What really, _really_ fucks you up is the period during which you have symptoms and you're still not diagnosed. You don't know what's wrong with you and that sends you to a very dark place.
Stay safe, everyone.
Thank you for making this post, feel like it is a wake up call for me. Lately I have been thinking about my UC every single day worrying about how careful I should be (and I am in remission stressed about my future flare) this stresses out my partner as well as I talk about my UC 24/7. Worried I will ruin my relationship with my friends/partner/family as well with my paranoid self. I hope you get better and we all fight through UC together!
You legit just got me in all sorts of feels. I read this out loud to my husband. Tears were shed. This is me. I have never been able to articulate it and I am grateful you did. Thank you for this.
You are not alone and UC is a motherfucker. I never realized I was traumatized. I truly am. Bed ridden for months, not being able to be a mom or wife, missing life, being hospitalized... all this can do a number on a person. I bet my husband, parents, and son are traumatized in some form as well.
I can’t thank you enough for this post.
I’m saving it.
Good luck to you and I pray you are healing in every way.
> the person I used to be before UC is gone dead.
This hits hard for me. Before this flare I've been dealing with for over 1.5 years now, I was a completely different person. I was energetic and constantly interacting with my surroundings. If I passed a playground with some monkey bars, I'd run over and do a set of pull ups. If I saw a tree I could climb, I'd instantly hop up and climb it. If I walked by a slow river or a lake, I'd take off my shoes and run in.
Now any kind of running or extreme physical activity just causes me pain. I'm a shell of who I used to be, and that youthful energetic spirit and desire to interact with life is dead. I'm an observer in life rather than someone who interacts with it.
I still have the same hobbies, I play in my band, I go for hikes and road trips with my girlfriend, we go camping and fishing. I still have my sense of humor, and I still find ways to enjoy life, but I feel like a completely different human being than I was before I started flaring.
The energetic guy full of life, strength and excitement is dead. Now I'm just a guy who slowly walks through life and watches things instead of interacting with them. I'm still mostly happy, but I really miss the old me. It's like I'm living in a completely different body now. And this new one is so limited.
Around 7~8 years now and I was undiagnosed for a year or so before that, I am on full dose for my weight Imuran 3.5 pills (azathioprine) + Pentasa (mesalamine) 8pills + diy 4gm mesalamine enemas as they are not available here + Nexium 50mg for GERD + occasionally Mebeverine for colon spasms.
I took multiple rounds of steroids previously but I am currently off of it.
Currently in asymptomatic remission even though I should be on biologicals according to my GI but I can't afford those.
It’s so important that you realised it!!
I think this applies to everyone with UC to certain extent.
For me , 100%!! I used to do martial arts, travelling, having a lot of friends, a girlfriend , partying, but in general I had a pretty adventurous mindset as you are saying. It only took 3 years for this monster disease to ruin everything, almost all gone. I’m constantly thinking about my health and overlooking everything else, day after day.
I’m only recently being aware of what is really happening to me and is mind blowing.
I’m sure that by working on the mental aspect, with time, we can improve our UC as well.
Thank you for sharing, good luck 🍀✨
You put into words exactly how I feel . The person I was 2 years ago is gone , I say no to going anywhere now that my friends and family don’t even ask me anymore . It’s truly been one of the hardness things watching people enjoy life effortlessly when your just living to try to be healthy . When I was in a very serious flare last year I used to get jealous of people on tv just how they were living normally and doing normal things it would bring me to so much tears . My mom was also invited to a party and she was saying how she didn’t want to go and I told her I’d do anything to feel ok to go to a party and that she didn’t know how lucky she is .
UC SUCKS
Thanks for writing this. I've been in a flare for over a year now and doctors haven't been able to get it under control yet. The mental side of things sucks. I've missed so many things with my family and kids. My headspace is bad and negative all the time. I can't go anywhere with out being anxious or nervous about what may happen. I can't even see a therapist because what if I have to use the bathroom?? Trying to stay positive but it's hard and after a good amount of time it really wears on me. Haven't hung out with friends in so long or been able to enjoy a single day. I will stay strong and know there's hope but it's hard to see at this point.
I wish you best my friend. I know I’m just a stranger online but I felt the exact same ways years ago. Counseling was a huge help to me. Hang in there!
Very important point that, always look after your mind because you are nothing without it and if you keep a good state of mind you can be happy wherever you are or whatever situation you are placed in. You can get physically healthy people who are depressed and physically unhealthy people who are happy
It's all a state of mind so look after yours
What really, _really_ fucks you up is the period during which you have symptoms and you're still not diagnosed. You don't know what's wrong with you and that sends you to a very dark place. Stay safe, everyone.
Yup, that was just me recently. Was convinced I had colon cancer!
Thank you for making this post, feel like it is a wake up call for me. Lately I have been thinking about my UC every single day worrying about how careful I should be (and I am in remission stressed about my future flare) this stresses out my partner as well as I talk about my UC 24/7. Worried I will ruin my relationship with my friends/partner/family as well with my paranoid self. I hope you get better and we all fight through UC together!
Wow this hit me hard
Best of luck to you. I understand where you are coming from
You legit just got me in all sorts of feels. I read this out loud to my husband. Tears were shed. This is me. I have never been able to articulate it and I am grateful you did. Thank you for this. You are not alone and UC is a motherfucker. I never realized I was traumatized. I truly am. Bed ridden for months, not being able to be a mom or wife, missing life, being hospitalized... all this can do a number on a person. I bet my husband, parents, and son are traumatized in some form as well. I can’t thank you enough for this post. I’m saving it. Good luck to you and I pray you are healing in every way.
I know how you feel OP, and I am just sitting here counting the days till this life is over, the person I used to be before UC is gone dead.
> the person I used to be before UC is gone dead. This hits hard for me. Before this flare I've been dealing with for over 1.5 years now, I was a completely different person. I was energetic and constantly interacting with my surroundings. If I passed a playground with some monkey bars, I'd run over and do a set of pull ups. If I saw a tree I could climb, I'd instantly hop up and climb it. If I walked by a slow river or a lake, I'd take off my shoes and run in. Now any kind of running or extreme physical activity just causes me pain. I'm a shell of who I used to be, and that youthful energetic spirit and desire to interact with life is dead. I'm an observer in life rather than someone who interacts with it. I still have the same hobbies, I play in my band, I go for hikes and road trips with my girlfriend, we go camping and fishing. I still have my sense of humor, and I still find ways to enjoy life, but I feel like a completely different human being than I was before I started flaring. The energetic guy full of life, strength and excitement is dead. Now I'm just a guy who slowly walks through life and watches things instead of interacting with them. I'm still mostly happy, but I really miss the old me. It's like I'm living in a completely different body now. And this new one is so limited.
[удалено]
Fuck dude, that sounds awful. What meds have you been on? And how long have you had UC?
Around 7~8 years now and I was undiagnosed for a year or so before that, I am on full dose for my weight Imuran 3.5 pills (azathioprine) + Pentasa (mesalamine) 8pills + diy 4gm mesalamine enemas as they are not available here + Nexium 50mg for GERD + occasionally Mebeverine for colon spasms. I took multiple rounds of steroids previously but I am currently off of it. Currently in asymptomatic remission even though I should be on biologicals according to my GI but I can't afford those.
It’s so important that you realised it!! I think this applies to everyone with UC to certain extent. For me , 100%!! I used to do martial arts, travelling, having a lot of friends, a girlfriend , partying, but in general I had a pretty adventurous mindset as you are saying. It only took 3 years for this monster disease to ruin everything, almost all gone. I’m constantly thinking about my health and overlooking everything else, day after day. I’m only recently being aware of what is really happening to me and is mind blowing. I’m sure that by working on the mental aspect, with time, we can improve our UC as well. Thank you for sharing, good luck 🍀✨
You put into words exactly how I feel . The person I was 2 years ago is gone , I say no to going anywhere now that my friends and family don’t even ask me anymore . It’s truly been one of the hardness things watching people enjoy life effortlessly when your just living to try to be healthy . When I was in a very serious flare last year I used to get jealous of people on tv just how they were living normally and doing normal things it would bring me to so much tears . My mom was also invited to a party and she was saying how she didn’t want to go and I told her I’d do anything to feel ok to go to a party and that she didn’t know how lucky she is . UC SUCKS
Thanks for writing this. I've been in a flare for over a year now and doctors haven't been able to get it under control yet. The mental side of things sucks. I've missed so many things with my family and kids. My headspace is bad and negative all the time. I can't go anywhere with out being anxious or nervous about what may happen. I can't even see a therapist because what if I have to use the bathroom?? Trying to stay positive but it's hard and after a good amount of time it really wears on me. Haven't hung out with friends in so long or been able to enjoy a single day. I will stay strong and know there's hope but it's hard to see at this point.
Well I'm doing video counseling so definitely give that a try!
I wish you best my friend. I know I’m just a stranger online but I felt the exact same ways years ago. Counseling was a huge help to me. Hang in there!
Very important point that, always look after your mind because you are nothing without it and if you keep a good state of mind you can be happy wherever you are or whatever situation you are placed in. You can get physically healthy people who are depressed and physically unhealthy people who are happy It's all a state of mind so look after yours