“Assuming you even had it [Crohn’s disease],” he said. My new gastroenterologist’s words hung in the air. I stared blankly from behind my mask, a deer in the headlights, unsure how to respond.
Just like that, I was dismissed and invalidated. I said my intestines were bleeding for the past three months straight and had only just recently stopped, but my words weren’t even acknowledged.
I tried to relay 20 years worth of symptoms and colonoscopies in just a few short breaths, but it was all dismissed.
I was given a smile. “Great news!” My colonoscopies in 2019 and 2021 were clear, I was done. No need for follow-up appointments with the gastroenterology clinic, no more colonoscopies. No discussion about remission and relapse, just the implication that I never had inflammatory bowel disease (IBD) and a questioning look of why I was even there. He shook my hand; I was shown the door and told that my primary care doctor could see me in the future. So I left, making sure the door didn’t hit me on my way out.
I was in disbelief. I was angry, frustrated. His words stung, they implied I was a fraud, that I somehow made up this journey. How could I continue to write or share my podcast? I went home and scoured my medical records for the next six hours. To do what? Prove to myself that I have IBD; prove to you, my readers and followers? Whatever the reason, I was driven to dig into my records.
And there they were, my colonoscopy and corresponding pathology reports:
- 2007 – Transverse colon with scattered ulcers; acute inflammation; mild non-specific chronic colitis.
- 2008 – No ulceration.
- 2009 – Transverse colon with mildly increased chronic inflammation; left colon with moderate chronic active colitis with occasional crypt abscesses; rectum with moderate chronic active colitis with focal crypt abscess.
- 2015 – Ascending colon with mild chronic colitis; descending and sigmoid colon with chronic active colitis with acute cryptitis. Postoperative diagnosis: IBD; active inflammation and skipped areas c/w Crohn’s colitis.
- 2017 – Sigmoid colon and rectum colonic mucosa with focal acute inflammation.
I reflected on my symptoms over the past two decades. My intestines bled nearly continuously for four years from 2002-2006 in my early 20s when I was too embarrassed to tell anyone about it. I had my first major flare in September 2006 with 40+ bowel movements a day of bloody, uncontrollable diarrhea. I didn’t leave the house for three months because I was afraid I couldn’t make it to the hospital without having diarrhea in my car. My first gastroenterologist worked hard to help me find relief, prescribing me a variety of medications over the years that ranged from Rowasa enamas and mesalamine, to eventually a combination of Imuran and Humira. My symptoms were mostly controlled, but I was still in pain, having lots of mucus with my bowel movements, and restricted in what I could eat. So in 2015, I started venturing into the world of diet and alternative therapies.
Don’t get me wrong, I’m very grateful to be in remission now (with the exception of this summer when my intestines bled for three months). I’ve worked very hard to try and improve my gut health and microbiome. I’ve tried some wild diets over the years, I’ve been fanatical with my food, I’ve been unapologetic about bringing my own meals into restaurants, I drank raw milk and learned to make sauerkraut, and I slowly found what worked for me. So, to have a new doctor who only spoke to me for about five minutes, only looked at my last two colonoscopies, and heard that I wasn’t on medication, then imply that my experience wasn’t somehow real — “assuming you even had it” — makes me angry, frustrated and sad. For crying out loud, pardon my language, but I was literally bleeding from my ass for three months this summer! That doesn’t even warrant one follow up? Every other gastroenterologist in my past has expressed how important it was to be followed, but not now. I’ve apparently reached the finish line. All done.
Unfortunately, my frustration doesn’t end with my now ex-gastroenterologist. His instructions to follow up with my primary care doctor is equally frustrating because I already know how that game works. I’ll see her, share my symptoms, and it’s up to her whether to refer me back to GI. Even if she does, it will probably be another month or two before I can even get an appointment. By then, I’ll be fine and dismissed again.
When I met with my new primary care doctor here in Florida the week before this gastroenterology appointment, she briefly looked at the blood work that was done the week prior and went over some basic family history. I shared my concern about my still low hemoglobin, but she didn’t want to do anything about it as this was my first time seeing her. (I’m not 100% sure whether she was able to see my records from Texas, even though it’s all in the Veterans Affairs system; also frustrating.) Then she questioned why I had a mammogram done at such a young age (at 40 and again at 41), after I had just explained my family history of breast and ovarian cancer.
Interestingly enough, my cholesterol also suddenly dropped from 220 in February to 168 in October. She didn’t even bat an eye. I’m sorry to say I can’t share my magic secret with all of you out there who might be trying to reduce your cholesterol, because I have no idea what I did, other than move to the beach.
The day after I met my new primary care doctor, I met my new nephrologist, which ended up being yet another frustrating appointment during this 10-day span. Once again, my previous medical records from Texas were not readily available and the nephrologist had to search through digital files to find my kidney biopsy from 2021. He looked at the notes, immediately commented to me that it was not a very good sample they got for the biopsy, and then said that it merely suggested IgA nephropathy. Stunned again, I didn’t know how to respond. My entire expression — other than wide eyes — was hidden behind my mask. He then went on for about 15 minutes explaining how the kidneys work. Afterward, while I was still in disbelief and processing what he had said at the beginning of my appointment, he looked at my biopsy notes again and said that there was definitely disease in them, and that it’s probably IgA nephropathy — because if it looks like a duck, walks like a duck, and quacks like a duck, it’s probably a duck. He said they would certainly be following me in the renal clinic. I scoured my records again, the diagnosis printed in black and white on the biopsy pathology report clearly states IgA nephropathy.
I felt like I had a great team of doctors looking after me and partnering with me in my health at the Audie Murphy VA Hospital in Texas; here, I feel like I’ve been cast aside. I feel defeated.
I came home from my gastroenterology visit last week ready to never go back to the hospital and seriously debating whether I should cancel all my future appointments. I’m tired of every abnormal blood result being dismissed, and having to start over with new doctors. Then, as if the universe wanted to mock me for my desire to never go back, I woke up at 2:00 a.m. on Monday this week feeling like I had been poisoned. My heart was racing, I was dizzy and the room was spinning. I was disoriented, nauseous, my muscles were twitching and my face felt like it was burning.
I was genuinely scared; in all my years, I have never felt like that. I shook my husband awake and told him I might need to go to the hospital. He got me water and I drank and drank. I assumed that if I did go to the ER, that I would probably just be told I was dehydrated. I wandered around the house, sprawled out on the floor, then tried to rest in bed. Four hours passed and I didn’t feel better, then I had projectile vomiting. I woke Jeff again and told him I needed to go to the ER, there was no debating it. So, off we went.
I got checked in right away. They ran some blood work and gave me an IV. When the blood work came back, I was told I had low potassium levels, was given potassium pills and then sent home. A few days later my lab values appeared in my online account and I could review them in detail:
- Sodium, low.
- Potassium, low.
- Glucose, high.
- Carbon dioxide, low.
- Calcium, low.
- Red blood cell count, hemoglobin and hematocrit, all low.
- Urine protein, blood and ketones, all high.
My diagnosis from the ER? Dizziness.
Once again, frustrated.
I don’t have any deep insights or words of wisdom this time. I’m still processing these recent experiences with my new doctors, and writing helps me do that. For now, I’ll keep the follow-up appointment that the ER made for me with my primary care doctor coming up on the 9th, and I’ll turn back to my old friend, Dr. Google. I also feel like it’s a fair assumption that I’m obviously not getting the nutrients I need, so I’m going to refocus on my diet — starting with my latest find, Huel meal-replacement shakes, which are nutritionally complete and contain 27 vitamins and minerals. My first order should arrive today! I also started adding DripDrop packets to my water, which I first learned about from one of my past podcast interviewees 😀, to make sure I’m getting the electrolytes I need. I’ll also reprioritize my meditation sessions to focus on keeping my stress levels down. It may not be a perfect plan, but it allows me to take action and feel like I’m back in control until I can decide my next steps.