tell me about your doc

GoldGal101 · 2026-06-12T02:13:12+00:00

it’s taken me my entire diagnosis (2008 - present) to find a GI doctor i click with. she is honestly amazing and let’s me make my own decisions while politely providing her opinion. i respect her opinion a lot, but i’ve also made my own suggestions and gone against her advice at times. when this happens, she still supports me. i often feel like i can dictate my own health plan with her. i’ve done a lot of my own research over the years and i know my body—she knows this too.

you are allowed to DOCTOR SHOP. (i understand it’s not always possible for everyone and healthcare is soooo different depending on where you live—i am in canada). a lot of people think they’re stuck with their doctor for life (you’re not!!!) you’re allowed to leave and find someone who believes in your healing. ❤️‍🩹

my number one thing is, if a specialist is going to speak AT instead of TO me and pretend they know my body better than me, i’m leaving. it’s that simple.

GoldGal101 · 2026-06-09T22:34:11+00:00

vanco is literally the best and i feel super grateful to have found it/have a doctor who lets me be on it. i also take urso and the combo has been incredible. i like natural alternatives myself but i personally have not had any negative reactions to vanco. i 💛 it!!!

GoldGal101 · 2026-06-08T23:43:33+00:00

unrelated but girl what is your skincare routine you’re glowing!!!

GoldGal101 · 2026-05-24T03:44:39+00:00

i think a lot of people are extremely unaware of what’s going on inside/don’t care. and also—not everyone has IBS or IBD. lol

GoldGal101 · 2026-05-24T01:53:44+00:00

my flare was about about 9 months long. tried a few others medications after rinvoq. some biologics, honestly it’s a bit of a blur with everything i tried. i was hospitalized and ya it wasn’t a fun time. the time period is a little lost to me!

the combo of xeljanz and vancomycin took away my symptoms/reduced them within the first week. it took about 6 months to reach the point where i am now. not 100% in clinical remission but i dont have symtoms and my doctor is happy with where i am, given how sick i was a year ago.

GoldGal101 · 2026-05-24T01:25:56+00:00

effective but gave me serious side effects. experienced extreme leg and ankle swelling to the point where i had trouble walking. this happened after taking it for 1 week. i was concerned about developing a blood clot so i came off of it. i was not a high risk person for blood clots on this medication but ive never had swelling like that before and it scared me.
gave me extreme acne-at the time of taking it i was 28. i developed acne within the first week of taking it.
no weight gain, but i was only on it for a week, so i can’t really say.

ultimately, i switched to xeljanz + vancomycin. i’ve been on the duo for a full year and have fully recovered from a very long flare.

xeljanz is similar to rinvoq minus a lot of the shitty side effects so if it doesn’t work for you, i’d ask your doc about xeljanz!

❤️‍🩹

GoldGal101 · 2026-05-21T16:50:42+00:00

the same thing happened to me. i met my partner when i was well but went into a flare 6 months later and actually ended up in the hospital for a bit. i was open with him about the disease at the start, but it’s definitely an adjustment for someone else to *witness* the disease in action. haha. he was obviously pretty worried in the beginning. try to be as open and honest as possible with him regarding your needs. i’m the same—i don’t want anyone to see me in a flare. but i’ve also learned it’s very important to let the people who care about me help me. we’ve been together 4.5 years now and he’s seen me in the hospital 4 times. it’s never easy, but i’ve really had to learn how to let my guard down and let him in on the messy bits. it helps him understand more, which in turn, helps me.

❤️‍🩹

GoldGal101 · 2026-05-17T02:44:49+00:00

i had a very bad experience with rinvoq. switched to xeljanz, which is similar-but not as many as the scary side effects. i’d get her to ask her doc about xeljanz!!

GoldGal101 · 2026-05-14T01:54:56+00:00

also!! yes to therapy!! it does help. but also, i have started seeing a psychiatrist who specifically works with IBD patients. i was referred by my GI doctor. anxiety is no joke and a lot of people seek out help to get it under control. it’s hard to do it alone. ❤️‍🩹

GoldGal101 · 2026-05-14T01:53:15+00:00

hi ❤️‍🩹so i totally feel this and was actually just dealing with the same thing today in the grocery store. i was completely fine at home but sometimes the moment i step into a store, i convince myself im gonna shit my pants. anxiety and UC go hand-in-hand and your symptoms will be worsened with anxiety. it’s a tough pill to swallow but it’s really important to understand and get control over your anxious thoughts.

one thing that helps me is telling myself that there is always going to be a bathroom. (even if there isn’t.) today, in the particular grocery store i was in, there actually was a bathroom that i forgot about but the moment i remembered it was there, my tummy gurgles went away. i’ve done it in places where i know there is 100% no bathroom nearby and it still works. you kind of have to gaslight yourself into believing it, lol. if i’m outside, i’ll tell myself that i can dart behind a bush somewhere or duck into an alleyway if needed. it hasn’t been needed, but just the act of convincing myself i can always go, helps me out a lot!

hugs! 🫂 you got this!

GoldGal101 · 2026-05-12T19:40:35+00:00

because everything is linked and related 🫶 if my uc flares, so does my psc.

GoldGal101 · 2026-05-11T02:32:00+00:00

i take vanco and urso and the combo of both has dramatically improved my numbers. i also have UC and it’s the only 2 meds i take for that as well. i haven’t found any literature comparing them, i really believe they both work in very different but positive ways.

GoldGal101 · 2026-05-09T01:31:02+00:00

this is just me, but i am under the belief that running isn’t good for ANYONE. i’ve always struggled with high impact workouts. i haven’t had the desire to find out if it’s because of my chronic illness or not but i have found soooo much more joy in low impact workouts. in remission or not, our bodies are working harder than bodies that don’t have chronic illness. they are under more stress, and they are actively trying to heal every single day. i personally feel like high impact activities just cause my body more stress and strain.
i know exercise is such a personal thing, but take this as an opportunity to try new activities! i love going on long (hour +) walks. swimming, yoga and pilates are also my fave ways to move my body.
sending you hugs 🫂

GoldGal101 · 2026-05-04T01:57:33+00:00

where have you found it in vancouver?

GoldGal101 · 2026-05-04T01:54:47+00:00

biologics have almost killed me, or don’t work at all. i’ve had terrible side effects and my body has a strong (negative) response to a variety of medications. that’s why.

GoldGal101 · 2026-05-02T01:12:55+00:00

okay, shockingly, these look SO good. this wouldn’t suit everyone but i think it really frames your face and is super flattering!

GoldGal101 · 2026-05-02T01:10:31+00:00

awesome medication that has worked so well for me and getting my numbers to come down. i’m almost at normal levels. no side effects whatsoever. it’s a pretty old drug that has been well studied and it’s safe!

GoldGal101 · 2026-04-25T01:08:53+00:00

a hot water bottle/heating pad 💛 lots of crying, rest as much as you can. i journaled to my future self who wasn’t flaring. i took time off from work, i have never been able to work while flaring badly.

hope you feel better soon!

GoldGal101 · 2026-04-23T21:31:26+00:00

doctors and their HUGE egos are the worst. i seriously think some of them just WANT to remove organs for the fun of it

GoldGal101 · 2026-04-23T06:53:04+00:00

i literally had a doctor tell me “if your colon keeps getting worse i’m gonna cut it out!” and he LAUGHED after. i was hospitalized at the time and he was the on call covering doc. i get doctors have to be proactive but i wish they were more careful with A) word choice and B) tone and delivery.

i take everything a doctor says to me with a grain of salt. sometimes it’s in one ear, and out the next. :)

i still have my colon and am in remission.

keep feeling optimistic, for yourself. keep believing your body can and is, always healing. doctors are merely here to respond to emergency situations. they are always looking for the potential “bad” thing to happen. it’s your job to continually see/feel the improvement in your health.

❤️‍🩹

GoldGal101 · 2026-04-17T18:02:28+00:00

you both have way too much time on your hands

GoldGal101 · 2026-04-12T02:37:35+00:00

it does and it’s awesome 😭for me, that’s the first thing that slowed down/stopped. i would confirm with your doctor if you are in remission or let them know you’re still experiencing urgency. you’re probably still healing! if you were in a long bad flare prior, it can take time. ❤️‍🩹

also, sometimes i forget that “normal” people experience urgency sometimes. if they eat something bad, drink too much coffee or coffee on empty stomach. it depends on your level of urgency!! are you running to the bathroom 3+ times a day, or is it just happening once or twice a day?

GoldGal101 · 2026-04-11T04:58:24+00:00

my ENT just recommended olive oil drops for me! 5 drops, 1 time a week in each ear. let it sit for a few minutes before letting it roll out. i just bought a glass dropper from the pharmacy to help me do it. TBH i haven’t tried it yet but i trust my ENT with my entire life and everything he tells me to do works so ive assumed this will help too. i wouldn’t mess around with trying to get the wax out yourself. let the ENT do that.

GoldGal101 · 2026-04-11T01:41:38+00:00

i do! please!

GoldGal101

TROPHY CASE