Life Expectancy

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Will Larson
Regular Member


Date Joined Jun 2012
Total Posts : 106
   Posted 9/20/2012 12:50 PM (GMT -6)   
Curious to see what the modern prognosis for CD is, if anyone has that info handy. I read in the 50s it was a 30-60% killer during major flares but only 3% today. Has anyone ever asked their GI what our expectancy is? I'm a bit miffed as I was diagnose young,
20, and had surgery 5 years ago. 25 now. Just afraid to think I might be at mid life already.

Datawraith
Regular Member


Date Joined Aug 2011
Total Posts : 263
   Posted 9/20/2012 1:06 PM (GMT -6)   
I wouldn't think that way at all, I've had this disease for 39 years, had surgery 16 years ago. Our life expectancy with Crohn's is no different than the normal population.
If you're thinking of the risk of colon cancer, though it is slightly higher than the general population (3-5 percent on average), long as you're under the care of your GI, getting the regular tests and check ups, I wouldn't worry about that either.
Think of it as being at 1/4. yeah

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18015
   Posted 9/20/2012 1:10 PM (GMT -6)   
Trust me Will...we are very likely to live a long and miserable life with our disease...I've had it for 21 yrs now with no full remission and it's been in my colon the entire 21 yrs constantly and still no colon cancer or any other life threatening issues....yup, just a long life of misery LOL!
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Will Larson
Regular Member


Date Joined Jun 2012
Total Posts : 106
   Posted 9/20/2012 1:22 PM (GMT -6)   
I was worried about cancer for a bit but klonopin and nicecupoftea beat that out of me a month back. Reason I was interested was that odd study suggesting median death was 58 if diagnosed before 29. Ive had my valve removed between large and small combined with low dose imuran has put me in remission for six years. Only symptom is the D...stupid iliatic valve...

Nice to know ill live a long miserable life :)
Some mornings I wake up and just feel like a Greek tragedy.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18015
   Posted 9/20/2012 1:34 PM (GMT -6)   
LOL...sorry I didn't mean to make it sound so horrible (although it is really) but hey, many live very full and happy lives with disease (so I've heard) I'm just not one of them and that's why my perspective on the issue is what it is.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Datawraith
Regular Member


Date Joined Aug 2011
Total Posts : 263
   Posted 9/20/2012 1:35 PM (GMT -6)   
lol Will & pb4, at least we're all in it together. There's one thing about life that goes for everyone, we're not getting out alive. wink

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 2867
   Posted 9/20/2012 2:42 PM (GMT -6)   
I work in the insurance industry so I have been trying to find a morbidity & mortality table and can't seem to get my hands on one.  The last I knew was that average age you had was low compared to what I saw.  I am 22 years post diagnosis and don't expect to go away soon!  Unfortunately, it seems life insurance programs still see us as a higher risk.  They ar usually using the most conservative and outdated tables for thier rates so I don't count them as fact.
 
Will let you know if I get an actual table....but I still won't necessarily use it as a guide.

biofaith
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/20/2012 6:55 PM (GMT -6)   
Hi i have had Crohns since i was 17 and i am 51 now. I battled this disease all these years i have had flare ups and the meds i was put on helped periodically. From sulfur to steriods to flagyl to pentasa. I am now on Cimzia injections 2 every month i also have COPD, amxiety amd recntly diagnosed with arthiritis in spine, knees, elbows. I have never been told tp tale foloc acid or other supplements. I have only noticed i get fevers after taking cimzia. And very fatigued. I also have an ulcer in ilieum
I had H Pylori too
Im scared i will need surgery. Im glad i signed up so i can read thT this disease is treatable and you cam live a long happy life. If anyone can help with what supplemts one should take while on cimzia i would sure bring it up at my next visit to dr. My family dr says he knows nothing about cimzia.
Thanks!!

gilsonal
Regular Member


Date Joined Feb 2010
Total Posts : 39
   Posted 9/21/2012 1:00 AM (GMT -6)   
The medication they had back then wasn't nearly as good as what we had now. Even then, my grandmother and aunt both took all those sulfa drugs, which according to them were miserable, but my grandma made it to her eighties and my aunt is doing well in her sixties. I think if you're proactive in taking care of your health its a pretty manageable illness (even though it certainly doesn't feel that way some days!)

Habs, I'd be interested to see the table too. Sounds interesting.

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 262
   Posted 9/21/2012 3:43 PM (GMT -6)   
The bowells are not critic organs... but they make you miserable :).

You can die of a perforation (infection/sepsis) or a hemorragy (bleed to death). But I'm not very creative.

But I think most people die of meds or surgery consequences. I just talked with a friend who lost her mother (Rheum. Arthtritis) to a emboly after a orthpedical surgery (had many) after osteoporosis after too much and long term pred and here you go...

You see that Cancer is NOT one of these cases, but it scares some people. Fear is not often rational, but is real all the same.

Hope I'm not giving anybody nightmares....
Male, 37 (lovely family of wife and two daughters)
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, etc.
Blockage (popcorn!!) - First Surgery 2001 (no ressection)
Severe bleedind(2003)/Stricture and ressection in Dec/2008
Blockage due to adhesions - Third surgery in feb/2011
Now off Remicade, off humira, but ON pred
Off gluten diet on check.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 503
   Posted 9/22/2012 6:51 PM (GMT -6)   
Hi,
 
I was diagnosed approx 32 years ago at age 18.  At that time the doctors told my parents the life span with crohns was 48 years of age.  I only found that out last year, I am now 50.  There are alot of new meds out there today that have really made alot of progress.  Also as far as bowel cancer goes, I hope that by having a colonoscopy every year they would find it promptly.  I plan on being around for a long time yet!
 
Julia
 

Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 9/23/2012 12:48 PM (GMT -6)   
My Dad had colon cancer. The thought of it does scare me to death but not as much as it scared him. He eventually committed suicide when I was 11 because he was sure it was back. There was none found during an autopsy. So, now if I do happen to test positive for blood in the stool I begin to sweat it until I am scoped.
I agree with the others here though, my doc's told me when I was diagnosed it is a terminal illness but a treatable one... you can live with it.
Dx'd 1983 Crohn's Disease, COPD 2000, Psoriasis 2002, Fibromyalgia 2005 along with Chronic Inflammatory Disease 2005.
4 resections 83, 87, 90 and 2005.
Nuerontin, Elavil, Advair, Pro-air inhaler, Tizanidine, Xanax, Dialaudid, Humira, Sinemet. I am a walking pharmacy it seems when I list it all.

Will Larson
Regular Member


Date Joined Jun 2012
Total Posts : 106
   Posted 9/24/2012 9:35 AM (GMT -6)   
I'm not sure terminal is the right answer. More like chronic.
Some mornings I wake up and just feel like a Greek tragedy.

biofaith
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/24/2012 10:46 AM (GMT -6)   
Yes i know this feeling!! Today is a bad day for me. I have been to bathroom already more times than i can count on both hands. Ugh!! Im week. I have COPD as well and having a hard time with breathing today. I do not sleep well anymore. Maybe 4 hours a night. Husband tells me i stop breathing and he wakes me up just to make sure... This has been vety hard on my family too. Just grateful i have them.

Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 9/24/2012 10:59 AM (GMT -6)   
Terminal as in no cure... you will have it till the day you die, not die of it.

Will Larson
Regular Member


Date Joined Jun 2012
Total Posts : 106
   Posted 9/24/2012 11:12 AM (GMT -6)   
Gotcha Lynn. Was looking at it from another angle.

COPD. That's a bummer. Luckily it looks like Chrons is linked from COPD not the other way around. Looks like you got unlucky :(
Some mornings I wake up and just feel like a Greek tragedy.

Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 9/24/2012 11:26 AM (GMT -6)   
I thought the same thing when they told me. First question was will I live long enough to deliver my son.
Dx'd 1983 Crohn's Disease, COPD 2000, Psoriasis 2002, Fibromyalgia 2005 along with Chronic Inflammatory Disease 2005.
4 resections 83, 87, 90 and 2005.
Nuerontin, Elavil, Advair, Pro-air inhaler, Tizanidine, Xanax, Dialaudid, Humira, Sinemet. I am a walking pharmacy it seems when I list it all.

biofaith
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/24/2012 11:29 AM (GMT -6)   
Well im glad i spoke to Gastro dr he tells me that i SHOULD NOT get the flu shots as i normally do every year cause i have COPD but because im on Cimzia injrctions of course it breaks down immune sysyem and i would most likely get the flu if i get the vaccine. Glad i called dr office this morning

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18015
   Posted 9/24/2012 11:53 AM (GMT -6)   
Yes, our condition is chronic meaning on going...terminal means you'll actually die from it in a less than average life expectancy. But it definitely feels terminal...I swear everyday one way or another this disease is trying to kill me LOL!
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Will Larson
Regular Member


Date Joined Jun 2012
Total Posts : 106
   Posted 9/24/2012 11:58 AM (GMT -6)   
To be cometely fair. I believe after looking our life expectancy is one year fewer than average.
Some mornings I wake up and just feel like a Greek tragedy.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18015
   Posted 9/24/2012 12:11 PM (GMT -6)   
It's not enough to make much of any difference though...and certainly not worth worrying over by any means...our times will come when they're meant to, illness or not.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Question Everything
Regular Member


Date Joined Aug 2012
Total Posts : 366
   Posted 9/25/2012 11:59 AM (GMT -6)   
Will,
Get off the life expectancy gig. That can be a mental self fulfilling exercise. yeah, Crohns is a pain, but getting your head wrapped around the negative sure is not going to help. My dad had kidney, colon and myeloma for history. I have Crohns, its not an ideal situation. But over 39 years ago I had a nasty brain tumor removed. What I read back then was life expectancy was about 2 years. My Dr. at the time said this to my parents. it would be a life time friendship for us either I or he would die first. I was told not to do many many things. Last week I tried to contact him to let him know that I was still around and brag about my kids. long story short. He passed five years ago, per his wife. My only viable remark was I was one of his successes. I so far have beat the odds. http://www.healingwell.com/community/posticons/icon9.gif

My point being. You never know, could have, should have, would have Take life by the horns, kick it in the butt and control it, not it control you. If It doesn't kill you, it will make you stronger. Hey we are not 100%. Who is?

I do admire others here, you are super men and super women.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18015
   Posted 9/25/2012 12:21 PM (GMT -6)   
Good advice from Question Everything.....truth is, it's important to just live your life, rather than let the fear of death consume you.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Will Larson
Regular Member


Date Joined Jun 2012
Total Posts : 106
   Posted 9/25/2012 12:28 PM (GMT -6)   
I wasn't doing the woe is me I'm dying speech. I was simply fact finding but if ibd everyone's responses great and informative. We shall all live to our old age and die there of something probably not all that interesting. I think I forget most of you have 20 year or so on me diagnosis wise.
Some mornings I wake up and just feel like a Greek tragedy.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 5955
   Posted 9/25/2012 3:59 PM (GMT -6)   
You are a worry wart, aren't you? >_>

I don't know about the past, but nowadays Crohn's very rarely kills people - and if it does, it's usually not the Crohn's itself, but a complication, such as a surgery going wrong.

With the number of flare-ups I've had in the past couple of years, I do kinda feel like what PB said: that the disease (and the meds!) is trying to kill me.

But hey, my sunny, beaming face is still here :p
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