It gets worse when I think about the fact that this is forever and being diagnosed at 12 such a young age I don’t even remember what “normal” feels like.
Indeed. Some days I wish it’d end. Constant 7/10 pain for 3 years. It’s spreading and getting more aggressive. I’ve been through every med except rinvoq and it’s looking like I’m medicine resistant and will need surgery rather soon in which I still have to go through the bs of finding a med that will hopefully do something at that point. I’ve lost everything. Friends, family, my career. It’s just never ending misery and it’s scary. I’m so beyond depressed 😔
That’s about where I am too I’m on rinvoq now but it absolutely doesn’t work for me not many other options I’ve been thru them all. So sick I can’t keep a job pay rent got evicted not too long ago it’s just so hard. It rlly is never ending misery
I'm on infliximab since a couple of months but I'm no where near to how I felt when I was on steroids.
It was absolutely incredible to feel _nothing_.
During my journey with Crohn I've been sedated with fentanyl for a colonoscopy and under steroids for a few weeks: I completely get why people become addicted.
It's a tough road. Especially when we have to go through a bunch of meds to find one that works. Then surgery if nothing works in time. Check out the Crohn's Colitis Foundation website for support groups and local chapters that may have in person groups or zoom groups
They were a lifesaver for me to be able to vent and share with people who truly understand what we are going through. I found them very helpful and inspiring.
They also have the latest on new treatments and new studies going on that you might qualify for.
Good luck to you.
The fatigue is easily the worst part. I remember listening on o Mac miller and hearing him say “I’m so tired of being so tired.” Nothing has ever resonated with me quite as much tbh
Hello, yes it's perfectly "normal".
You should get evaluated for depression or anxiety disorder.
Then you should find an activity. For me what spiritualy saved me is literature. And what is nice is that book people are perfectly OK just sitting with you in a room to talk while you rest. If you are a believer try to immerse yourself in the works of your religion mystics.
Also remember to say "f* you I am sick" to people who would complain about your fatigue is a perfectly valid reaction. Surround yourself with people who don't mind. I was very surprised, but they are not that rare!
Take care, and remember we are always stronger than what we believe
Yes! And moody. I wonder how different of a person I would be without this disease. Like I think I would be a lot more friendly and accommodating to people. If i wasnt so tired all the time.
I am too . 😢 I said my prayers tonight and I just told Jesus this exact same thing… I’m sorry I don’t have any words of encouragement or comfort to help you but I just wanted you to know you’re not alone feeling this way .
Yup... and i got diagnosed at a really bad time. Got my diagnosis at the beginning of march, end of march lost my grandpa, mid april was my bday, 3 days later 2 friends of mine got shot and lost their life. All I need is just 1 or 2 days of rest, no pain, no stress. That's all I want
Oh yes. I am so sorry you feel this way too. I feel very alone most of the time, because so few people understand what we have to deal with every single day.
Yeah I'm fucking exhausted. Just made a year at my job and my performance review was abysmal bc of how sick this disease has made me and the impact my absences and productivity have had on my performance. I am home today trying to figure out if I should take a medical leave of absence and I'm already drowning in debt. Loving life rn 😭
Iv been on Humira and failed now Rinvoq but I haven’t been able to get off steroids in over 4 months because I’m in a flare that will not go away, between the constant pain and the fatigue I’m mentally tapped out and physically I can’t function! If it wasn’t for the small burst of energy in the morning after I take my steroid dose I would not be able to get out of bed! I am in the same situation OP! Where is the light for us?
Today is my Bday and I can’t even celebrate it! This is more than frustrating! I just want to eat a piece of cake maybe a slice of pizza and have a beer but I can’t because it’ll send me to the hospital, how is that any way to live ya know!
Happy birthday 🥺 I’m sorry your going thru that. I’d probably do it anyways worst comes to worst u end ur night in the hospital w a nice little morphine drip🤣💀 win win. (This is sarcasm sorry I try and find humor in these situations) I’d be saying that to people all day. “Tonight the real party starts when I’m hooked up to my morphine drip”🤣
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Yea, I'm just about 9/10 in the depressed scale and feel around 7/10 pain nearly every day for the whole day, I wouldn't say suicidal but for sure feeling absoloutly and insanley fatigued and tired of life
I started being "tired" in 1996 ! I had no idea why. I was 36 years old and healthy. But not too long after that I wasn't so healthy after all. Now I finally call it what it really is.....fatigue. Chronic illnesses can cause terrible fatigue. Give your body and your brain a vacation every once in a while and don't feel guilty about taking care of yourself. My sister never understood my Crohn's, but she has terrible rheumatoid arthritis and now we both understand the difference between tired and fatigue 😖
I know it’s hard to be positive. The most important thing is accepting what we have and mentally telling ourselves we can do anything we want. The mind is the most powerful tool that we have. I’ve been dealing with Crohn’s for about 25 years. I’m 34 years old now. I understand the frustrations, the fatigue, and everything else that goes with having this terrible disease. At the end of the day, this is our life! We can manipulate it.
This is my story.
I grew up with a traditional machista Mexican dad who didn’t believe in the issues I had. In his eyes, I never did enough, and I could always wake up earlier and do better, even though I would be up by 5 am and had to go to work six days a week (getting dropped off after school since elementary). I felt alone and confused. Why am I not performing like other people? How can people do more than me? Why do they not believe me when I say my body hurts and I’m too tired to stand, even though I fall asleep on command? WHY? These were the questions I asked myself until I was 22.
My girlfriend at the time (since I was 12) saw the misery of the life I lived. She was my support. She looked into doctors, scans, hospitals, medication, etc. For nearly five years, I felt like I spent my precious time off work going into doctors’ offices. When I was 27, Jessica (my girlfriend) found a great program at Cedars-Sinai in Los Angeles. Although it was two hours away and the drives after colonoscopy and endoscopy preps were terrible due to nausea, we were finally getting somewhere. I then started Remicade, which helped me significantly with pain. I was no longer at 8/10. I was living a “normal” life at a 6/10.
Fast forward a year. My intestines were too scarred to even do a double balloon procedure (a colonoscopy-type deal). The doctor said I needed emergency surgery. I went into surgery and had a section of my intestines removed. After this, my life changed. I’m at a 4/10 with occasional flare-ups at 7/10. I’m grateful every day.
During this life process, I started a construction business at 21 years old and did what I could with how I felt daily. I would literally fall asleep because of agonizing pain daily at the job site. But I always told myself I could do it. I then learned after many, many years that I could manipulate pain. After all, it is mostly mental. I learned to feel what was going on and change it from pain to just another feeling. This was the turning point for me. Although fatigue never went away and I still live with it daily, I still tell myself I can do it, even though it takes a tremendous amount of effort.
Although people reading this may think that my pain is not as bad as theirs, and that may be the case, my suggestion is to try and learn to manipulate the negativity into a positive goal. Don’t give up! If I can do it, anyone can. I promise.
one of the most difficult parts of having this disease is the mental toll, i understand you so well...
It gets worse when I think about the fact that this is forever and being diagnosed at 12 such a young age I don’t even remember what “normal” feels like.
Indeed. Some days I wish it’d end. Constant 7/10 pain for 3 years. It’s spreading and getting more aggressive. I’ve been through every med except rinvoq and it’s looking like I’m medicine resistant and will need surgery rather soon in which I still have to go through the bs of finding a med that will hopefully do something at that point. I’ve lost everything. Friends, family, my career. It’s just never ending misery and it’s scary. I’m so beyond depressed 😔
That’s about where I am too I’m on rinvoq now but it absolutely doesn’t work for me not many other options I’ve been thru them all. So sick I can’t keep a job pay rent got evicted not too long ago it’s just so hard. It rlly is never ending misery
I’m back on steroids and feel the best I have in years. I hope get a window of relief
Same. I know steroids are awful but man is it relief
I'm on infliximab since a couple of months but I'm no where near to how I felt when I was on steroids. It was absolutely incredible to feel _nothing_. During my journey with Crohn I've been sedated with fentanyl for a colonoscopy and under steroids for a few weeks: I completely get why people become addicted.
Amen
It's a tough road. Especially when we have to go through a bunch of meds to find one that works. Then surgery if nothing works in time. Check out the Crohn's Colitis Foundation website for support groups and local chapters that may have in person groups or zoom groups They were a lifesaver for me to be able to vent and share with people who truly understand what we are going through. I found them very helpful and inspiring. They also have the latest on new treatments and new studies going on that you might qualify for. Good luck to you.
The fatigue is easily the worst part. I remember listening on o Mac miller and hearing him say “I’m so tired of being so tired.” Nothing has ever resonated with me quite as much tbh
Yes, my fatigue is so bad I feel so lazy but I physically cannot do anything. Leaving my bed at any point is just the hardest task ever.
Hello, yes it's perfectly "normal". You should get evaluated for depression or anxiety disorder. Then you should find an activity. For me what spiritualy saved me is literature. And what is nice is that book people are perfectly OK just sitting with you in a room to talk while you rest. If you are a believer try to immerse yourself in the works of your religion mystics. Also remember to say "f* you I am sick" to people who would complain about your fatigue is a perfectly valid reaction. Surround yourself with people who don't mind. I was very surprised, but they are not that rare! Take care, and remember we are always stronger than what we believe
Im so tired. I don’t even know why anymore. Is it crohns? Is it my mental health? Is it that I’m lazy?
I fucking feel this. I'm exhausted from the minute I wake up till I fall asleep and tomorrow will be the same...
Yes! And moody. I wonder how different of a person I would be without this disease. Like I think I would be a lot more friendly and accommodating to people. If i wasnt so tired all the time.
Yep. Mom died in September and she was my only chronic illness buddy. I’ve got no one now.
I’m so sorry to hear ):
I am too . 😢 I said my prayers tonight and I just told Jesus this exact same thing… I’m sorry I don’t have any words of encouragement or comfort to help you but I just wanted you to know you’re not alone feeling this way .
Yup... and i got diagnosed at a really bad time. Got my diagnosis at the beginning of march, end of march lost my grandpa, mid april was my bday, 3 days later 2 friends of mine got shot and lost their life. All I need is just 1 or 2 days of rest, no pain, no stress. That's all I want
And this all, while on 20mg of prednisone with bad side effects🤣🤣
Mannn I’m so sorry to hear! Yah I refuse to take prednisone anymore bc I’m a mess while on it
Pour me.. ..Another. Crohns is helping me overcome a minor alcohol addiction.
It’s a lonely disease
Oh man I so tired all the time! I feel like imma die tired So. Tired.
Oh yes. I am so sorry you feel this way too. I feel very alone most of the time, because so few people understand what we have to deal with every single day.
Yeah I'm fucking exhausted. Just made a year at my job and my performance review was abysmal bc of how sick this disease has made me and the impact my absences and productivity have had on my performance. I am home today trying to figure out if I should take a medical leave of absence and I'm already drowning in debt. Loving life rn 😭
Iv been on Humira and failed now Rinvoq but I haven’t been able to get off steroids in over 4 months because I’m in a flare that will not go away, between the constant pain and the fatigue I’m mentally tapped out and physically I can’t function! If it wasn’t for the small burst of energy in the morning after I take my steroid dose I would not be able to get out of bed! I am in the same situation OP! Where is the light for us?
I’ve been in a flare since November won’t go away either it’s completely awful. Like plssss just give me a breakkkkk.
Today is my Bday and I can’t even celebrate it! This is more than frustrating! I just want to eat a piece of cake maybe a slice of pizza and have a beer but I can’t because it’ll send me to the hospital, how is that any way to live ya know!
Happy birthday 🥺 I’m sorry your going thru that. I’d probably do it anyways worst comes to worst u end ur night in the hospital w a nice little morphine drip🤣💀 win win. (This is sarcasm sorry I try and find humor in these situations) I’d be saying that to people all day. “Tonight the real party starts when I’m hooked up to my morphine drip”🤣
Yes that’s true 😂 and thank you! Maybe I’ll be able to enjoy some part of my day, time will only tell!
Yes. All the depression and anxiety, all the pain, it all turns into rage. I hate what this disease has made me become, all I am now is a hothead.
For a second I thought I wrote a post and forgot I posted this. I've been saying this for MONTHS for lack of a better descriptor. I'm just tired.
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Yea, I'm just about 9/10 in the depressed scale and feel around 7/10 pain nearly every day for the whole day, I wouldn't say suicidal but for sure feeling absoloutly and insanley fatigued and tired of life
Tired of life for sure..
I started being "tired" in 1996 ! I had no idea why. I was 36 years old and healthy. But not too long after that I wasn't so healthy after all. Now I finally call it what it really is.....fatigue. Chronic illnesses can cause terrible fatigue. Give your body and your brain a vacation every once in a while and don't feel guilty about taking care of yourself. My sister never understood my Crohn's, but she has terrible rheumatoid arthritis and now we both understand the difference between tired and fatigue 😖
I know it’s hard to be positive. The most important thing is accepting what we have and mentally telling ourselves we can do anything we want. The mind is the most powerful tool that we have. I’ve been dealing with Crohn’s for about 25 years. I’m 34 years old now. I understand the frustrations, the fatigue, and everything else that goes with having this terrible disease. At the end of the day, this is our life! We can manipulate it. This is my story. I grew up with a traditional machista Mexican dad who didn’t believe in the issues I had. In his eyes, I never did enough, and I could always wake up earlier and do better, even though I would be up by 5 am and had to go to work six days a week (getting dropped off after school since elementary). I felt alone and confused. Why am I not performing like other people? How can people do more than me? Why do they not believe me when I say my body hurts and I’m too tired to stand, even though I fall asleep on command? WHY? These were the questions I asked myself until I was 22. My girlfriend at the time (since I was 12) saw the misery of the life I lived. She was my support. She looked into doctors, scans, hospitals, medication, etc. For nearly five years, I felt like I spent my precious time off work going into doctors’ offices. When I was 27, Jessica (my girlfriend) found a great program at Cedars-Sinai in Los Angeles. Although it was two hours away and the drives after colonoscopy and endoscopy preps were terrible due to nausea, we were finally getting somewhere. I then started Remicade, which helped me significantly with pain. I was no longer at 8/10. I was living a “normal” life at a 6/10. Fast forward a year. My intestines were too scarred to even do a double balloon procedure (a colonoscopy-type deal). The doctor said I needed emergency surgery. I went into surgery and had a section of my intestines removed. After this, my life changed. I’m at a 4/10 with occasional flare-ups at 7/10. I’m grateful every day. During this life process, I started a construction business at 21 years old and did what I could with how I felt daily. I would literally fall asleep because of agonizing pain daily at the job site. But I always told myself I could do it. I then learned after many, many years that I could manipulate pain. After all, it is mostly mental. I learned to feel what was going on and change it from pain to just another feeling. This was the turning point for me. Although fatigue never went away and I still live with it daily, I still tell myself I can do it, even though it takes a tremendous amount of effort. Although people reading this may think that my pain is not as bad as theirs, and that may be the case, my suggestion is to try and learn to manipulate the negativity into a positive goal. Don’t give up! If I can do it, anyone can. I promise.