Keeping Hope during this frustrating Achalasia Journey

I was diagnosed with “possible” Achalasia in October 2016 while hospitalized for what they felt was pancreatitis. Severe abdominal pain, vomiting, two previous hospital stays with pancreatitis made this admission based on past severely high lipase blood results. I don’t drink, never have (don’t like the taste). I’d always had this annoying problem with liquid and solids getting stuck going down, I’d either stand up and begin sweating through the pain of waiting for it to “make it down “ or  I would have to spit it out. 

During the times I didn’t suffer from this, I never had any problems with food causing any discomfort, no burning, no coughing, nothing coming up into my mouth.

But, when I experienced these new horrible episodes of pancreatitis it was felt by all the doctors and specialists that my systemic Lupus was causing pancreas and bile duct problems. Al I knew was I was feeling worse and the episodes of liquid/solid STOPPING on its way down was increasing and would finally end up in the hospital with the focus on my pancreas. This last admission had my weight going from 114 lbs. to 88 lbs. 

I’ve been afraid, miserable and worried they were missing something, that my swallowing problem was playing a larger part in this constant pancreatitis issue where, once a CT Scan was performed my pancreas and bile ducts were both dilated but I didn’t have pancreatitis. It was labeled “possible pancreatitis” and treated as such (a diet of ice chips for 7 days, then discharged with medications for nausea, heartburn and acid reflux). None of the medications helped when the episodes came.  Then one CT Scan showed “something, a mass, near duct of pancreas” and immediately an EUS was scheduled, performed by a GI Specialist whom I have huge respect for since all this began. He was able to rule out any possible cancer mass but did find something he was familiar with and wrote it as a side note on the pictures he took during the EUS. He wrote “Achalasia?” next to the photo of a tiny hole or opening in my esophagus. When I woke up he told my husband and I that pancreas looked great, but I should follow up with his colleagues who handled esophageal issues. Before I could I was to have another attack and admission in hospital and now was severely malnourished and had a new issue, dangerously low blood sugar. 

During this stay they performed another EGD, another EUS, a CT Scan, MRCP and a barium swallow test. Thankfully the barium swallow showed my sips of liquids were stopping at different places then coming to a halt and not entering stomach. This is when I’d have the severe pain, never any burning but rather pressure like my esophagus was being prayed open. Between this and the additional EGD, EUS and failed attempt to get a nasal feeding tube in, I was told yes, we feel it’s indeed Achalasia but the esophageal manometry must be performed. Once that is done and it shows what we suspect, we can discuss your options for surgery because you are wasting away and this needs to be fixed. 

I was so glad and hopeful. 

But, that was over a year ago and I’ve not gotten surgery. I did get to consult with a surgeon in their clinic, a GERD specialist, and he did perform the esophageal manometry and it backed up his collegues findings and diagnosis of Achalasia. However, he felt he needed to perform an EGD for himself as he believed I had GERD based on the fact I was “spitting up” which I described as throwing up anything that eventually did make it through after hours of severe pain. 

My surgery became a diagnostic EGD, with a balloon dilation done during it so they could get some biopsies. I remember right before falling asleep the surgeon approaching and saying he’d look but he felt I had GERD, not Achalasia and that Botox was an option.

I woke in recovery fine except I had a nasal tube inserted for the 24 hr. pH test and was gagging and struggling with it. The resident took it out and tried several times to reinsert but I wasn’t able to tolerate the process at the time. The resident was very nice and tried so hard but finally the surgeon who was overseeing said forget it, go ahead send her home. 

And that’s where my story stops. 

I received a phone call from the surgeon’s nurse a week or so later saying biopsy results were back and I now had Barrett’s esophagus. I asked what was done during the EGD because I’ve been having worse problems with swallowing now, and didn’t know if it was normal when you have lupus to get inflammation of the esophagus and I just needed time to heal. I was told that he had done a balloon dilation. I didn’t know this. I said, oh! Ok, well I don’t think it helped because I’m worse. What should I do and was the POEM going to be scheduled? He didn’t know but suggested I have a follow up with surgeon (I live 3 hours from this clinic and hospital). 

This is when I took to looking online for other people’s experiences and read many of your experiences on here which were very helpful. Especially OPA_AlanM. What a wealth f excellent information and advice right there!

Well, my GP and Lupus doctors are very concerned about me not getting the surgery and more or less falling through the cracks because I’m not able to drink the amounts of fluids I should be to keep my kidneys functioning with lupus and I’m beginning to have serious issues there. We (I and my husband and doctors involved in my lupus) agreed that my experiences with the surgeon weren’t a good fit and since I haven’t heard from him, other than the note I my chart that I have GERD, and I’ve been referred to another clinic, but they are primarily esophagus surgery and issues. Seem like they really care and I now have a referral to them. It is 12 hours from where I live. I’m so exhausted, frustrated, confused by the entire “we’Re going to fix your Achalasia! We are leaders in this area of medicine!” Which has now morphed into the next scheduled step of meeting that surgeon and scheduling surgery turned into another EGD a change in diagnosis I’m just ready to figure something out for myself to not have my kidneys s**t down, put my Achalasia surgery on hold, save my kidneys and ask them to hang onto that referral because I’m now dealing with a problem caused by the Achalasia and inability to hydrate properly I’m starting to lose hope I’m making the right choices. My husband and I are listening to the lupus experts and going to stabilize my kidney situation. 

Then, figure out if I stay with the clinic 3 hours away and trust they have my best interest at heart or have just took the surgeon’s opinion I’ve got GERD is all, based on his consultation with me about where pain is and it’s heartburn, not whatever is stuck where he says my esophagus definitely is closed off or has lots of pressure at LES?? all this information I got from phone conversations with his nurse and then requesting my records and results and reading them) and they forgot about me. 

It’s the strangest situation and my GP agrees. So I find myself on here reading and trying to educate myself to make the right decision in changing clinics. 

I see many people run into the run around but as OPA_Alan so perfectly explains the diagnostic process of Achalasia, I’ve pretty much have done all that’s been asked and needed for this Achalasia diagnosis and I’m not willing to say the surgeon just throwing those tests and retesting out the door and calling it GERD alone, with no treatment plan is neither the way to go nor normal in treating someone who is fading. 

I guess my reluctance to travel back to chat with him s the hold up there ? I don’t know! I have great insurance, I do as I’m advised, but I need some guidance here! Like .... yes, it’s time for that second opinion and plan A was a great plan, don’t get derailed. Just present this to the clinic 12 hours away and consider the first clinic great diagnostic help but crummy follow up. Ughhhh what a circus. We are exhausted. Any advice anyone? Thank you once again! I’ve been on here before, I’m sure people are thinking why is she waiting?!!! It’s just complicated. My main question would be, what does heartburn feel like? What does acid reflux feel like? I’ve never felt discomfort in my chest like burning or anything in between times I was able to eat something or drink something. Never felt something was too spicy and would cause me to wake up at night like my husband. My pain is a distinct pain directly after taking a swallow of liquids now, one swallow will stop mid way down, then the pain builds as I feel as the fluid is trying the push it’s way through. If it becomes unbearable, I spit it out. If it’s unbearable and the pain becomes acute, I start dry heaving. I’ve stopped losing weight for now because I’m making thin protein smoothies I sip on during the day. That’s my life. Thank you for reading my story again! 

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