I was 12

[Marissa]

My name is marissa and I have had crohns disease for 8 years. I was diagnosed when I was 12 years old and I am now 20. My first flare up or attack if you will was on Halloween night while I was trick or treating with my mother. My step father was following us around on a bicycle trying to start an argument with her, while she was just trying to have fun with me. She got very worried when I started heaving on the side of the road complaining about how bad my stomach hurt and how much discomfort I was in. My mom found out that crohns disease and ulcers were hereditary on my father's side and decided to take me to get checked. When the doctor told me at 12 years old that I was positive for crohns I asked him what did I do wrong? I ended up finding out that I always carried the trait it was just waiting on a stressed situation to activate it, and that ended up being my step dad. Ever since that day my life style has changed. My weight had fluctuated and I was on and off of med because of the way they altered my mood. Anyways it has been hard and I'm not going to lie and say that I'm not scared of my lifespan, because I am. And that's mainly why I joined, to hear stories of people who are much older than me still living a pretty decent life with this disease. Comments are welcome.

 

[smt]

My name is marissa and I have had crohns disease for 8 years. I was diagnosed when I was 12 years old and I am now 20. My first flare up or attack if you will was on Halloween night while I was trick or treating with my mother. My step father was following us around on a bicycle trying to start an argument with her, while she was just trying to have fun with me. She got very worried when I started heaving on the side of the road complaining about how bad my stomach hurt and how much discomfort I was in. My mom found out that crohns disease and ulcers were hereditary on my father's side and decided to take me to get checked. When the doctor told me at 12 years old that I was positive for crohns I asked him what did I do wrong? I ended up finding out that I always carried the trait it was just waiting on a stressed situation to activate it, and that ended up being my step dad. Ever since that day my life style has changed. My weight had fluctuated and I was on and off of med because of the way they altered my mood. Anyways it has been hard and I'm not going to lie and say that I'm not scared of my lifespan, because I am. And that's mainly why I joined, to hear stories of people who are much older than me still living a pretty decent life with this disease. Comments are welcome.

Please provide a detailed list of your symptoms and the drugs you are on. This would enable people here to comment.

Regarding your apprehension regarding lifespan, as far as I know there is a statistically significant probability of a decreased lifespan. The important thing to understand is that if you can work to your potential/near potential you would be able to achieve significantly before your death. So, in my opinion, one's aim should be to be able to lead an active and productive life. In place of those 80 years, if one lives 60-65 years and achieves more, whose productivity in terms of time has been more?

Wishing you a long active life.

Regards

 

[my little penguin]

Welcome
Crohns does not decrease your life span
DS was dx at age 7 and now is almost 12
If you saw him you wouldn't know he was sick
He swims conpetively
Plays in the orchestra
And overall acts like any other 11 year old kid

He does take meds
He is currently on humira /mtx but they are working well
Finding the right meds is key


Tagging
Dusty
Tesscom
Maya142
Clash
Jmrogers
Crohnsinct

 

[smt]

Welcome
Crohns does not decrease your life span
DS was dx at age 7 and now is almost 12
If you saw him you wouldn't know he was sick
He swims conpetively
Plays in the orchestra
And overall acts like any other 11 year old kid

He does take meds
He is currently on humira /mtx but they are working well
Finding the right meds is key


Tagging
Dusty
Tesscom
Maya142
Clash
Jmrogers
Crohnsinct

Thanks for your post. I found this article:

http://www.ncbi.nlm.nih.gov/pubmed/22398058

The background says: "An increased mortality has been reported in patients with Crohn's disease (CD), ..., compared to the population in general." The results in the study, however, indicate otherwise.

I am confused. I would happily stand to be corrected. I request inputs from others.

In case I am wrong, I regret my error.

Regards and best wishes

 

[my little penguin]

Life table analysis shows that the life expectancy for men diagnosed with Crohn's disease in this cohort is 77.3 years and 79.0 years for women. Overall life expectancy has not statistically significantly changed over the duration of the study and is not statistically significantly different from the life expectancy of the general population (population median over the study period is 71 for males and 77 for females).[24]

From
http://www.medscape.com/viewarticle/550715_3

 

[smt]

This is a recent paper which does a meta-analysis:

Canavan, C., Abrams, K. R., & Mayberry, J. F. (2007). Meta‐analysis: mortality in Crohn’s disease. Alimentary pharmacology & therapeutics, 25(8), 861-870.

Conclusion: Assessing evidence from original studies and conducting a meta-analysis shows age-adjusted mortality risk from Crohn’s disease is over 50% greater than the general population. Whilst mortality has improved since the condition was first recognized, further evaluation of the patients studied in the cohorts included here is necessary to assess more recent changes in clinical practice.

 

[Jmrogers4]

I think with better medicines which treat the disease and not just the symptoms that you would likely have a decreased mortality rate.
For example when my husband was diagnosed over 20 years ago the medication of choice was Pentasa which we now know does very little to control most crohn's. While on Pentasa he had several surgeries to drain abscesses, had a fistula and was put on prednisone each time he had a flare which was often. He was put on Imuran almost 14 years ago and has had no issues in fact he had a scope on Friday and it was completely clean. He is now 48 years old and I hate to think of him passing anytime for anything if it was to happen now I don't believe it would have anything to do with his Crohn's.
My son was diagnosed nearly 6 years ago, he is now 16 and doing fantastic. His prognosis was not great and he had a 90% chance of surgery within the first 5 years according to his doctor. With the right medicine (and it took us a couple of years to find it) he is also doing fantastic and has so far never had a hospital stay nor a surgery. I figure the longer we can keep him in remission the better the odds of no complications.
So I feel that under or uncontrolled crohn's can affect your lifespan but with the right regimen you can live a full life irregardless of having Crohn's

 

[Maya142]

I would talk to your doctor about your fears. I agree with Jmrogers4, if you're on the right combination of meds and your disease is under control, then you shouldn't worry too much about dying. Complications of untreated or refractory Crohn's can cause death and those are the numbers reflected in that study that was posted.

My daughter is on an Anti-TNF and an immunomodulator and her Crohn's is under control. If you find the right meds, you should be able to live a long, happy and relatively normal life!

Are you currently on any medications?

 

[smt]

Dear all,

I sincerely thank all of you for your valuable comments. I would really like to believe that even with Crohn's lifespan is not significantly (in the statistical sense) reduced, and individuals can have a decent quality of life including the ability to work hard. Towards that, your comments have given me hope. I am sure that Crohn's medication would improve with time, and that is what we all look forward to.

Sincere regards