GIbberish, part 1…

As I mentioned in the previous post, I had an appointment with a gastroenterologist (GI) nurse practitioner this month. For several months now, I have been dealing with some mostly mild GI symptoms. I’ll get into that in a minute, but first want to start with a little of my GI history, since most of it occurred before I started this blog, and thus has never been discussed here.

GI History

About 15 years ago, during the summer after my first year of law school, I begin to experience a burning feeling in my abdomen. It felt like intense hunger pains that were not silenced by eating. If anything, food intensified the pain. I vomited regularly, at least a few times per day, everyday. Since food only aggravated it, I stopped eating much and lost 8 lbs that first week, another 5-6lbs the following week, and after several weeks, was down a total of 20 lbs. Because I was too sick to attend classes, I obtained a semester leave from law school to seek medical care.

My previous GI doctor

My biggest frustration during that time was the lack of urgency with which my GI at that time treated the issue. He worked on his own time table, and since this was, for the most part, my first major medical issue, I didn’t know that I could, or should, demand better treatment. The GI would order a test – maybe some blood tests or an imaging test – for 2-3 weeks after our appointment. After he received the results, it would take another two weeks for him to call to schedule an appointment with me to go over the results, which turned out be normal. So, every 6 weeks we were completing one test.

In the meantime, I was sitting on my ass with nothing to do, going back and forth between my mom’s and dad’s houses (they’re divorced) when my stepdad would get sick of me. I had moved back to my hometown and was on leave from law school, not well enough to work, and without a job, too broke to go do anything, and too sick and weak from all of the vomiting to do much, anyway. I spent most days at the central Phoenix library just reading about anything and everything. I also met someone and fell in love, despite my best judgment, but it ended in the inevitable heartbreak that comes when two people afraid of commitment, thrown into a temporarily similar situation, decide to give it a go. We were both trying to solve problems through the other person, mine being trying to fit into a life that I wasn’t yet healthy enough to live.

So I continued the slow and arduous process of searching for a diagnosis. I was never entirely sure the GI doc believed what I was saying, as he repeatedly asked if I was sure I wasn’t just bulimic, since I vomited so much. I, like so many young women, didn’t know how to advocate for myself. I didn’t even know that was an option – that I could demand better treatment, that I could remind the world that my easygoing attitude and willingness to please shouldn’t be mistaken for a doormat. I didn’t know that I deserved better.

After about 7-8 months during which we only accomplished a few GI tests, and after my one semester leave from law school extended to two, at my mom’s insistence I finally fired the GI doc. In over half a year, little had changed. Vomiting was down to about once per day, mostly attributably to only eating about once a day, but I was fed up with having my life on hold. I was tired of only eating chicken noodle soup, rice, and toast. That was literally all I ate for several months. I was lonely and depressed and afraid that one day I’d decide that, if I couldn’t get my old life back, the one I had wasn’t worth living. I felt very invisible. And if the folks at the law school tuition department weren’t going to give me a refund, I wasn’t about to write off those tens of thousands of dollars in first year tuition with nothing to show for it.

I got in to the Mayo Clinic in Scottsdale, Arizona, and the experience was a stark contrast to my previous GI. In order to reach a quicker diagnosis, Mayo schedules multiple appointments in one day. Within a week Mayo performed more tests than my previous GI did in 7-8 months.

Throughout that year of GI appointments, I had countless lab tests (meh), stool tests (eww), CT scans (iodine contrast makes you feel like you peed your pants), several barium xrays (yum), an endoscopy (kinda cool), colonoscopy (gross), swallowing tests (insert dirty joke here), gastric emptying test (I’m RADIOACTIVE, radioactive), an abdominal ultrasound (all organs are present and accounted for), and one rather traumatic pelvic ultrasound where the tech forgot to mention that pelvic ultrasounds are done vaginally and I found out when the ultrasound wand was violently shoved inside of me, resulting in lots of blood.

Of all of those, the endoscopy showed some esophageal ulcers (likely from all the vomiting) and a gastric emptying test showed some delayed emptying (gastroparesis), meaning I didn’t digest food as quickly as I should. Mayo prescribed a medication to help with the delayed emptying – sorry, it’s been a while and I don’t remember the name – and proton pump inhibitors (PPIs). PPIs reduce the amount of acid in the stomach which helps ulcers to heal, but a low acid environment is not optimal for vitamin absorption, which led to anemia. We’ll discuss that in a later post.

I actually suspect that the vomiting and delayed emptying were caused by a bacterial or viral infection I picked up while travelling abroad that summer, However, that avenue was never explored, and with time, things returned to normal. Mostly. Eventually I returned to law school, and still struggle with nausea and the occasional vomiting throughout the years, but manageable and somewhat predictable.

But I remained bitter for a while that I gave up 8 months of my life searching for answers in a place I was never going to find them. To be clear, it wasn’t just about the time – I spent years searching for a (what turned out to be POTS) diagnosis with several doctors and remain grateful to those doctors – and it wasn’t even really about the doctor. It represents a time where I blindly handed over the reigns to my health, and however naïve and irrational it may be, my happiness.    I lost a lot in those 8 months, much more than just what can be measured temporally. And while I’m disappointed it took so long for me to advocate for myself, the hardest lessons are never easily learned.

Present day

 

So when I started experiencing some GI related

symptoms last year, I put off contacting a doctor for a while. I know not all GIs will be like my first, but there’s a subconscious expectation that it will be exactly the same. I even made an appointment, convinced myself that everyone has GI issues and a little pain and nausea is totally normal, and cancelled. A couple of months later I kicked myself for cancelling, when I continued to experience symptoms and it took twice as long to get an appointment.

For the record, my symptoms aren’t awful – nothing like before. My primary symptoms are:

• difficulty absorbing vitamins D and B12, and iron
• evidence of fat malabsorption in the form of steatorrhea (you can look it up, but basically it means that, much like my thighs, my poop is kinda fatty)
• occasional heartburn
• lower abdominal pain/cramping & sometimes upper abdominal pain
• nausea, especially in early a.m. and often after eating. and sometimes before eating.

Totally bearable. In all honesty, I am most concerned with the absorption problems. I take loads of iron supplements, which cause more nausea and stomach pain, because if I don’t, I become anemic. Similar story with vitamin D.

I always have mixed feelings about meeting with new doctors. I’m hopefully optimistic that they will help me address health concerns. But I don’t like being vulnerable, and explaining basically all of physical weaknesses to a perfect stranger who might believe me or might ask me if it’s just my period or might tell me that everyone gets nauseous and to just deal with it is scary. I hate that I give up that power, but a doctor has the ability to make me feel validated and understood or like an overreactive failure.

But this time, I was very pleasantly surprised. The nurse practitioner (NP) I met with last week was compassionate, understanding, and very knowledgeable. She spent over half an hour with me, asked the right questions, and also game me some free samples of a natural herb she thought might help, if I was interested in trying that route (something called FDgard, if you’re curious). She didn’t want to move forward with any other treatment until we figure out what’s going on, which I appreciate. I’m never looking for the short-term pill solution – I’m always in it for the long-term answer So, we will be doing the following tests:

• standard labs, like CBC and CMP
• fecal test, fat
• fecal test, H.plylori (a bacteria in the stomach)
• fecal test, elastase (measures an enzyme made by the pancreas)
• abdominal ultrasound

Those are exactly the tests I expected, which shows she listened to what I was saying. I don’t expect the ultrasound will show anything, and hope that’s the case, as I don’t have any reason to believe something is structurally wrong with my organs. But I can appreciate that it’s a necessary step to rule out causes.

I don’t have high hopes that we’ll reach a quick diagnosis, or that we’ll even find a diagnosis at all. But we’re already moving at a much faster rate than my GI appointments 15 years ago. And honestly, that’s all I’m asking for.

Live as though you were living for the second time and you had acted wrongly the first time – Immanuel Kant

Smell ya later.
– Linds