I've been to the hospital a few times since I've been diagnosed with Celiac Disease, but I've never been in such severe pain that I couldn't advocate for myself. Thank goodness for my husband being amazing.
So here's the story...(fair warning, I'm including some graphic detail)
Recently on a Friday morning, I had to pee twice before work, and then again when I got to work. The urgency seemed like it was from a UTI, but that was the only symptom of a UTI. I seemed fine the rest of the day so I didn't think much of it. The urgency came back with a vengeance around 8pm. I would no more than get out of the bathroom, and I had to go again. I couldn't handle waiting more than 10 minutes between trips even though it was never more than a few dribbles.
I headed to bed around 9:30 because the left side of my back was starting to hurt, and I figured I wouldn't have to pee if I was sleeping. The pain began to get worse, so my husband brought me a heating pad. Five minutes after the heating pad warmed up, the pain was suddenly unbearable. I was crying out in pain because it was so bad.
I still needed to pee every five minutes, but it was nearly impossible to make it from my bedroom, through the living room, through the dining room, through the kitchen, and into the bathroom. I finally talked my husband into bringing me a garbage can that I could squat over right next to the bed (I'm not proud of this). I was also dealing with bouts of nausea, so I also had a bucket to puke in next to me.
At some point in this process, I became incredibly nauseous. At that point, I had to pee constantly, I thought I was going to puke my guts out, I had a horrendously painful pain in my back, and a horrendously painful pain in my lower left side. My poor husband didn't know what to do to help me, and we kept discussing me going to the hospital, but every time I've gone to the ER in the last five years, they've been unable to do anything for me and sent me home with instructions to see my regular doctor.
About an hour and a half after trying to go to bed, I went back to the bathroom with the thought that a change of scenery would help. It didn't. I immediately vomited into the bathtub. While my husband cleaned the bathtub, I laid a towel down on the floor and curled into a ball on the floor. A few minutes later, I told him it was time. We needed to go to the ER because something had to be seriously wrong for me to be in that much pain and vomiting. I went to the bathroom one last time, and he helped me to the car.
I tried to keep quiet, but I was still crying out in agony as we walked in. I was completely hunched over, so I wasn't able to see where I was going because my head was down. I don't remember much about getting checked in and the triage process except that it seemed incredibly quick while taking forever. I remember sitting down in a wheelchair and being annoyed that they made me put my feet on the footrests because it hurt so much to move, and I wanted to just let my feet hang. I remember signing something that I had no intention of reading and thinking my signature looked nothing like my signature. I remember they had to take my blood pressure more than once, and the pressure of the cuff on my arm was excruciating. I remember saying over and over again that I needed to use a bathroom, and they kept telling me I could soon. I remember them asking me what my pain level was on a scale of 1 to 10, and I almost said 9 because I was so afraid I would jinx myself if I said 10 and the pain would get worse. I remember crying out in agony throughout the whole process and hoping that no one I knew would see me.
They wheeled me immediately from triage to a room, and I asked for a commode along the way because I really needed to pee. They said they'd get me one soon. When I got to the room, they had me lay down on a bed, and I asked for the commode again. They said they needed a urine sample, so I'd have to wait a minute. I finally agreed to walk to the bathroom with my husbands assistance because I needed to go so badly. They gave me a cup to pee in and a wipe as I went in. I didn't care if I gave them a bad sample at that point, and I knew there wouldn't be much, so I wiped as best I could and caught everything. The whole thing amounted to filling about a centimeter of the cup. Once I was back in the room after peeing, I begged for a commode again because I already had to go again.
I don't remember the order of events exactly, but the doctor came in somewhere along the line soon after I was put in a room. I felt horrible because he would push on one spot, and I'd get a random wave of pain that had nothing to do with what he was doing and I'd cry out in pain. I could tell he was having a really hard time actually examining me. I was curled up in a ball laying on my left side, and I knew he needed me on my back. I remember him asking if I had ever had a kidney stone, but I don't remember much else about the exam.
I remember a different nurse coming in for something after the doctor left, and my husband talked him into getting me a commode. Meanwhile, a nurse put in an IV, and I guess they drew blood too. I remember warning the nurse that I have horrendous veins when they came to put the IV in, and bless whoever it was for getting it on the first stick. I was relieved to be able to use the commode, but I noticed blood in the IV, and I had to go again immediately after using it anyway. I thought the IV was hooked up to fluids, but I guess I wasn't connected to anything yet. My husband was able to calm me down about the blood in the IV, but I don't remember how.
As I laid down from using the commode, the nausea hit me again, and I begged for something to vomit in. I'm thankful my husband had brought something along from home because there weren't any nurses nearby. I was horrified to discover I was vomiting food I hate eaten over 6 hours earlier.
A minute later, the pain in my back and my side suddenly got horrifically worse. My cries of agony suddenly turned to screams. I felt horrible to be making such a scene, but I couldn't help it. I remember saying I just wanted to pass out and I needed something to make it stop. I also remember the nurse saying something about my pain level hitting 35 instead of 10. I have no idea how long of a time span it was between vomiting and the nurse coming in with pain meds, but my husband said he thought my vein was going to burst considering how fast she pushed it through the IV. She told me it was Dilaudid, and I was going to experience 10 seconds of horrific chest pain and then my head would feel really funny. The chest pain was so bad I thought I was going to die, but she kept her calm and told me to count to 10 and it would be over. Thankfully, she was right, but I have no idea what kind of fuss I made while it felt like I was having a heart attack on top of the back and side pain.
The meds kicked in quickly, and brought my pain level down to about a 5 or 6 within a minute. I was incredibly grateful for the reprieve from the pain. It was amazing how it didn't seem so bad anymore even though I would have thought it was horrible had I not been at a pain level of 10 just minutes before. They also gave me an anti-nausea medicine, which I was very thankful for.
It was then that I realized our car was still parked in front of the ER entrance, so I told my husband he should probably move the car to the parking lot so it wouldn't get towed. The pain meds had also relieved much of my anxiety, so I was ok by myself for a short while.
A short while later, they came to get me to have a CT scan done. I was completely loopy from the pain medicine at that point. As they wheeled my hospital bed down the hall, I asked the nurse if a doctor I knew was working. I felt like I sounded drunk, so I decided to shut up after that, and I was thankful he wasn't there.
It was a relief when I was able to move myself fairly easily from the hospital bed to the table to have the scan done.
I didn't have to wait long for a diagnosis. The doctor came in to tell me that I had a 2mm kidney stone just above my bladder. He said it should move into my bladder fairly quickly, and then it would just bounce around in there for a while until I peed it out. I questioned how long I would be in pain, and he said it wouldn't affect me once it was in my bladder. However, it would possibly cause a few seconds of pain when I did pee it out.
The doctor explained that I couldn't work for two days, and I needed to stay home and rest those two days. I was given a filter that I was supposed to pee into until I passed the stone so that I could have it tested to determine what it was made from. The type of stone would determine if I needed to make a change to my diet and how likely it would be for me to have another. I asked why I had the symptoms I had, and he said that I needed to pee constantly because the stone was causing bladder spasms which made it feel like I needed to go. The vomiting was due to the extreme pain I was in. The pain was because the stones have jagged edges, and it was traveling through the ureters and hitting the edges.
He prescribed me four medications. Two pain medications, an anti-nausea, and a prostate medication. The prostate medication would open up the ureters and urethra to allow the stone to pass more easily. The anti-nausea was to be taken the second I was nauseous to prevent future vomiting. The pain medications were to be taken regularly to prevent pain. I was told that if I started feeling pain again, it would already be too late.
I didn't bother asking the doctor if the medications were gluten-free as I figured he wouldn't know. I did mention it to the nurse as I was being discharged, and I almost laughed because she went on the internet and found a list of gluten free prescriptions and printed it out for me. I had seen the list before, but it's not something I've ever relied on because I know manufacturers change prescriptions constantly. My purpose in asking the nurse was I figured if they did know anything, they could modify the medication being prescribed prior to me leaving the hospital.
I was discharged approximately an hour and a half after arriving at the hospital. I was shocked when my husband told me how long we had been there. Despite the quickness, I wanted nothing more than to go home because I was exhausted. Unfortunately, we needed to fill my prescriptions so that I could maintain the pain medication. One of them was a narcotic, so I couldn't simply send my husband to fill them for me. I was not happy to hear there were only two pharmacies open past midnight, and both were across town.
The movement of the car caused my nausea to come back, and I wanted nothing more than to go home and lay down in my bed or at least sit in the car rather than going into the pharmacy.
The pharmacist wasn't much help when it came to whether or not the prescriptions were gluten-free either. He was able to check the manufacturer information, and each of them basically said that they didn't contain gluten, but they couldn't guarantee against cross contamination in the fillers. He recommended I simply try them and see if I got sick. I told him I would do additional research on my own as ingesting gluten meant being sick for two weeks, which I couldn't allow to happen.
I discussed it with my husband on the way home, and he agreed that it was probably a negligible risk. I am incredibly sensitive to gluten, but research indicates someone can safely ingest 20ppm gluten. All four medications were on the gluten free list, which I would never rely on, but it did help that it had been confirmed at some point. Even if one of them did contain gluten, it would have been a matter of cross contamination to the filler which would mean a microscopic amount. I was supposed to take each of the medications with food, so that would decrease the ppm.
I never had a reaction to gluten, for which I am incredibly thankful. It's been a few weeks, and as far as I know I haven't passed the stone. The filter I was given fell apart after the first day. I began peeing into a container, but I had to discontinue that once Monday morning rolled around because I wasn't about to do that at work. I assume it passed without me noticing at some point, but for at least a week, I was nervous every time I went to the bathroom.
So that's my story. I'm still frustrated by it, but I'm no longer surprised at how hard it is to get information about the gluten-free status of medications. You would think that the manufacturers of prescriptions would realize how important it is to have ingredient information available for those with intolerances and allergies due to the negative health repercussions of ingesting them. I often wish I could simply take all medications via IV because then I wouldn't have to worry about gluten content because I wouldn't be ingesting them.
Do you have any emergency room or hospital stories? What was it like finding out the gluten-free status of medications being prescribed?