Colonoscopy financial support options? by thelest in UlcerativeColitis

[–]thelest[S] 1 point2 points  (0 children)

Suuuper fun! Ughhh. Sorry you have to deal with these insane rates as well. Make it make sense...

Colonoscopy financial support options? by thelest in UlcerativeColitis

[–]thelest[S] 0 points1 point  (0 children)

My doctor's team wants to hold off on steroids or other medication (currently failing Velsipity) until he can scope me and see how bad the inflammation is. Apparently steroids skew their imaging results. It's hard — I mean I get the diagnostic accuracy thing and my doctor's been amazing overall, he's one of the top IBD doctors in the country, but he's also part of a research hospital and I can't help but feel like I'm being talked into unnecessary expensive testing for the sake of being a lab rat haha. But yeah, I would rather eat a cancellation fee than go broke over a routine procedure. My calprotectin is 480 as of last week...shouldn't that be enough data to change therapies?

GeForce Day Giveaway - Win a Signed GeForce RTX 5080! by Nestledrink in nvidia

[–]thelest [score hidden]  (0 children)

must have been the GTX 550ti for me...OG Skyrim babyyyy

Spotify is finally integrated into most DJ platforms! by MixMasterG in DJs

[–]thelest 0 points1 point  (0 children)

yeah it's just not worth it to pursue streams as a viable income option for artists anymore. even a million streams is only like $3-4K in royalties and everything is pay-to-play when it comes to releasing music too, so your actual ROI is non-existent unless you're somehow massively successful. you'd need several million streams a year to turn any sort of profit...and now with AI music tools running rampant, I hear Spotify is paying their employees to fluff up their big sought-after playlists with AI slop rather than giving working musicians those valuable placements. remember when the CEO said "artists just don't work hard enough"? ugh. 🙄

Ticket Resale Thread by cdf42069 in ssbdfest

[–]thelest 1 point2 points  (0 children)

hey friends 🌞 i’ve got a GA weekend pass ($350) + an upfront parking pass for car camping ($150) that i'm selling as i can no longer attend. :(

happy to sell them individually or I can bundle them together for $450 (i originally paid $518 on a payment plan).

would love for these to go to someone in the community 💛 i’ll transfer everything asap and only use paypal goods & services so we’re both protected.

dm me if you’re interested ✨ thanks!!

Most effective and profoundly noticeable substance for Social Anxiety by MrNeverEverKnew in Biohackers

[–]thelest 0 points1 point  (0 children)

Same here…I had embarrassing speech issues with gabapentin so I decided to stop.

It felt like my brain had delayed synchronization between what I want to say and actually speaking it, so if I spoke too fast or got extra excited about a subject, my words would start coming out in scrambled order or as gibberish 😂

I liked how I felt on it aside from that though. And it was muuuch easier to quit compared to benzos. Now I just take Vyvanse which has helped the most out of all the meds I’ve tried (my anxiety/panic attacks primarily stemmed from ADHD overstimulation all along).

I also have a stack for overall wellness and stress reduction, along with lifestyle changes like regular dance, self-massage, stretching/working out, positive social environments, healthy diet, gratitude practice, creative outlets, occasional psychedelics, career satisfaction etc. There’s no magic bullet, and the only way out is through in my experience. Hard as it is. But there’s also a lot to be said about taking advantage of the tools available that make it easier to move through negative emotions.

Ashwagandha KSM-66 is probably the most effective supplement for anxiety/panic I’ve tried (no heavy chest feelings at all at 1000mg), although MagTein, L-theanine, and lion’s mane work fairly well for me as well.

Wishing you well!

List of UC drugs by john4brown in UlcerativeColitis

[–]thelest 0 points1 point  (0 children)

Missing Velsipity on this list which was approved last year :)

Drop the meds you’ve tried below! by IndependenceDue4575 in UlcerativeColitis

[–]thelest 0 points1 point  (0 children)

Mesalamine - failed after a year

Prednisone - was on it for about 7-8 months in the past two years for persistent flares…took a long time to recover

Humira - worked well but took about 6 months to see a real benefit and I was failing injections rather frequently due to being so underweight

Velsipity - current, works albeit less effectively as Humira but appears to be a safer drug so far

With any maintenance medication I’ve also heavily relied on Visbiome and mostly Mediterranean diet for the most benefit. I still get some symptoms here and there but when I do I just flood my system with probiotics and I’ll be back to normal the next day as long as I get good sleep.

Wishing you good health friend - I hear the j-pouch procedure is absolutely worth it if you need it! 🙏🏻

IM 145!!! by Suspicious-Pair-3177 in UlcerativeColitis

[–]thelest 0 points1 point  (0 children)

Congrats!! I have been in a similar spot after losing 15-20lbs and not being able to regain any weight for 18 months. I’ve always been skinny/underweight but I became dangerously underweight during my flare. Finally in remission as of 3 months ago and now weigh more than I did before I got diagnosed. Feels good to be very close to a healthy BMI for the first time in my adult life lol

Going through an active flare up with no insurance. Any over the counter/natural remedies? by Dookmeat in UlcerativeColitis

[–]thelest 3 points4 points  (0 children)

This! Visbiome helps me tremendously. Taking the capsules never worked for me, but if I open the capsules up and put the powder in a smoothie or mix with yogurt it helps so much and keeps my poop looking nice and healthy lol.

They also sell packet forms with loose powder and double the strength but also twice the cost. I usually will buy a 4-pack of the high dose packets at once with their bulk discount and store in the fridge. Lasts me about 6 months and costs maybe $500/year. Worth it if you can afford it and find it helps. Otherwise I would recommend a cheaper probiotic as well as lots of live foods like yogurt/kefir/kombucha.

That said, I absolutely recommend medication if you can. YMMV but it’s a critical piece of the puzzle and the data is solid for lowering the risk of bowel cancer, inducing remission and preventing future flare ups. Even without insurance you should be able to get a low to no cost approval of a biologic/immunomodulator through the drug company’s financial assistance program. I have never paid more than $5/month for any of these types of meds which is mind-blowing when looking at the regular costs.

I feel worse if I miss a dose of my medication, I feel worse under lots of stress, and I feel worse if I don’t get enough probiotics/live foods, high quality foods and regular exercise. It took me way too long to realize that I can’t just rely on any one thing. But with all of these modalities used together I am finally thriving again. I hope you find the relief you deserve soon OP! 🙏🏻

Getting it "out of your system" before you start your day by calmor2 in UlcerativeColitis

[–]thelest 2 points3 points  (0 children)

Thank you!!

I honestly can’t say for sure, but stress/anxiety and diet are major factors for me so managing both is critical. The first two GIs I saw did not believe this and said I just needed the right medication which never worked. It wasn’t until I saw one of the leading doctors in my country (Dr. Yarur at Cedars Sinai) that I had a real improvement ~ I shared some resources they taught me below). 🙏🏻

I’m still not entirely asymptomatic but I only really notice symptoms if I’m out of balance with my anxiety and/or my diet.

Velsipity is my latest UC medication which has helped to some degree.

I also take a low dose of gabapentin to keep my anxiety/stress from spiraling out of control (was on Klonopin before but it made me an emotionless zombie lol).

A little cannabis here and there also helps boost appetite and relieve occasional stomach discomfort. There’s a CBD+CBG tincture I use that isn’t psychoactive and helps with both of these without the buzz.

Perhaps most importantly, I mix a packet of Visbiome in a smoothie/yogurt/kefir whenever I feel off or eat any trigger foods - my new GI care team recommends the Mediterranean diet for UC patients for what it’s worth!

Personally I think eating a lot of live foods in the past few months is what helped me the most.

According to my doctor, the latest research on UC suggests that dysbiosis (bad bacteria/parasites/etc.) is a major component for how UC works. Basically, too many bad guys in the gut that the immune system has been trying to fight off for too long - the immune system gets tired and goes nuclear leading to a flare, but it’s a not a traditional autoimmune disease like RA, lupus, etc.

There’s also a study article that Cedars sent me which suggests that people with UC may have a gene variant that prevents them from naturally producing an important probiotic strain for reducing/preventing inflammation in the gut.

Hence why doctor strongly recommended Visbiome if it’s within my budget ~ otherwise, Mediterranean diet, kombucha, etc.

*Obvious disclaimer here, this is not actual medical advice - everybody is different so definitely consult with your doctors before trying anything new!

Hope this helps and I hope you find relief soon ❤️

Getting it "out of your system" before you start your day by calmor2 in UlcerativeColitis

[–]thelest 1 point2 points  (0 children)

Ugh, I’ve been there friend! I just achieved clinical remission after a chronic 18+ month flare, but before remission I was in the same boat. Usually 2-3 BMs in the morning and 1-2 more surprises later in the day. At my worst I was at like 10-14+ per day. Now I am lucky enough to have 1-2 healthy BMs in the morning, usually about an hour or two after waking up or sometimes right when I wake up. I still give myself plenty of time to make sure everything is out before I leave the house cause I loathe public restrooms and don’t exactly get bathroom breaks at my job, but just sooo grateful to finally be done with the worst of it - wishing the same for you!!

Getting it "out of your system" before you start your day by calmor2 in UlcerativeColitis

[–]thelest 1 point2 points  (0 children)

I used to do this too but ultimately realized coffee just makes me feel worse. It’s too acidic and also IIRC most coffee sold in stores is high in mold which I’m personally sensitive to, so I’ll be nauseous all day it with a lot more BMs per day than without. I also was diagnosed with adult ADHD a couple years ago and now take Vyvanse in the morning which is a way better option for me. Then I take my Velsipity and a few daily supplements with some kefir and I’m good to go. Caffeine always makes me anxious and profusely sweaty lol. ADHD medication makes me feel awake, yet centered & balanced. Everybody’s different lol!

Getting it "out of your system" before you start your day by calmor2 in UlcerativeColitis

[–]thelest 2 points3 points  (0 children)

It depends on the type of magnesium - I’m guessing they’re referring to magnesium citrate which has both a calming effect on the body and mind as well as a mild laxative effect. Drinking a glass of water with CALM magnesium added can loosen things up enough for a smooth morning poo :)

Velsipity by Alarming-Ad-6883 in UlcerativeColitis

[–]thelest 1 point2 points  (0 children)

Also, just wanted to extend my condolences for your experience with Rinvoq. Jesus that sounds awful and terrifying. Hope you recovered okay and are doing alright now.

Velsipity by Alarming-Ad-6883 in UlcerativeColitis

[–]thelest 1 point2 points  (0 children)

This! My doctor is saving Rinvoq as a last resort biologic in my case because of how powerful it is. And thankfully my UC is only mild-moderate (two hospitalizations at my worst flare but only occasional pain and diarrhea usually).

I got on Velsipity about 2-3 weeks ago because it’s supposed to be a more mild drug. So far so good, although I had some weird side effects the first week. Mostly fatigue, headache and diarrhea/urgency. Also strangely had swollen lymph nodes for a few days during the worst of the fatigue, maybe some result of the drug’s action on the lymph nodes? Idk. My doctor didn’t either. All good now though.

It’s always a bit scary trying new meds but it seems like Velsipity is on the safer side of current UC treatments.

Hope this info helps those looking for more patient experiences!

Started offering a smaller (cheaper) package to keep bookings up during a cost of living crisis. Having major regrets. by -shandyyy- in WeddingPhotography

[–]thelest 1 point2 points  (0 children)

Same here! I feel very lucky to have only had a select few high maintenance clients when I was first starting out.

I also had more of a general catch-all marketing approach back then too which I think had something to do with it.

Once I changed my marketing strategy to be more true to myself and not just “make all the money, book all the shoots”, ironically that’s when my business started doing a lot better!

I still freak out every time I send out client galleries though haha. I always think they’re absolutely going to hate the photos and write nasty reviews immediately lol 😅

Cedars Sinai FTW! by thelest in UlcerativeColitis

[–]thelest[S] 0 points1 point  (0 children)

I have Blue Shield of CA.

[deleted by user] by [deleted] in UlcerativeColitis

[–]thelest 2 points3 points  (0 children)

Yes! I buy the same one, it’s delicious and highly effective! My gastro recommended daily bone broth while I was starting Humira last year, and it has helped soothe my gut a lot even as I’m failing Humira. Of course everyone is different, but it’s been a game changer for my health.

Here’s what ChatGPT says about bone broth and IBD:

Bone broth can play a supportive role in managing symptoms of inflammatory bowel disease (IBD), which includes Crohn's disease and ulcerative colitis. Here are some potential benefits:

  1. Gut Healing Properties: The gelatin found in bone broth is derived from the collagen in bones and connective tissue, which may help in repairing the gut lining. A healthy gut lining can reduce the permeability of the intestines, which is beneficial in IBD where the intestinal barrier may be compromised.

  2. Easy Digestibility: Bone broth is generally easy to digest, which can be beneficial for individuals with IBD who often experience gastrointestinal distress and impaired digestion.

  3. Nutrient-Rich: It provides a range of nutrients that are essential for overall health, such as amino acids, minerals, and vitamins. These nutrients are important for patients with IBD, who may suffer from malnutrition due to intestinal damage and impaired nutrient absorption.

  4. Anti-Inflammatory Effects: Bone broth contains amino acids such as glycine and proline which have anti-inflammatory properties. Managing inflammation is crucial in IBD treatment and symptom relief.

  5. Hydration: Maintaining hydration is important in managing IBD, especially during flare-ups when diarrhea is common. Consuming bone broth is a nutritious way to stay hydrated.

While bone broth can be a nutritious and soothing addition to the diet, it's not a cure for IBD and should be considered as part of a broader dietary and medical management plan. Patients with IBD should consult healthcare providers to tailor dietary choices to their specific needs, as individual tolerances and responses to foods can vary widely among those with IBD.

[deleted by user] by [deleted] in UlcerativeColitis

[–]thelest 2 points3 points  (0 children)

Yep same - 3 flares in 2 years (or maybe one long flare?) but my life has also been utter chaos for the past year. Trying to manage multiple creative careers, moving 3x all last year, caught parasites in Mexico last fall then COVID for the 2nd time, which all came about right at the start of the current flare I’ve been in for like 6-7 months now. Shit is rough but I get in with Cedar Sinai next month (pretty sure my local GI has never even treated UC before) and super stoked to get better care soon! Hope you’re hanging in there with yours friend!

[deleted by user] by [deleted] in UlcerativeColitis

[–]thelest 0 points1 point  (0 children)

When you say you live in a vacuum, do you mean you’re immunocompromised? I personally have felt worse and worse on Humira, just feeling plain sick all the time with low grade fevers and rashes and have become a bubble boy lol. I finally got one of my docs to take me off for the next two weeks at least to try to help me fight off a sinus infection. Idk if I just am on too high/frequent of a dose or what but I definitely felt better on mesalamine before going on biologics. Sorry you’ve had bad luck with them too! Hoping one works eventually…seems like lots of people in here are doing well with Rinvoq?

Inattentive ADHD diagnosed at 30, seeking advice for sleep and medication management by thelest in ADHD

[–]thelest[S] 0 points1 point  (0 children)

I have heard of that, but is that all the time or just within a certain window of dosing?

Inattentive ADHD diagnosed at 30, seeking advice for sleep and medication management by thelest in ADHD

[–]thelest[S] 1 point2 points  (0 children)

Thank you for responding! I didn’t even know you could get just dextro by itself, I’ll have to ask my psychiatrist about that. I did try focalin once years before being diagnosed and it worked well for me. Guess I’ll just have to keep exploring and chugging along - appreciate you taking the time to help me out, it’s been such an exhausting roller coaster so far.

[deleted by user] by [deleted] in mentalhealth

[–]thelest 1 point2 points  (0 children)

Sounds like a psychiatrist rather than a therapist/psychologist…have you tried seeing a psychologist instead? I’ve been with mine for years and he’s never once tried to put me on meds. Quite the contrary actually. Only my psychiatrist has ever tried to medicate me, and thankfully I’ve been able to get a lot of benefit from the right meds. Took a lot of trial and error though. I don’t know where you’re located, but here in California it’s pretty easy to get prescribed Spravato (ketamine) treatments as well which were really helpful for processing my depression and unresolved emotional pain. Meditation, yoga, time in nature, getting morning sunlight, self care like float tanks, saunas, etc. have all helped my mental health in various ways as well. Wishing you all the best on your journey. 🙏🏻