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). 

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June 11th, 2020

Find out what happens next on the road to treatment in the story titled “17 Pills A Day Won’t Keep the Doctor Away!”

The Hell Weeks & The Return of the UTI

I titled these weeks the “hell weeks” for a reason- they were exactly that.

The story begins when I arrived home from my hospital visit on April 14th, 2020, when I had been diagnosed with a bilateral kidney infection. I remained in bed for the remainder of the week and was in even more pain than I was before. 

We were calling doctors and hospital nurse help lines constantly trying to figure out if my symptoms were normal. It wasn’t until maybe the third day in, that I noticed my left rib cage swelling out because of the Cefdinir. We had assumed that meant the medication was “working”. 

When we weren’t on the phone desperate for answers as to what to do from nurses and doctors, we were left with the hellish reality that was my day-to-day life at this time. 

I was in such excruciating pain that all day and night my body was in fight mode. I was at about a pain level 10 24/7 unless it was spiking higher. 

I was unable to even roll over in bed and had to have my mom and dad roll me over. It was a very difficult time as when they would do so, I would scream out and cry in pain-completely out of my control. 

Getting to the bathroom was an absolute nightmare; I would have my mom or dad help me out of bed and the whole journey would be a 20-minute time commitment. I would sit on the floor and cry from the pain of getting out of bed and onto the floor, then would proceed to slowly crawl my way into the bathroom (again with the help from parents). I wasn’t even able to pull my pants down or grab toilet paper, so my mom had to do that for me. 

There became a point where I couldn’t crawl to the bathroom anymore- I couldn’t move from the pain. My family (who I just want to mention here are absolute SUPERHEROS) came up with a plan of how to carry me to the bathroom. My mom would grab one leg and my brother or dad would grab the other and did a 2 handed seat carry to the toilet. From there my mom would take over and help. 

I couldn’t shower so my mom would bathe me, and I had no way of getting a break from the pain. I struggled to be able to even watch TV on my phone- the pain was so loud that my body wasn’t able to be distracted from it. 

I lost so much independence during this time because of the illness, and I was so frustrated. 

My mom had offered to me adult diapers to try to avoid how painful the whole bathroom excursion was, but I refused to have the one piece of control I had left, taken away from me. 

My mom took time off from work to care for me full time. She even set up a fold out table and chairs in front of my bed so we could have family dinners there every night and I could hear what they were saying and be included. She also set up a TV in my bedroom in the hopes that the pain would lessen, and I’d be able to watch it. 

Amongst all of the pain I could hear- it was the one thing I could do that wasn’t painful. I felt so fortunate that my family tried to have me not suffer alone. 

This was such a sensitive and emotional time for my family, and it had its ups and downs. 

We switched primary care doctors and finally got someone to listen, doctors were beginning to get concerned with how bad my pain was and that things weren’t improving. I was then prescribed codeine to try and help with my pain. 

At the end of the first week (April 20th) I was finally able to almost stand up but unfortunately, after this one day, my symptoms all turned the corner again.

On April 27th when my Cefdinir ended, I was finally able to move around, and symptoms were more manageable, but I was still super bloated, and my left rib cage was still stuck out. I wasn’t able to get my bra on because of the amount of swelling. I thought it was odd but figured the swelling would come down eventually…

The first two weeks of May 2020 went relatively normal; I was back to moving around and wasn’t feeling sick aside from some abdominal tenderness and swelling. 

I think we all know that this isn’t going to last… if only Emma from the past knew…

On May 10th, I had the sudden urge to pee. Uh-oh. Not AGAIN.

I remembered this sudden urge to pee as it had matched with what had happened back in March that one weird day. I had no pain but just had to pee very frequently just that day.

Knowing that there seemed to be a pattern here, I went to the doctor to get a urine test done and sure enough, UTI AGAIN. 

We did a urine culture to try and figure out specifically what type of bacteria it was and why it seemed to be coming back. I was prescribed Nitrofuratoin (a very aggressive UTI medication) and after 4 doses (the second day of taking it) I had vomiting and severe abdominal pain from the medication. I discontinued this medication and had my urine retested to see if the UTI was still there. Yep- it was.

Because of this severe reaction, my doctors put me back on another 2 weeks of Cefdinir. 

At this point from taking 4 weeks of Cefdinir, my left rib cage was stuck out in the front and back and I contracted a yeast infection. We started to take notice of how much my abdomen was increasing in swelling, so I discontinued taking Cefdinir towards the end of my 2-week treatment. 

I had called my doctor to mention I was still having epigastric and flank tenderness, but they never got back to us even after multiple phone calls and portal messages. My family and I came up with a plan that if things got worse in the next few days, I would go to the hospital.

I think we can all guess what happened next-

May 31st, 2020, I was up all night hunched over just like I had been April 14th. I went back to the hospital and ended up getting the same ER doctor as I had when I went in January. They said they believed the incidents were all possibly connected but we all didn’t know how. I was in a pretty significant amount of pain so when I was physically examined, the doctor noticed hives all over my abdomen and back. We figured these were a stress response to the pain. I had mentioned why my left rib cage was so swollen and the doctor said that was highly unusual, especially if it was because of the Cefdinir. The doctor said they weren’t sure that I ever had a kidney infection because my tests weren’t adding up.

The doctor referred us to see a GI specialist to see their thoughts. 

I was prescribed Omeprazole again and told to try taking it to see if it helped with my symptoms.

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April 10th, 2020

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May 2nd, 2020

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May 31st, 2020

Continue to the next story titled “The H. Pylori Story?” to read what happens next!

The Double Kidney Infection?

It’s 1 p.m. on April 9th, 2020, and I’m opening the fridge to get my lunch. As I’m opening the door, I am suddenly hit with a weird feeling…

I grab my lunch and sit down to begin eating and I start getting abdominal pain and nausea that begins to grow. I quickly finish up my food so I can lay down. As the pain continues to increase, I immediately recognize it- pain all on the left side of my abdomen and my flank, just like what happened in January except, this time, it doesn’t feel as severe. 

I let my family know that I’m having pain and I decide to lay on the couch and wait for it to go away, since last time, it dissipated in 8 hours. I was sitting pushing the front of my left abdomen in while I asked my mom to push my back in- this, for some very bizarre reason, helped minimize the pain. I wasn’t crying in pain, so I wasn’t too concerned to go see anyone about it since it felt like the “mini-version” of what happened in January. 

Little did I know, the pain wasn’t going away this time, it remained continuously for the next 32 hours until it started increasing. 

 We scheduled an appointment to see a gynecologist since the pain wasn’t going away and we had been told previously that it could’ve been an ovarian cyst. I did an ultrasound which showed nothing and a urine test which we never got the results from. The gynecologist said they didn’t think I had an ovarian cyst rupture in January and that my pain was too high up and seemed like a GI or renal issue. 

As I continued eating over the next few days my stomach was bloated and even drinking would cause this tight balloon-like feeling all over my stomach. Eating began to start to make me nauseous and add pain, but it would dissipate each time after a couple hours. 

3:29 a.m. April 14th, I had been awake completing a math assignment for my newly COVID safe virtual high school classes (since I had been asleep for most of the day) when I suddenly sprung out of bed because I started dry heaving. I was so confused and unsure why I started having a large escalation in pain. 

I was unable to touch any part of my abdomen or back this time, everything was so tender that it would cause me to go into another dry heaving fit (among the one I was already having). The most tender area was the center part under my rib cage. 

At this point I was bent over completely 90 degrees again. Anytime I attempted to stand upright I was in a ton of pain and would begin dry heaving again. I ran around my bedroom trying to frantically find a position that would relieve my pain, and nothing was working. I had tried lying down but that had the bed touching my back and was basically equivalent to standing upright. I then finally found a position that worked- sitting in my desk chair with my feet touching the floor and my head between my knees bent over completely. This was the only position that stopped the dry heaving and minimized my pain to a bearable level. 

At around 6 a.m. I finally was able to get back into bed (after attempting a couple times and having to get up again) and go to sleep. 

I woke up for the day at 11 a.m. and explained to my parents what had happened during the night. We went to the hospital 30 minutes later.

At this time, I was still hunched over 90 degrees and had trouble walking into the emergency department. Because of COVID protocols and my 18th birthday being a couple weeks prior, I was required to go into the hospital alone. 

It was the first time I had been in the hospital alone and I was panicked as I was trying to answer questions while still in a lot of pain. 

I had blood tests, urine tests, an abdominal ultrasound, and a CT with contrast done to try and see what was wrong. 

Things were hectic in the hospital since I was nearby a COVID ward, there was a patient who was getting arrested in the room next to mine, and my ER doctors kept getting switched since they were being called onto emergency surgeries. 

My first ER doctor thought I had something that was GERD related meaning something that had to do with gastroesophageal reflux disease. I was given a “GI cocktail” which was this super thick liquid that was thicker than drinking glue. I almost choked a few times with how dense it was. I didn’t notice any relief.

My second doctor came when we had gotten all of the test results back- my urine test came back showing blood in the urine (which I was unaware I needed to inform them I was on my period at the time), bacteria in the urine, high white blood cell count meaning a sign of infection, and my CT scan showed these “unknown lesions” on both of my kidneys. With all of these things linked together, along with my symptoms of flank pain and upper epigastric abdominal pain, it made sense why the radiologist diagnosed me with a bilateral kidney infection. 

They said I likely had a UTI that had been untreated since I didn’t know it was there (I didn’t display any symptoms other than one day in March when I had the urge to pee a lot) that turned into a bladder infection and then spread to both of my kidneys. 

I was prescribed omeprazole by the first doctor (which I didn’t take since we figured that wasn’t my issue) and a very strong dose of a medication called Cefdinir to get rid of the bilateral kidney infection. 

I was supposed to take 2 pills of Cefdinir every day for 2 weeks to get rid of the infection. I was told I would feel better after about the first week into the medication. If not, we were informed to call the hospital since it could mean my kidneys were going into sepsis. 

My heart rate wouldn’t go down during my whole ED visit so right before I left, they gave me an anti-anxiety medication to see if it would bring it down. 

It did-and I was discharged as a very dizzy and high Emma held onto the wall railings as I attempted to find my way out of the hospital to find my parents and go home.

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April 9th, 2020

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April 14th, 2020

Find out what happens next in this story by reading “The Hell Weeks & The Return of the UTI”.

The Curse of the Golden Heels

It was the week of March 14th, 2020 and I had just lost at a theatre competition and was packing up the show before spring break. 

The competition meant I was on my feet in my show black Keds standing all day and occasionally lifting set pieces and boxes that were way too heavy for me. In the evening we had an award ceremony that everyone had to dress up for so I changed from my black Keds into my gold lace up block heels (which are featured in many of my website photos). They are super comfortable and a low heel height so I would usually wear them to school to add a kick to my outfit. 

After I got into my heels we had to load our truck with the set pieces from the show. So, there I was on the slippery tile pushing a costume rack as I slid along the tile to the truck. I then proceeded to hop onto the truck and help load things in. Later when I got home that evening, I remember wanting to be careful with my feet for the next couple days since they were pretty swollen by the time I got home. I had even gone to bed wearing arch supports since I’ve had foot cramps in the past due to the lack of shoe arch support.

The next 3 days I wore my memory foam sneakers to try and calm any potential foot cramps or injury (-little did I know what the future had in store). 

It was the Saturday beginning spring break (March 14th, 2020) and the world had just been announced it was shutting down because of the COVID-19 pandemic. I woke up and sat on the edge of my bed to stand up. As soon as I did, I immediately lifted my foot up and said “ouch”- it was as if I had stepped on a thumbtack right underneath my big toe. After close examination of the floor, I found there was nothing there. 

Step-ouch-step-ouch.

What the heck?

I sat on the floor and looked at the bottom of my foot and pressed my finger under my big toe- OUCH! Weird….

So, in true Emma fashion, I waited a week before doing anything or telling anyone. Not recommended. I guess I wanted to be sure something was wrong and that it remained for a significant period of time before looking further into it.

So, what did I do that whole week before telling anyone? I limped and walked on the outside edge of my foot that whole week. This also is what began my daily notetaking of my symptoms and what changes were happening. 

As I continued through the week to walk on it to see if the pain was increasing each day, I began hearing my joint click every time I walked. The clicking didn’t hurt-just bearing weight. 

When I didn’t bear weight, I didn’t have pain so I spent lots of time sitting or just being off my feet in general. 

It was a few days into the week when I noticed some light bruising and swelling around my interphalangeal joint (IPJ) which is the joint that allows your big toe to bend. 

On day 5, the foot pain began keeping me up at night. Because I had been moving my foot unusually for almost a week, I had lots of pain at night with my foot feeling as if it was being crunched into a ball even though I’d look and see it completely normal. I also had times where it felt like it was being electrocuted or like it was on fire. 

Throughout the week swelling increased.

It wasn’t until March 24th that I went to see a podiatrist. They took some x-rays and diagnosed me with subhallacal interphalangeal sesamoiditis. It basically meant they thought I had an extra sesamoid in the IPJ of my left big toe and that’s what was causing my pain. I was put in a CAM boot for a week and told to try not to walk too much and to ice with any swelling.

The foot continued to keep me up at night in pain and even in the walking boot if I stepped incorrectly, I’d feel that “thumbtack”. 

The end of the week had come, and I went back to the podiatrist and mentioned things hadn’t improved. I was then told to wrap my big toe with self-adhering wrap in a specific way for a week to see if that would help.

If only I had known at this point that my foot injury journey was just beginning…

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Image of Emma's CAM Boot on her left foot in a mirror.

This isn’t the end of the story, but it is for this chapter. See more on the next story titled, “The Double Kidney Infection?”

The Very Beginning

As Julie Andrews says, it’s always a great place to start…

My story begins in Texas, January 22nd, 2020. It’s the second semester of my senior year in high school and I had recently come back from interviewing with colleges for my major. My mind and body are ready to be graduated from high school so I’m counting down the days to leave!

*BEEP* My alarm sounds off at 9 a.m. and I roll over to get out of bed. As I am sitting up on the edge of my bed, I have a really sharp deep pain in my abdomen that is generalized to everywhere. I struggle to be able to stand up and for some reason come up with the *not so genius idea* to grab my backpack (that was filled with textbooks) to swing it over my shoulders to pull myself upright. 

As one would expect, the backpack method only made things much worse. Hunched over 90 degrees, I hobbled to the bathroom to see if peeing would help. Nope, still not great. I got my clothes on and hobbled my way downstairs to my mom. I explained to her that I was feeling weird we decided that I should lay down on the couch for the remainder of the time before I went to school to see how I felt. 

Within this very short fifteen-minute time period I went from talking to suddenly crying in severe pain and unable to move. I was grabbing tightly at my whole left side of my abdomen and flank. My mom and dad rushed over to try and gather what made things escalate at random. I couldn’t talk and my body was in full fight or flight mode. We had lived nearby to a doctors office so we went there first to get their advice as to what was going on. My dad picked me up and transported me into the car as I continued to cry and hold tightly to my left abdomen. 

Unfortunately, doctor’s offices tend to not expect patient walk-ins so we spent half an hour in the waiting room with me crying in a chair again, clinging STILL to my left abdomen. When we were finally let in, I was in too much pain to be examined and was rolled up like a roly-poly. We were advised to go to the emergency room at a nearby hospital.  

I’m in the car and shocked by the amount of pain I’m in. My knees are tucked up by my chest and I still haven’t let go of my left abdomen or back- the pain is in such a large area that I’m not able to grab everything to hold it tight to try and reduce the pain. I remember feeling afraid in the back seat since the doctor had said it might’ve been a intestinal blockage that would require surgery. I was writhing, crying, and groaning in pain all completely out of my control- I was just in my head along for the ride as my body’s fight response took over.  

It was the worst pain I had ever felt in my life.

I got into the emergency department, and they were hesitant to give me pain medications because they didn’t know what was causing the pain and where it was coming from. 

They ran blood tests, urine tests, and did a CT scan of my abdomen with everything coming back normal. After 8 hours from the initial onset of pain it began subsiding for no apparent reason. The ER doctor came and said they had a few guesses as to what it might’ve been; they had seen on my CT an ovarian cyst on my right ovary and said maybe there was one on the left and it ruptured. They said because I went to the doctor’s before coming to the ED the fluid might’ve already started being absorbed so they couldn’t see it by the time I got the CT done. Their second guess was an ovarian cyst rupture with a possible partial ovarian torsion which meant they thought that a possible cyst could’ve been heavy enough to twist my ovary and when it ruptured it released back. And their last theory was a potential kidney stone that we might’ve missed during the urine clean catch (which makes you not use the first stream as the sample). 

I was sent home and told if something like this happened again to go straight to the hospital and ask for an ultrasound to try and catch if it’s an ovarian cyst rupture.

I took the next day off school since it was still a little challenging to stand and move around but returned to school on the 3rd day. After about 5 days I was completely back to normal and tried to ignore the randomness of the unknown flare attack and if it would strike again.

So, the verdict? Unknown, and this only begins the unknowns that are left ahead. Still to this day I have no idea what it is that happened, only guesses.

Scroll past the comments to find the link to the next story!