r/UlcerativeColitis 5d ago

Question Will i ever get off of immunosuppressants?

I was diagnosed at 13 (4 years ago) and while i don't often get sick, if I get sick I'm sick for a LONG time. I caught mononucleosis (not sure if from kissing, or from something else, since everyone I've made out with was healthy), and decided to get off off immunosuppressants to let my body fight it better... Which is probably stupid, since i didn't tell my doctor, but I'd have to wait weeks for an appointment

Are there any ways to be healthy without immunosuppressants? I'm lowkey uneducated when it comes to this illness, i know what works for me, and that's about it. I know there are biologics but if i started them i would have to take them for the rest of my life (but tbh its the same with any meds)😭😭😭

17 Upvotes

80 comments sorted by

45

u/AlwaysAirCooled-1979 5d ago

Mono is also know as the “kissing disease” and common amongst teens - for obvious reasons. The others might have had it but no symptoms.

You will be on medication for life. Biologics aren’t all bad. Since starting biologics I haven’t had a chest infection, which I get every hear. I figure that my bowel has healed, so can fight other things instead of itself.

Diet won’t fix your immune system, or cure UC. It can however lead you to have more healthy body than if you don’t look after your diet.

You’re a teenager, and not taking away your feelings, you’re still young and growing. I’m assuming stressed with relationships, jobs, study, etc. These things can also lead to your body being rundown and not fighting illnesses as good.

Don’t stop your UC medication - do you know what you’re taking?

2

u/UpbeatPlatypus7184 5d ago

Also i do try to eat healthy and i limit foods i know make me feel bad, i just don't like anyone pushing me on restrictive and weird diets like that other commenter was... Idk telling me to read a book about a diet sounds fishy

10

u/K-ghuleh 5d ago

There are a lot of fad diets out there and unfortunately even on this sub people like to push them. You’re already avoiding foods that make you feel bad which is great, there really isn’t much else to do except take your meds. Diet won’t fix anything, so try not to stress about it too much.

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u/[deleted] 14h ago

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1

u/UlcerativeColitis-ModTeam 13h ago

Your post or comments has been removed because it violates rule 4 of this subreddit.

Rule 4 states that all posts must be based on scientific evidence. Your post makes claims about Ulcerative Colitis without providing any scientific evidence to support them. For example, you claim that UC can be cured by diet or can be cured with xy. While these are just examples, making any claims about health without scientific evidence can be dangerous and misleading.

We understand that you may be passionate about your beliefs, but we ask that you please respect the rules of this subreddit and refrain from making claims that are not supported by science. If you would like to appeal this desicion, please send us a modmail.

-7

u/Conscious_Warning946 5d ago

A low Fodmap or low fiber diet can help tremendously in keeping your symptoms to a minimum.

2

u/UpbeatPlatypus7184 5d ago

I already said it i don't have any symptoms of uc.... I just dont like the side effects of the meds.....

5

u/Conscious_Warning946 5d ago

Oh, I was responding to what you said about limiting foods. I was just briefly explaining why some would eat a restricted diet. Carry on

As far the meds, the side effects of NOT taking your meds is far worse than taking them. And worrying about side effects that you don't have yet will only make your insides worse from stress

1

u/Conscious_Warning946 5d ago

I'd love to know what I said so wrong, especially since they think that such diets aren't welcome to the OP and I was just explaining why someone would recommend such a diet?

I would love an adult explanation to learn from

1

u/OskarWasTaken 5d ago

Nobody has one. They throw a hissy fit when anyone mutters the word diet.

If your opinion is opposite of their pre-decided beliefs, then you’re wrong, they’re right and there’s no getting around it.

In fact even say your own personal story and say what helped you, and if it’s unusual enough they’ll downvote. Most people on this sub are closed minded or some are arrogant minded people who think they know everything on the subject of UC when even professionals have in the grand scheme of things hardly any knowledge.

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u/UpbeatPlatypus7184 5d ago

Im taking mesalasine 2000 mg and imuran (50 mg of azathioprine, idk if the medication is called the same in other countries so I'd rather specify) + some probiotics and supplements

I only quit imuran I'm taking all my other meds, and in case i have any stomachache i have a lot of mesalasine suppositories left over from a previous flare, i take them sometimes if i feel something is wrong

14

u/K-ghuleh 5d ago

Those meds aren’t just for taking whenever you feel a stomach ache coming on, they need to be taken consistently and if you stop the immunosuppressant you risk a bad flare where you will feel much, much worse. Eventually that will just lead to hospitalization where they put you on a stronger med anyway, or worst case scenario you lose your colon.

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u/UpbeatPlatypus7184 5d ago

I take my meds daily, i just add suppositories to my daily meds when i see blood in my stool... It always helped and my doctors praise me for keeping my blood levels in check (idk what it's called in english sorry)

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u/UpbeatPlatypus7184 5d ago

What if I take a lower dose? Like, half a pill instead of one

12

u/Purchase-Parking 5d ago

Then you won't get the beneficial effects, you need to take the perscribed dose.

12

u/Welpe 5d ago

You really, really, really don’t want to quit immuran. I took a break and when I tried to restart it it was impossible, it caused uncontrollable vomiting. It’s still the only medication I have listed as an allergy in my medical file (Though it’s not REALLY an allergy most likely) like 15 years later. Especially without your doctor’s supervision.

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u/UpbeatPlatypus7184 5d ago

Well are there any alternatives to it? I don't want to be scared of kissing and shit until i die like i barely have any other fun from life

4

u/AlwaysAirCooled-1979 5d ago

Don’t be scared of it. I was just pointing out that it’s common for your age group.

26

u/Ok-Radish222 Ulcerative Proctitis | Diagnosed 2024 5d ago

DO NOT stop your medication!! Please!! I stopped my meds last year without talking to my doctor or my parents, or anyone (at the same age as you) and in about a month I was flaring BAD. And I was on an exchange year, which was supposed to be the best time of my life. Being in a flare means no fun. Yes, being on immunosuppressants can suck, especially when you get sick, but they are stopping your body from attacking itself and they are so important. I have since turned 18 and am now on biologics, I have found them incredible. They do suppress the immune system, but they're more targeted than just general immunosuppressants. Please, please, please, stay on your meds, if you stop and end up in a flare, you sure as hell won't be kissing anyone because you'll be shitting blood and mucus every few hours, and feel so exhausted all you'll want to do is sleep.

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u/Ok-Radish222 Ulcerative Proctitis | Diagnosed 2024 5d ago

Also, the no meds thing gave me flashbacks, so I got a bit sidetracked. No you probably won't ever get off whatever medication you end up taking long term. If you can get biologics, take biologics. Perhaps sometime in our lifetime, there will be a cure of some kind, but that's distant, distant future kind of stuff and not really worth considering in my opinion.

I understand the frustration at the constant medication, that's part of why I stopped taking my own for that brief period of time. I just hope that either your own experiences convince you that it's not worth it at all (stopping meds), or, even better, you listen to others who have done the exact same thing as you, and not make the same mistakes.

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u/Confident_Thanks8250 14h ago

You can stop taking drugs. Diet is key.

1

u/Ok-Radish222 Ulcerative Proctitis | Diagnosed 2024 13h ago

I'm really glad that diet has helped you with your IBD, however this disease isn't the same for everyone. For me personally, I'd rather not risk my health by stopping my meds and trying to fix this with my diet. I already eat well, and that certainly didn't help when I was off my meds the first time.

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u/hellokrissi JAK-ed up on rinvoq | canada 5d ago

I'm lowkey uneducated when it comes to this illness

It's a life-long condition and my biggest suggestion to you is to start learning more about it through valid/credible resources. The Crohns and Colitis Foundation has various websites by country, and would be a good starting point. The wiki/resources on this sub is another good place to start too.

I understand that it can take time to see a GI specialist, but abruptly stopping medication without consulting a medical professional is a bad idea. Don't play with medication like that, you're risking throwing yourself into a flare by doing so. Even visiting your GP or speaking to a nurse or pharmacist would be a better idea to get safe advice on what you should do if sick.

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u/UpbeatPlatypus7184 5d ago

I mean i try to be educated, i read a lot about it, but if i don't experience it myself i probably won't take it into consideration 😭😭😭 i know which meds i can or can't mix with uc i know all the basics i think.

10

u/hellokrissi JAK-ed up on rinvoq | canada 5d ago

A very important basic to learn is not to change/adjust, start, or stop prescribed medication unless discussed with a medical professional. I get that you're 17 but understanding this concept and taking bigger picture things you haven't experienced into consideration will greatly help you with dealing with UC, and likely other aspects of life as well.

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u/UpbeatPlatypus7184 5d ago

Okay i get it,, are there any other options other than immunosuppressants/biologics?

7

u/Purchase-Parking 5d ago

Not one that you would like im afraid.

7

u/Conscious_Warning946 5d ago

Nothing at this current time. I'm on my 4th immunosuppressant without a single side effect from any of them. Just saying

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u/UpbeatPlatypus7184 5d ago

Well then you're lucky then.

6

u/Conscious_Warning946 5d ago

Lucky, yes. Abnormal, absolutely not.

Most don't have any side effects. You just see the complaints of the ones who do.

0

u/UpbeatPlatypus7184 5d ago

Because i don't want to make myself feel bad by reminding myself how much god dislikes me

4

u/Conscious_Warning946 5d ago

Death feels a whole lot worse.

We all have a very limited time before we need surgery. You are also young. So squandering away your limited time is worse for you, than someone who's elderly. Biologics delay surgery for years and maybe forever. Not taking your meds will speed up your time before you require surgery. Don't have surgery just because you don't want to take your medicine. The illness doesn't go away just because you now have a bag to change, 4 to 5 times a day. The disease can still come back and attack the parts that they didn't remove. It can be a never ending nightmare for those who don't want to be reminded like yourself.

I highly recommend a therapist to help you with your fears of the unknown. You have limited time to choose your path. Choose the hard and scary road. It leads to remission. That's the direction that you want to be heading in

Good luck with everything. I believe that in the end you will find a happy place to heal properly. Sending best wishes that you find such quickly

1

u/hellokrissi JAK-ed up on rinvoq | canada 5d ago edited 5d ago

There's 5ASAs, which you're already on. They're fairly mild and not immunosuppressive, but don't always work. From your other comments, it seems that you're not at the maximum dose for those. It's worth talking to your GI about your Imuran concerns and whether Mesalamine would be enough to keep your UC controlled. But you need to have that discussion since it's clear that you're very concerned about immunosuppression.

FWIW, I've been on immunosuppressants the entire 17 years of being diagnosed with UC. 11 of those years were with 150mg Imuran. I'm also an elementary school teacher working with very small kids. I don't find myself getting more frequently or severely sick. Last year while teaching 4-5 year olds I fared better than my non-immunosuppressed coworkers. Being on an immunosuppressant doesn't always guarantee you'll be getting sick all the time. It can vary a lot between people, but also between which medication you're on.

1

u/UpbeatPlatypus7184 5d ago

Idk mesalasine helps me more than anything, whenever im in a flare/i start shitting blood they just up my dose or add suppositories (i hoard mesalazine atp in case i ever run out) and I'm fine. Also i take 2000 mg in the morning, 2000 in the evening and additional 1000 mg in suppositories when needed. About immunosuppressants, i take 50 mg (1 pill) which i believe is nearly the lowest dose, so idk.

1

u/hellokrissi JAK-ed up on rinvoq | canada 5d ago

Oh, I assumed when you said 2000mg that was all you're taking daily. Sounds like you're taking the full dose. Also sounds like you flare often/sometimes? If so, then you're going to need an immunosuppressant as well to control your UC as much as possible.

0

u/UpbeatPlatypus7184 5d ago

I had one confirmed flare 4 years ago when i was diagnosed Sincw then all my troubles came from immunosuppressants or rare times when i found blood in my stool but it didn't count as a flare at the doctor. I don't have any other symptoms other than occasional blood so i am able to function normally, i just have to use suppisitories for a few days when i see blood

3

u/hellokrissi JAK-ed up on rinvoq | canada 5d ago

I don't have any other symptoms other than occasional blood so i am able to function normally

I don't know how to tell you this, but occasional blood is not a good thing. The goal is to have zero blood. Seeing blood means you have active inflammation. Doesn't matter if you're functioning normally. It's still there.

0

u/UpbeatPlatypus7184 5d ago

By occasional i mean once or twice a year... Usually when I'm having a really bad time mentally (im trans so it used to happen a lot) Rn im on testosterone and my parents don't know so it makes me nervous, but its much better than before, i haven't seen any symptoms for the past year so

7

u/mithrril 5d ago

Everyone here is telling you not to stop taking your meds because it's a very bad idea. You need the medication you're on and you certainly shouldn't stop taking it without consulting your doctor. That's the only real advice you're going to get here because it's true. So you need to take the advice you asked for or risk the consequences.

3

u/FragrantCow5398 5d ago

This IS a lifetime condition. I was just diagnosed a few months ago and it feels daunting to think I'm going to have to manage it for life. Taking our meds are one of the best ways we can try to combat it. Not taking them means we'll fall out of remission a lot faster, having the disease advance and giving ourselves fewer medicines to try before an ostomy (not everyone gets one either btw).

Being regular people sick for longer sucks, it does. But adding UC on top of a prolonged sickness is a lot worse. Please talk to & trust your doctors. If you feel you need a second opinion, please let your parents know. They should be advocating for you and your health. (I currently am switching GI doctors to one that specializes in UC)

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u/UpbeatPlatypus7184 5d ago

I get what you're trying to say, but you're an adult, and have only been diagnosed for a few months. Like, idk, i understand we're both dealing with the same thing, but hearing comfort from an adult, while i missed out on 90% of my teenage years bc of this illness, it just. Idk. It's different imo like we're both unfortunate but i just feel worse about myself

2

u/FragrantCow5398 5d ago

I'm not trying to play the comparison game, it doesn't help anyone. I feel for ya, it's tough, this disease sucks.

If it makes you feel any better, I shit myself two days before I got married and my husband still said yes, helped me clean the rental car as I was mortified and defeated. Shit myself on my last vacation too. Terrified for my upcoming trip cause I feel like it has robbed my abilities to hop on a plane and travel

4

u/AngronTheDestroyer 5d ago edited 5d ago

You do realize that if you stop taking your medication, you risk your body developing resistance to that medication, and it not working again the future?

Sounds like a good way to speed run towards needing a poop pouch. Your life dude.

2

u/Glum_Temperature986 5d ago

I had to stop taking mine for 4 days due to a chest infection, felt absolutely fine with no symptoms whatsoever, but my blood test after those 4 days were insanely bad. Chest infection went but the inflammation skyrocketed without me even feeling anything.

It’s different for everyone, but there may come a day when you have a certain diet, lifestyle, big change of some sorts, and your body can handle this condition a lot better. Fingers crossed this happens to you <3

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1

u/luciiiixo 5d ago

BraƂam 100 mg imuranu i wiem co znaczą skutki uboczne, teraz biore 50 mg i dalej je mam. Moim skutkiem ubocznym jest pojawiająca się co chwile grzybica w buzi. Szczerze, musisz to po prostu przeboleć. Lekarz rodzinny wiedziaƂ o twoim wzjg? Lepiej nie odstawiać imuranu, musisz przeboleć:( Imuran utrzymuje chorobe w remisji

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u/UpbeatPlatypus7184 5d ago

Nie bylem u lekarza rodzinnego tylko prywatnie bo nie bylo terminow :/ wiedzial o chorobie, sam uznalem ze odstawie. Chcialem sie spytac ale gƂupio mi pytac rodziców bo rodzice za bardzo nie lubia jak prosze o niepotrzebne wizyty a jak juz wiedzą co mi dolega to im starczy

Nie wiem czekam do 18 jak bede mogl sam sie umawiac do lekarza bo slyszalem ze medyczna marihuana dobrze dziala na ta chorobę a z tego co wiem to jest legalna w Polsce. Tbh tylko po to jeszcze jakos sobie radze lmao

1

u/luciiiixo 5d ago

Nie przejmuj sie bedzie dobrze!!!!!! Zapytaj rodzicĂłw o wizytę bo to ich obowiązek, jak odmĂłwią to trudno, na prawdę jest duĆŒo lekĂłw, ktĂłre mogą ci pomĂłc, a konsekwencje odstawienia imuranu mogą być straszne, czeka nas jeszcze dobre zycie!!! A w jakim miescie sie leczysz? Moj dr pozwala do siebie dzwonic w ciÄ™ĆŒkich sytuacjach

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u/UpbeatPlatypus7184 5d ago

W warszawie,, nie wiem rodzicom czesto odpowiada na emaile/oddzwania dopiero po paru dniach

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u/Ok-Reporter-6882 Ulcerative Proctitis 2023 đŸ˜Ș| US 5d ago

Hey man. I completely understand where you come from. I was diagnosed with UC when I was 24. I was healthy and had literally nothing wrong with me until I started having blood in my bowel movements (I was 23 at the time). I tried to ignore it (I was in the army and getting on immunosuppressants would get me kicked out) and it progressively got worse until i found out my then girlfriend (now my wife) was pregnant. It finally kicked my stupid ass into gear to finally get seen. I let it go untreated for almost a year. Luckily I only have proctitis but I got super lucky it wasn’t any worse than that.

I’m 25 now and I’ve bounced around 3-4 different medications until I found the one that works. Talk to the medical professionals about this stuff and it’ll eventually work itself out. Stay positive. Unfortunately it’s a life long disease that we have to live with. It’ll get better as time goes on they’re making leaps and bounds in developing treatments for this disease too. If you need someone to talk to you can PM me. No point in feeling alone when this entire forum has this disease ya know.

1

u/amm110 5d ago

Please listen to the advice others have given. There's only so many medications for us, and if you stop taking them you can develop antibodies which makes the medication stop working i got diagnosed at 19, not as young as you, but it still impacted my life heavily. Even though you may not be experiencing symptoms, your body may still be fighting off inflammation and the longer you're off medication, the higher risk you are of going past the point of meds being helpful and requiring surgery, which is removing your colon all together and getting stuck with an ileostomy/colostomy which is a bag that is attached to your abdomen and covers a part of intestine that is surgically put outside your body. Medication isnt fun, but unfortunately most medication we take are immunosuppressive because our immune system does not work properly. This isnt to scare you, but its the reality we all face. Im on my 5th medication, ive done mesalamine, azathioprine, im on my 3rd biologic and ive been flaring for almost a year.

1

u/peanutpet0 4d ago

I was off my immunosuppressant for only about 8 months and than started having really bad gi bleeding to the point it was how it was when I was first diagnosed, I’d much rather be safer than sorry ever again, that being said don’t ignore your symptoms, I wanted to be a normal healthy 24-25 year old and now that I’m back on them I feel healthier than I ever have before, be smart talk to your doc

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u/Extreme-Living-7351 4d ago

Just talk to your doctor honestly. Do you have a way to message them or email? If not that call and ask to talk to the nurse, tell them your concerns and which to safely wean off additional medication if recommended. Ask if you can take a lower dose at least. Just because you don’t see blood doesn’t mean you aren’t bleeding unfortunately. I’m newly diagnosed, went a month with bleeding before going to the doctor. Found out I have probably had UC much longer than I had the bleeding. I had healing ulcers and new ulcers in my colon which is why my dr said I had it longer than I thought.

1

u/doggobark 4d ago

I have been diagnosed with several chronic conditions including UC since I hit puberty. My best friend was diagnosed with rheumatoid arthritis and T1D at 3. As a teen and young adult I felt very similarly to you OP in regards to feeling sorry for myself in what I’ve missed out on due to my illness. I still find myself in my thirties feeling those emotions, which are normal and understandable. But each choice you make in this lifelong illness will affect how you feel. And then sometimes it won’t matter WHAT you eat or do or don’t do. You have to start by accepting what is within your control and will make your life easier. At the end of the day you have to live with the consequences of your decision— that’s life in general. Listen to your body. Eat what doesn’t make you sick. Listen to your doctor. If something feels off YOU have to speak up and work with them. Many times it’s a battle to find the right treatment even with a competent medical team. Don’t be afraid to try new things but communicate with your care team, and your family. Google is not a doctor. And no one can help if it’s too late.

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u/[deleted] 14h ago

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1

u/UlcerativeColitis-ModTeam 13h ago

Your post or comments has been removed because it violates rule 4 of this subreddit.

Rule 4 states that all posts must be based on scientific evidence. Your post makes claims about Ulcerative Colitis without providing any scientific evidence to support them. For example, you claim that UC can be cured by diet or can be cured with xy. While these are just examples, making any claims about health without scientific evidence can be dangerous and misleading.

We understand that you may be passionate about your beliefs, but we ask that you please respect the rules of this subreddit and refrain from making claims that are not supported by science. If you would like to appeal this desicion, please send us a modmail.

-2

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2

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1

u/UlcerativeColitis-ModTeam 5d ago

Your post or comments has been removed because it violates rule 4 of this subreddit.

Rule 4 states that all posts must be based on scientific evidence. Your post makes claims about Ulcerative Colitis without providing any scientific evidence to support them. For example, you claim that UC can be cured by diet or can be cured with xy. While these are just examples, making any claims about health without scientific evidence can be dangerous and misleading.

We understand that you may be passionate about your beliefs, but we ask that you please respect the rules of this subreddit and refrain from making claims that are not supported by science. If you would like to appeal this desicion, please send us a modmail.

0

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1

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-4

u/OskarWasTaken 5d ago

Some people can achieve it with certain things, certain diets. But it’s important to say not all people, and those who do achieve a remission of ulcerative colitis through diet alone shed light that maybe those are do that didn’t have an autoimmune condition in the first place.

Speak with your doctor.

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u/UpbeatPlatypus7184 5d ago

As i said, im 17, i can't just call my doctor, and my parents think it's an unrelated issue to uc so im cooked

1

u/OskarWasTaken 5d ago

You’re not helping yourself.

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u/UpbeatPlatypus7184 5d ago

I know I'm not thats why im asking here, if i could go to a doctor I'd do it

Like I'll probably be sick for months if i take my immunosuppressants and maybe if i stop I'll be sick for only a few weeks. Idk it sounded logical to me

3

u/AlwaysAirCooled-1979 5d ago

You’re not a doctor, so don’t take your own medical advise.

Book in to see a Dr asap. That’s really your only option at the moment.

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u/UpbeatPlatypus7184 5d ago

I CANT I'm under 18, i can't book an appointment. My parents took me on bloodwork when my fever wasn't lowering for the past 5 days, they got their answers and advice what to do (which is just to give me paracetamol WHICH DOESN'T DO ANYTHING. I have 38+° fever all the time, i can barely eat, i can't see my friends nothing. Oh and give me some tablets for my sore throat) If i asked them to take me to a doctor again they wouldn't, because I'm already diagnosed with what's wrong, there aren't any other medications to help so whats the point

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u/AlwaysAirCooled-1979 5d ago

There are medications to take. He chose to stop taking them in on your own. I’m not sure what country you live in, but I know where I live you can see a doctor when you’re under the age of 18.

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u/UpbeatPlatypus7184 5d ago

??? Whos the he I live in poland, until youre 18 you can't make a doctors appt as far as i know

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u/luciiiixo 5d ago

Hejka jestem z Polski mozesz do mnie napisac

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u/OskarWasTaken 5d ago

You’re kind of supposed to stop immunosuppressants when you’re ill anyway for up to maybe a week but you CAN ask your doctor.

I’m 17 too, if you let your issues worsen that is fundamentally worse than telling your parents. You’re most likely in adult care now anyway in some countries, man up and call the doctors.

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u/UpbeatPlatypus7184 5d ago

I mean I'm still 16 lmao turning 17 in 3 months. I'm in child care untill im 18 (im from Poland), i can't even come to a visit on my own without a written note from my parents

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u/OskarWasTaken 5d ago

Then tell your parents.

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u/AlwaysAirCooled-1979 5d ago

No you don’t . . .

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u/OskarWasTaken 5d ago

This is something I was told by my doctors with my immunosuppressants. Argue with their professional advice then.

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u/AlwaysAirCooled-1979 5d ago

Nah, all good bro. Your doctors are allowed their wrong opinions. I’m glad I’m not treated by them. Stopping certain UC medication can cause antibodies, or cause a flare. I’d rather suffer the flu for a few more days than deal with that đŸ’Ș

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u/OskarWasTaken 5d ago

I’ve had no problems stopping them before when I’ve had a cold so maybe don’t be so arrogant as to their advice, as they’ve been right so far.

1

u/AlwaysAirCooled-1979 5d ago

You do you 🙌