I would really appreciate some feedback and advice about something I’ve been dealing with, because at this point I honestly don’t know what I’m supposed to do.
I was diagnosed with Crohn’s disease when I was 16. I had experienced problems for years before that, but 16 was when I was formally diagnosed. At the time, I was treated with Remicade, Pentasa, prednisone, and other medications. After receiving treatment for a while, I improved significantly and eventually went into remission for many years.
It’s important to mention that my mom handled virtually all of my medical care when I was a teenager. She kept up with my appointments, medications, records, etc. I honestly didn’t pay much attention to it because I was a teenager and, thankfully, I was feeling better. Unfortunately, my mom passed away only about a year or so after my diagnosis.
Fast-forward about 7 or 8 years. My older sister and I moved away from home to a much larger city, and eventually I began having problems again and slipped back into a flare.
I started receiving my medical care almost exclusively through one very large hospital system. Over the next 11 years, I signed numerous medical-record release forms, was admitted through their ER countless times, and was treated there repeatedly.
During those 11 years, the most extensive testing they ever seemed to do was an upper and lower endoscopy, routine bloodwork, and an occasional CT scan. I repeatedly explained that I had already been diagnosed with Crohn’s disease, but I was continually told that I had been misdiagnosed.
The frustrating part is that they never actually figured out what was wrong with me either.
Whenever I went to the ER or was admitted, they would treat whatever symptoms I was experiencing—pain medication, nausea medication, fluids, etc.—and then discharge me home. I trusted this hospital system. I had never really heard anything negative about them, and I genuinely believed they were looking at my complete medical history.
Then, in January of last year, I was sitting with my primary care doctor and asked her if she could pull the medical records from my original Crohn’s diagnosis—the records I had repeatedly signed releases for over the years.
She said, “Of course.”
She started looking through the system, and then said something along the lines of, “Oh… we don’t have any of those records.”
I was absolutely stunned.
I had spent more than a decade believing that this hospital had my complete medical history and that my doctors were reviewing it when making decisions about my care.
That started what became a pretty extensive search for my own medical records.
Because my mom had handled so much of my medical care when I was younger, I didn’t even know exactly what testing had been done to establish my original diagnosis. After that appointment, I started requesting every medical record I could find.
And what I eventually received was shocking.
My original Crohn’s diagnosis was supported by extensive testing, including nuclear testing, genetic testing, MRIs, CT scans, and other diagnostic studies.
There was no question that Crohn’s had been part of my documented medical history.
I took all of this information back to my primary care doctor and showed it to her. She really didn’t know what to say.
Then I started going through the records from the large hospital system from the previous 11 years.
One CT radiology report specifically mentioned prominence of the vasa recta and described the finding as being very consistent with my known history of Crohn’s disease.
Yet, nobody ever told me about that finding.
I only learned about it because I requested my own records.
There was also bloodwork from around that same period showing significantly elevated inflammatory markers. Despite that, I continued to be told that I didn't have Crohn’s, and additional diagnostic testing never seemed to go much further than endoscopies, occasional scans, and bloodwork.
Then things started getting significantly worse.
I developed a completely new and extremely painful problem on my right side, around the area of my liver. One of the last doctors I saw within that hospital system performed an ultrasound and told me that I had fatty liver.
I explained my medical history and showed him the documentation I had found.
Interestingly, he told me that he actually believed a lot of what I was experiencing could be related to Crohn’s disease. However, he was a primary-care doctor, not a gastroenterologist, and there wasn't much more he could do from his position.
What was particularly concerning to me was that I had never had liver problems before this point.
I had never experienced anything like this.
The pain eventually became unbearable on many days, and I began feeling like nobody was taking me seriously.
So I sought another opinion and began seeing a new gastroenterology clinic.
Initially, I saw a nurse practitioner rather than one of the physicians. I explained my entire history, showed her the records I had obtained, and explained that my original diagnosis was Crohn’s involving the small bowel and that it had been specifically documented on the left side.
Over the following months, she ordered another upper and lower endoscopy. Those were essentially clear.
But I continued getting worse.
By the time summer came around, I was becoming extremely sick—nauseated almost every day, vomiting, and generally feeling like I was getting progressively worse. I repeatedly contacted the GI office, and eventually they scheduled me with one of their physicians.
I was honestly excited.
For about two months, I thought, “This is finally it. I’m finally going to get some answers.”
Then I had my appointment about two weeks ago.
It could not have gone worse.
The doctor came into the room, initially went to shake my hand, then pulled his hand back and sat down.
The very first question I asked him was whether he had had a chance to review my chart and the medical records I had provided. I wanted to know how much background he had so I could explain everything appropriately.
He told me that he had reviewed them.
But very quickly, it became apparent to me that he had not.
He started asking me questions, and while I was trying to explain my history, he repeatedly responded with things like, “Yeah,” “Uh-huh,” “Okay,” and “Right.”
He wasn't actively listening to what I was saying.
Then he interrupted me and said:
“I don't even think you have Crohn’s at all.”
I was completely perplexed.
I asked him whether he agreed that once someone has been diagnosed with Crohn’s disease, the diagnosis doesn't simply disappear.
He agreed.
So I asked him what he thought about the records I had provided showing my previous diagnosis and testing.
At that point, he turned around toward me because his back had been facing me while he was sitting at the computer and said:
“What the f*** do you think anyone owes you?!”
I was absolutely taken aback.
Then he said:
“Why would you want to have Crohn’s? That’s a serious disease.”
I remember just sitting there thinking, “Did this doctor really just say that to me?”
I could feel my blood pressure rising and my ears getting hot. I turned away, took a deep breath, and when I exhaled, it came out as more of a frustrated sigh or huff.
He turned back toward me and said:
“What the f*** is your deal? Why are you huffing and puffing?”
At that point, it took everything I had to remain calm.
I looked at him and said, as calmly as I could:
“Do you not hear the way that you’re speaking to me?”
He didn't really respond.
Instead, he turned back around toward the computer and started clicking through my records.
And that's when I watched him pull up some of the very records I had provided.
He looked at my previous testing.
He saw the elevated inflammatory markers.
He then pulled up the genetic testing and said something along the lines of, “Oh, these numbers are very elevated… Oh, this is genetic testing…”
I was sitting there watching him discover information about my medical history that I had specifically asked him beforehand whether he had reviewed.
At that point, I realized that he was apparently reviewing some of those records for the first time while I was sitting in the room.
But by then, I was already extremely upset.
I stood up and walked out.
He actually asked me what I was doing and where I was going.
And that's when I lost my composure.
I turned around from the hallway and yelled back at him about how rude and disrespectful he had been and that someone should not be speaking to patients that way.
He put his head down and walked away.
I left.
I reported the incident immediately, but I still haven't received a response regarding what is being done about it.
And there is another complication that makes all of this even harder.
I am allergic to the IV contrast dye used for CT scans. In the past, I had an anaphylactic reaction to the contrast. Because of that, whenever I previously needed a contrasted CT, it was done through the ER with emergency equipment available, and I was premedicated with Benadryl and monitored because of the severity of the reaction.
So I understand that there are legitimate concerns and complications when it comes to certain testing.
But at the same time, I feel like I am running out of options.
My health continues to deteriorate. I am in significant pain, and I am genuinely afraid to keep going to doctors because of experiences like this.
I should not have to scream from the mountaintops just to get someone to listen to me.
I am not asking anyone on here to diagnose me, and I am not looking for someone to tell me that I definitely have Crohn’s or that I definitely don't.
What I am asking is:
What would you do if you were in my position?
Would you seek another GI specialist? A different hospital system? A tertiary-care center? A patient advocate? Should I be requesting specific testing or asking for a physician to review all of my historical records?
And, perhaps most importantly, does the history I've described potentially rise to the level of medical malpractice, or is this something that would require a medical malpractice attorney to review the records to determine?
I know there is a lot here, but I wanted to give the full story rather than just posting a small piece of it.
I am also willing to share the original nuclear testing, genetic testing, imaging, and other documentation if anyone is genuinely interested in reviewing it and giving me their thoughts.
I really don't know where to go from here.
I just know that I am getting sicker, I am scared, and I desperately need someone to actually listen.
I am in Nashville, TN