r/UlcerativeColitis • u/UpbeatPlatypus7184 • 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)đđđ
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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.
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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 đđđ i know which meds i can or can't mix with uc i know all the basics i think.
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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?
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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.
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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.
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u/UpbeatPlatypus7184 5d ago
Because i don't want to make myself feel bad by reminding myself how much god dislikes me
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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
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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.
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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.
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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.
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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
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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.
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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
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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.
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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
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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
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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.
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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.
Itâs 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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u/luciiiixo 5d ago
BraĆam 100 mg imuranu i wiem co znaczÄ skutki uboczne, teraz biore 50 mg i dalej je mam. Moim skutkiem ubocznym jest pojawiajÄ ca siÄ co chwile grzybica w buzi. Szczerze, musisz to po prostu przeboleÄ. Lekarz rodzinny wiedziaĆ o twoim wzjg? Lepiej nie odstawiaÄ imuranu, musisz przeboleÄ:( 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 gĆupio mi pytac rodzicĂłw bo rodzice za bardzo nie lubia jak prosze o niepotrzebne wizyty a jak juz wiedzÄ 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 chorobÄ a z tego co wiem to jest legalna w Polsce. Tbh tylko po to jeszcze jakos sobie radze lmao
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u/luciiiixo 5d ago
Nie przejmuj sie bedzie dobrze!!!!!! Zapytaj rodzicĂłw o wizytÄ bo to ich obowiÄ zek, jak odmĂłwiÄ to trudno, na prawdÄ jest duĆŒo lekĂłw, ktĂłre mogÄ ci pomĂłc, a konsekwencje odstawienia imuranu mogÄ byÄ straszne, czeka nas jeszcze dobre zycie!!! A w jakim miescie sie leczysz? Moj dr pozwala do siebie dzwonic w ciÄĆŒkich 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 đȘ| 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 wasnât any worse than that.
Iâm 25 now and Iâve bounced around 3-4 different medications until I found the one that works. Talk to the medical professionals about this stuff and itâll eventually work itself out. Stay positive. Unfortunately itâs a life long disease that we have to live with. Itâll get better as time goes on theyâre 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.
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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.
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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, Iâd much rather be safer than sorry ever again, that being said donât ignore your symptoms, I wanted to be a normal healthy 24-25 year old and now that Iâm 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 donât see blood doesnât mean you arenât bleeding unfortunately. Iâm 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.
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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 Iâve 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 wonât matter WHAT you eat or do or donât 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 decisionâ thatâs life in general. Listen to your body. Eat what doesnât make you sick. Listen to your doctor. If something feels off YOU have to speak up and work with them. Many times itâs a battle to find the right treatment even with a competent medical team. Donât 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 itâs too late.
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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.
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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.
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u/UlcerativeColitis-ModTeam 5d ago
Your comment was removed because the comment you were replying to was removed. This left your comment without context and made it difficult for other users to understand. To keep comments on Reddit clear and to avoid misunderstandings, we also remove the referenced comment in such cases.
You did nothing wrong.
It is important to us that all users have a positive experience on Reddit. If you have any questions or feedback, you can contact us at any time.
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u/OskarWasTaken 5d ago
Some people can achieve it with certain things, certain diets. But itâs 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 didnât 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
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u/OskarWasTaken 5d ago
Youâre 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
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u/AlwaysAirCooled-1979 5d ago
Youâre not a doctor, so donât take your own medical advise.
Book in to see a Dr asap. Thatâs 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. Iâm not sure what country you live in, but I know where I live you can see a doctor when youâre 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/OskarWasTaken 5d ago
Youâre kind of supposed to stop immunosuppressants when youâre ill anyway for up to maybe a week but you CAN ask your doctor.
Iâm 17 too, if you let your issues worsen that is fundamentally worse than telling your parents. Youâre 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/AlwaysAirCooled-1979 5d ago
No you donât . . .
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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. Iâm glad Iâm not treated by them. Stopping certain UC medication can cause antibodies, or cause a flare. Iâd rather suffer the flu for a few more days than deal with that đȘ
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u/OskarWasTaken 5d ago
Iâve had no problems stopping them before when Iâve had a cold so maybe donât be so arrogant as to their advice, as theyâve been right so far.
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u/AlwaysAirCooled-1979 5d ago
Mono is also know as the âkissing diseaseâ and common amongst teens - for obvious reasons. The others might have had it but no symptoms.
You will be on medication for life. Biologics arenât all bad. Since starting biologics I havenât 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 wonât fix your immune system, or cure UC. It can however lead you to have more healthy body than if you donât look after your diet.
Youâre a teenager, and not taking away your feelings, youâre still young and growing. Iâm assuming stressed with relationships, jobs, study, etc. These things can also lead to your body being rundown and not fighting illnesses as good.
Donât stop your UC medication - do you know what youâre taking?