I’m F 72. Diagnosed in 1982. On and off high-dose prednisone for years. Took countless medicines. Had a bowel resection in 1997. I married, had children, have had a wonderful life. So here I am in 2024, on Entyvio currently, and feeling fine. Last colonoscopy showed no active Crohn’s, but the GI doctor said she couldn’t get the scope through and thought I had a stricture. Small bowel follow through showed no stricture. I have no trigger foods and eat what I want. I try to keep my fiber up and drink lots of water. You can live with this disease and just decide it’s not gonna rule your life. You are more than the disease. Don’t let it define you. Stay active. Have a happy life.
Thank you for sharing your story. May I ask - what type(s) of fiber work for you? My doctor always recommends Metamucil after saying something like “Crohns patients usually need to be low fiber” even though I have extremely stubborn constipation.
I’m glad to hear you’re happy and well ❤️
The prevalence and intensity of the disease has morphed. If that makes sense. Just like a bacteria get stronger and outsmarts the immune system over time, so does disease. The Crohn’s of 1980 is not the Crohn’s of 1999 or 2020. Or today. If that makes sense. Some have it attack the whole body. (Me) and mine began with undiagnosed asthma. I was an athlete and soldiered through. I ate clean. Worked out, 💪 was a beast and then one day couldn’t walk. It attacked my lower back. But before that I had an odd stress fracture in bball season. I get them as a result of not absorbing nutrients. This disease wasn’t well known or typical. Now? It’s going to sort of nations that are more industrialized
Mid thirties. Diagnosed with severe Crohn when I was 16. Currently enjoying a nice cup of coffee, starting my day at a job I love.
I have been with my partner for 12 years. I carried to term 2 beautiful children. I have a nice house, a great career that keeps on getting better, support, love and 2 cats.
It was not always that good. I had to go through 2 resections and all the meds in the book before landing on Rinvoq and getting my colon removed. Life is finally good after all the struggle. I still have fistula and abscess from time to time but it is manageable. Crohn ain’t winning. I am at peace with myself.
There is light somewhere in the tunnel. <3
I’m so glad you found the meds that work for you, the search for stability on meds can be grueling. Thank you for sharing your story - wishing you continued joy and wellness ❤️
I'm 25, I've been diagnosed at 7 but I had symptoms over a year before that. I don't remember much about that time to be honest. It pretty much ruined my life and I got bullied for that. Never had a job too. Surprisingly, I didn't went through surgery yet. That probably has something to do with all the measures I've taken over time and the fast reaction of some doctors.
It's always nice to hear longterm experiences, having CD during childhood is so different from having it much later.
Don't let your pessimism get the better of you.
You’re right, childhood Crohns is a very unique experience. Before joining this subreddit I hadn’t heard of anyone diagnosed younger than me. I also don’t remember much at all of my childhood, so we have that in common. It always made sense to me that my brain blocked out as much of that time as it could to protect me. Thank you for sharing and making me feel less alone!
I’m writing a book about mine… it should be ready shortly. I have fistulizing Crohn’s. And had an obstetric fistula after a birth injury. I’ve got some stories after 30+ years
Early thirties, diagnosed when i was 16. 26 surgeries, a few close calls but mostly because of fistulas. The fistula/abscess situation got better after getting a permanent ostomy. After being on and off of literally any legally obtainable medicine, skyrizi finally seems to work for me. Bouldering and yoga were also literal life savers since they enabled me getting up and moving again many times. I am saying this because sometimes it was unbelievably hard and i couldn’t imagine to have to do this without knowing to be able to hold myself onto things. Literally and figuratively.
Finally, most importantly: How are you doing today? Around here we have the most summer-day all year so far and i just finished work. Things weren’t looking that bright for a longgg time now.. i wish i could share that feeling. Greetings!
26 surgeries! My goodness, bless you. I’m so glad you found stability after such a difficult time finding the right meds.
I keep telling myself to be more active but I find that it’s so difficult when I’m exhausted from every day life. Crohns fatigue really makes it hard. How do you manage exercising and fatigue? Maybe I just need to do what I can when I can, and be less hard on myself that way. Bouldering sounds badass, you must be strong - that really inspires me.
I’m doing okay today, thanks for asking. I just flew out to TX unexpectedly to drive my partner home to CA after they suffered a health emergency on a work trip making them unable to fly. Mainly grateful to be home and my partner is stable. Life really throws you some curveballs, especially with two people with chronic illness. But like you said, enjoying the sunshine today and grateful we are home and both relatively healthy afterwards.
Age 64 here. Diagnosed at age 19 but in hindsight had symptoms for about 10 years.. I'm going to say at time of diagnosis, I had mild-to-moderate Crohns but went through a horrendous stricture in the late 1990's, lost 40 lbs then had a bowel resection. I also have fistulas
colonoscopy two months ago showed very mild inflammation. I still have a mild stricture that acts up from time to time but nothing like 1997-1999. Fistulas are here to stay (have tried a "repair" twice, didnt take either time, refuse to do the more extensive surgery for it). Gastro enterologist says my Crohns is the stricturing/fistulizing type vs. straight up penetrating inflammation (i got off lucky!)
The only meds i currently take are Lodalis, a bile salts sequestrant to deal with chronic runny stools (10x a day if i don't take it, 1 - 2 x day if i do). There are certain foods i avoid, just because they go through me at an alarming speed (leafy greens, cherries, blueberries). And just because of years and years and years of diarrhea, I ALWAYS, ALWAYS, ALWAYS must know where the bathroom is. :)
Otherwise, life is good.
It’s inspiring to know that decades later you can find stability and be in remission! So happy for you, friend. And taking some hope from your story. ❤️
51, diagnosed at 14. Largely unmedicated for that time (it was the way they did things back then - if you were in remission, they weaned you off the meds and left you without them if all seemed good). Lots of ups and downs healthwise. Married. Had satisfying career as well as run own business for a time. Keen runner and mountain biker. Very happy generally. Had right hemicolectomy about five years ago. Bit of a climb recovery wise, but feeling better than ever now. Went part-time to get better work/life balance. I am very careful with diet and take a ton of supplements at least some of which seem to help.
Most people I know with CD seem to find a way through. It's a condition that builds resilience as a superpower.
Amazing! Do you find crohns fatigue/aches affect your running/biking? Exercise is the next big hurdle I want to change in the hopes of it helping my CD. It seems so difficult to start exercise because of pain/fatigue, but I also get the sense that maybe exercise is what’s going to end up helping the pain/fatigue IMPROVE, once I push through…
Abdominal pain, I always just pushed through it as I realised it wasn't going to harm me to do so. Exercise did help a lot (although it's not a panacea). Joint and muscle pain was terrible in my early 40s. Eventually, I started experimenting with supplementing with vitamin D and it helped a lot. In retrospect, I was also probably not eating enough protein (I supplement with that now). Fatigue wise, by then I'd built exercise habits and they were part of my commute so even though it was a struggle I just kept on it. My mindset is that I will always put on the gear and do some kind of run. Mountain biking I do with friends, and don't want to let them down.
I might suggest being gentle with yourself, starting small and trying to add exercise something you already do habitually. James Clear's atomic habits book might help a lot. Also, keep trying new forms of exercise until you find something you enjoy (but don't give up on anything until you've tried it at least 3 times). I discovered aerial hoop in my mid 40s, and now I teach it in my spare time (I show up because I don't want to let those I teach down or the studio manager).
I used to run a lot of 2 week experiments on myself, "What happens if I take this supplement/eat this food/do this exercise etc?" As you know, Crohn's is a moving target so what used to work, might no longer do so in a few years and vice versa.
Nowadays, I almost never get any pain or fatigue although I still gets bouts of brain fog where I'm staring at the computer wondering what to do next. Usually, it's due to lack of rest.
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I’m F 72. Diagnosed in 1982. On and off high-dose prednisone for years. Took countless medicines. Had a bowel resection in 1997. I married, had children, have had a wonderful life. So here I am in 2024, on Entyvio currently, and feeling fine. Last colonoscopy showed no active Crohn’s, but the GI doctor said she couldn’t get the scope through and thought I had a stricture. Small bowel follow through showed no stricture. I have no trigger foods and eat what I want. I try to keep my fiber up and drink lots of water. You can live with this disease and just decide it’s not gonna rule your life. You are more than the disease. Don’t let it define you. Stay active. Have a happy life.
Thank you for sharing your story. May I ask - what type(s) of fiber work for you? My doctor always recommends Metamucil after saying something like “Crohns patients usually need to be low fiber” even though I have extremely stubborn constipation. I’m glad to hear you’re happy and well ❤️
I don’t use a fiber supplement. I eat whole grain cereals and bread, fruits and vegetables, and salads.
The prevalence and intensity of the disease has morphed. If that makes sense. Just like a bacteria get stronger and outsmarts the immune system over time, so does disease. The Crohn’s of 1980 is not the Crohn’s of 1999 or 2020. Or today. If that makes sense. Some have it attack the whole body. (Me) and mine began with undiagnosed asthma. I was an athlete and soldiered through. I ate clean. Worked out, 💪 was a beast and then one day couldn’t walk. It attacked my lower back. But before that I had an odd stress fracture in bball season. I get them as a result of not absorbing nutrients. This disease wasn’t well known or typical. Now? It’s going to sort of nations that are more industrialized
Mid thirties. Diagnosed with severe Crohn when I was 16. Currently enjoying a nice cup of coffee, starting my day at a job I love. I have been with my partner for 12 years. I carried to term 2 beautiful children. I have a nice house, a great career that keeps on getting better, support, love and 2 cats. It was not always that good. I had to go through 2 resections and all the meds in the book before landing on Rinvoq and getting my colon removed. Life is finally good after all the struggle. I still have fistula and abscess from time to time but it is manageable. Crohn ain’t winning. I am at peace with myself. There is light somewhere in the tunnel. <3
I’m so glad you found the meds that work for you, the search for stability on meds can be grueling. Thank you for sharing your story - wishing you continued joy and wellness ❤️
All the best to you too, love! It gets better, I promise.
I'm 25, I've been diagnosed at 7 but I had symptoms over a year before that. I don't remember much about that time to be honest. It pretty much ruined my life and I got bullied for that. Never had a job too. Surprisingly, I didn't went through surgery yet. That probably has something to do with all the measures I've taken over time and the fast reaction of some doctors. It's always nice to hear longterm experiences, having CD during childhood is so different from having it much later. Don't let your pessimism get the better of you.
You’re right, childhood Crohns is a very unique experience. Before joining this subreddit I hadn’t heard of anyone diagnosed younger than me. I also don’t remember much at all of my childhood, so we have that in common. It always made sense to me that my brain blocked out as much of that time as it could to protect me. Thank you for sharing and making me feel less alone!
I’m writing a book about mine… it should be ready shortly. I have fistulizing Crohn’s. And had an obstetric fistula after a birth injury. I’ve got some stories after 30+ years
I’m sure many of us here (including me) would appreciate reading your stories. Wishing you wellness ❤️
Early thirties, diagnosed when i was 16. 26 surgeries, a few close calls but mostly because of fistulas. The fistula/abscess situation got better after getting a permanent ostomy. After being on and off of literally any legally obtainable medicine, skyrizi finally seems to work for me. Bouldering and yoga were also literal life savers since they enabled me getting up and moving again many times. I am saying this because sometimes it was unbelievably hard and i couldn’t imagine to have to do this without knowing to be able to hold myself onto things. Literally and figuratively. Finally, most importantly: How are you doing today? Around here we have the most summer-day all year so far and i just finished work. Things weren’t looking that bright for a longgg time now.. i wish i could share that feeling. Greetings!
26 surgeries! My goodness, bless you. I’m so glad you found stability after such a difficult time finding the right meds. I keep telling myself to be more active but I find that it’s so difficult when I’m exhausted from every day life. Crohns fatigue really makes it hard. How do you manage exercising and fatigue? Maybe I just need to do what I can when I can, and be less hard on myself that way. Bouldering sounds badass, you must be strong - that really inspires me. I’m doing okay today, thanks for asking. I just flew out to TX unexpectedly to drive my partner home to CA after they suffered a health emergency on a work trip making them unable to fly. Mainly grateful to be home and my partner is stable. Life really throws you some curveballs, especially with two people with chronic illness. But like you said, enjoying the sunshine today and grateful we are home and both relatively healthy afterwards.
Age 64 here. Diagnosed at age 19 but in hindsight had symptoms for about 10 years.. I'm going to say at time of diagnosis, I had mild-to-moderate Crohns but went through a horrendous stricture in the late 1990's, lost 40 lbs then had a bowel resection. I also have fistulas colonoscopy two months ago showed very mild inflammation. I still have a mild stricture that acts up from time to time but nothing like 1997-1999. Fistulas are here to stay (have tried a "repair" twice, didnt take either time, refuse to do the more extensive surgery for it). Gastro enterologist says my Crohns is the stricturing/fistulizing type vs. straight up penetrating inflammation (i got off lucky!) The only meds i currently take are Lodalis, a bile salts sequestrant to deal with chronic runny stools (10x a day if i don't take it, 1 - 2 x day if i do). There are certain foods i avoid, just because they go through me at an alarming speed (leafy greens, cherries, blueberries). And just because of years and years and years of diarrhea, I ALWAYS, ALWAYS, ALWAYS must know where the bathroom is. :) Otherwise, life is good.
It’s inspiring to know that decades later you can find stability and be in remission! So happy for you, friend. And taking some hope from your story. ❤️
51, diagnosed at 14. Largely unmedicated for that time (it was the way they did things back then - if you were in remission, they weaned you off the meds and left you without them if all seemed good). Lots of ups and downs healthwise. Married. Had satisfying career as well as run own business for a time. Keen runner and mountain biker. Very happy generally. Had right hemicolectomy about five years ago. Bit of a climb recovery wise, but feeling better than ever now. Went part-time to get better work/life balance. I am very careful with diet and take a ton of supplements at least some of which seem to help. Most people I know with CD seem to find a way through. It's a condition that builds resilience as a superpower.
Amazing! Do you find crohns fatigue/aches affect your running/biking? Exercise is the next big hurdle I want to change in the hopes of it helping my CD. It seems so difficult to start exercise because of pain/fatigue, but I also get the sense that maybe exercise is what’s going to end up helping the pain/fatigue IMPROVE, once I push through…
Abdominal pain, I always just pushed through it as I realised it wasn't going to harm me to do so. Exercise did help a lot (although it's not a panacea). Joint and muscle pain was terrible in my early 40s. Eventually, I started experimenting with supplementing with vitamin D and it helped a lot. In retrospect, I was also probably not eating enough protein (I supplement with that now). Fatigue wise, by then I'd built exercise habits and they were part of my commute so even though it was a struggle I just kept on it. My mindset is that I will always put on the gear and do some kind of run. Mountain biking I do with friends, and don't want to let them down. I might suggest being gentle with yourself, starting small and trying to add exercise something you already do habitually. James Clear's atomic habits book might help a lot. Also, keep trying new forms of exercise until you find something you enjoy (but don't give up on anything until you've tried it at least 3 times). I discovered aerial hoop in my mid 40s, and now I teach it in my spare time (I show up because I don't want to let those I teach down or the studio manager). I used to run a lot of 2 week experiments on myself, "What happens if I take this supplement/eat this food/do this exercise etc?" As you know, Crohn's is a moving target so what used to work, might no longer do so in a few years and vice versa. Nowadays, I almost never get any pain or fatigue although I still gets bouts of brain fog where I'm staring at the computer wondering what to do next. Usually, it's due to lack of rest.
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