When you have a rare disease it’s a really scary feeling knowing you know more about this disease then most doctors and nurses. You want to feel safe in a hospital setting surrounded by doctors not more frustrated and more concerned. Well Friday night I went to the ED. For me, like many chronic illness superheroes to go to the ED is a huge thing, it means we really reached our pain limit that we deal with day in and day out. Don’t forget chronic illness is CHRONIC. Going to the ED as a chronically ill patient unfortunately comes with so many ptsd moments and fears. Being believed is half the battle.

I get to the ED around 10:30 pm Friday night with my mom & my dad. I am blown away by how sweet the staff is and how they right away started me on morphine. I tell them I have FMF (not one doctor or nurse proceeds to ask what FMF is) and I tell them I have Crohn’s disease. (I didn’t tell them I have arthritis just because it’s currently not affecting me and being controlled by pain meds and it was truly the last thing on my mind.) I proceed to tell them about the pain I am experiencing which is near my kidney. I kept saying to my mom if they can’t figure out what this is, I really think this is FMF related or a bad FMF flare. They first think it’s a kidney stone (which I along with my mom, had a gut feeling it was not) and they schueduled a CT scan. Now I am on dilaudid because the morphine was not touching the pain, and I wanted to get comfortable and relief! I do a urine test and fill it all the way up… and headed over to CT.

The CT scan did not show a kidney stone however it did show my bladder was 4x the size it should be… of course I started freaking out and asked my ER doctor if this is normal and she replied “no, not for someone your age.” so I proceed to freak out even more. I was peeing fine the whole entire day. So why is my bladder 4x the size it should be?! Now this is another issue I have… I came in for kidney pain and now finding this out is even more stressful!!!! The doctor who was very nice decides to do an ultrasound. Side note; can you believe there is ONE ultrasound tech / machine that the ER shares with Gyno and a lot of pregnant ladies were there lol so I had to wait a few hours. Finally the ultrasound machine and tech shows up and yup my bladder is 4x the size it should be. No one can figure out why. So now I am being told I need a quick pull catheter inside of me…

I start freaking out crying, I am imagining a quick pull catheter is a hard painful cold metal applicator that will hurt and be so uncomfortable. Granted, it was not. It was actually not uncomfortable at all (now remember I do have dilaudid in me.) It was rubber and not painful. Uncomfortable at times yes, but painful? No. The doctor was hoping to retrieve 100-150 ml of urine. The Doctor said 100-150 ml of urine indicates you have a full bladder… they retrieved 450 ml of urine!!!! On top of me peeing no problem all day and all night. So now we are all even more puzzled. When you’re in a hospital setting the last thing you want to see and feel are your doctors and nurses being puzzled by your health– but it happens way too frequently for me unfortunately.

Side note: I have a huge dermoid cyst laying flat on my left ovary that needs to be surgically removed. Back in June or July I had to see for the first time an Oncologist Gynocologist. Only my close friends and zoom members knew about this. It has been a terrifying journey having to see an Oncologist and really puts things in a whole different perspective. I have been seeing this oncologist and the surgery is something I know I need to have done and we’re in the process of it all. Now when the ER doctor and nurses saw this cyst in my CT scan they started blaming the cyst on my kidney pain. I told them but the cyst is my left side and I get cyst pain and this is not the cyst pain I normally get and this pain is my right side. It feels more like my FMF. They totally flat out ignore the FMF statement and told me the cyst pain can radiate (which obviously can be true) but again, I knew this pain was not my cyst pain – having cyst pain and having kidney pain I know the difference. Then once they saw how much urine they retrieved they said ok you have been holding in unintentionally so much urine that this pain is your bladder holding all the urine and now that we retrieved the pee your pain should go away. I was realllllly hoping this would be the case, because it was easy, they removed the pee and then I go on my merry way. However it was not…

Since the pain was still occurring once they emptied my bladder… they went back to blame my cyst on the pain. They told me they have to call Gyno in. A gyno who isn’t an oncologist gynolocigst but one who works along side the oncologist gyno who I am schueduled to have my surgery with. I am eager to see him and see what he has to say. They told me he will determine if I am getting admitted to gyno to have emergency surgery or regular admissions. He was in the middle of doing an emergency c section and should be two hours… well I think he did about 6 of them because I didn’t see him until 9 am the next day. 10 hours later…

We wait all this time to be seen by gyno and guess what. He doesn’t think it’s cyst related. Yes he agreed like we knew, that my cyst needs to be removed but it is not cyst related. He then tells me my kidneys are dilated along with another body part I am not remembering LOL. My mom asks him if he can please let the team know and he said absolutely. The gyno also tells me “I have to be honest, we read one paragraph of FMF in medical school and that’s it, because it is so rare.” Do you know how much I appreciated hearing this from a doctor? This is way more reassuring to hear that he was being 100% honest with me then doctors who tell me they know what FMF is and proceed to treat me clearly not knowing what FMF is and then when I do say something about FMF they get very dismissive. Out of all the doctors ironically I felt the most comfortable with him because he spoke the truth and was also willing to learn what FMF is!!!!! Remember, patients know their bodies best.

Long story short my ER doctor told me I am going to be admitted because they clearly don’t know what is going on. As I am waiting to get admitted an internal medicine doctor comes in, she comes in right away with a nasty attitude. FIRST thing she says to my worried mom and myself who is in high pain, “you have no reason to be on the pain meds you’re on” AS IF I AM THE ONE ASKING FOR THE MEDS?!?!?!?! “If we all tested our kidneys they would all be a little dilated” this is what she is telling a patient who has a disease that is known to cause kidney failure… I am SO taken aback and upset. My mom says “are you familiar with FMF doctor?” she replies “I am not an infectious disease doctor but yes.” WHAT KIND OF AN ANSWER IS THAT?! So then my mom replies “since you’re familiar with FMF you would know FMF can cause kidney failure so when we found out her kidneys are dilated along with having severe kidney pain that brought us here, we are concerned.” The doctor goes verbatim “I wouldn’t listen to any of the doctors on kidney disease except myself.” Wow, way to put other doctors/ co workers down! She then asks me what medications I am taking. As I am stating my medications I say and lastly zofran as needed and I didn’t take any today. She then in a rude manner says “zofran?! Zofran is for nausea” YES DOCTOR I KNOW THAT. I replied “yes I get nauseous with my crohn’s disease.” and she goes “oh.” LIKE WHAT??!?!??!?!?!?!?!?!?!?! UGH that got me so upset!

Anyways she admitted me to the hospital since no doctor was able to give me a straight answer. They told me I had a UTI but honestly I don’t believe that was the causing factor. The pain started to subside, in my gut I feel it was a bad FMF episode with the large cyst causing my bladder to be so full and a slight uti on the side. After a few days there I asked if I can please be discharged and since my culture was fine and I was out of the crucial pain. They discharged me! My nurses I had in the hospital were super sweet. It was really interesting to see how easier it was to receive pain meds when I am not a needy patient verse a crohns disease critical care patient and for that I will do a blog post soon, along with a blog post on how to ask for pain meds while admitted.

I will continue to share my hospitalizations and doctor appointment visits because it’s important for others to know it’s not just your location or yourself who struggle with getting the treatment and answers needed.

Thank you superheroes so much for caring about my admission and I am sending you all so much love, gentle hugs, strength and peace!!

Love,

Lala