Finished with the upper endoscopy. I recovered pretty quickly. Propofol is my sedative of choice. No long groggy hours. They did a dilation and a botox shot and pulled some stuck food out of my esophagus. I figure 1) I need to be more careful about what I eat and 2) this buys me several weeks or couple months to figure out what's next. I'm going to go ahead and meet with the surgeon and discuss the Heller Myotomy or the large balloon dilation. I had a hot soy milk steamer on the way home then some oatmeal at home and I feel pretty good.

Another upper endoscopy tomorrow for a regular dilation, botox shot, or both. That should provide some relief. Then I'll talk to a surgeon soon, Dr. K2., to see about doing the Heller Myotomy.

I haven't kept down solid food since lunch Monday. I'm doing pretty well with water, Gatorade and almond milk. I'm waiting for a call from Dr. K. to see when he can do a procedure to open up my throat today or tomorrow. Then we can discuss steps to take after that, whether it's the large balloon dilation or the Heller.

I had been doing well after the second botox treatment. I had the occasional sensation of some food moving slowly down my throat but that was manageable. Then yesterday I had a hard boiled egg with lunch. I regurgitated the yolk and since then have been unable to keep anything down except sips of hot water. This sucks. Having had two botox treatments in four months, I'm sure Dr. K. will be in favor of the Heller Myotomy instead of another botox shot. I don't like the idea of surgery, but if I can't keep anything down I don't see that I have much choice. I have been taking my anti-inflammatory supplements but I've never perceived that they made any difference. With the reaction I have to some foods and not others, there's obviously some food reaction component. Maybe I should have the IgG test again to see if my food sensitivities have changed. I've probably been too lax in paying attention to what I eat since it's been such a relief to be able to eat a greater variety of foods following the botox treatments. I'm trying to drink a smoothie with almond milk and sweet potato now and so far I can keep it down.

Botox at 3 months

About Monday September 27th I started having the sensation that a pill was stuck in my throat. And that may have been the case. I'm taking a variety of supplements in an attempt to address the underlying inflammation issues and one of those pills (I suspect the large Mag Glycinate pill) may have become stuck. It took about a week for that sensation to pass, or at least move lower, and during that time I experienced again many of the pre-botox achalasia symptoms: the feeling of food and liquid getting stuck, then releasing, belching hours after eating, that clenched "golf ball in throat" sensation.

Long story short, I had another upper endoscopy today. The last time we did this I had a demorol / vicodin cocktail and I was groggy for hours and hours.
Today I had propofol and I'm pretty damn alert already, less than three hours after the procedure. I'm still not about to drive a car and I'm sure I'll sleep well later, but I'm doing fine now. And I'm hungry. Having some potato leak soup now.

They found some fluid accumulating in my esophagus that was causing problems swallowing, but no food accumulation or pills or anything else, so that's good.
They went ahead and did another botox shot so I should have months of relief again.
During that time I need to seriously consider getting the Heller Myotomy surgery in order to have a permanent solution.

I can continue to hope for some improvement with the anti-inflammatory diet and supplements but I don't know if that will provide enough relief.

Botox at three weeks, almost

At three weeks things are going well. I've tried several foods I haven't had in months including pizza and a variety of items at an Indian buffet and I didn't have any swallowing issues with any of it. Like I said in the last post, that "block and release" sensation has been replaced with the "things are moving slowly, steadily downward" sensation.

But I also get, maybe four times in three weeks now, a sensation that my throat is tightened up and clenched. It lasts for several minutes then goes away. And today, when swallowing food, even soft oatmeal and yogurt for breakfast, my throat feels sort of bruised. It's not a big deal, just something to take note of and see if it persists.

In general I'd give the botox treatment a "thumbs up" at this point.

Botox - day 6

The change in swallowing has been gradual and I think I can say now that the physical sensation of food getting "blocked" then "released" has been replaced with the physical sensation of food slowly sliding down. It's still a bit disconcerting that there's a physical sensation at all (perhaps I'm overly sensitized to it) but I am perceiving an improvement.

I haven't had any sensations of reflux and I'm still sleeping with a wedge pillow.

After 4 weeks of putting all my meals through a blender, I've stopped blending. I'm still choosing soft stuff and that's working fine.

Getting back out to restaurants again: last night I had a bowl of Chirashi sushi. I avoided the ginger and wasabi although I miss both quite a bit. I had no problems with the variety of textures found among the rest of the items: tuna, salmon, egg, asparagus, roe, eel, I'm not quite sure what some of that was, rice, plus a couple avocado cream cheese rolls. Did fine with the seaweed too.

I'm ready to venture forth cautiously...

Botox - Day 1

The procedure went well, with no complications. They started about 5:00 pm and I slept for 7 or 8 hours from my demerol & vicodin cocktail. I don't remember the car ride home but Tammy tells me I had a chocolate shake from Steak and Shake. After waking up around 1:00 am I've slept on and off the rest of the night.

Dr. K. says it will take a few days for the botox to take effect and until then I'm sticking with liquids and soft foods. I look forward to adding other food groups like "chewy" and "crunchy".

More later...

Next step

I discussed three options with Dr. K.:

1. Heller Myotomy. It’s permanent. I'm not sure I'd like the results. There’s some risk. I’m not ready to go there.

2. Botox. Very low risk. Good for maybe 6 months. If I don't like the results, they fade in 6 months. If I do like the results, maybe I'd like the results of the Heller Myotomy.

3. Balloon dilation. Higher risk. If it works, I get 4 or 5 years of relief. If it fails I get an emergency Heller Myotomy. Not gonna roll the dice on this.

We're doing the botox treatment next Thursday.

Background - 1982 to 1985

Late summer of 1982 I suddenly started having frequent diarrhea. I saw a gastroenterologist, Dr. Z., and was diagnosed with ulcerative colitis. For the first year I was on Azulfidine, Hydrocortisone and Immodium. I responded pretty well at first and for most of the first year my symptoms were under control.

By August of 1983 my symptoms were coming back more frequently. Dr. Z. switched me to Azulfidine, Prednisone and Immodium. The second year on meds was a rollercoaster. My symptoms came and went depending on how much Prednisone I was taking. The idea was that I would reduce the dosage of Prednisone until I got off of it completely. That never happened. When the dosage was high, my symptoms went away. As the dosage was lower my symptoms came back. That continued for a year until the symptoms were persistent enough that I was hospitalized in August of 1984.

I had surgery for a total procto colectomy followed 10 months later by surgery to construct a K-pouch ileostomy. I haven't had surgery or medication for ulcerative colitis since then.

Today Dr. W., as well as my nutritionist, J., think the achalasia and ulcerative colitis have the same underlying cause which is chronic inflammation. I told J. that I thought that made sense but until this came up I thought the whole ulcerative colitis episode was behind me. J. said "it's back, you've had a long honeymoon"

Background - 2010

From June to December of 2009 I had dropped from 185 pounds to 145 pounds. After removing the foods that produced the strongest response on the IgG test, my weight stabilized in the mid 150s which is where it still is today. One nice side effect of the weight loss is that my blood pressure came down. On advice from my cardiologist and primary care physician I stopped taking blood pressure meds. I've been monitoring my blood pressure and it has remained normal.

In April I saw yet another gastroenterologist, Dr. P., and had a 24-hour pH study which ruled out reflux. Dr. P. also ordered another upper endoscopy which indicated that my lower esophageal sphincter was not relaxing. This is the first time anyone suggested it could be achalasia.

The regurgitation had mostly gone away but there were still times it seemed that my throat was clenched or blocked. Eventually food or liquid would usually pass, but sometimes came back up. There were also times, particularly if I was salivating or anticipating food, I would spit out large quantities of foamy saliva. On a Friday in mid June I could no longer keep anything down. Even a swallow of water would come back up in a few minutes. 24 hours later I was in the ER for another upper endoscopy which found bits of food sitting in my esophagus, blocking other food from passing. The doctor who supervised the upper endoscopy speculated that the food had been there for days or weeks. The food was removed and since then I've been on a full liquid/soft food diet. I started working with another gastrointestinal doctor, Dr. K., who ordered my second esophageal manometry. The results of that test indicated that my lower esophageal sphincter was not relaxing enough and that my throat was not contracting in a way that would effectively move food. Now I had the diagnosis of achalasia.

Background - late 2009

When I started regurgitating food more frequently I tried to find some correlation between what I ate and when I regurgitated. Some foods could cause an immediate reaction. I started to eat a cream cheese pumpkin muffin once and my throat immediately seized up. The last time I had a beer (Beck's Dark) my throat seized up on the first gulp. Both times I got that golf-ball-in-throat sensation but this time it didn't include the radiating pain. It seemed like wheat or yeast or hops or fat could be culprits, so I eliminated all that. I saw an allergist who tested many substances in many locations on my arms and back. He concluded I had absolutely no allergies whatsoever. I knew that was wrong because I at least had distinct seasonal allergies.

In July 2009, Dr. S. ordered an esophageal manometry. It was a confusing experience for me. During the test, the two women administering the test marveled at how random and uncoordinated my swallowing was. It was their off-the-record opinion that my swallowing was "really messed up". Dr. S. looked at the results and declared it was "within normal ranges". Last week Dr. K. looked at those 2009 results and, after hedging quiet a bit about how they were done on a different machine and they were hard to read and he wasn't sure he had the complete report, etc... offered that he thought my lower esophageal sphincter was slightly more relaxed then than it is today but my contractions that should push food downward were clearly not happening correctly.

Dr. S. put me on Nexium. At first it seemed to help. However, after a couple weeks I stopped digesting anything. The stuff I was regurgitating was more recognizable and more intact. The stuff I passed through my digestive system was also more recognizable and more intact. I took myself off Nexium and started digesting things again.

By late summer I was regurgitating more frequently, eliminating more foods and losing more weight. I was eating a lot of rice (rice, rice noodles, rice milk) and in an attempt to slow the weight loss I started drinking several bottles of Ensure each day. By October I was sleeping sitting up and still regurgitating overnight, sometimes more than once each night.

I heard from a friend about a doctor who did a test for food sensitivities that found reactions that hadn't shown up on other tests. I saw Dr. W. in December and he ordered an IgG anti-body test. It indicated I had severe reactions to corn, rice, dairy, yeast, cashews, coffee, peppermint, chocolate, sesame and bean sprouts while I had lesser reactions to several other foods. I removed those foods from my diet and immediately stopped regurgitating overnight. Over the next few weeks as I continued to refine my diet the regurgitation would come and go but it was never so intense as it had been before I got the IgG results. After several weeks I was regurgitating a bit more so I went over the list again. There was peppermint in my toothpaste so I changed toothpaste. Again the regurgitation immediately improved. Dr. W. recommended several dietary supplements that would bolster my digestive system, supply needed nutrients and reduce inflammation. Dr. W. suspected that chronic inflammation was the underlying cause of my current problems as well as the ulcerative colitis I had in the 1980s.

Around this time I saw a gastroenterologist, Dr. R., for a second opinion to compare with Dr. S. He heard my story and said I should take Nexium. I immediately said "No" and explained my Nexium experience. I described the food supplements I had just started and he shook his head dismissed the idea that those could help. Since I didn't want to do Nexium, he suggested I try the supplements for a while then come back in a few weeks. I didn't go back.

Background - early 2009

I had put thoughts of that gurgling sound behind me. Then sometime in March of 2009, after taking the kids to a school function, we had a late evening meal from McDonalds. I don't usually do fast food so this was a particularly high-fat, greasy meal for me and we were eating around 9pm, later than I would usually eat such a quantity of food. And when we got home I had a craving for peanut butter, so I had a slice of bread with lots of peanut butter. Then I felt like there was a golf ball in my throat. And there was pain radiating through my chest. While Tammy dialed 911, I took my blood pressure over and over. Each time it went up by about 10 points until it topped out around 200/100. Again to the ER at the heart hospital and again they said I had not had a cardiac event. Maybe it was an esophageal spasm.

By June I started having symptoms like reflux and I started regurgitating food. I would sometimes regurgitate food in the middle of the night. Waking up as food enters my mouth is a great disincentive for eating. My weight had been hovering in the mid 180s. My weight loss that extended through the end of 2009 started here.

Background - 2008

Sometime in early 2008 I started hearing a gurgling sound in my throat each time I swallowed. I could swallow food, or drink or just saliva and a couple seconds later there's this gurgling sound that could be heard across the room. It was annoying but it didn't really affect me. I didn't change what or how much I ate.

Within a couple weeks of when the gurgling started, I woke up in the middle off the night one Saturday and my heart was pounding. By the time Tammy got me to the ER at the heart hospital by blood pressure was 200/100. Tests indicated I did not have a cardiac event. I started on blood pressure meds (Metoprolol) and left the next day.

When we tried to puzzle out what had happened, Tammy suggested sleep apnea was a possible answer. So I started down that road and over the next several months underwent several sleep studies, tried the CPAP, BiPAP and VPAP machines, hated them all, never could fall asleep with any of them and always ripped off the mask after about 45 minutes max. For now I have untreated central and obstructive sleep apnea.

By late spring, early summer I saw a gastroenterologist, Dr. S., about the gurgling sound. First we did a barium swallow study and that didn't indicate anything. Sometime in the fall I had an upper endoscopy and a dilation. Dr. S. didn't see anything remarkable. Following the dilation the gurgling was either fainter or gone so I didn't think about it much for a while.

Introduction

Yesterday I received the results of the esophageal manometry I had last week. It confirmed that I have achalasia.

It's taken more than two years to figure that out. I'll go back and describe the steps that got me to this point, starting in early 2008 with a weird gurgling sound in my throat that happened every time I swallowed.

There are several treatment options. I'm not ready to consider surgery so I plan to delay that decision by choosing the temporary botox treatment. I'm also pursuing the treatment of chronic inflammation based on the idea that it could be the underlying cause of the achalasia, as well as the ulcerative colitis I experienced in the early 1980s.

I hope that by telling the story of how I finally got my diagnosis and the actions I'm taking to treat it, this could help someone who has similar symptoms, and that I could learn from any thoughts or comments people would like to share.