recover during a month when the average temperature is slighter higher, I would much rather have the surgery ASAP.

     In closing, I have to say, the seriousness of the surgery is really starting to hit me. Signing forms that specify "and DEATH" as one of the side effects is pretty daunting. No, death was not capitalized, I did that for dramatic effect. Stay posted for more updates. I am curious how much I will remember after the anesthesia and other drugs wear off. I will try my best to take notes for others out there who are dealing with this and want to know what to expect. Comments and questions are always welcome. Thanks!

Surgical Consult for Heller Myotomy

Do they really have to tell you the worst case scenario? I suppose that is rhetorical, because yes, they do. It's called informed consent. Well, other than learning about all of the nasty horrible things that can go wrong, the consult went well. Dr. Vita McCabe at St. Joseph Mercy Hospital in Ann Arbor did a great job addressing all of my questions and concerns. So here is the low down:

• 2-3 Day Hospital Stay
• 1 Month Suggested Recovery
• 3 Weeks Soft Food Diet
• No Heavy Lifting (over 10 lbs) for 2 Months

They are looking to fit me in the next 2 weeks or so. They will perform a Heller Myotomy with a partial toupet fundoplication using the robotic system. What happens next? A pre-op appointment where they perform various lab work and tests. And then no eating or drinking midnight before the surgery.

Update: They just called, I am scheduled for Wed, Jan 23rd in the afternoon.

Treatment Options

There is no known cure for Achalasia. There are however, several treatment options to help cope with the symptoms. **I should note, that these are my personal opinions and conclusions. I am not a medical professional. Please consult your physician for further information on treatment options.**

Option A - Medication
First option would be to take certain medications such as calcium channel blockers that lower the pressure of the LES (Lower Esophageal Sphincter). These medications tend to have unpleasant side effects. Botox injections also fall under this category, but the injections only last a few months. Overall medication is reserved for those who are too high risk for surgery or dilation.


Option B - Balloon Dilation
Using this option, muscle fibers are stretched and torn slightly, by inflating a balloon that is placed inside the esophagus. I did not go with this option because there are chances of perforation. The forceful dilation also has chances of creating scar tissue that would make a later Heller Myotomy more difficult. Also, chances are very high that repeat dilations would be necessary.

Option C - Heller Myotomy (Surgery)
Based on my research, laparoscopic cardiomyotomy has a success rate of 90%. This is the highest of the 3 options.(I plan to create a page or post with the links and resources I used in my research. Stay tuned for that.)
In this procedure, a cut is made along the esophageal sphincter muscle. As a follow-up to this, a partial fundoplication is usually performed. This involves wrapping the upper part of the stomach around the lower esophageal sphincter to strengthen it. This is the most permanent of the options, and long lasting.

Option D - POEM (Peroral Endoscopic Myotomy)
POEM was invented/created by Dr. Prof. H. Inoue in 2008. POEM is a newly developed endoscopic procedure intending eternal cure from the disease. In POEM procedure, the esophageal myotomy is done similar to conventional surgery, but with no incision. (Source: http://www.achalasia-poem.net/index.html).
This operation is still fairly new. There have been excellent short term results, however, long term results are still being awaited. Also, limited facilities perform this procedure.

I choose to go with Option C. Throughout my research, I found the risks were low, and chances of needing repeat procedures minimal. I have a surgical consult scheduled for Monday, January 14th, 2013.

How It Began and Diagnosis

Initially, I thought I had GERD. I often experienced chest pain, and associated this with heartburn. After years of heartburn that seemed unaffected by various medications (Tums, Zantac, Prilosec, etc), I started having trouble swallowing food. It got to point where it was a real struggle to eat; I was also regurgitating undigested food in the morning, as well as at mealtime if I overate. I finally decided to get a referral from my primary care physician to get things checked out. The overall assumption being that my heartburn led to scarring in the esophagus, and a simple stretch of the esophagus would fix my problems.

There are 3 main tests to diagnosis Achalasia. Below I go through my experiences with each.

Test 1- Upper Endoscopy/Esophagram/EGD
First test. Probably the most nerve racking one, as I had to be put under anaesthetic for the first time ever. Overall, this test was probably the most pleasant, since I was asleep for it.
After being put under, the Doctor inserts a small flexible camera down my throat to observe the esophagus. Should be noted you cannot eat for 12 hours prior to this one. Actually, all of the tests (EGD, Barium Swallow, and esophageal manometry) require no food, and no liquids at a certain point before the test. Talk about annoying.
Results: After the test, the Dr told me "Everything went fine, but..." But is never a good thing in the medical world, or so I feel. So what came after the but? Basically he explained that they didn't see what they expected. There was no scarring, but even more odd was the fact that food was still present in the esophagus, even after my not eating for 12+ hours. Also, there was a high amount of pressure, and they were not able to get the scope into the stomach. The Dr recommended I go for a few more tests in order to determine what was going on.
At this point I was able to use the wonderful world wide web and Google to self diagnose myself. Which was a funny feeling. YAY, I self diagnosed myself correctly, but it's an incurable disease that will need surgery. Kind of a kill-joy. Oh well, on to the next tests!
Test 2 - Barium Swallow/Esophagography
Second Test. Really not so bad. Other than the whole not eating beforehand thing. During this test, you are asked to drink Barium (yum), while standing in front of an x-ray, so that the path of the liquid can be traced. I started out by drinking some gas crystals, to help open up the esophagus. After, while standing in various positions, I was asked to take various sips and swallows of the barium. It did not taste too bad, just very chalky. This was by far the coolest test, since I could see what was going on. I could see the liquid go down and then abruptly stop before entering the stomach. Which both the radiologist and nurse assisting her noted as odd; the nurse had never seen that happen before, and the radiologist mentioned she did not see that often. She also noted that the muscles seemed to be failing to propel the liquid.
Results: Findings were all typical with Achalasia. None of the fluid, except for a very tiny trickle, entered the stomach.

Test 3 - Esophageal Manometry
Third and final, and most unpleasant of the tests. This test was only supposed to take about 20 mins. I was there about an hour. During this test a small (yeah right!) tube is passed through your nasal cavity, down the throat, to the LES (Lower esophageal sphincter). This records the strength and coordination of the muscle contractions in the esophagus, as well as the LES. So why did it take an hour you ask? Well, the tube was not as small as I would have liked. The Dr. struggled getting it past my nasal cavity. After 20+ mins of trying to shove a tube in and out of my nose, he finally got it to go past the nasal cavity and into my throat. Of course much gagging and uncomfortableness followed. The tube is placed at the very bottom (about 35 cm from what I recall) of the esophagus, and the monitoring begins. Every so often the tube is pulled further out, so measurements can be taken all the way up the esophagus. I thanked the nurses profusely after this test; they were amazing at keeping me calm throughout the process.
Results: The LES and lower muscles in the esophagus are definitely broken. Sorry that is not a medical term. But that word about sums up how I felt that day. Broken. Mentally, physically etc. The test was exhausting, but at least there was final confirmation. I have Achalasia. I am part of the 1 in 100,000 a year that gets diagnosed. The .00001%...or something like that.

Conclusion
After all tests were completed, one of the physicians at the Center for Digestive Care followed up with me to let me know the diagnosis: Achalasia.
At this point, I had done vast amounts of online research, and already knew my options.
I decided to go ahead and schedule a surgical consult for the Heller Myotomy.

Intro

Introduction

"Sir Thomas Willis described achalasia in 1672. In 1881, von Mikulicz described the disease as a cardiospasm to indicate that the symptoms were due to a functional problem rather than a mechanical one. In 1929, Hurt and Rake realized that the disease was caused by a failure of the lower esophageal sphincter (LES) to relax. They coined the term achalasia, meaning failure to relax." Source: http://emedicine.medscape.com/article/169974-overview

Failure to relax? That sure sounds like me.....

Hi, My name is Janice, and I have a very rare esophageal motility disorder.
Isn’t that a mouthful! Still seems weird to say to myself, I am one of those who never wants to admit when they are sick. But I am sick, how annoying. I guess no one is perfect, and I am far from it, but I still find it hard to cope. I started this blog in an effort to help educate family and friends, as well as others who may be dealing with this disorder. I was diagnosed officially in January 2013.

Now for the mushy stuff: I want to thank my husband for his unwavering support and encouragement as I continue to deal with this disorder.

What is Achalasia?
“Achalasia is an acquired neurodegenerative disease of the esophagus in which there is a selective loss of inhibitory neurons in the ganglia of the enteric nervous system within the gastrointestinal tract.”

Source: DiMarino, Anthony J., and Stanley B. Benjamin. Gastrointestinal Disease: An Endoscopic Approach. Thorofare, NJ: Slack, 2002. Print.

In plain English? The lower muscles of the esophagus fail to push/propel food downward towards the LES (Lower Esophageal Sphincter), also the LES fails to open in order to allow food into the stomach. Meaning, when I eat, food continues to sit in my esophagus for long periods of time.

Symptoms include difficulty swallowing, regurgitation, sometimes chest pain, and over time weight loss.

Useful Medical Article: http://www.aerzteblatt.de/int/archive/article?id=123990