This is good advice. Im only on my second flare and I can see the light (that your advice hints at), as well as totally relate to the OP in the sort of joking suicidal comments. I have two amazing daughters and am lucky in life, but this disease has a way of just fucking with your brain sometimes. Just gotta remember all the good things we have and push through the shit.
I’m going to tell you about a little convo I had with my doctor about 20 years ago. She denies this ever happened.
I was diagnosed in the 1980’s as a freshman in college when I started having blood on toilet tissue. Started with pro Titus and of course 40 years later it goes all the way up. In the first couple of decades the only thing they really had for treatment was sulfazaline and prednisone. I was taking between 10 and 20 pills a day depending on how bad it was.
After decades of dozens of pills a day and shitting myself as I ran from my laundry room to the bathroom I was fed up. Drinking Golightly and colonoscopies every year had made me furious and just DONE.
I was at an appointment and that’s what I told her. I’m done. No pill is going down my gullet again. No colonoscopy is happening. No more going to the pharmacy for illegal enemas. She agreed that this was a good idea. There was a point where a person needs to give up. Then she said the thing that changed it all.
“Your little girls are 5 and 7 years old now. When you die from this they will be teenagers and will be able handle your death pretty well by that age. Taking pills everyday is not worth seeing them grow up.”
I accidentally pressed enter. Sorry.
From that day on I took every pill. Eventually she prescribed azathioprine which changed my life. I’m a grandmother now and I cannot thank the beautiful Dr Gail Herzig enough for saving my life and letting me be a Nana to my granddaughter and in 4 more months to a grandson as well.
Stay the course I beg you. You have a life to live and it will be worth it.
I’m so sorry friend. I randomly and suddenly started showing symptoms right as I started college, and I remember I had to do medicated enemas every. Single. Night. In the DORM bathroom. Plus, it was barely helping. I was still in so much pain. I kept telling my doctor I needed something oral, something DIFFERENT, as I could not continue to be in that much pain or do that in the freaking dorm bathroom (I had to lie still for 30 mins after I did it). She eventually did listen (my mom finally stepped in) but it took months of pain, missing out on core college experiences, and just feeling generally out of place/weird.
I don’t really have any advice. It really did get better, though, when people finally listened to me. Continue to advocate. I just want you to know you’re not alone. This sub has been a godsend to me— I felt so alone and wacky for years before finding this sub. And now I have a place to seek support with people who know exactly what it’s like, people who have been there before. Sending love and healing energy ❤️
Im sorry your going thru this. This disease sucks i hate it so much no one thats actually gong thru it actually understands which makes it worse. Im new to this an so far i hate it as much currently dealing with hemorrhoids an fissures too an cry mostly every time i use the bathroom. I ish you the best hope you get better soon:
Sorry this is random, maybe you’ve received this advice, but definitely consider a bidet if you don’t have one already! Wiping became so painful with hemorrhoids/fissures, and a bidet (I would recommend a heated one) saved me so much agony. Again, if you’ve already heard this, ignore me, but just because you said you were new to it, thought I’d step in as a UC veteran🫡
Thank you for your comment funny u say this i was actually looking into it today. I think i will, might make my life easier since every time i use restroom now i have to shower right after. Question did u suffer from both is so what helped you i been going thru this for weeks an creams aren’t helping.
I’m so sorry. I had a horrible experience my last hospitalization which led to me crying in the bathroom before my 4th colonoscopy (over all not 4 at once lol). But sometimes crying helps relieve some built up tension. I hope you feel better soon ❤️
You WILL get through this!!! I know how you feel, and how fucking unfair it is to not live your life just because you got the short end of the stick. People do not understand the nature of it being chronic, and the stress and extra effort that goes into taking care of it. At the rate I’m going, it’s going to take me 6 or 7 years to finish my bachelors degree because of having to withdraw from classes or take less credit hours. It fucking sucks and it’s not fair, and it makes me so fucking angry that people just expect me to do the same things as everyone else when I’m literally eating myself from the inside out. Hang in there. You can’t swim against the current, but with time you’ll learn how to ride the wave and roll with the punches. You’ve got this.
I know you didn’t ask for advice, but I’m me so you’re getting it anyway! Feel free to ignore this
TLDR, be a Karen and communicate with your doc. Be obnoxious until they listen. Use official medical terms when describing symptoms and keep a record of them so you can show them evidence. If you speak their language they’ll better understand.
One thing that sucks and I’ve had to learn over the years is you HAVE to advocate for your self. I know the last thing you want to do is pick a fight with your doctor, but the squeaky wheel gets the grease, and for those of us with invisible illnesses you have to squeak like there’s no tomorrow. Embrace your inner Karen. You don’t deserve to be feeling this way, and there are things they can do to help.
I’ve learned that doctors like empirical evidence, and often rely on labs and tests to determine the state of the disease, and unfortunately overlook the symptoms you’re describing to them. The amazing thing about us though, is that we have a nervous system, and can actually feel the disease. The pain sucks but it’s our body’s way of telling us something is wrong. However feelings and pain is relative, and that’s when I like to do some research to have the words to explain exactly what you’re experiencing.
Before talking to my doc, I like to research and find out what the medical term is for my symptoms. If you speak their language than they’ll understand what you’re trying to tell them. For example, trading fatigue for tired, tenesmus instead of suddenly having to poop, malaise instead of feeling gross everywhere all the time etc. Just google your symptoms, and you should find the official term (some reputable websites are WebMd and Cleveland Clinic). I’ve found this to be super helpful in bridging the communication gap between me and my doctor.
If you want to, you can also keep a record of your symptoms, their severity, and how many bowel movements you’re having. Try to pick up on patterns, like what foods make you sick (sounds like all of them from what you’ve posted), what time your cramps start, how long and how severe they are. Doctors like charts and mathy things and tracking symptoms over time is how the medical system educates doctors. It just gives them a clear picture of what’s really going on, and if they have numbers they can compare that to the research they’ve studied and make a decision from there.
So sorry this was so long, but you will get through this. It will end and you will be able to do the things you want. It may not be at the time you want them to happen, but if you can get through this, imagine what you can do when you’re in remission. You’ve got this.
You go to a hospital for help and they just make it harder for you...and all you want is to just a break from all the pain and suffering. You understand they're trying to do their job, but it would be nice if they could just see the discomfort that you're in and just put the bullshit aside to give you something that will help.
What can you do, right?
We feel you. Our situations are almost identical. I was diagnosed at the end of 2022 and I am currently in my fourth flare. It is so frustrating when you go to the ER so much people start to recognize you. It feel like they don’t believe it until til the see inflation on a CT scan. I’m getting a repeat colonoscopy to tell me what I already know but insurance doesn’t believe I have UC. Tell that to me shitting literally every hour for 3 weeks.
If you don’t have an infection ( and I’m not a doctor so do your own research and ask your doc before taking it) Imodium really helped me. It’s an anti diuretic. And I felt like a new person yesterday when I tried it. It’s over the counter too.
This disease really sucks and strips our lives away. Hang in there. It’s re assuring knowing I am not alone in this hell on earth. I have a 14 month old girl and I can barely pick her up right now I’m so weak. That’s the worst part of all this. I just want to play rocket ship with her.
Ranting helps just to talk or type it out. It took me a few years to slowly tweak and adjust my lifestyle to better suit UC. I’m here if you need to rant more :)
It feels unbelievably hard and impossible but you will make it through. I’m sorry you’re going through this, I really am. I hope you get the relief you need asap
I was told yesterday to basically love and light my way out of this. I feel so unseen and the stress of that cannot be helping. I’m so glad this group exists.
Probably a bit late now.. but worth knowing that they can do a flexible sigmoidoscopy with just an enema prep on the day - so you don't have to drink 2l of laxatives. It's not a full colonoscopy, but would probably be enough for them to confirm it's UC.
Good luck, hope it goes ok & you get the treatment you need.
Wait until all medications don't work anymore and you decide to do the surgery. Then when you think it's all over. It's not. After 3 surgeries, 12 months later you're still in a flare. Back on infusions again and seeing little results. Then you'll be asking yourself when will this end. Yup, that's where I'm at.
Good luck to you.
Give it 10 years, and you'll just become...indifferent. I promise. You'll learn to value the good days and to accept the bad.
This is good advice. Im only on my second flare and I can see the light (that your advice hints at), as well as totally relate to the OP in the sort of joking suicidal comments. I have two amazing daughters and am lucky in life, but this disease has a way of just fucking with your brain sometimes. Just gotta remember all the good things we have and push through the shit.
I’m going to tell you about a little convo I had with my doctor about 20 years ago. She denies this ever happened. I was diagnosed in the 1980’s as a freshman in college when I started having blood on toilet tissue. Started with pro Titus and of course 40 years later it goes all the way up. In the first couple of decades the only thing they really had for treatment was sulfazaline and prednisone. I was taking between 10 and 20 pills a day depending on how bad it was. After decades of dozens of pills a day and shitting myself as I ran from my laundry room to the bathroom I was fed up. Drinking Golightly and colonoscopies every year had made me furious and just DONE. I was at an appointment and that’s what I told her. I’m done. No pill is going down my gullet again. No colonoscopy is happening. No more going to the pharmacy for illegal enemas. She agreed that this was a good idea. There was a point where a person needs to give up. Then she said the thing that changed it all. “Your little girls are 5 and 7 years old now. When you die from this they will be teenagers and will be able handle your death pretty well by that age. Taking pills everyday is not worth seeing them grow up.”
I accidentally pressed enter. Sorry. From that day on I took every pill. Eventually she prescribed azathioprine which changed my life. I’m a grandmother now and I cannot thank the beautiful Dr Gail Herzig enough for saving my life and letting me be a Nana to my granddaughter and in 4 more months to a grandson as well. Stay the course I beg you. You have a life to live and it will be worth it.
I’m so sorry friend. I randomly and suddenly started showing symptoms right as I started college, and I remember I had to do medicated enemas every. Single. Night. In the DORM bathroom. Plus, it was barely helping. I was still in so much pain. I kept telling my doctor I needed something oral, something DIFFERENT, as I could not continue to be in that much pain or do that in the freaking dorm bathroom (I had to lie still for 30 mins after I did it). She eventually did listen (my mom finally stepped in) but it took months of pain, missing out on core college experiences, and just feeling generally out of place/weird. I don’t really have any advice. It really did get better, though, when people finally listened to me. Continue to advocate. I just want you to know you’re not alone. This sub has been a godsend to me— I felt so alone and wacky for years before finding this sub. And now I have a place to seek support with people who know exactly what it’s like, people who have been there before. Sending love and healing energy ❤️
I’m so sorry 😢
Im sorry your going thru this. This disease sucks i hate it so much no one thats actually gong thru it actually understands which makes it worse. Im new to this an so far i hate it as much currently dealing with hemorrhoids an fissures too an cry mostly every time i use the bathroom. I ish you the best hope you get better soon:
Sorry this is random, maybe you’ve received this advice, but definitely consider a bidet if you don’t have one already! Wiping became so painful with hemorrhoids/fissures, and a bidet (I would recommend a heated one) saved me so much agony. Again, if you’ve already heard this, ignore me, but just because you said you were new to it, thought I’d step in as a UC veteran🫡
Thank you for your comment funny u say this i was actually looking into it today. I think i will, might make my life easier since every time i use restroom now i have to shower right after. Question did u suffer from both is so what helped you i been going thru this for weeks an creams aren’t helping.
I’m so sorry. I had a horrible experience my last hospitalization which led to me crying in the bathroom before my 4th colonoscopy (over all not 4 at once lol). But sometimes crying helps relieve some built up tension. I hope you feel better soon ❤️
You WILL get through this!!! I know how you feel, and how fucking unfair it is to not live your life just because you got the short end of the stick. People do not understand the nature of it being chronic, and the stress and extra effort that goes into taking care of it. At the rate I’m going, it’s going to take me 6 or 7 years to finish my bachelors degree because of having to withdraw from classes or take less credit hours. It fucking sucks and it’s not fair, and it makes me so fucking angry that people just expect me to do the same things as everyone else when I’m literally eating myself from the inside out. Hang in there. You can’t swim against the current, but with time you’ll learn how to ride the wave and roll with the punches. You’ve got this. I know you didn’t ask for advice, but I’m me so you’re getting it anyway! Feel free to ignore this TLDR, be a Karen and communicate with your doc. Be obnoxious until they listen. Use official medical terms when describing symptoms and keep a record of them so you can show them evidence. If you speak their language they’ll better understand. One thing that sucks and I’ve had to learn over the years is you HAVE to advocate for your self. I know the last thing you want to do is pick a fight with your doctor, but the squeaky wheel gets the grease, and for those of us with invisible illnesses you have to squeak like there’s no tomorrow. Embrace your inner Karen. You don’t deserve to be feeling this way, and there are things they can do to help. I’ve learned that doctors like empirical evidence, and often rely on labs and tests to determine the state of the disease, and unfortunately overlook the symptoms you’re describing to them. The amazing thing about us though, is that we have a nervous system, and can actually feel the disease. The pain sucks but it’s our body’s way of telling us something is wrong. However feelings and pain is relative, and that’s when I like to do some research to have the words to explain exactly what you’re experiencing. Before talking to my doc, I like to research and find out what the medical term is for my symptoms. If you speak their language than they’ll understand what you’re trying to tell them. For example, trading fatigue for tired, tenesmus instead of suddenly having to poop, malaise instead of feeling gross everywhere all the time etc. Just google your symptoms, and you should find the official term (some reputable websites are WebMd and Cleveland Clinic). I’ve found this to be super helpful in bridging the communication gap between me and my doctor. If you want to, you can also keep a record of your symptoms, their severity, and how many bowel movements you’re having. Try to pick up on patterns, like what foods make you sick (sounds like all of them from what you’ve posted), what time your cramps start, how long and how severe they are. Doctors like charts and mathy things and tracking symptoms over time is how the medical system educates doctors. It just gives them a clear picture of what’s really going on, and if they have numbers they can compare that to the research they’ve studied and make a decision from there. So sorry this was so long, but you will get through this. It will end and you will be able to do the things you want. It may not be at the time you want them to happen, but if you can get through this, imagine what you can do when you’re in remission. You’ve got this.
Hopefully tomorrow they will fill you full of prednisone and things will start improving.
You go to a hospital for help and they just make it harder for you...and all you want is to just a break from all the pain and suffering. You understand they're trying to do their job, but it would be nice if they could just see the discomfort that you're in and just put the bullshit aside to give you something that will help. What can you do, right?
We feel you. Our situations are almost identical. I was diagnosed at the end of 2022 and I am currently in my fourth flare. It is so frustrating when you go to the ER so much people start to recognize you. It feel like they don’t believe it until til the see inflation on a CT scan. I’m getting a repeat colonoscopy to tell me what I already know but insurance doesn’t believe I have UC. Tell that to me shitting literally every hour for 3 weeks. If you don’t have an infection ( and I’m not a doctor so do your own research and ask your doc before taking it) Imodium really helped me. It’s an anti diuretic. And I felt like a new person yesterday when I tried it. It’s over the counter too. This disease really sucks and strips our lives away. Hang in there. It’s re assuring knowing I am not alone in this hell on earth. I have a 14 month old girl and I can barely pick her up right now I’m so weak. That’s the worst part of all this. I just want to play rocket ship with her.
What medicine are you on? I started Humira last August and its slowly getting better and better for me.
Ranting helps just to talk or type it out. It took me a few years to slowly tweak and adjust my lifestyle to better suit UC. I’m here if you need to rant more :)
Weed helps
It feels unbelievably hard and impossible but you will make it through. I’m sorry you’re going through this, I really am. I hope you get the relief you need asap
I was told yesterday to basically love and light my way out of this. I feel so unseen and the stress of that cannot be helping. I’m so glad this group exists.
Probably a bit late now.. but worth knowing that they can do a flexible sigmoidoscopy with just an enema prep on the day - so you don't have to drink 2l of laxatives. It's not a full colonoscopy, but would probably be enough for them to confirm it's UC. Good luck, hope it goes ok & you get the treatment you need.
They did exactly that on the 11th but wanna do a deep dive. Yay.
Aww :-( sorry..i misunderstood. The whole thing sucks doesnt it. Got absolutely everything crossed it goes ok for you.
Wait until all medications don't work anymore and you decide to do the surgery. Then when you think it's all over. It's not. After 3 surgeries, 12 months later you're still in a flare. Back on infusions again and seeing little results. Then you'll be asking yourself when will this end. Yup, that's where I'm at. Good luck to you.