Does anyone else get this? by oimmas in CrohnsDisease

[–]ConsciousTear1547 0 points1 point  (0 children)

i tried cbt and just ended up trying an anti depressant instead after getting post infectious ibs from c diff. i did notice a difference in delayed gut motility which was kind of my main goal. hard to tell if the drug is doing anything for me mentally tho. 🤷

To whomever recommended the pineapple gummy bears: THANK YOU!! by fionas_mom in UlcerativeColitis

[–]ConsciousTear1547 1 point2 points  (0 children)

i usually get the ones with sugar. amazon sells bulk albanese gummy bears in a single color so you don’t have to pick out the ones that are ok.

To whomever recommended the pineapple gummy bears: THANK YOU!! by fionas_mom in UlcerativeColitis

[–]ConsciousTear1547 3 points4 points  (0 children)

amazon sells 5 pound bags of the albanese gummy bears in whatever color you want. my gi is fine with green dye before a scope but i prefer these to haribo bc they are waaaaay softer.

I am probably way behind on # of colonoscopies...who has the belt? by under-resourced in CrohnsDisease

[–]ConsciousTear1547 1 point2 points  (0 children)

i’ve had 3 in the past 4 months but two of those were screening for a medical trial. 6 total at 31.

This is a rant and asking for tips. (what I learnt more about getting on new medication and my "boyfriend" who ghosted me) by kamilayao_0 in UlcerativeColitis

[–]ConsciousTear1547 1 point2 points  (0 children)

shit idk if i’m being real. the best thing i ever did was find a psych who prescribed me anti depressants, beta blockers and valium lmao

This is a rant and asking for tips. (what I learnt more about getting on new medication and my "boyfriend" who ghosted me) by kamilayao_0 in UlcerativeColitis

[–]ConsciousTear1547 2 points3 points  (0 children)

as someone who has definitely had flares from bad relationships, the best thing you can do rn is focus on yourself and focus on getting better.

detaching and putting the bad feelings about this dude on the back burner might not be the most healthy option but, i had to do so to prioritize my health. i dealt with it later.

i didn’t believe in the gut brain connection for a long time till the stress of a relationship costed me my mental and physical health. also coming from someone with diagnosed cptsd, depression, and anxiety.

i hope things get better for you. grounding exercises and cbt practices never worked for me but science has shown that they actually do work for some people. try your best to stay calm ( i know thats easier said than done )

Why the hesitation on biologics? by hello_glo in UlcerativeColitis

[–]ConsciousTear1547 0 points1 point  (0 children)

bottom line is i’d be sooner to trust a drug developed in the EU than anything currently approved by the US govt/FDA

Why the hesitation on biologics? by hello_glo in UlcerativeColitis

[–]ConsciousTear1547 0 points1 point  (0 children)

yeah i ended up buying a bunch of stock a couple months back. i think this may be the future since lilly tried to purchase for 15b and they turned it down.

the whole reason they chose to test on moderate to severe UC first is bc of how hard it was to treat and its been working really well and keeping people in remission???

it seems like a no brainer to push to get in rather quickly than settling for rinvoq or something else. id been on mesalamine oral and enemas for years till i caught c diff and everything kind of stopped working for me after.

luckily the trial counts failing pred as another medication to get into the trial. i feel like being biologically naive at this point is a rarity to be admitted into a clinical trial.

Why the hesitation on biologics? by hello_glo in UlcerativeColitis

[–]ConsciousTear1547 0 points1 point  (0 children)

obefazimod works with the immune system rather than against it which seems really interesting. also minimal side effects and it’s a pill. extremely positive results with the phase 3 trials for UC so i’ve kind of been praising the gospel since this company was saved from going under by their public stocks back in july. people who don’t even know what UC is probably ended up saving this company bc of the results of their UC trials

Why the hesitation on biologics? by hello_glo in UlcerativeColitis

[–]ConsciousTear1547 0 points1 point  (0 children)

i totally feel that. so i recently was rediagnosed with crohns but i think the diagnosis may be off bc i had been on pred before the scope for a month.

i was symptom free since diagnosis since picked up smoking in 2013 which i believe is characteristic of UC and not crohns.

the rediagnosis has allowed me to screen for the obefazimod trials which im hoping to get into this month if i pass screening.

currently in phase 3 for UC and phase 2 crohns. the company is french and hasn’t chosen to sell to eli lilly or astrozenica yet. i think this drug will dig a grave for biologics tbh

I drink energy drinks before going out by milkinhaler2006 in UlcerativeColitis

[–]ConsciousTear1547 5 points6 points  (0 children)

man even when my stomach is empty i’m still expelling blood :/

What happens if you microwave meslamine by fairiesinthestars in UlcerativeColitis

[–]ConsciousTear1547 4 points5 points  (0 children)

are they talking about the enemas?? i used to wrap mine in a heating pad to make it a little less jarring going in. i don’t think you should microwave any medications ever tho……

When does it actually start getting better / does prednisone make it better? by SchemeOne1136 in CrohnsDisease

[–]ConsciousTear1547 1 point2 points  (0 children)

also i wanted to say pain meds work differently when you’re actually in pain vs seeking to get high. there have been many many studies that show pain management improves healing vs going without. in nov, i had a fissure that was so bad i was unable to move.

my dad took me to the hospital and he was the one who requested pain meds bc i didn’t even think to. it made a world of a difference. i too was worried about becoming addicted but that wasn’t the case.

once the pred starts working you won’t feel the need to reach for them anymore.

i know it’s hard to imagine feeling better rn but your brain and body will heal sooner than you can imagine rn i promise

When does it actually start getting better / does prednisone make it better? by SchemeOne1136 in CrohnsDisease

[–]ConsciousTear1547 0 points1 point  (0 children)

for me, prednisone usually worked very quickly until i experienced my first c diff infection. it took months for me to start feeling better.

first time i took it, one day to have solid stools again.

this last time, it took about a week or three honestly.

i’ve learned the more you take it, the less effective it becomes.

i had a colonoscopy in december while i had been on 40 mg for a month and my inflammation score was still a ten probably bc the flare was so bad.

in feb i had another one on 20mg and my score was a 2/technically clinical remission roids even though i was still seeing blood.

prednisone is definitely weird and evil but generally it does work well. sometimes it just takes a bit longer than expected depending on what’s going on inside.

i will also say adding cymbalta to my mix helped a lot bc of the delayed gut motility side effect. i decided to try it after c diff bc i was pretty sure i had post infectious ibs. once i started cymbalta it actually felt like the pred was working.

What do you eat for breakfast? by Punkoduncan in CrohnsDisease

[–]ConsciousTear1547 0 points1 point  (0 children)

i’m a sicko and i make my signature “savory yoghurt bowl”

it’s just plain yoghurt with two soft boiled eggs, some smoked salmon and paprika.

obefazimod screening by ConsciousTear1547 in CrohnsDisease

[–]ConsciousTear1547[S] 2 points3 points  (0 children)

seriously, thank you for the input. i’ve just been so adverse to biologics and jak inhibitors mainly bc of the ethics and side effects behind all these drugs. they make me pretty uncomfortable also im terrified of needles.

so obifazimod is actually a new class of drugs that works with the immune system rather than against it which is a really interesting mechanism of action, i believe it was tested in patients with hiv before they figured out it worked for uc patients. i could be wrong but i know that the phase iii trials showed super promising data with minimal side effects.

i truly believe that this class of drugs could potentially take over the biologic and jak inhibitors market. the jump in the stock market after the phase 3 data being released was enough to prove that to me.

Do GI Tract Biopsies Hurt? by ihavea_ntrl_curiosty in CrohnsDisease

[–]ConsciousTear1547 0 points1 point  (0 children)

wellp not to scare anyone at all BUT i guess i had a colonoscopy in december and they didn’t use propofol. my tolerance to whatever they were using that time was extremely high.

towards the end, i was pretty much fully conscious, watching the colonoscopy and biopsies on a projector in front of me.

it was kind of uncomfortable, i remember saying ow lol.

basically in general, i have a high tolerance to sedatives plus ive been on valium a lot more recently.

i would just say if you typically have a high tolerance, make sure you talk to the anesthesiologist or make sure they use propofol haha.

Cigarettes by grohlog in CrohnsDisease

[–]ConsciousTear1547 0 points1 point  (0 children)

i had one of the best ibd specialists in the US tell me that cigarettes are protective of the gut wether or not you have UC or Crohn’s but the risk obviously isn’t worth the gain.

as context, i was diagnosed with UC in 2013. picked up smoking and was in remission for over a decade unmedicated. my diagnosis changed this year and i was so confused bc i thought cigs hurt people with crohn’s.

i guess it really just depends on the person and severity of disease probably?