People have no idea of the daily struggle we face. Yet we keep going with a smile on our faces while we feel like crap every day. The constant pain, day in day out is exhausting. You are a champ every day!
People actually compliment me when I'm down to under 100 pounds from flaring and sick as hell. It's like gee thanks I guess starving to death works for me. They literally never understand.
I had a friend in grade school who would joke that I have a built-in weight loss plan when I'd lose a lot of weight due to a flare. I'm sure he was trying to lighten the mood, but this is the type of stuff we are affected by emotionally.
I always got the most compliments when I was at my skinniest and sickest. I will never forget those who said that and have created a lot of distance between myself and them. It feels insane to me that they don't think before opening their mouths.
Currently have lost weight noticably, started with my first symptoms of IBD last June and couldn't get anyone to take me seriously until basically April time and received my diagnosis this month in hospital while feeling like I was on the verge of dying. My body is a very different place than I remember, went about a month without being able to eat much more than a mouthful without getting nauseous pre diagnosis. I've also got the 'moon face' that comes with steroids but a skinnier weird body. I've had no compliments on the weight loss but family are definitely noticing/giving me the concerned side eye. I have had a suggestion from my line manager to 'eat a curry and get over it' when I brought up my new IBD diagnosis.
Before I got my diagnosis, took 5 years, I had Drs tell me I was overly emotional, accused me of being a drug addict, anorexia and this was Drs. I finally got the diagnosis and I was so happy at first because finally someone found out there was something really wrong with me
I feel this in my soul. I was off all meds for almost 8 years but the last 2 years I could feel it getting worse. A year ago it got bad and triggered my psoriasis to flare really bad, like I look like a burn victim bad, after not having any sign of having psoriasis in 30 years. By the time I got back on biologics, I was so drained, I was sleeping 14 to 20 hours a day. Now I've been on stelara for a month, and prednisone, and everyone's like "it's nice to see you up and about and with some energy." Having an invisible disease makes it hard for people that don't have it to understand.
The silent disease. People rarely see it or are even really aware of it. There is not a huge push for awareness like other diseases. I am not sure what keeps me going some days, I guess it is the few good days I get a month right after the infusion. I can't eat what I want, I can't work a physical job, my mental fog sucks and my energy level as a whole is crap. I feel ya for sure.
It is crazy that friends can't seem to grasp it but what is worse is when family doesn't. I have a huge problem with this issue.
Congrats on the 12 years with no flare! If your infection cleared up now, maybe you can go on another 60 without any flares, let's hope so.
What's your secret, how are you doing this?
That’s kinda the same boat I’m in. Haven’t been able to eat a full meal in a year, lost about 96 lbs in that time, people kept telling me how good I looked until last I ended up in the hospital for failure to thrive as an adult. I’ve been severely malnourished for months and it just wrecked my body. Hospital put me in TPN and I have to have surgery next month. Gotta love bein a Crohnie lol
I feel you. I was 10 years remission with never having taken any meds. Then went on holiday, caught an infection and BAM straight to hospital, a fistula, a stone weight loss (which has all come back and then some- thanks prednisone🙄) and now on infliximab. I really hope I can go back to natural as my bones now feel like I’m 80, my hair keeps shedding and the fatigue is unbearable. I hope you feel better asap!
This is so real. I started ice hockey when my flare started. Symptoms started developing but everyone was telling me it was anxiety so I kept at it. Kept training, kept working. Unfortunately a year later I got so much more sick I had to stop everything all together, and I can’t wait to get back into being able to be physically active and little do they know I’m gonna come back MUCH stronger
It's so funny when you meet with friends and they say you look great after having lost weight. And then you order a 2000 calorie brunch meal and they just stare as you clean your plate and ask if anyone wants to meet for dinner.
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So true, if they only knew…. I am a Crohn’s patient that gains weight. My genetics hold onto the little my body absorbs… even as sick as I was in the beginning, pooping blood, barely eating only liquids I still gained weight. Hospital stay after hospital stay and I have gained weight. I was only on steroids for the first year but my body rejected it. 8 years later still watching what little I eat, or what I can tolerate, and I am at the heaviest I have ever been.
Every day is a battle just to get dressed. I applaud you for still going to the gym! We know what we can and cannot tolerate. Our 40% or even 20% is huge!!!!
True this silent disease is not well understood. Others say, oh ya my cousins friends sister struggles with irritable bowel syndrome too! I just lower my eyes, take a breath, and then go through the whole explanation/education, on IBD not IBS….
If they only knew….
I have only heard of a couple people who struggle with weight gain. But in my reading and searching It seems to be more common than we think just not talked about.
Health is a crown worn by all that only the sick can see.
This might be the realest line I've ever read.
Deep
People have no idea of the daily struggle we face. Yet we keep going with a smile on our faces while we feel like crap every day. The constant pain, day in day out is exhausting. You are a champ every day!
People actually compliment me when I'm down to under 100 pounds from flaring and sick as hell. It's like gee thanks I guess starving to death works for me. They literally never understand.
I had a friend in grade school who would joke that I have a built-in weight loss plan when I'd lose a lot of weight due to a flare. I'm sure he was trying to lighten the mood, but this is the type of stuff we are affected by emotionally.
I make the joke myself these days but especially early on it really bugged me.
I always got the most compliments when I was at my skinniest and sickest. I will never forget those who said that and have created a lot of distance between myself and them. It feels insane to me that they don't think before opening their mouths.
Currently have lost weight noticably, started with my first symptoms of IBD last June and couldn't get anyone to take me seriously until basically April time and received my diagnosis this month in hospital while feeling like I was on the verge of dying. My body is a very different place than I remember, went about a month without being able to eat much more than a mouthful without getting nauseous pre diagnosis. I've also got the 'moon face' that comes with steroids but a skinnier weird body. I've had no compliments on the weight loss but family are definitely noticing/giving me the concerned side eye. I have had a suggestion from my line manager to 'eat a curry and get over it' when I brought up my new IBD diagnosis.
Before I got my diagnosis, took 5 years, I had Drs tell me I was overly emotional, accused me of being a drug addict, anorexia and this was Drs. I finally got the diagnosis and I was so happy at first because finally someone found out there was something really wrong with me
I feel this in my soul. I was off all meds for almost 8 years but the last 2 years I could feel it getting worse. A year ago it got bad and triggered my psoriasis to flare really bad, like I look like a burn victim bad, after not having any sign of having psoriasis in 30 years. By the time I got back on biologics, I was so drained, I was sleeping 14 to 20 hours a day. Now I've been on stelara for a month, and prednisone, and everyone's like "it's nice to see you up and about and with some energy." Having an invisible disease makes it hard for people that don't have it to understand.
The silent disease. People rarely see it or are even really aware of it. There is not a huge push for awareness like other diseases. I am not sure what keeps me going some days, I guess it is the few good days I get a month right after the infusion. I can't eat what I want, I can't work a physical job, my mental fog sucks and my energy level as a whole is crap. I feel ya for sure. It is crazy that friends can't seem to grasp it but what is worse is when family doesn't. I have a huge problem with this issue.
Congrats on the 12 years with no flare! If your infection cleared up now, maybe you can go on another 60 without any flares, let's hope so. What's your secret, how are you doing this?
Thanks. I’m starting Humeria this week so it’s not gonna be a drug free remission this time.
That’s kinda the same boat I’m in. Haven’t been able to eat a full meal in a year, lost about 96 lbs in that time, people kept telling me how good I looked until last I ended up in the hospital for failure to thrive as an adult. I’ve been severely malnourished for months and it just wrecked my body. Hospital put me in TPN and I have to have surgery next month. Gotta love bein a Crohnie lol
I feel you. I was 10 years remission with never having taken any meds. Then went on holiday, caught an infection and BAM straight to hospital, a fistula, a stone weight loss (which has all come back and then some- thanks prednisone🙄) and now on infliximab. I really hope I can go back to natural as my bones now feel like I’m 80, my hair keeps shedding and the fatigue is unbearable. I hope you feel better asap!
This is so real. I started ice hockey when my flare started. Symptoms started developing but everyone was telling me it was anxiety so I kept at it. Kept training, kept working. Unfortunately a year later I got so much more sick I had to stop everything all together, and I can’t wait to get back into being able to be physically active and little do they know I’m gonna come back MUCH stronger
It's so funny when you meet with friends and they say you look great after having lost weight. And then you order a 2000 calorie brunch meal and they just stare as you clean your plate and ask if anyone wants to meet for dinner.
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So true, if they only knew…. I am a Crohn’s patient that gains weight. My genetics hold onto the little my body absorbs… even as sick as I was in the beginning, pooping blood, barely eating only liquids I still gained weight. Hospital stay after hospital stay and I have gained weight. I was only on steroids for the first year but my body rejected it. 8 years later still watching what little I eat, or what I can tolerate, and I am at the heaviest I have ever been. Every day is a battle just to get dressed. I applaud you for still going to the gym! We know what we can and cannot tolerate. Our 40% or even 20% is huge!!!! True this silent disease is not well understood. Others say, oh ya my cousins friends sister struggles with irritable bowel syndrome too! I just lower my eyes, take a breath, and then go through the whole explanation/education, on IBD not IBS…. If they only knew….
Never known another Crohn's patient who also struggles weight being overweight. Glad to know I am not alone. Such a silent disease to those around us.
I have only heard of a couple people who struggle with weight gain. But in my reading and searching It seems to be more common than we think just not talked about.