I was diagnosed with Crohn's at 17 I'm now 28 I've only had one surgery so far a fistula repaired (which I'm pretty sure I'll have to get another one fixed soon) so I've been pretty blessed so far. I've stopped googling symptoms so my outlook towards living with this disease has greatly improved!!!! But my question to u guys who have lived with this disease for a long time I'm talking 30+ can this last or am I guarenteed that this disease will eventually put me on the disabled list? That's one of my biggest fears being a man is not to be able to properly provide for my family I've heard horror story after horror story of being out of work for years after a surgery or a complication and there's just no way I could afford that being the bread winner of my house hold. I've been excperienceing a lot of abdominal discomfort for the first time in a while and fatigue and I'm conserned this may be the first big surgery or something like that. I've always keep up with my Crohn's medication wise and test etc. Is there any chane I can live a long healthy normal life with this disease or am I distaned for the disability line?
Just wondering - Is a long, healthy life with crohn's possible?
- Thread starter Jison0612
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I was diagnosed at 18 and now I'm 35. I have not had any surgeries. But, have had periods where I've been in a flare for quite awhile (about 2 years). I don't know about being guaranteed that it'll eventually put me as disabled. However, I do feel very blessed for the times when I feel good and have no symptoms of flaring.
I guess that the best advice I can give is to cross that bridge when you get there. It's not the easiest advice, even with myself. But, this is why we are here for each other during those times. Sending hugs your way.
I guess that the best advice I can give is to cross that bridge when you get there. It's not the easiest advice, even with myself. But, this is why we are here for each other during those times. Sending hugs your way.
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I don't have 'close' long term experience as my son was only diagnosed a couple of years ago, however, my aunt was diagnosed 15-20 years ago. While she had a really rough couple of years until she finally reached remission, she has been in remission (or close to it) since then. She owned her own business which, during peak seasons, had her working 10-12 hours a day. She owns a gift shop in a tourist destination so while not extremely physically demanding, it is more so than working in an office (with restocking, helping customers, etc.). Her crohns was described as being severe at diagnosis but she's yet to have one surgery. She's now retired and continues to feel good and travels regularly.
A bit more distant... sister-in-law's sister, has UC. I don't know her well enough to know details of her UC but do know she holds an executive position and is fairly successful - I don't imagine her UC has had a big negative impact on her career.
Even with the best of intentions, a flare or complications can happen so, while it's certainly not a guarantee, I think being mindful of your illness, ie healthy diet, healthy living in general, follow ups with your doctor, diligent in treatment, etc. will help in controlling your crohns. I hope that didn't sound dismissive of your worries (ie healthy diet = little crohns :ack
, but I do believe that giving your body all the help you can, does help to a degree.
Also, keep in mind, very often (not always!) members of forums are those who are having problems with their illness. While you will get great advice, support and knowledge, keep in mind that there are many other people with crohns who are doing well but who are not posting on forums.
A bit more distant... sister-in-law's sister, has UC. I don't know her well enough to know details of her UC but do know she holds an executive position and is fairly successful - I don't imagine her UC has had a big negative impact on her career.
Even with the best of intentions, a flare or complications can happen so, while it's certainly not a guarantee, I think being mindful of your illness, ie healthy diet, healthy living in general, follow ups with your doctor, diligent in treatment, etc. will help in controlling your crohns. I hope that didn't sound dismissive of your worries (ie healthy diet = little crohns :ack
, but I do believe that giving your body all the help you can, does help to a degree. Also, keep in mind, very often (not always!) members of forums are those who are having problems with their illness. While you will get great advice, support and knowledge, keep in mind that there are many other people with crohns who are doing well but who are not posting on forums.
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Treatments have gotten, and will continue to get so much better that I think any advice from someone who has lived out the last 30 years with this disease may not be relevant to a current prognosis. I have had a couple of Dr.'s tell me that they believe there will be a cure to crohn's disease in my son's lifetime. (He is 13 years old) At the very least you will see some new medications that should greatly increase the number of good and productive days you have.
((((Hugs))))
((((Hugs))))
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Thanks guys this really helped there's just so many bad stories out there it's hard to see a positive future. I've had a realitvley easy go with this disease so far other than a fistula repair on my back side nothing major it just seems all the stories u hear out there are negative and I don't feel bad all the time and hopefully never get to the point of disability or this disease altering my ability to work hard and provide for my family it's good to hear some good news thanks!!
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I was diagnosed at 25 and now 34. No surgeries and one major flare which is controlled via aza.
Balanced lifestyle and lots of support when in a flare is crucial. Too much wine, junk food and cigs, I believe gave me my first and only big flare.
Balanced lifestyle and lots of support when in a flare is crucial. Too much wine, junk food and cigs, I believe gave me my first and only big flare.
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Well, I guess I count for the long-term group here. Diagnosed at 18 and I am currently 44. I have had 6 surgeries to date, but none over the last 7 years.
The ten years after my diagnosis were the roughest for me, even though only one of my surgeries came in that time. I kept myself out of the dating scene, and allowed it to rule my life. I made a decision to make the most of my healthy times, and it carried through into my rough times as well. Since then, I had a 15 year career in banking - found out that late night shifts weren't for me. They brought on the next five surgeries.
I have gotten married, have a beautiful daughter, been to Europe and the Caribbean several times, went back to school and became a teacher and am now working in a job that I absolutely love. Only in the last three years have I started remicade, and after 20+ years of no relief, am finally into remission. I share your concerns with being able to provide - it was part of the reason that my 20s were rough for me. Don't let that fear take hold of you. We do have an increased chance of something untoward happening, but those sort of events can and do happen to others. Do your best to out it out of your mind as long as you can.
The ten years after my diagnosis were the roughest for me, even though only one of my surgeries came in that time. I kept myself out of the dating scene, and allowed it to rule my life. I made a decision to make the most of my healthy times, and it carried through into my rough times as well. Since then, I had a 15 year career in banking - found out that late night shifts weren't for me. They brought on the next five surgeries.
I have gotten married, have a beautiful daughter, been to Europe and the Caribbean several times, went back to school and became a teacher and am now working in a job that I absolutely love. Only in the last three years have I started remicade, and after 20+ years of no relief, am finally into remission. I share your concerns with being able to provide - it was part of the reason that my 20s were rough for me. Don't let that fear take hold of you. We do have an increased chance of something untoward happening, but those sort of events can and do happen to others. Do your best to out it out of your mind as long as you can.
Well fingers crossed, we'll have a cure before you're worrying about what dentures are best for you
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Absolutely. Time and dedication are really all that is needed and patience with ourselves and others.
I used to feel really depressed about my Crohn's disease. I was afraid I wouldn't be able to go out and do what I loved because I felt like I would be limited by medication and the bathroom. I just graduated high school and I realized that something needed to change or I wouldn't be able to pursue my dream to go to South Korea and become a music producer. Being scared really motivated me to not feel this way anymore and heal myself. We all just need that push because so often we get in that cycle with this disease of feeling like we can't do anything. Please believe that real health is possible. I mean I am about to get off of all my medication and I have not been this healthy in years!( I can actually go out and do things without worrying about where a bathroom is). I can't tell you how proud I am at myself but also scared because medication was all I knew for a while.
I hope we can all find some motivation to feel good and pursue our dreams because everyone deserves that freedom in their life.
I send my love and support <3
I used to feel really depressed about my Crohn's disease. I was afraid I wouldn't be able to go out and do what I loved because I felt like I would be limited by medication and the bathroom. I just graduated high school and I realized that something needed to change or I wouldn't be able to pursue my dream to go to South Korea and become a music producer. Being scared really motivated me to not feel this way anymore and heal myself. We all just need that push because so often we get in that cycle with this disease of feeling like we can't do anything. Please believe that real health is possible. I mean I am about to get off of all my medication and I have not been this healthy in years!( I can actually go out and do things without worrying about where a bathroom is). I can't tell you how proud I am at myself but also scared because medication was all I knew for a while.
I hope we can all find some motivation to feel good and pursue our dreams because everyone deserves that freedom in their life.
I send my love and support <3
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I found a huge key to my feeling better was to not sweat the small stuff. As a young adult I was very hung up on how others perceived me and would tie myself up in knots to make sure others liked me. When I finally learned that all I needed was to love myself I was able to drop all of this useless stress. In my 30's & 40's I know I'm not going to change myself to suit others. If they like me, great, if not? Too bad for them.
I have moderate to severe Crohn's and have lead a completely normal life. My father-in-law has a very mild case of Crohn's and cannot leave his house before 11:00am because he is paralyzed with fear that he may have to use a washroom. In comparing our symptoms I always thought that he had the more severe case. I honestly believe his needless worrying and the additional stresses he gives himself about his Crohn's makes his everyday life worse then mine.
Take care and try to lead as stress free a life as you can!
I have moderate to severe Crohn's and have lead a completely normal life. My father-in-law has a very mild case of Crohn's and cannot leave his house before 11:00am because he is paralyzed with fear that he may have to use a washroom. In comparing our symptoms I always thought that he had the more severe case. I honestly believe his needless worrying and the additional stresses he gives himself about his Crohn's makes his everyday life worse then mine.
Take care and try to lead as stress free a life as you can!
I work a full time job have 3 wonderful kids a great wife and terrific parents and siblings I live a totally normal life all except Crohn's and my dr's visits. I've just recently gained this paranoia of the what ifs it terrifies me now thanks a lot google!!!! It's awesome to hear ur guys stories makes me feel a ton better how do u all deal with the uncertainties of all the test u know like the possibility if a bad diagnoses always around the corner cancer,blockage,surgery, etc that's what I'm struggling with the most right now I can't afford to be side lined ever I'm the soul provider for my family and can't really afford to be off and this summer with er visits and dr's visits has been the worse so far and I contribute a lot of this to anxiety and paranoia
