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newhologram · 1 year

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New's March 2023 hospitalization update (2 years after March 2021 hospitalization)

I'll try not to meander too much in this health update, but there is a lot to unpack, and some backstory to lay out first. (tldr will be at the end)

Recap: I have a lot of conditions but this is mostly about my ulcerative colitis (diagnosed 2011) and endometriosis (suspected/undiagnosed). Every 2-4 years I get a colonoscopy to check the disease progression because colon cancer also runs in my family. My colitis has always been considered "mild" and my colonoscopies generally don't look that bad despite me not taking colitis medication the past 12 years since dx. But I'm still having debilitating GI symptoms, especially in the past 2 years since I was hospitalized in 2021 for the worst flare-up of my life. While recovering, suddenly in June 2021, what I thought was a "spinal flare-up" increased my level of disability so much so that I can't really sit up for long now.

In 2022, while trying to get to the bottom of my "back pain" with another spinal MRI, I noticed that my left ovary was very obviously enlarged but that no one had marked it on the report.

In 2022 I had 129 appts which included many ultrasounds/CTs/MRIs and we learned many things: my ovary is in fact enlarged and likely full of blood, the lymph nodes around my colon are enlarged, and there's wall-thickening (lesion) on my colon. Even before the lesion was discovered my PCP was already pushing me to oncology because of my ovary, so I now do bloodwork every 3-4 months to check my blood for signs of cancer. This is important and I get why they're checking it, because my symptoms are also suspicious for lymphoma or leukemia, but I really don't think that's what's going on at all. Still, here I am with a cancer doctor who doesn't wear a mask at his appts when he has CHEMO PATIENTS IN THE OFFICE. Wtf.

While spending 2022 trying to access an endometriosis specialist, I've become more and more disabled. I'm at the point where I constantly have intense pelvic/back pain even when not on my period. I've had to go to the ER over it multiple times. I was only able to access a gynecological oncologist who "treats" endometriosis via full hysterectomy and ablation. She wanted to "burn" the endo lesions (not remove them, which would allow them to grow back in 4-6 mos), and completely remove my uterus and ovaries. I pointed out to her that neither of these things treat endo and her dumbass tried to argue the outdated reason why.

There are only a few hundred endo excision surgeons in the world who would be able to handle the kind of surgery I need, which will likely involve multiple of my organ systems if the endo has spread as much as suspected.

Moving forward, I knew I needed to get the lesion in my colon biopsied, so I also fought for a GI last year. Since then I've gone through 4 different GI docs because they're impossible to make appointments with. I even had a consult with one for my scope, but my insurance wasn't with his surgery center, so I couldn't do it.

RECAP OVER, PRESENTLY: My body has been going through it and I still needed that scope badly, so my PCP urged me to go to the ER and try to get admitted for scope again like I did back in 2021. This is what happens when insurance makes it impossible for us to access care: we have to force it at the ER.

I finally had the mental strength to do it, so I packed my bags and went on a Thursday morning.

I got to my usual hospital around 10:45am. To my surprise, they got me in really fast and the doctor I spoke to agreed that I needed to be admitted and scoped immediately. I didn't even have to fight for it for 12+ hrs withering away in an ER bed like last time. She saw my records, heard my story, and believed me. They did labwork and got me in quick for a CT scan which confirmed my ovary is still enlarged, but also that my kidneys are a little backed up (have known this) and my bladder wall is thickened. These all further point to endometriosis. At this stage, it's likely invading my ureters, bladder, and bowel, which is why I'd need such a specific kind of surgery to handle it.

Our first concern was a colonoscopy to biopsy the lesion first and rule out cancer, and possibly confirm endo since that would be obvious under the microscope. I knew it was going to be a rough time, with the liquid diet/prep/enema/etc, but I thought at least I'd be comfortable there with my own room to rest in like last time. I had packed everything I needed to stay sane. I thought maybe I'd be in the hospital 1-2 days max, since we knew exactly what needed to be done.

But it turns out my insurance is no longer contracted with my hospital, so they had to transfer me into the city, a 40 minute ambulance ride away. I waited 5 hours in the ER bed with no fluids, meds, or pain relief while they tried to get my transport ready. I really hated being strapped into the gurney, very uncomfortable. The paramedics were nice enough and helped to keep me distracted during the ride.

I was put in a room with 2 other patients, elderly women who shouted and aggressively prayed to Jesus while both their TV's blasted from 7pm to 5pm the next day. I didn't sleep because of the noise, but also becasue my first nurse sucked ass. She was so awkward and not understanding what I needed, and would only give me ketorolac for the pain and no morphine (bitch, why would I be hospitalized for you to give me the SAME MEDS I HAVE AT HOME THAT I JUST TOLD YOU BARELY HELP?)

In the morning, I had a much better day nurse who gave me morphine, fluids, and colitis meds (steroids, anti-inflammatory stuff). And both noisy patients got discharged by evening so I had a good solid couple of hours all by myself in the room. One of my new roomies ended up being pretty loud/oversimulating but still much better. I know we were all going through a lot and in pain but the shouting really freaks me out :(

I was also allowed to have a liquid diet at some point before that. I had gone a full 24hrs with no food or water because the whole point of this was to get scoped, but when I brought that up everyone acted confused and said it wasn't on my file or anything. I had been waiting for a GI consult the whole time, for a scope. Finally he came in and wouldn't listen to me, kept saying that my efforts at diet/supplements don't matter with colitis and that I just needed to be on meds/other immune suppressants. I had to interrupt him several times to get him to stfu and listen to what I was saying, that this is likely ENDO, not just colitis, but that I need this scope and biopsy done to rule out other things urgently. So he finally was like "ohhh, endometriosis would make a lot of sense" and agreed to scope me in the morning (Saturday).

So it became night 2 and I was started on the bowel prep. I didn't sleep, but thankfully had another good night nurse who kept my spirits up. Wouldn't be able to sleep much anyway since they were waking me every few hours for vitals, and at 4-5am to take more blood. My blood pressure and potassium kept both being low, which is a new thing for me.

Nurse came to bring my enema before sunrise and by 7:30 I was first in line in the scope surgery room. Weirdly probably the easiest colonoscopy I've ever had, I usually have a really rough time with the recovery. But I noticed when I woke up (and stopped rambling lol) that they had not only bundled me with blankets but put a tube of hot air under them with me. Because I had told them that I usually shiver really hard after being put under. I'm sure that helped me not feel like death after, I was so toasty. I also wasn't anxious beforehand. Usually the little pulse monitor is beeping so fast because I get so nervous, but honestly I think I was just super numbed out by that point.

Once I was coherent, the GI brought me a nice color print of my colon pics. And wouldn't you know it, my colon actually looks good, inflammation-wise. Still really minimal, a few visible ulcers here and there, but not terrible. Which means that every time a GI tells me "diet and supplements don't matter, you just need to be on meds/immune suppressants", they're full of shit. Clearly all of my hard work with smoothies, bone marrow, etc, works. If it didn't work, wouldn't my colitis be terrible after 12 years living with it, with almost no meds?

He saw no lesion (but still took plenty of biopsies), which means that the lesion is on the outside of my colon (hi, endo). He did show me another important piece of evidence: part of my colon is very visibly twisted, which makes so much sense. The pain, pressure, weeks-long constipation episodes, my decreasing ability to tolerate solids. The endo is likely scarring/gluing it into that position. More reason I need excision surgery, because they know how to restore the anatomy of the pelvic organs.

After the scope, I was feeling hopeful about getting home by that afternoon. But they wanted to do a CT scan to check my uterus again (even though I'd just had the same scan a few days ago). And because the radiology dpt was so backed up, I ended up being kept a whole extra day. Just because they wanted to know my results, which were "unremarkable" even though the one from a few days earlier noted all the other stuff I mentioned. I was pretty upset but just tried my best to stay distracted when I wasn't able to rest. Had a lot of sweats though, suddenly. Night nurse wouldn't give me my midnight morphine because of my low blood pressure, so I was pretty uncomfortable. Nurse also informed me that I have grade 2 hemorrhoids, which the GI failed to mention. KINDA IMPORTANT, DUDE. But makes sense, colon stuff, blah blah. Not really my main problem right now, though.

Finally got discharged in the late morning/early afternoon. Hardly remember the past day being home except for the epic 3 hour long bath routine I did lol.

The morning after, I went to pick up the colitis meds they'd been giving me only to find it's $174, so I didn't even get them. I make less than that in a day, and I'm barely working 3-5 days a month at this point. Sometimes a period of 3-6 weeks will go by where I can't/don't work. Also since the source of this pain is not the colitis, but the endo, why the hell am I gonna spend so much on medicine when I already see good results from bone marrow and everything else I do? I bet you if I didn't have endo, my colitis WOULD be as "mild" as every doctor says it is.

I'm glad I finally got all of that out of the way… but the truth of the matter is that I'm nowhere closer to getting the surgery I need I may now have a little more evidence pointing to endo, but none of that matters when I can't access the experts. The best endo surgeon in Los Angeles doesn't take insurance and just a consult with her is $1500+.

My only barriers are the American healthcare system and money. These two 100% fake made-up things are keeping me from living a better and longer life, and I'm expected to be positive through this all because "it could be worse" or whatever.

There is so much that makes me happy, that I'm so grateful for, that really makes it worthwhile for me to stay alive to experience. I'm genuinely still able to have fun, day to day. I make my own little bit of fun out of whatever I can. But I'm in so much pain. I've been disabled my entire adult life. I've never known anything else. I've been frozen here the entire time, just trying to make meaning and find happiness hidden underneath it all.

So what's next? There's nothing more to do, no other way to fight when it's just about money. The only thing in I can do right now is try as much as possible to eat stuff that won't clog my silly twisted part of the colon and cause more pain. I've already lost weight from this ordeal, but the bone marrow might help me get my calories in at least. I'm hopeful the testosterone therapy will reduce some of the endo inflammation, but the damage is done. Scarring like that requires surgery to fix. No amount of good diet, acupuncture, positive thinking can unglue my organs from each other.

I know this all could've been so much worse, but it was hard for me and making comparisons is useless. Thanks to everyone who messaged me, sent memes, etc. Kept me from losing my mind at the hospital. Now my pain level is back up and the medical PTSD is slapping, so I'm going to do my best to stay hunkered down this week.

TLDR;

Colitis patient, 12 years. Colonoscopy was a year past due, unidentified lesion in colon, family history of colon cancer. Suspected endometriosis. PCP told me to go to ER because it can't wait, worsening condition, weakness, pain.

ER did a CT: ovary cyst still there, and kidneys backing up/thickened bladder wall (more endo points). Got admitted but to a different hospital kind of far from home. Mostly a shit-show, very overstimulating and didn't get taken care of that great at first.

Got colonoscopy, colon is looking alright. Still "mild" colitis, which means my supplements/diet works and my GI docs are full of shit about meds being the only way (but you knew that.)

But: part of my colon is visibly twisted, possibly explaining a lot of my pain. This would be due to endo and the only treatment is surgery, which I can't access. Pointless to pay $174 for colitis meds when this pain is not my colitis, but endo messing with my colon/other pelvic organs.

Since I can't afford such an expensive surgery, there is nothing else for me to do in this fight.

Unless I get a windfall, all I can do is eat gentle and keep surviving this pain.

#endometriosis #ulcerative colitis #american healthcare system #spoonie #chronic illness #teku #personal

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