u/funnybunnycat

After an hour of being at workI wasn’t feeling good (active flare) so I went home. I live a little less than five minutes from my job at a dental clinic so my boss (the dentist) offered to take me home since I don’t have a car. We spoke about my UC briefly on the drive. Doc is a holistic dentist who has been collecting the names of different holistic partitioners in the area so that they can get connected with them to make a holistic community. While we were in the parking lot Doc asks me if I was open to seeing a holistic doctor for my UC. Doc then proceeds to talk about how good it would be for the dental office if they got familiar with my voice and spoke about our practice and how I should start calling next week cuz it’d help expand the dental practice..It was so weird and uncomfortable ..

(F23) I was 20 when I was diagnosed and have been with the same doctor. I’ve had many moments of “I need to find a new doctor” but I don’t know what to look for , what questions to ask or things to pay attention to. It’s been easy for me to know I need to find a new doctor bc of the neglect. I feel very naive and am just not great at advocating for myself . What about your doctor stood out from the rest? What the moment you knew this doctor actually cared about you ?

(F23) I was diagnosed 3 years ago with severe ulcerative colitis. I started on mesalamine but it wasn’t working so I went on Stelara. In 2024 I ended in the ER and eventually went about 9 months without working cuz it had gotten bad. I lost a lot of blood, had iv treatment, mri and several colonoscopies . My doctor changed my medication from Stelara to Rinvoq in Nov/Dec 2025. I started the loading dose and was supposed to to start my maintenance dose in feb 2026. My doctor failed to send in a prior authorization and communicate that before they could send it I needed to go for a check up after my loading dose. They cancelled my appointment for March and was rescheduled for April. In April I lost my insurance before the authorization was processed. I’ve been without medication now since January. My symptoms have gotten bad since and I don’t know when I’ll get insurance again. I’m in school full time and work full time but my job doesn’t offer benefits. I have rent to pay and I’m paying for school so I need some income but I’m struggling to work a full 8-5 shift. I feel terrible about calling out since it’s a small privately owned dentist but thankfully they’re understanding.

I was diagnosed a few weeks after my 20th birthday in 2023. My procedure dismissal was fast - i remember the doctor saying stay away from fiber and that the prescription (mesalamine) would be sent to my local pharmacy. I took my meds consistently but I was still in so much pain and losing a lot of blood. My body was always in pain, I have shortness of breath/heart palpitations, lightheadedness etc etc you already know. Now during this time I didn’t know this is what a flare up was. I just knew I had this new diagnosis and I should take my meds. I tried to be mindful of food and do research but everything was so new. I tried continuing to live my normal life but would find it difficult to embrace spontaneity. My family all didn’t understand what I had nor did I.
I didn’t see my doctor until 6 months after my diagonals which was august. I explain everything and how I was scared to get in a car and all I did was stay home and go to work (7 minutes from home btw). My doctor immediately said ur case is severe and that the medication isn’t working . I got an mri and lots of blood work . By oct/nov I had my first Stelara injection. I still took the mesalamine tablets. In Jan 2024 I was due for my first injection but my doctor failed to send in a pre determination so I was a few weeks late for my meds. Not only was I late but I also received a 7k bill…throughout the year I still was flaring up. I ended up in the er after iron infusion and shortly had to quit my job. This is when I became very agoraphobic. By Jan 2025 the same thing from the year before happened- my doctor hadn’t sent a pre determination to the speciality pharmacy but this time it was worse. I called,email , left countless of voicemails trying to get the pre-d so I could take my meds. It took a nurse at cvs to call me and do a three way phone call with my doctor office to get the pre-d. She waited in the phone with me for 2 hr and kept checking up on me to make sure I had my meds. I hadn’t been on my meds for about 1-2 months.

During this time I was also in school. I remember one time I lost about 15-20 minutes during a timed test because I needed to use the restroom. After I decided to get an accommodations letter from my doctor for the following semester (May 2025) . It again took phone call after phone call email after email for me to finally decide I’m just going to have to wait until my next appointment to get the letter. They always said “yep we’re working on it” or made it seem like they had never heard of an accommodation letter for school so I had to walk them through it. Which I wanna say I don’t know if it’s that the ppl working at the front desk just don’t understand IBD and the severity of it but they genuinely made me feel terrible for even asking. Anyways , they said I need to pay for it before they could send it to me. After I paid via phone call I never got it (aug 2025). This is when I said I’ll wait until I see doc which was in nov/dec (after my 3?4th? colonoscopy). To which she said oh I thought we sent that already… and then said her assistant will send it. I didn’t get the letter until April 2026…

Now going back to nov/dec 2025 appointment, my doctor said there’s still active inflammation so we’re going to change the medication which I had known because during post op the doctor would did the procedure said I’d being on Rinvoq. So during my appointment I mentioned this, to which my doctor was surprised/confused because she wasn’t told that. She then said “ yeah I don’t know if I want you on that”. Mind you I was already getting calls from Rinvoq because the other doctor had already enrolled me in the Rinvoq assistant program. I kept the Rinvoq nurse update to date with the info I was given but she decided to put my account on hold since doctor hadn’t clarified if I’d be on Rinvoq.

I called my doctor again about it and she said “oh yeah yeah you should be taking it already”… right … wish I would’ve known that. So I started a loading dose. I got two bottles in Dec 2025. I remember going about a week or two with meds because of shipping but it worked out fine. When I started my second bottle in January 2026 I called the pharmacy to get started on the next Rinvoq prescription because I didn’t want the same thing to happen again where I don’t have my meds for weeks/months. In feb 0226 I should’ve been starting my maintenance dose but OFC they didn’t send the pre d. So the pharmacy keeps calling me to tell me I due (which I know) but the doctor wasn’t sending the pre D. So I called and called and called. The pharmacy called them faxed them called them. A lot of times I was talking to machines or told the doc wasn’t in. Finally in March the doctor office tells me the reason they haven’t filled it is because I haven’t been in since my loading dose WHICH NO ONE TOLD ME I HAD TO DO THAG. But whatever cuz my appointment was scheduled in about 4 days.

Day of appointment I call about 1-2 hour before because I hadn’t gotten any messages about it . The lady says”oh yeah sorry we had to cancel all the appointments because of building issues”…. Annoying but it happens so we rescheduled for April. About 3 days before my April appointment I get an email telling me I could come to get an emergency supply… mind you it’s already been about 2-3 months without meds and this is the first time they mentioned this. So I go to my appointment and the first doctor says to me is “why didn’t you just come in” .. IF I HAD KNKWN I WOULD HAVE KNOWN. It was honestly annoying to hear. These offices close at 5pm .. my only days off are weekends and Fridays.. I work 8-5 full time and am school full time. Whatever tho. I’m finally relieved because I’m about to get my medication again and hopefully feel some relief again. Plus I have an emergency supply to get me by for two weeks.

After my appointment I called pharmacy to see if they got the pre d which they said no. I called the doctor office and they said it’s gonna take a few days to process. I gave them a few days and emailed them to please keep me updated. Silence… in the meantime my mom loses her job ( I have insurance thru her). I immediately called the pharmacy to try to get a 3 month supply but they said I need to call my doctor to submit it to insurance that way. So I did that asap because we didn’t know if the insurance was still available. The pre d was still being processed. So I callled cvs again later to see if my insurance works but unfortunately they said ur insurance has been terminated. So now I’m here . I haven’t been on medication apart from the emergency supply in MONTHSSSSS . Thankfully Abbvie just approved my assistance application just need to wait a lil longer. But man. These last few days the flare up is getting bad again :( .. it’s nerve wracking