#Entyvio

[colitisconfessions]

Short but kinda long update;

After being in remission with Remicade until 2020, I’ve been on Stelara (we thought was working but then immediately wasn’t), then switched to Humira biosimilar called Amgevita which never worked, but last scope in January of 2022 didn’t show enough inflammation to warrant a medication change. Tuesday I had a flexi-sig that showed significant inflammation so we are now in the process of starting Entyvio. I am really hoping and praying that this is it - I miss what life was like on Remicade, until I broke through. I don’t even know what I’ll do if life is like that again. I’ve just been flaring or on prednisone for the last three years.

I know everyone is so different, but if anyone has any advice, tips, tricks etc regarding Entyvio I would appreciate it - but please be gentle with me I’m not really in a place to accept failure stories right now.

[notaccurateornice]

My first four entyvio infusions are scheduled, here’s hoping they work because none of the conventional treatments for my UC have worked.

[jakalpaulo-blog]

Another round I hope I feel better after this on 😊👍 #newtreatment #entyvioinfusion #entyvio #letsgo (at Toronto, Ontario) https://www.instagram.com/p/CkfyIpPgpwc/?igshid=NGJjMDIxMWI=

[adelaidedrubman]

INSURANCE APPROVED STELARA EPIC WIN

[pelipper]

Alright, time to pregame for my infusion by taking some Prednisone and Benadryl. 🤙

[mey-rin-is-fabulous]

Okay as anyone who’s been around for any amount of time since 2021 knows I have colitis. And I’m gonna run through everything that happened before and after my diagnosis. Under a read more to save your dashes.

I first started having problems after easter 2014. Constant diarrhea and constipation and it was switching between the two constantly. It started off by me only having bowel movements every three days and I found my bathroom usage got worse after either eating high fiber foods or pizza. And as I kept going through highschool it got worse and worse, I had a hard time going to school and staying in class, my guts were constantly churning and accidents were not uncommon. All throughout this I had no idea what I was experiencing was a bowel disease, I just figured it’d clear up eventually. 

My mom and me thought it was a diet thing, so we tried adding more electrolytes, these blueberry smoothies and I tried to add yogurt. None of it helped. So now we’re coming up to late 2018 the end of my highschool career and start of my failed college career. I went to my doctor, he sent me to a specialist. I filled out a form, said specialist told me to just take metamucil, I thought that was the end of it. It wasn’t the metamucil did nothing.

2019 I was still experiencing problems. Went back to my doctor, said hey I think this specific type of food is setting this off. My doctor agrees that I should cut it out. I find out on my own somewhere along all of this about the gluten free diet and celiac disease. So I decide to go gluten free, it helps.

2020 since our family doctor retired me and my mom go see a satellite doctor, a small little cubicle in our local pharmacy with a nurse practitioner and the doctor on video call. I tell him about the problems I’ve been experiencing and he writes up a recommendation to send to a specialist.

Late 2021 I receive a call from said specialist, I have been scheduled for a colonoscopy early 2022. Colonoscopy gets pushed back a month from late January to early February. I go for my colonoscopy and after I am told that I have ulcerative colitis. I was prescribed an enema for like 2 weeks and mezavant(big pills we started at like 4 daily) which was constant. After that I had to get a TB test to make sure nothing would affect any current or future medications. Went back in March for a sigmoid( get yourself knocked out never do it while awake.) We scheduled another sigmoid for May, this time I would be knocked out for it, things were looking better. Also throughout this whole time, I was getting bloodwork off and on. Went into my doc’s office in September and my levels were looking good but around that time I accidentally had non GF spaghetti. After September things got rough for me again.

Now in early 2023, I had my first sigmoid of the year in April. My doc told me instead of ulcerative colitis it was looking more like chron’s colitis. I was told to stop taking my mezavant and was instead prescribed a steroidal medication as well as calcium tablets and vitamin d tabs. I was also prescribed another steroidal medication that required constant bloodwork. About a week or two on the new meds I was told to stop taking the new steroidal meds because my liver enzymes were up. Makes sense because I was extremely sick and after I stopped taking the medication I started feeling better. Saw my doc again end of June so now we’re in July and I’m getting a chest x-ray done this Friday and if everything’s good probably starting my new medication treatment after. the medication is delivered through IV but can be given through a needle injection after, it’s called entyvio.

[allmediconline23]

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[mypokemonranch]

It feels so good to be back home after surgery! ❤️‍🩹

I had a bowel resection and end ileostomy last week after dealing with an obstruction earlier this year. I started on biologics back in 2021, but unfortunately Humira wasn't enough to keep my Crohn's in remission because I started producing antibodies against it. Since my insurance took their sweet time approving Entyvio, I ended up with a bowel obstruction in March which almost resulted in an emergency surgery.

Thankfully, I was able to recover at home after narrowly avoiding emergency surgery. I was on TPN and a full liquid diet for a month and a half until my body was ready for surgery. I was told that I had to have a temporary ileostomy, but to me that was a small price to pay if it meant I could achieve remission for the first time in years.

Surgery went well, and although my in-patient stay was bumpy at times due to some nausea and vomiting, I'm feeling a lot better than I felt before surgery. My pain is controlled pretty well right now, and I have a follow-up appointment with my surgeon and my regular gastroenterologist in a few weeks. I should be having my ileostomy reversal surgery by the end of summer!

I'm hoping that by the end of this ordeal I'll be able to have a good few years of remission from Crohn's Disease. This disease sucks so much and has taken so much out of me. But no matter what life throws at me, I'm not going to give up without a fight. 💪✨

[chronically-crying]

One time before I even got sick I said (mostly joking) to my mom and sister that the American healthcare system has a personal vendetta against me (I have now been cucked by blue cross blue shield, COBRA, PrefferedOne, and for both lifesaving and not strictly necessary medical things) and my sister's response was "IDK the American healthcare system hasn't been particularly kind to me either" (she had a broken leg that needed surgery but she had to come home and wait several days before she actually went back and got the metal screws in her leg that she needed for the bones to heal properly)

but joke's on her because no I have been 1) in preauthorization hell for HRT for 3 full months (my gender care doc had never seen it takes that long) 2) I had a full psych eval scheduled bc I suspect I have ADHD and a psychiatrist I saw was like "yeah you should probably get the whole deal" and it was cancelled the day before, 3) I got diagnosed with IBD, given 2 months worth of Prednisone and told "you'll see someone in 6 weeks" only for the appointment to cancel the day of bc I was 17 and they weren't licensed for peds, 4) I've been on 3 different biologics now for IBD, Remicade which barely worked, Entyvio which did not work, and now Stelara which is great. IF ONLY MY INSURANCE LET ME HAVE IT because reauthorization came around in March and it got denied and ever since I have been living on the edge of a Crohn's flare

BONUS: this isn't insurance related but I got a fancy rare skin condition called pyoderma gangrenosum (DONT GOOGLE THIS ITS HORROR MOVIE SHIT) which is heavily related to Crohn's but because of how it presents it doesn't totally seem like an autoimmune condition and I was treated for the wrong thing from mid-May to the end of July before someone went "have you seen a dermatologist yet? Bc this is definitely not an infection" and I basically suffered for 7 weeks for no reason

[appalachianoracle]

I don’t know how to tell people I’m not okay because in my head it’s entirely my own responsibility to take care of my mental health. Others have their own issues. And I don’t want others to have to use their personal time and energy trying to make me feel better. I know that’s what friends and support systems are for. But I feel so bad burdening others.

I need my insurance to stop being a dick. I need them to give me my entyvio so I can get out of this flare and get off this high dose of prednisone that is slowly driving me to madness and not in a hyperbolic way. As in I have had to make a pact to not unalive myself for the sake of those around me despite the fact that existence is very spicy and I’m very tired of it all.

I’m tired of being in pain. I’m tired of being an emotional mess because all these things are outside of my control. There is no solution or end in sight. Some days it’s easier to exist, but its never just easy.

But I guess maybe life isn’t easy for anyone. We all have something we’d rather not experience but can’t control. I wish I knew what the difference is between someone who can handle it and someone who can’t besides the outcome.

The universe is a mystery to me in that aspect. I’m still here. I don’t know how. I know I’ll be okay and that ultimately none of my worries matter in the grand scheme of things because I know how the story ends no matter what choice I make. At least I’m comfortable enough with death and mortality to be chill with that.

These are just void thoughts. Thoughts I need to get off my chest that *someone* might see and understand silently. Cause there’s something comforting about the idea that even one little stranger might see the thoughts and be like “Ah yes same.” While also not having to state aloud.

Cause I could just write these on paper and burn them. But that doesn’t bring the same sense of peace that voiding thoughts on an obscure platform that most people don’t know me on.

[pernlover]

Infusion day. Thank goodness for Entyvio which keeps me sorta functional.

[xxtwinflamesxx]

Entyvio round two. Trying dual therapy with rinvoq.

[aimmyarrowshigh]

My character, Rachel Shepard (male or female Shepard is the player character from the video game series Mass Effect) has no canonical religion or ethnicity. Everyone gives their own Shepard a backstory. I made my girl Jewish, obviously. If I can summon the energy (I just started Entyvio and it’s exhausting me) can I participate in Chanukah Bingo or is it canon-only?

Thank you! I’m so sick of these stupid Christmas exchanges that I wrote a Yom Kippur oneshot out of spite.

Jewish Shepard is more than welcome! Thank you for asking, that's a good question -- headcanons totally count. :)

[sakuramom]

Cue the joint pain thank you entyvio very cool

[pelipper]

It's Entyvio infusion day! 💪🔥

[knight-aflame]

husband is likely transitioning to a more serious medication for his colitis — either entyvio or stelara. blah