Spoonie Stories: Michelle Griffith
My story started in a similar manner to countless recollections I’ve read online: a teenage girl was seemingly healthy one day and sick the next.
I was an athlete my whole life, with only a few minor symptoms in childhood that were easily waved off at the time.
Then when I was 18, everything changed.
I started getting nauseous after eating anything. My stomach itself felt hard as a rock after eating. My acid reflux, which I had battled on and off my entire life, flared. I developed countless food intolerances. My abdomen started ballooning up – it would be flat when I first woke up, then slowly swelled throughout the day until I looked 6 months pregnant by the end of dinner. I had a strange pain in my lower left abdomen unlike anything I’d ever felt before. And even more bizarre was the fact that I could no longer touch that same area externally; it was very painful and nauseating to the touch externally as well.
Within one month, the exquisite pain to the touch spread up and across to cover my entire abdomen. Even the weight of a bedsheet was unbearable.
At this point in my life I was a freshman in college, extremely busy with schoolwork and extracurriculars. Symptoms started October 2016. I told myself it was nothing, and that my symptoms would go away over Winter Break when I could finally relax (classic spoonie self-gaslighting).
Strange turn of events: my symptoms didn’t go away.
So over Winter Break I reluctantly saw my pediatrician, who had absolutely no idea what could be going on. But also didn’t suggest seeing anyone else.
So I chose the stick-your-head-in-the-sand method for a while longer.
Eventually I saw a gastroenterologist in my college town. After labs, a colonoscopy, and an endoscopy came back mostly clear, he declared I would “just have to learn to live with IBS”. So that’s what I tried to do!
But as time went on and my symptoms only worsened, I became desperate for relief. I ventured hardcore into the all-natural vegan yoga lifestyle, to no avail.
Senior year of college I finally saw a new gastroenterologist in my hometown. After some imaging showed my gallbladder was filled with gallstones (at only 21 years old), she suspected my gallbladder was the culprit. So my gallbladder was removed over Winter Break my senior year. It had turned white and was completely filled with calcified gallstones. The surgeon was sure I would feel better soon!
And for a while, the nausea did improve slightly. But suddenly a couple months after getting my gallbladder removed, my abdominal pain SKYROCKETED. Previously nausea was my worst symptom. Now, pain was my worst symptom by far.
It was a severe pressure and stabbing pain in my upper middle abdomen, which would flare after eating and wrap around to my spine. I also simultaneously had severe left flank pain which would flare after eating too. Both of these pains were also made worse from any slight movement, laughing, coughing, breathing, and BM’s. The pain was so severe that it was a serious struggle to finish my last semester of college. And then I had to drop out of graduate school, and move back home because I was unable to care for myself independently.
After graduation, I was seen at the Mayo Clinic where they diagnosed Gastroparesis. This explained the constant nausea, food struggles, intense acid reflux, and stomach feeling hard as rock from eating. But it didn’t explain the debilitatingly intense stabbing/pressure pains, which was the main reason I was there. And Mayo proved to be entirely unhelpful in treating my Gastroparesis upon my return home.
I soon also started developing even more symptoms such as orthostatic intolerance, presyncope, low blood pressure, random facial flushing, blood pooling in my hands and feet, severe heat intolerance, left leg swelling, chronic migraines, bone aches, and more.
As my symptoms progressed, my ability to eat and care for myself diminished. I became malnourished – not because I didn’t have plentiful access to beautiful healthy food all around me. But because eating was unbearably painful.
In 2017 it was discovered I had Primary Hyperparathyroidism. My upper two parathyroid glands were removed. This helped a bit with the bone aches, but not much else.
In early 2018 I was diagnosed with a spontaneous spinal CSF leak. This explained my severe chronic headaches and migraines. I tried 3 rounds of blood patches, which all greatly helped for 24-48 hours. But none of them provided any lasting relief. They were such horrible procedures to go through that after the 3rd blood patch didn’t provide lasting relief, I decided I was done. I wouldn’t put myself through that again.
In October 2018, six years after initially getting sick, I discovered the online chronic illness community. Up until this point, I didn’t know anyone else my age (or any age) going through anything even remotely similar. But suddenly as I’m scrolling Instagram, I’m seeing hundreds of girls my age battling their own chronic illnesses. Suddenly I see how similar so many of our stories are. Suddenly I wasn’t alone in my experiences with mysterious severe chronic illnesses.
These girls inspired me to want to raise awareness of the couple conditions I had diagnosed. So naturally, I start searching for awareness t-shirts just to make it a little bit easier to raise awareness. I came across tons of super cheesy shirts, and tons of shirts with extraordinarily unattractive designs. There was absolutely nothing I, a young woman in her 20’s, would actually want to wear.
So I decided to change that.
Hello Daydreamer Photography
And Spoonie Sister Shop was born. I figured I couldn’t be the only chronic illness warrior who wanted actually cute awareness shirt options, to make it super easy to raise awareness of my conditions. I hoped my designs would make at least one person’s day brighter, and help others feel empowered and supported in their chronic illness journey.
Spoonie Sister Shop was honestly just going to be a nice little side hobby to distract myself from my own symptoms while I was homebound and debilitated from pain. But it quickly grew into something so incredible, that I never could have predicted! Our little spoonie community has supported me through the bad times and the good, and I am forever grateful we have each other.
In December 2018, I finally had a medical breakthrough. A vascular interventional radiologist discovered I had May-Thurner Syndrome, a rare vascular compression syndrome in which the left iliac vein is compressed. This explained my left leg swelling and strange mottled appearance of the skin on my leg. I was treated with bilateral common iliac vein / IVC stents. Both my left and right iliac veins were also blocked internally by scar tissue inside the vein, so that’s why I needed two stents.
Then in May 2019, I was diagnosed and treated for Nutcracker Syndrome. Another “rare” vascular compression syndrome, this time of the left renal vein. This explained my severe left flank pain, and also contributed to my chronic migraines, nausea, and Pelvic Congestion Syndrome. I had a left kidney autotransplant to treat it.
Next in 2020, I was diagnosed with Median Arcuate Ligament Syndrome (MALS). You guessed it – another vascular compression syndrome. This time of the celiac artery, which is one of the main arteries branching off of the aorta. It helps supply blood to your stomach, pancreas, liver, spleen, and more. MALS also impacts the celiac plexus – a nerve bundle sitting on the celiac artery. So basically a diaphragm ligament was wrapped around the artery and nerve bundle, squeezing it all tightly. As you can imagine, it was incredibly painful! My surgeon said it feels like end stage pancreatic cancer pain, because the same nerve bundle is impacted in both conditions. I had robotic MALS surgery in March 2020 to treat it.
For about a year, I was feeling so much better. Not nearly perfect – I still had pretty intense mid abdominal pain, food sensitivities, the abdominal external pain to the touch, and more. But pain levels were low enough that I no longer relied on a wheelchair, and I could finally eat more food. So I was happy!
Except for one setback in September 2020, when my previously autotransplanted left kidney suddenly failed. This occured due to a blood clot in the transplanted renal vein. My surgeon thought the clot occurred due to how he placed my kidney into my pelvis and reconnected the renal vein just below my right iliac vein stent; I was his first autotransplant patient to have a right iliac vein stent. Based on my vasculature he also knew I had to have some type of connective tissue disorder, which likely contributed to the clot because it makes the inside of my veins & arteries rougher than normal (but he couldn’t make a diagnosis on which connective tissue disorder it was).
Fun times! Thankfully my right kidney has taken over the job of two, and is still functioning great! **knock on wood**
Unfortunately, in 2021 the severe pain and symptoms that had previously been relieved by MALS surgery came back.
I was devastated.
Imaging showed slight celiac artery recompression but not much. It also showed possible Superior Mesenteric Artery Syndrome (SMAS), but my local doctors couldn’t give me a firm yes or no on it. So therefore they couldn’t treat it.
I was floundering, symptoms getting worse and worse each week with no answers.
When my local doctors ran out of ideas, I was forced to start calling SMAS specialists around the country. I needed to know whether this was the cause of my remaining & returned symptoms or not. But the problem was that it was such a rare condition that there weren’t many doctors in the country who treated it.
One SMAS specialist never got back to me.
Another experienced specialist in the northeast said no, check your pancreas. But my pancreas had always looked fine on imaging, so I was put out by his answer and moved on.
A renowned doctor who specialized in SMAS (and had pioneered a new, much more effective surgery to treat it) said yes, I think I can help you. But his waitlist was over a year long…and my body didn’t have that long to hold on.
As a last resort, I reached out to a team in Germany well known in the vascular compression world for diagnosing and treating all vascular compression syndromes. They offered to help, and could help within a couple months. So that’s what my family and I did.
There, they figured out why my doctors back home were having so much trouble determining if I had SMAS or not. The German doctor figured out that laying down my organs were in their correct places and functioned normally. But when I sat up, stood up, or was even just slightly propped up, my organs significantly sunk down towards my pelvis (a condition called Visceroptosis). This change in anatomy caused my duodenum to be completely compressed when I was upright. Meaning I had SMAS when I was vertical, but not when I was horizontal!
He explained that I had to have a connective tissue disorder like Hypermobility Spectrum Disorder or Hypermobile Ehlers-Danlos Syndrome to cause this to happen.
The next week, in March 2022, the German surgeon operated. It was a large open abdominal surgery to address SMAS via an “external stent”, right nephropexy to treat Nephroptosis, median arcuate ligament release, and an incisional hernia repair.
It was the hardest recovery I’d ever been through.
At first this surgery seemed to be a somewhat success (I was barely eating for the first few months post-op, so it was kind of hard to tell what was relief from surgery vs just relief from barely eating). But after 6 months it was clear that my pain & symptoms were just as bad as before Germany. My insides were too weak and floppy from a connective tissue disorder for the “external stent” to fix my SMAS; I still had just as much duodenum compression as before surgery. The only lasting benefit was that my Pelvic Congestion Syndrome was thankfully resolved!
At this point, I was so burnt out on seeking medical answers that I just didn’t even try to figure out why my symptoms had returned. Of course I let the German surgeon know, but he just blamed my Hypermobile Ehlers-Danlos Syndrome (which was finally offically diagnosed by a doctor back home in Texas). I tried to be patient and give recovery a full year.
After riding it out for a while though, my symptoms escalated to the point where I could no longer put off seeking help. The abdominal pain was unbearable. I was losing weight rapidly again. TMI, but I now chronically had diarrhea after eating anything (and it wasn’t just post-op Dumping Syndrome, which I temporarily had for about 6 weeks post-op). My pain that radiated to my back was worsening a lot. I felt my body slipping away, yet again.
In late 2022 I connected with a doctor who suspected the cause of my symptoms might be Chronic Pancreatitis. Not from alcohol (I didn’t drink), but from genetics or other causes. I didn’t even realize it was possible to have chronic pancreatitis from causes other than alcohol!
So in January 2023 I traveled to be seen at Virginia Commonwealth University – where one of the USA’s leading chronic pancreatitis treatment teams is located. I had an extensive workup there, where the doctor concluded he highly suspected I had Minimal Change Chronic Pancreatitis – a type of chronic pancreatitis that happens slowly at a cellular level, so it’s difficult to catch on imaging. Based on labwork he recommended I start taking pancreatic enzyme supplements, which thankfully stopped my chronic diarrhea from Pancreatic Insufficiency!
This doctor, Dr. Khan, explained to me how he had seen a large number of patients just like me with Ehlers-Danlos Syndrome and a history of vascular compression syndromes, who later developed Chronic Pancreatitis. He even was familiar with the German team I had been treated by! It was extremely reassuring to know that Dr. Khan was knowledgeable about my chronic illnesses, and was comfortable treating me despite my past surgical history.
To treat the Chronic Pancreatitis, Dr. Khan recommended I have a huge surgery called a Total Pancreatectomy with Islet Cell Autotransplant (TPIAT). It involved removing the entire pancreas, spleen, duodenum, 1/3 of stomach, and transplanting your islet cells (the cells that control blood sugar) into your liver. So essentially your liver becomes your new pancreas (as far as endocrine function goes).
I had already tried all lifestyle/non-surgical Chronic Pancreatitis treatment options, pancreatic stents would not be effective in my case, and partial pancreas removal surgeries wouldn’t be effective for me since my whole pancreas was thought to be impacted.
However, my imaging from Virginia didn’t show anything visibly wrong with my pancreas. I knew Dr. Khan said Minimal Change Chronic Pancreatitis doesn’t always show up in imaging, but I just couldn’t move forward with such a drastic surgery without hard evidence on imaging. Dr. Khan completely understood. He said “let’s follow up in a year and see what your thoughts are at that point”, which I was completely on board with.
During 2023, I trialed a spinal cord stimulator to try and help with the pain, but it didn’t even begin to touch my pain. My pain and symptoms continued worsening, beyond what I thought was even possible.
Then I consulted a local surgeon who also does TPIAT surgeries for chronic pancreatitis patients, seeking a second opinion. If I was even thinking about a surgery that extensive, I had to have another opinion on the matter. The local surgeon had me repeat another endoscopic ultrasound, the imaging type that is currently considered one of the most accurate ways to detect Chronic Pancreatitis.
Previously when I did this test, January 2023 in Virginia, it didn’t show anything.
Now just 9 months later, in October 2023 locally in Texas, it showed significant damage to my pancreas indicative of Chronic Pancreatitis. My heart sunk.
Dr. Khan was right.
I really did have Minimal Change Chronic Pancreatitis (I had kind of refused to believe it up until this point?), and the best next step would be a TPIAT.
My gastroenterologist advised me to go to Dr. Khan in Virigina for the TPIAT, and not do it locally with the local surgeon. The Virginia team was much more qualified and experienced, especially with complex patients like myself.
So that’s what I did!
In January 2024, I did the dang thing. I had Total Pancreatectomy with Islet Cell Autotransplant surgery with Dr. Khan at VCU, where my entire pancreas was removed. Along with my spleen, duodenum, 1/3 of my stomach, and a TON of scar tissue from previous surgeries.
I was in the hospital for 10 days. We stuck around nearby for another 6 weeks after that (thankfully my family can work anywhere remote, so this was possible). Recovery was tough, but I got through it! After only about 2.5 months post-op I started seeing significant, noticeable improvements!
Now, I am currently a little over 7 months post-op from my TPIAT. There is no telling what may or may not come back in the future, or what complications my Ehlers-Danlos Syndrome will inevitably cause in the future…
But for now I am feeling the best I have in decades!
My severe chronic abdominal pain, which used to typically hang at around an 8 out of 10 on a pain scale, now is mild at only a 2-3 out of 10 most days. My Gastroparesis and acid reflux are gone. I have to take pancreatic enzyme supplements with everything I eat, but my lower GI symptoms are gone. I am eating full portions of practically any food I want, with just a few limitations. I am in AWE every single day that this is possible!
I am exercising, working full time, socializing, and just living life. Yes I still have symptoms from EDS, Visceroptosis, Dysautonomia, Chiari Malformation, and more. But I have finally reached the point that had always been my goal – have my symptoms be manageable. They didn’t need to be zero, but just manageable.
I hope that by sharing my story, this helps others know they are never alone in their chronic illness journey. No matter how hard things get, no matter how many rock bottoms you hit over and over again, just know that there are people out there that get it.
I am sorry you are in this uncontrollable situation.
I am sorry you are having to be strong because you have no other choice.
I am sorry for the pain you feel – a pain no one should ever have to experience for a minute (let alone chronically).
You aren’t alone. There is a whole community of spoonies ready to support you.
Sending spoons, Michelle
Disclaimer: This is simply the story of my personal experiences with my chronic illnesses. None of this is medical advice, and no two cases will ever be the exact same. If you have any medical concerns, always seek the help of a doctor or licensed medical professional. I cannot give you any medical advice.
If you would like to submit your story to be featured in our new Spoonie Stories series, please fill out the form on this page. I would love to share your Spoonie Story! My story was very long (I ramble and have trouble making things concise 🙈) but yours can be as short or long as you wish 💕