Ehlers-Dumping Syndrome

The morning of the 2018 Dwight Crum Pier-to-Pier Swim finally arrived. I awoke at 5:45 am after an excellent night of sleep.

I was elated. I was ecstatic. I knew I was going to cross the finish line. I was already savoring that moment to come, blinking away my tears of happiness. 

But then... Ehlers-Disaster struck.

F*ck! F*ck! F*ck! F*ck! F*ck! F*ck! F*ck! 

Dear Reader,

I grappled long and hard with how to write this post like a lady. I am prone to (how shall I say this?): stomach episodes. I have diagnosed myself with Dumping Syndrome. Yes, it is what it sounds like.

Of course, everyone knows that Dumping Syndrome only happens to a person who has undergone a gastric bypass, which I have not. But if you go on support groups for Dumping Syndrome, about 15% of the victims have Ehlers-Danlos Syndrome, by my survey. Everyone else has had a gastric bypass. So there you go. I also get drunk like someone who has had a gastric bypass too: extremely fast after just a sip. Everything leaves my stomach at lightening speed, as if it were stapled. How cute. 

My stomach issues are also aggravated by my former use of long-term opiates, which leaves a person with long-term-super-duper sensitive digestion, a little known fact. Yay. There are opiate receptors in the digestive tract.

I tried to get seen at the Cedars-Sinai Gut Motility Clinic.

All with cool kids with EDS go there. The Gut Motility Clinic even diagnoses EDS Victims: Good news, we know why your digestion is such a complete disaster! Look at your beautiful skin and joints going backwards. Have you heard of Ehlers-Danlos Syndrome?

But I could not get an appointment

Cedars Gut Motility Clinic: Go see the regular gastroenterologist and make sure he can do nothing for you first.

Me: But all my friends go to you! They didn’t have to get referred! I have Ehlers-Danlos Syndrome!!!! I am really having terrible terrible stomach problems!

Cedars Gut Motility Clinic: Ha ha. Too bad. We are too backed up.

That is definitely not my problem.

I take no drugs that slow down digestion: No opiates (hate them), no antihistamines (they make many EDS symptoms worse), and I very rarely take a muscle relaxant (don’t have much pain). Inside, it is all a fast ride downhill. (More about the problems with antihistamines on this podcast.)

I did go see the regular gastroenterologist, as the Gut Motility Clinic insisted. I got little relief. I enjoyed hearing about his vacation to Italy. 

Gastroenterologist: Wow, you are doing so well with Ehlers-Danlos. This is unbelievable. What are you doing with your life now?

Me: Adjusting to being undisabled has been extremely stressful. Do you want me to cry or should we get on with the appointment? No offense. I mean, thank you for asking. But I really will cry.

This conversation was a clue: my digestive problems might be related to anxiety.

FODMAP did not solve much, except avoiding maltitol, erythritol, sorbitol and everything ending in -ol. And fructose. Gastroenterologist warned me that if you restrict foods for too long, you lose the ability to digest that food, so be careful to exclude only what really is a problem.

I do the beer and crackers diet when it feels like I have eaten ground glass.

Vegetables make it all worse, as there are many toxins in plants to keep animals from eating them.

What helps most is simply not eating at all, but all this swimming was making me hungry! I just couldn’t power through a fast. When race morning came and that familiar queasiness hinted at the disaster to come, I sure wished I had stopped eating 72 hrs ago. The idea had occurred to me, as a precaution, but I had been too hungry. F*ck! F*ck! F*ck!

I really had meant to get into to the Cedars Gut Motility Clinic already, but I had gotten sidetracked with other aggravations.

My Injured Foot

Nothing is worse than getting a shot in my injured foot, but what choice do I have? This foot must heal. Dr. Plance gives me platelet rich plasma injections. Shots in my foot are so stressful, they can trigger a dumping epiosde. Yay. Another clue that this is an anxiety problem.

Here I am, mentally preparing myself for what is to come. I always ask him for a muscle relaxant, general anesthesia or at least a shot of vodka first, but Dr. Plance never obliges. So I have to manage my anxiety all by meself. Yay. It is exhausting. 

Dr. Plance starts with numbing spray (hurts almost as much as the shot!) as he tells me a wacky story to distract me. He saves the good ones for my shots. Awwww, Dr. Plance!

Then I dig my finger nails into my leg and scream. F*ck! F*ck! F*ck! F*ck!

Then I apologize for my dramatic outburst. Once, after my shot, his nurse asked me if it was a boy or girl. She laughed and laughed. I did too. That was funny.

These shots in my foot hurt so f*cking much, but only briefly so I should not be so dramatic. It is just very hard to sit there and not flinch. I am extra jumpy after the long-term opiates. 

I am proud to say I kicked Dr. Plance only once. He’s a tough guy, I don’t think he minded.

Hey, look how strong I am getting from swimming!

My Therapist’s Breakdown

Another reason I did not make it to the Cedars Gut Motility Clinic was because my psychotherapist tried to blackmail me. No, I am not joking. I have had medical relationships blow-up before, but this was singular. 

I went to the police for their opinion. I hardly slept for a week. Then I got really sick. 

I rolled into Dr. Plance’s office for more shots for my battered foot. He palpated my swollen lymph nodes.

Dr. Plance: What happened to you? You are really sick. I cannot give you a PRP like this.

Me: My therapist had a breakdown.

Dr. Plance: What?

Me: He was jelly-belly.

Dr. Plance: What?

Me: He was jealous. Of the loving things I said about you. I’ll text you my Yelp review of him. 

Dr. Plance giggled. 

Dr. Plance and I have been through a lot in our 13 years together: untreatable pain, untreatable insomnia, unrelenting fatigue, heart tests, vascular imaging, going on long-term opiates, coming off long-term opiates, my endless post acute withdrawal syndrome, everything he could think of to help me heal, too many joint injections to count, two emergency surgeries, joint damage getting worse, joint damage going away, texting jokes (I call his service if I have a medical problem), arguments over text, many bouts of pneumonia, one house call, lots of lively debate, postcards from Paris, treating me at the worst of my disability and me... now.

We laugh at all of it. Dr. Plance is like that. No matter how rotten I feel about my stupid disease, he always makes me laugh about it. I am not sure how he does it.

Oh, did you want to see my Yelp review of my former therapist?

Oh, okay. Guess my former therapist really wasn’t there for me. I was sorry he did that because I really liked him, up until the end. I like everyone who treats me. I wrote a lot about him during the therapy but I cannot bring myself to read it.

The therapy had helped my PTSD. Instead of drinking all night camped out on my kitchen floor, waiting for the terror to relent so I could go to bed, it felt good to simply lie face down on my kitchen floor. I mean during the day! Much more dignified! I still find comfort on my kitchen floor. Listening to EMDR music during those bad times is a nice addition, as it stimulates the brain.

What my former psychotherapist said to me on the phone during our last conversation was so mean, it was stupid. I have a good sense of how annoying I can be, and his cruelty was just way off. For an insult to stick, it has to be kinda true, right? I think so.

I demanded an apology from him, because that was some f’d up material he unloaded on me, and woah, no one should ever talk to a patient like that. That is when we really got into it. I may have called him a pathetic narcissist and an immature piece of shit. The therapeutic alliance was definitely over. Rather than apologize, he refused to destroy the videos my sessions. Dummy (that’s me) will never agree to taped psychotherapy again.

Do you want to know how I got him to delete the videos?

I reversed every single payment to him, as he was in breach of contract. I was going to send all the money back to my insurance too. But then he said he erased the videos, which he said as if he was doing me some giant favor. So I released the funds, via my credit card company.

Do I really think erased the videos?

No, but this was the best I would get.

Stand up for yourself, kids.

File state complaints immediately. It is a long process, get it started right away. Mr. Pennington wrote mine because I was too distraught. Get someone to help you when you are too upset Get it done and move on. The worst that happens is the state takes up your complaint, and then you have to talk about it. I hate that.

I did not bounce back from all this quickly. It was quite a violation. I did not have it in me to get a work up at Cedars.

On morning of the 2018 Dwight Crum Pier-to-Pier Swim my stomach started dumping and would not stop. There was nothing I could do but hope it would end before the 9:05 am start, and hope I would be well enough to swim. Little chance of either. It turned out to be one of the worst episodes I ever had. I wanted to cry but absolutely could not spare the hydration.

Mr. Pennington pointed out how much nerves fuel this problem, as he went to buy me another bottle of water, and get my potassium pills and salt shaker from the car. We sat in silence in the sun, on the warm sand, waiting, watching the crowd of 1,300 swimmers gather.

Ehlers-Disaster Syndrome.

F*ck! F*ck! F*ck! F*ck! F*ck! F*ck! F*ck!