3.5 Years Post Heller Myotomy and Fundopliction

For the first time, I ran into a fellow Achalasia sufferer in person! Being that this disease is rare (1 in 100,000 occurrences), it was nice to meet someone who as been through the very same struggles as myself. She had her surgery at Mayo Clinic, which is surprising as she is from the same area of Southeastern MI as myself. That being said, I think it heavily depends on the doctors you see early on and whether or not they have experience with Achalasia. I was fortunate enough to see Dr. Larry Adler, at Huron Gastro in Ypsilanti, who was familiar with the disease. We pretty much knew after my first test (an upper endoscopy) what I had, and used the remaining tests as confirmation before scheduling the surgery. (That't not to say I didn't go through many hoops with my primary care physician and various types of heartburn medicine before she finally referred me there!) What this all leads to, is I realized it may be helpful to post how I am doing now, 3 and a half years, and a baby post surgery, and still suffering from Achalasia.

Does food still get stuck?
Yes, of course. I had a more severe form, so the entire lower half of my esophagus muscles fail to propel food downwards. I usually just chug water or some other fluid to help the food pass. I am also cautious about how much I eat, what I eat, and to chew my food as much as possible. There are of course times I forget, and end up in some pain as I wait for food to clear, but overall, no where near what I was experiencing pre-surgery.

Weight Gain?
Sort of? This one is tough for me. I feel like I still can't eat as large of meals as I used to before I had Achalasia. I try to eat lots of small meals, but between long work hours, and chasing a toddler, it can be hard. I was able to gain weight and have a very healthy pregnancy. So I know the possibility is there! Just need to make the time.

Spasms
With my type of Achalasia, I frequently had debilitating chest pain before. These are usually referred to as esophageal spasms. I will still get them from time to time. Overall less than 3 occurrences a month, some months none at all. The intensity is no where near where it was before. For some, this may sound scary, but in comparison to what I endured before, these are nothing. Most people probably suffer heartburn at a similar pain level. Which brings me to....

Heartburn?
Nope!! Happy to say Dr. Vita McCabe and the DaVinci robot at St. Joseph Ann Arbor did a fantastic job on the Fundoplication. Not so tight I can't swallow food, and not too loose as to cause me any heartburn. I even made it through pregnancy with minimal heartburn.

Final Thoughts
I go through most days not even thinking about my Achalasia. I still have a love/hate relationship with food, which I don't know if I will ever overcome. When you love food, but struggle to eat it, it's not something you can forget about. I have to actively adjust how I eat to prevent myself from suffering. I can't eat lunch in 15 mins, or scarf down a sandwich, I have to take my time. But that is not such a bad thing!

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/