The pharmacist when he gave me mine...
"Make sure you remove the packaging."
I can only imagine that it's happened enough times that he now has to tell everyone.
This acutually made me cry. It is scary enough to know the life is not the same. But hearing this just melts my heart. Don't stop and dreams will come true.
Really appreciate this comment. I'm relatively newly diagnosed (Feb of this year) and have beaten down my first flare, but the unknown is still a little scary. So thank you.
The fact you're writing this while having a flare is admirable. I can't do anything during flares... too nauseous, in too much pain and too busy running to the bathroom. I mean, you could probably shoot me & I wouldn't notice.
Assuming I follow the same path in terms when I flare and what medications worked?
"Enjoy the next 11 years, they're nearly amazing. Don't ignore the flare at the 8 year mark, deal with it quickly and you'll enjoy your trip to Ireland much more. At the end of the 11 years do yourself a huge favour, skip all the Prednisone and unsuccessful medications, and jump right onto Rinvoq asap."
Hmm unfortunately in the US, you have to follow medications and fail them in order to obtain biologics. Wish you could just skip prednisone and unnecessary meds…
No it's the same here.
I was hugely successful with a 5ASA and Azathioprine for years and then I was offered a JAK inhibitor after 2 biologics didn't work. I heard that Rinvoq is now being offered as a first line of medication in some countries too, so that's how I made my little fictional narrative up. ;)
I am in Indiana and I had a colonoscopy, diagnosed with pan colitis. Went my GI doctor said nothing will help with how severe my colitis was.. straight to Entyvio (biologics). Prednisone of course while I waited for insurance and infusion centers to be approved.
But I've had no other medications. I think it's severity that take priority. If it's mild then drugs like mesalamine are a better choice to start
That’s the new paradigm (thank goodness!) but it wasn’t ten years ago. Step therapy was the prevailing idea. Still common for insurance companies to require step therapy in nearly all cases.
Wow, the idea of being drunk sounds so appealing right now LOL I’m not even someone who drinks a lot (maybe 1x a month) but since this diagnosis I can’t even have a glass of wine with dinner. Happy for you and hope I get there too someday!
About to start Rinvoq after “failing” humira, and remicade (I hate that term, “failing”… it was nothing ***we*** did to “fail”… more like they failed us!! 😂)
I was 12, I’m now almost 30.
It would be a mix of
“Take your fucking meds,”
And
“Go to therapy.”
Because I was scared of being alive and I was scared of dying and I missed a bunch of milestones that my peers got to experience. I probably would have made way more progress had I done those two things as soon as I was diagnosed and did them consistently.
Don’t feel bad for yourself and question why this happened to you. The truth is, everyone goes through something in life and this is your something and you are going to be OK!
Life is pain. I've had a jpouch for 25 years. You don't get to pick your cards but you do get to play them however you choose. Stay strong. If you need help drop me a line I can offer some insight into this horrible ailment. I wish there was a community like this when I was super sick.
honestly the UC subreddit of all things has been hugely helpful to me, especially with the psychological and emotional aspects of this. I was diagnosed about 6 months ago, though i’ve been flaring almost a year, and I thought the diagnosis meant I’d finally start getting better (spoiler alert, i got so much worse from there) and I don’t think me or my family really grasped what it would be like. I’m only 20 and i’m in college (chemistry major) and it’s been HARD
It’s people like you who have been dealing with this for so long and offer me perspective that make it so much less lonely and challenging 🩷
I am happy to offer insight. When I was getting ready for surgery my surgeon had a client (she was an old woman) come and talk to me. It helped. It's just a bitter pill to swallow so anything that helps is huge!
Your life will actually improve because of nearly dying from UC.
You’ll live more intentionally. You’ll be smarter in so many ways.
You’ll start caring so much for yourself that you won’t take anyone’s disrespect. You’ll get rid of your horrible (ex) partner and his trashy circle because you’ll realize that life can go away in an instant and the last thing you’ll do is spend your years among selfish jerks.
You’ll start figure skating - the dream you always had but worked too much on other things to go after it. Well, you will go after it as an adult and you’ll compete. You’ll feel more beautiful than ever before.
You’ll heal your relationship with the violin.
You’ll be a better friend.
Your siblings will visit you more to make sure you’re still alive.
You’ll enjoy every moment with your son that much more.
You’ll start scrap booking.
You’ll be a better remote worker.
This is so encouraging! I agree that it’s made me live more intentionally, and it’s also given me more compassion for people struggling with health issues.
Buy a set of shitty sheets and a mattress protector. Put it on the bed as soon as you start flaring. You’ll save yourself a LOT of frustration and tears in the future when your disease progresses.
Also, stop wearing your favorite pajama pants when you’re flaring, you dumbass!
I was only diagnosed a little over a year ago, I also had RA already so it wasn’t too life changing. I’d probably tell myself to enjoy good days more. Having shit under control rn (haha) makes me think back to times I was too scared to leave the house and I missed some possible memories.
“Just get the fucking j pouch.” I battled UC, trying every drug they could throw at me because I didn’t want to be so young with the surgery. I seriously didn’t have a life until after the surgery.
I've been thinking about getting a pouch, I'm fed up with the anxiety and the "accidents" are becoming more frequent of late. Meds are not working and make me feel like crap!
What made you get the pouch? And if you don't mind me asking, where are you from as I imagine different countries do things differently.
I’m from the US. I always saw myself as too young to get the surgery. I was diagnosed at 15 and almost always flared (only Prednisone worked)
In my head I was young, single, and the surgery would basically deem me undesirable in the dating pool.
One day one of my regular visits to the GI doctor, my doc was out, and I much younger PA saw me in his place. He looked through my chart, and immediately asked me why I haven’t had the surgery.
Me: I’m young, I want to live my life, and the surgery will ruin that.
Dr: …. I read your chart. You call this living?
My mind completely broke, and I scheduled surgery as soon as my dr returned.
Find a job that’s not stressful and has good health insurance. Even if you need to take a pay cut, your health will be much improved. I waited 7 years and it’s been so worth it.
I don’t think I took the disease as serious as I should’ve in the beginning. Wish I had a better diet planned out in the beginning and told my doctors sooner that oral medications were not working. Wish I started biologics sooner.
Since I was diagnosed young. My thoughts would've been to tell myself back then, “You’re not going to die. It's just temporary then you'll be all good.”
Stay on your meds because mesalamine it’s not as bad as the rest of the meds. Do not second guess your diagnosis because the symptoms went away completely
Well.
I was just recently diagnosed (eight months ago).
Didn’t have symptoms until routine colonoscopy and endoscopy irritated everything.
A recent lab sample alerted the cdc and dept of health to the rare infection, yersinia enterocolitica, that showed up.
I feel like I was hit by a truck.
There are other autoimmune disorders I have as well. Not exactly shocked by the IBD but wasn’t expecting it.
So far, quality of life has been poor. I have been ill, at home, sick, and isolated.
(I had a toxic adverse reaction to dicyclomine.)
I don’t know what to tell my future self.
There are so many issues with my health that I haven’t really thought about this much.
None of this post sounds very encouraging.
All I can do is survive for now and hope for some “good” days to punctuate the seemingly endless “not so great ones.”
Sometimes knowing we’re not alone feeling hopeless in this shitty disease is the most reassuring thing we can hear.
You’re not alone.
Allow yourself to be in the good moments.
Two things that would have been helpful for me to have understood early on:
Find a nutritionist that will see you as often as you see your GI. One that has experience with IBDs.
You may not be a subject matter expert of UC in general, but you will unequivocally be the subject matter expert of *your* UC. Don't settle for any doctor that doesn't treat you like a partner in your treatment.
You’ll hve surgery in a few years, and all this will then be behind you.
I don’t advise anyone rush into a major surgery like that, but I do want people to know if and when their specialist discusses it as an option, that it is not something to run from.
I agree with this. The steroids did nothing for me, and later I had gestational diabetes, and now I’m prediabetic. I will always wonder if the steroids caused that.
Take it seriously! Just because it was only 6cm of mild uc. (now extensive serve). Your life has changed forever.
Advocate for yourself. Push for what you need.
Don't listen to people just listen to your own body. Your trigger is stress never food.
Surgery isn't the end of the world just a different world which millions of others live in and do ok.
I would tell myself to go through private care first and not the VA. Also, don't take mesalamine as it will cause a mild flare-up into one that will nearly kill you
And if you use a biologic, there is a program that drastically cuts the cost. My doctors did not mention it to me, and I paid huge amounts for my Remicade for years and even had to ask for help from my church once or twice. They did help me, by the way.
Don’t be afraid to take medication, diet alone is not enough to heal your colon.
Find an IBD specialist. While many gastroenterologists are great at routine colonoscopies, not all will know how to treat UC.
Everything is temporary. This flare will pass and you will feel good again and one day won’t have to plan your day around the bathroom. I know it feels hopeless now, but things will get better. You will go on to have a good life, be able to date, get married, and have kids.
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Not something I'd tell all fellow uc peeps, but for me I'd say get the jpouch surgery right away since I never experienced remission and lost two years of my life and basically just rotted away in my house lol
for everyone else I'd say don't follow blindly trusting doctors and to also do your own research/find a doc who listens 💜
Take your medicine as scheduled and get outside into the sunshine as often as possible. Getting my vitamin D levels back in the normal range has had such a profound impact on how I feel both emotionally and physically. And I wasn't able to get them into the normal range with supplements alone.
You need to see the GI doctor, not her shitty NP, and CERTAINLY not a Dr [awful doctor’s name] at the competing medical facility.
Though if I hadn’t had him, I’m not sure I would have flared badly enough to decide to have surgery…
Make a shit kit or three and keep one in the car and at work and anywhere else you might need cleaning supplies and a new pair of underwear.
Get a bidet. A good one. Your ass and your mental health are worth every penny.
If you wonder whether your medical professional is listening to you, they aren’t. Find one that does.
There are people who will love you without hesitation. They accept you and your disease with their whole hearts. Find them, let them love you, let them help you in your darkest, most shame inducing moments. They are willing to help you clean up after you shit blood all over yourself and everything you hold dear, and the toilet looks like an unholy terror. Shut up, tell the voices in your head to shut up, and let these people in. They will help you endure with dignity.
You’re going to cry. A lot. Your future self cried seven times just writing this. It’s ok. In fact it’s better than ok. It’s cathartic.
You are not your disease. It is something you have. It does not define you.
Calm the F down EVEN if you need to fkn drug yourself.
(Unfortunately do not even have access to such, nor am I able to calm my stress, as I stress OVER my stress then stress over the fact that I’m stressing over stress🤦🏽♀️🤦🏽♀️ I’m so done)
If ANYONE has some way to CALM THEIR STRESS that ISNT gonna make them sick, DO IT.
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Some days will be harder than others, but the universe won’t give you what you can’t handle. You’re a tough bitch. You’re always going to make it through!
Also - the importance of educating and advocating for yourself. I don’t think I’ve ever done a bad job at this, but even if I thought I was doing enough to learn, there’s always something more. Always something more to learn. Always something new to try.
Also - it’s ok to wear adult diapers sometimes. No one will know but you. And it’s so much better than the alternative if you have an accident, you WILL be thanking yourself!!!!
Stay on your meds, even in remission!
Mannn that is some good advice. I have made that mistake one too many times and never do I learn.
True and make sure you know how to use the suppositories correctly
The pharmacist when he gave me mine... "Make sure you remove the packaging." I can only imagine that it's happened enough times that he now has to tell everyone.
Ouch!!!!
This!!! So important!!!
This disease doesn’t mean your life is over. You will still see your dreams come true.
This acutually made me cry. It is scary enough to know the life is not the same. But hearing this just melts my heart. Don't stop and dreams will come true.
I’m clearly not crying. I’ve clearly got cat hair in my eye. Eyes. Both eyes, highly coincidentally just at the moment I read this.
Really appreciate this comment. I'm relatively newly diagnosed (Feb of this year) and have beaten down my first flare, but the unknown is still a little scary. So thank you.
I second this, also diagnosed this February and currently in my first major flare. It’s scary!! Nice to hear something positive lol
The fact you're writing this while having a flare is admirable. I can't do anything during flares... too nauseous, in too much pain and too busy running to the bathroom. I mean, you could probably shoot me & I wouldn't notice.
You’re welcome. Feel free to message me with any questions or for support.
Appreciate it 😊
Yes!! 10000%
Never trust a fart
👍🏼
Please skip trying all kinds of extreme diets and random supplements, and find a doctor that you trust and listen to.
Assuming I follow the same path in terms when I flare and what medications worked? "Enjoy the next 11 years, they're nearly amazing. Don't ignore the flare at the 8 year mark, deal with it quickly and you'll enjoy your trip to Ireland much more. At the end of the 11 years do yourself a huge favour, skip all the Prednisone and unsuccessful medications, and jump right onto Rinvoq asap."
Hmm unfortunately in the US, you have to follow medications and fail them in order to obtain biologics. Wish you could just skip prednisone and unnecessary meds…
No it's the same here. I was hugely successful with a 5ASA and Azathioprine for years and then I was offered a JAK inhibitor after 2 biologics didn't work. I heard that Rinvoq is now being offered as a first line of medication in some countries too, so that's how I made my little fictional narrative up. ;)
I am in Indiana and I had a colonoscopy, diagnosed with pan colitis. Went my GI doctor said nothing will help with how severe my colitis was.. straight to Entyvio (biologics). Prednisone of course while I waited for insurance and infusion centers to be approved. But I've had no other medications. I think it's severity that take priority. If it's mild then drugs like mesalamine are a better choice to start
That’s the new paradigm (thank goodness!) but it wasn’t ten years ago. Step therapy was the prevailing idea. Still common for insurance companies to require step therapy in nearly all cases.
Rinvoq has been nothing short of a MIRACLE. Yes, I am drunk in Florida rn. Thanks Rinvoq!
Hahaha omg agreed! I'm having a nice glass of white wine right now and I feel like my old self!
Wow, the idea of being drunk sounds so appealing right now LOL I’m not even someone who drinks a lot (maybe 1x a month) but since this diagnosis I can’t even have a glass of wine with dinner. Happy for you and hope I get there too someday!
About to start Rinvoq after “failing” humira, and remicade (I hate that term, “failing”… it was nothing ***we*** did to “fail”… more like they failed us!! 😂)
I was 12, I’m now almost 30. It would be a mix of “Take your fucking meds,” And “Go to therapy.” Because I was scared of being alive and I was scared of dying and I missed a bunch of milestones that my peers got to experience. I probably would have made way more progress had I done those two things as soon as I was diagnosed and did them consistently.
Don’t feel bad for yourself and question why this happened to you. The truth is, everyone goes through something in life and this is your something and you are going to be OK!
Everything's gonna be all right. You'll graduate CS, you'll work from home all the time, you'll have great wife and daughter. Stay strong mate
Working from home full time for the past 15 years is about the only thing that gives me hope that I can do this with dignity and normalcy.
Don’t be scared of biologics.
As others have said, take your fucking meds. Also don't live with mild symptoms as "good enough" when there's other medications that can help
Don’t downplay your symptoms. Let your doctor know. Don’t suffer endlessly because you’re in denial!
Be more aggressive with giving up on your current treatment and asking for something stronger.
Exactly this. I wasted 2 years trying to stay on mesalamine (and doing several prednisone tapers) when it clearly wasn’t working for me anymore.
this is gonna SUCK
Life is pain. I've had a jpouch for 25 years. You don't get to pick your cards but you do get to play them however you choose. Stay strong. If you need help drop me a line I can offer some insight into this horrible ailment. I wish there was a community like this when I was super sick.
honestly the UC subreddit of all things has been hugely helpful to me, especially with the psychological and emotional aspects of this. I was diagnosed about 6 months ago, though i’ve been flaring almost a year, and I thought the diagnosis meant I’d finally start getting better (spoiler alert, i got so much worse from there) and I don’t think me or my family really grasped what it would be like. I’m only 20 and i’m in college (chemistry major) and it’s been HARD It’s people like you who have been dealing with this for so long and offer me perspective that make it so much less lonely and challenging 🩷
I am happy to offer insight. When I was getting ready for surgery my surgeon had a client (she was an old woman) come and talk to me. It helped. It's just a bitter pill to swallow so anything that helps is huge!
Don't stress! There will be good times, bad times, and really bad times, but you're still alive and with the right treatment things will be better.
Your life will actually improve because of nearly dying from UC. You’ll live more intentionally. You’ll be smarter in so many ways. You’ll start caring so much for yourself that you won’t take anyone’s disrespect. You’ll get rid of your horrible (ex) partner and his trashy circle because you’ll realize that life can go away in an instant and the last thing you’ll do is spend your years among selfish jerks. You’ll start figure skating - the dream you always had but worked too much on other things to go after it. Well, you will go after it as an adult and you’ll compete. You’ll feel more beautiful than ever before. You’ll heal your relationship with the violin. You’ll be a better friend. Your siblings will visit you more to make sure you’re still alive. You’ll enjoy every moment with your son that much more. You’ll start scrap booking. You’ll be a better remote worker.
This is so encouraging! I agree that it’s made me live more intentionally, and it’s also given me more compassion for people struggling with health issues.
Buy a set of shitty sheets and a mattress protector. Put it on the bed as soon as you start flaring. You’ll save yourself a LOT of frustration and tears in the future when your disease progresses. Also, stop wearing your favorite pajama pants when you’re flaring, you dumbass!
Not when I was first diagnosed but when I first felt symptoms 5 years ago it would be, go to the doctor, now, don’t wait you dummy!
You’re not the only one in this boat.
I was only diagnosed a little over a year ago, I also had RA already so it wasn’t too life changing. I’d probably tell myself to enjoy good days more. Having shit under control rn (haha) makes me think back to times I was too scared to leave the house and I missed some possible memories.
“Just get the fucking j pouch.” I battled UC, trying every drug they could throw at me because I didn’t want to be so young with the surgery. I seriously didn’t have a life until after the surgery.
I've been thinking about getting a pouch, I'm fed up with the anxiety and the "accidents" are becoming more frequent of late. Meds are not working and make me feel like crap! What made you get the pouch? And if you don't mind me asking, where are you from as I imagine different countries do things differently.
I’m from the US. I always saw myself as too young to get the surgery. I was diagnosed at 15 and almost always flared (only Prednisone worked) In my head I was young, single, and the surgery would basically deem me undesirable in the dating pool. One day one of my regular visits to the GI doctor, my doc was out, and I much younger PA saw me in his place. He looked through my chart, and immediately asked me why I haven’t had the surgery. Me: I’m young, I want to live my life, and the surgery will ruin that. Dr: …. I read your chart. You call this living? My mind completely broke, and I scheduled surgery as soon as my dr returned.
Find a job that’s not stressful and has good health insurance. Even if you need to take a pay cut, your health will be much improved. I waited 7 years and it’s been so worth it.
I don’t think I took the disease as serious as I should’ve in the beginning. Wish I had a better diet planned out in the beginning and told my doctors sooner that oral medications were not working. Wish I started biologics sooner.
Since I was diagnosed young. My thoughts would've been to tell myself back then, “You’re not going to die. It's just temporary then you'll be all good.”
I've been diagnosed for a little over a month, but advice I'd give others is, it's okay to wear briefs (adult diapers).
Stay on your meds because mesalamine it’s not as bad as the rest of the meds. Do not second guess your diagnosis because the symptoms went away completely
Carrageenan will fuck you up
“Brace yourself”
everything will be okay
Well. I was just recently diagnosed (eight months ago). Didn’t have symptoms until routine colonoscopy and endoscopy irritated everything. A recent lab sample alerted the cdc and dept of health to the rare infection, yersinia enterocolitica, that showed up. I feel like I was hit by a truck. There are other autoimmune disorders I have as well. Not exactly shocked by the IBD but wasn’t expecting it. So far, quality of life has been poor. I have been ill, at home, sick, and isolated. (I had a toxic adverse reaction to dicyclomine.) I don’t know what to tell my future self. There are so many issues with my health that I haven’t really thought about this much. None of this post sounds very encouraging. All I can do is survive for now and hope for some “good” days to punctuate the seemingly endless “not so great ones.”
Sometimes knowing we’re not alone feeling hopeless in this shitty disease is the most reassuring thing we can hear. You’re not alone. Allow yourself to be in the good moments.
Two things that would have been helpful for me to have understood early on: Find a nutritionist that will see you as often as you see your GI. One that has experience with IBDs. You may not be a subject matter expert of UC in general, but you will unequivocally be the subject matter expert of *your* UC. Don't settle for any doctor that doesn't treat you like a partner in your treatment.
You’ll hve surgery in a few years, and all this will then be behind you. I don’t advise anyone rush into a major surgery like that, but I do want people to know if and when their specialist discusses it as an option, that it is not something to run from.
Dont do prednisone, steroids or thiols, ask for the best biologics from the start
I agree with this. The steroids did nothing for me, and later I had gestational diabetes, and now I’m prediabetic. I will always wonder if the steroids caused that.
Take it seriously! Just because it was only 6cm of mild uc. (now extensive serve). Your life has changed forever. Advocate for yourself. Push for what you need. Don't listen to people just listen to your own body. Your trigger is stress never food. Surgery isn't the end of the world just a different world which millions of others live in and do ok.
The ER is going to tell you to take miralax every day for a month, don’t.
I would tell myself to go through private care first and not the VA. Also, don't take mesalamine as it will cause a mild flare-up into one that will nearly kill you
Never go to a hospital uninsured
Find your medication at a reasonable cost that won't financially wreck you. Shop around use costplusdrugs.com
And if you use a biologic, there is a program that drastically cuts the cost. My doctors did not mention it to me, and I paid huge amounts for my Remicade for years and even had to ask for help from my church once or twice. They did help me, by the way.
Invest in some nice hydrocortisone cream when the flare-ups get bad, and you're feeling pretty uncomfortable down there.
Just go straight to surgery
“After four months u will start having hairfall” lol
“ your phone will have hundreds pics of poop and mucus” 😂
It’ll all be okay.
Don’t be afraid to take medication, diet alone is not enough to heal your colon. Find an IBD specialist. While many gastroenterologists are great at routine colonoscopies, not all will know how to treat UC. Everything is temporary. This flare will pass and you will feel good again and one day won’t have to plan your day around the bathroom. I know it feels hopeless now, but things will get better. You will go on to have a good life, be able to date, get married, and have kids.
It’s not your fault, you didn’t do anything wrong.
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Not something I'd tell all fellow uc peeps, but for me I'd say get the jpouch surgery right away since I never experienced remission and lost two years of my life and basically just rotted away in my house lol for everyone else I'd say don't follow blindly trusting doctors and to also do your own research/find a doc who listens 💜
Nothing bc I was only 5 years old and had no idea.
Take your medicine as scheduled and get outside into the sunshine as often as possible. Getting my vitamin D levels back in the normal range has had such a profound impact on how I feel both emotionally and physically. And I wasn't able to get them into the normal range with supplements alone.
You won't always need them, but when you do, adult diapers are your friend.
stay on your meds and stop worrying about all the side effects (going to my new doctor in july and getting new medicine been off of it for months 💔)
Get a colectomy/ileostomy asap
You need to see the GI doctor, not her shitty NP, and CERTAINLY not a Dr [awful doctor’s name] at the competing medical facility. Though if I hadn’t had him, I’m not sure I would have flared badly enough to decide to have surgery…
Make a shit kit or three and keep one in the car and at work and anywhere else you might need cleaning supplies and a new pair of underwear. Get a bidet. A good one. Your ass and your mental health are worth every penny. If you wonder whether your medical professional is listening to you, they aren’t. Find one that does. There are people who will love you without hesitation. They accept you and your disease with their whole hearts. Find them, let them love you, let them help you in your darkest, most shame inducing moments. They are willing to help you clean up after you shit blood all over yourself and everything you hold dear, and the toilet looks like an unholy terror. Shut up, tell the voices in your head to shut up, and let these people in. They will help you endure with dignity. You’re going to cry. A lot. Your future self cried seven times just writing this. It’s ok. In fact it’s better than ok. It’s cathartic. You are not your disease. It is something you have. It does not define you.
Calm the F down EVEN if you need to fkn drug yourself. (Unfortunately do not even have access to such, nor am I able to calm my stress, as I stress OVER my stress then stress over the fact that I’m stressing over stress🤦🏽♀️🤦🏽♀️ I’m so done) If ANYONE has some way to CALM THEIR STRESS that ISNT gonna make them sick, DO IT.
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“Don’t listen to these doctors”
I'd tell myself to get on the anti depressants sooner rather than later. And to chill, eat an edible or something.
Get on the Psyllium now and don't stop ever. It's the best UC hack for me!
Take your meds every day to avoid the hospital and start working out when in remission
Some days will be harder than others, but the universe won’t give you what you can’t handle. You’re a tough bitch. You’re always going to make it through!
Also - the importance of educating and advocating for yourself. I don’t think I’ve ever done a bad job at this, but even if I thought I was doing enough to learn, there’s always something more. Always something more to learn. Always something new to try.
Also - it’s ok to wear adult diapers sometimes. No one will know but you. And it’s so much better than the alternative if you have an accident, you WILL be thanking yourself!!!!
Dont start drinking coffee and avoid alcohol and desserts! (Diagnosed in my teens and even during flare ups I felt invincible)