The H. Pylori Story?
I went to see a GI specialist on June 1st, 2020, and this was one of the first times I was leaving the house that wasn’t to go to the emergency department.
I had looked rather strange because I was still bent over 90 degrees and proceeded into the whole office that way. I remember how many people were staring as I was hunched over making my way to my appointment.
The doctor ordered a lot of blood tests, some which I had to travel to multiple different offices to get done. The GI specialist also referred us to see a nephrologist (kidney specialist) as they believed this seemed more like something kidney related.
Of the blood labs run at the office, we were focused on two main ones as to possibly give us a hint as to what could be going on- a blood test for Celiacs Disease (Tissue Transglutaminase Antibodies) and a blood test for a stomach infection called H. Pylori.
Here’s the deal with H. Pylori, apparently if you’ve ever contracted H. Pylori in your life, your H. Pylori Antibody test will always be positive. To see if you have an active infection, it needs a blood test AND a stool test to confirm it is an active infection (there are also other ways to confirm such as a biopsy or breath test).
Let’s just say we were entirely unaware of this until much later…
Anyways, for the H. Pylori blood test we went to another office the next day to get it done. Turns out the office we had waited over an hour in couldn’t do that blood test (even though we had called in advance), so we had to wait another day and traveled to a hospital to get it done.
On June 5th I had a virtual visit with my nephrologist, and we discussed possible next steps. They said it could either have something to do with these unusual cysts on my kidneys or it was something entirely unrelated to my kidneys. An MRI with contrast was ordered.
For those who have scheduled MRIs, you may know that all of this is spread out over a LONG period of time (usually months). It’s one of the not-so-joyful things about the limbo period- the waiting game.
My parents were on the phone the whole day and managed to get me on the schedule to do an MRI the next day.
I went in to do the abdominal and spine MRI and it was much more challenging than I expected. It was loud, but the challenging part was that I had to hold my breath multiple times for the photos, and I had a heavy coil laying on my upper abdomen. With a shirt being too bothersome and tender, the coil really stirred up things. Doing deep breaths at this time was also quite painful so I was really glad when it was over.
June 9th, we got the blood test results back and I had a weak positive for Celiacs and a positive for H. Pylori. I had also received a call from my MRI results from the nephrologist- she said the cysts were all normal and she wasn’t sure if I ever had a kidney infection given, these “cysts” were what the hospital was basing their diagnosis from.
On June 10th I had a phone call appointment with my GI specialist; I was prescribed the crazy medication regiment they use to get rid of H. Pylori and was scheduled for an upper endoscopy and breath exam to retest for H. Pylori after the 2-week treatment.
The medication treatment for H. Pylori uses multiple medications because the bacteria has a tendency to become resistant when you treat with only one. So, I was given a combo of 3 medications that was coupled with Pepto Bismol in between along with Omeprazole, Tylenol, and nausea medications.
June 11th, we started the pill regiment. I had started with just one of the pills (Clarithromycin) on its own in the morning to make sure I didn’t have any reactions (normally I would’ve taken 4 together).
I went to use the restroom 10 minutes after taking the pill and when I left from the bathroom, I collapsed on my bedroom floor screaming in pain. My whole family ran into my room and my mom began dialing 911.
The medication felt as if it was burning the inside of my stomach-so let’s say I wasn’t a happy camper.
My dad carried me into my bed as I continued to thrash about screaming. The EMTs arrived and told me I needed to lower my heartrate for them to be able to administer the pain medication (Fentanyl), so my dad helped hold my legs down and I had the most difficult challenge of trying to calm my heartrate while being in severe pain.
Somehow, I managed to do it and the Fentanyl enabled me to stand up and walk down my stairs (which was INSANE considering I hadn’t been able to walk down them in months) to get to the stretcher which they couldn’t fit in our stairway.
I arrived at the hospital to have yet again, the same ER doctor as the time in January and the most recent time in May. It was almost comical that I was back again.
I was told that there might’ve been ulcers and a lot of inflammation in my stomach that might’ve exasperated this reaction to Clarithromycin. We had tried to call my GI specialist and left portal messages, but they didn’t respond so we asked our primary care doctor to change my pill regiment.
After some number of hours, I was feeling better and ready to go home. Here’s the thing that we learned from this 911 call, when you call an ambulance remember to bring shoes for when you leave the hospital.
It dawned on us as I was getting ready to leave that I was completely barefoot. I was given a pair of hospital socks and sent on my way home.
I think the best part of this were the looks we got in the hospital lobby as we left with me hunched over, barefoot, in my pajamas, limping (because my foot injury was still a thing) looking completely disheveled (I have an image below from this exact moment).
Find out what happens next on the road to treatment in the story titled “17 Pills A Day Won’t Keep the Doctor Away!”