How talking to a Nun led to my diagnosis
Over the course of my life by age 22, I had received nearly 10 different diagnoses for my chronic and frequently debilitating stomach issues from acid reflux, ulcers, gastritis, stress/anxiety, bile reflux, sports-induced asthma, vocal cord nodules, and the list goes on and on. This happens a lot as MEDICAL SCIENCE IS NOT PERFECT. Let’s face it, many things actually can look like a duck, quack like a duck, but turn out not to be a duck, especially if they are: 1. relatively rare and, 2. emanating from an organ deep within the body.
Literally by the grace of God, the “real” diagnosis of the root cause of all of my symptoms occurred during a casual conversation my Mom had with one of her co-workers during a workshop potty break. Mom had made a quick call to me to see how I was doing that morning as the night before, I had been in the ER writhing in debilitating stomach pain once again. It was my junior year of college. After returning from the call, Mom must have looked really worried as her co-worker, a wonderful Catholic Nun named Sister Ellen would not take no for an answer when she asked Mom what was on her mind. Mom told her about me and my horrible unrelenting stomach pain and symptoms in a nutshell. Sister Ellen, who ironically happens to be very experienced RN, said that her own biological sister who was 75 at the time, had the very same symptoms all her life. She recommended that Mom make an appointment that very day with the expert gastroenterologist her sister sees at Baylor Medical Center in Dallas, as he is an excellent diagnostic gastroenterologist and clinician!
Given the fact that we had tried everything under the sun, Mom jumped on it to schedule an appointment for me and within 2 weeks. I just thought, “what do we have to lose? Already hit my deductible, what’s one more doctor visit.” Off we were to Dallas...
I was in the office with this doctor who poured through all of my medical records that Mom had collected since I was born (can’t begin to explain how critical this is and HIGHLY recommend doing this). The file was over 6 inches thick! That doctor viewed everything within about 20 minutes and said that every blood test showed consistently elevated liver enzymes since age 18 months. They were not crazy elevated but well out of normal range. That, along with the location and type of pain, and bouts of severe oily diarrhea since birth lead him to telling me I had congenital chronic pancreatitis.
GOD BLESS SISTER ELLEN WHO LED ME TO THIS DOCTOR.
It turns out he is a leading expert in pancreatic disease. Yes, this was a God-thing! I had a battery of pancreatic tests including an ERCP the next day at Baylor Dallas Medical Clinic. That test was awful as it often irritates the pancreas and gives patients a temporary bout of pancreatitis afterward. That happened to me but I was so glad we finally had a legit diagnosis and were getting answers! I must say, all of the earlier diagnosis were also legit but they were secondary to the primary issue, the chronic pancreatitis. All the meds and treatment plans for those secondary issues helped temporarily mitigate some of the intensity of those symptoms but they in no way touched the root cause of my problem, the chronic pancreatitis.
The take-away here are 3 critical items that can make the difference for you no matter where you are in a medical journey. Whether you are the person currently dealing with something or you are the caretaker for a child, spouse, sibling, parent or friend of someone who is battling an illness . . . these 3 items will provide hope when you feel you have hit a deadend:
Doctors are like restaurants - you have to try multiple and even different items to see if you want to come back. Also, after a couple of visits with no meaningful results, move on!
Always be open - you never know who is listening and what they have gone through that could help you.
Track, monitor and never lose hope.
Doctors are like restaurants
I know what you are thinking, “Really, Pow, you are going to compare a Doctor to a restaurant?”
In fact, I am! Think about it. When you want a good steak, you research the best steakhouse in your town. You read the reviews, ask your friends about it, even read about the chef’s background before you make a decision to go. Then you go and give it a try. Now, there are different outcomes that could occur: (1) You eat it, but it’s just not what you expected from not hot enough or not a good cut, (2) the service was bad, or (3) it was the best you ever had, or even; (4) it was good but nothing to rave about.
From there you make your next decision to either give it another try, try something else on the menu, or not come back and stick to your go-to steak place. We all know that there are some awesome hidden hole-in-the-wall places that have the best food.
This is exactly how you should approach doctors . . . you have to feel each experience out individually. Take everything into consideration and even though they may be the best of the best, that doesn’t mean they will be perfect for you. And that is okay! You have the power at the Doctor’s office and trust me, I know it is not ideal to go bouncing around and spending time filling out the 20,000 pieces of new patient paperwork . . . but if you are in need, you will do whatever it takes to find comfort in your care. Just like getting a second opinion, you have nothing to lose to get more insight or see if a doctor tries something else, or brings a new idea to the table. That could always get you one step closer to the root.
Always be open
This one can be tough for many, especially those that like to keep their struggles to themselves. But if I wasn’t open to all my struggles, pain, battles, then I would most likely still be suffering to this day with a cranky pancreas. Paired with being open comes with being able to listen to others and their thoughts. You never know if someone you see daily has struggled with something very similar to what you have gone through and can provide you a new door to try.
This one I have found key especially with mental illness . . . there is a big stigma around mental illness (WHICH I WISH WOULD GO AWAY!) and it impacts the accessible information that could be very beneficial. Whether you are the person battling or the person taking care of someone who is struggling, the more you share, the more resources will present themselves. If anything, you will gain a support system to help you when sh** hits the fan. Been there, done that!
Monitor, track and Hope
Right now, pull out your Notes in your phone and start a note called “Symptoms.” When anything comes up that is different or outside your norm, log it! Indicate the Date, Duration, Symptom, and how you handled it. Be specific, descriptive and detailed. You may think that you will remember every detail when you go to your doctor but in reality, your mind will be on so many other things, that the small details can be lost or forgotten. And guess what, those details could be the missing piece that gives light down a new path or idea. Being specific around the pain or issue is critical to see what is similar or different across each occurrence. Identifying patterns like time of day, certain food intake prior or post, radiating verse piercing, major job change/life change; those are just some factors to mention that make a world of difference to mention to your doctor.
And of course, never lose Hope.
The journey may be tough, long, and bumpy but it’s God’s plan, not ours.
I held onto the moments of relief when they came and also knew that when they left, they would come back. At the end of the day, I woke up for another day, so I am going to fight like it is my last.
At the end of the day, if you aren’t getting relief, here is my approach: Pray, talk, and move on to new providers after 3 visits going nowhere. Don’t be afraid of moving on until you find your safe place. My doctors (and oh, I have A LOT of them) are considered family to me. They understand my situation, and are humbled by constantly learning together. Doctors are humans too, awesome smart people, but just like you and me.
Don’t forget to start journaling and track anything that happens outside your norm, and always stay positive. You are stronger than you know!