Morbid topic: Death, life expectancy, and Crohns

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 11/26/2007 7:23 PM (GMT -7)   
I haven't talked much with my GI about long term effects of this disease, and honestly haven't come across much either in my research.
 
I know most Crohnies are dx in their 20s (as was I). What about elderly people with Crohns? Do most die from complications of it? Or is it just a chronic disease that has to be treated along with other things as they age, similar to Diabetes? How long do most Crohnies live and what do they usually die from?
 
Anyone know?
 
Only one person has mentioned death to me and they told me their FIL died from complications of Crohns in their 60s. Not something I wanted to hear since I figured I'd just handle it like anyone else with chronic illness and die of natural causes or something else that's actually fatal as a very old person. But not in my 60s!!
 
Course, science is getting better in treating Crohns as time goes on.
 
Morbid, I know - I apologize.
 
Thanks for any thoughts or links you can send my way =)

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/26/2007 7:35 PM (GMT -7)   
Aimee, I sure hope this disease doesn't take the elderly. I'm 56 so I'm getting close!!! Honestly hun, I don't think our life expectancy
is much different than anyone else. Sure, there are some complications, but thank heaven, they seem few and far between.
Your right with it's just a chronic disease that we cope with. As long as we get our colons checked regularly for early signs of cancer,
I'm sure we'll be fine, but that goes for everyone, not just us crohnies.
Try and rest easy sweetie, hopefully we all die of good old age...
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6923
   Posted 11/26/2007 7:49 PM (GMT -7)   
Unfortunately chronic pain and autoimmune disease do have a tendency to degrade quaility and quanity of life, but it depends on the severity of the disease.
Forum Moderator 
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 363
   Posted 11/26/2007 8:17 PM (GMT -7)   

I have had one GI dr say my risk of cancer is increased and that is why I am taking folic acid (to protect my intestines) - I had another GI dr (who I feel is a much better qualified dr) tell me that the risk of cancer is increased but not by a crazy amount. 

I don't know if I should even look at any more side effects of 6mp since I have issues taking it to begin with but was just reading on Wikipedia (so take it with a grain of salt but still:

     "Mercaptopurine can lower the body's ability to fight off infection. Those taking mercaptopurine should get permission from a doctor in order to receive immunizations and vaccinations. It is also recommended that while on the drug one should avoid those who have recently received oral polio vaccine.

This drug is traditionally not recommended during pregnancy but this issue has been debated and current evidence indicates that pregnant women on the drug show no increase in fetal abnormalities. However, women receiving mercaptopurine during the first trimester of pregnancy have an increased incidence of abortion. Davis et al 1999 found that mercaptopurine, compared to methotrexate, was ineffective as a single-agent abortifacient; every woman in the mercaptopurine arm of the study had fetal cardiac activity at follow-up (two weeks later) and was given a suction abortion.[1]

Mercaptopurine causes changes to chromosomes in animals and humans. In mice these changes have given rise to lethal mutations. Therefore the drug has the potential to be cancer causing in humans."

http://en.wikipedia.org/wiki/Mercaptopurine

 

I am going to bump this in the 6mp thread.  Anyone who has had any experience with this, particularly the "not recommended for pregnancy" and "the drug has the potential to be cancer causing" and "changes in chromosomes". 

Awesome.


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 642
   Posted 11/26/2007 8:33 PM (GMT -7)   
If I remember correctly (it's been several months now), this was covered at the IBD medical conference I attended.  I believe they said the life expectancy for people with Crohn's is about 1 year less than the average life expectancy (ie, something like 75 years instead of 76).  Keep in mind that's an average of a lot of people.  The reason it is slightly lower for people with Crohn's is the rare occasions when somebody dies of surgical complications, Crohn's-related cancer, and things like that.  The great majority of people with Crohn's have the same life expectancy as others; but you get the rare person who dies younger because of Crohn's, and that lowers the overall average life expectancy down by about a year.
 
I think the two top Crohn's-related causes of death were actually surgery-related, and suicide, with cancer possibly behind those -- but I'm not completely sure on that one.

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 11/26/2007 9:08 PM (GMT -7)   
Good info already, guys, thanks!!!

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3926
   Posted 11/26/2007 9:11 PM (GMT -7)   
Prior to a decade ago or so, mortality from IBD ( I think that included UC as well) was about 33%. Treatment is/has improved. But this DD CAN kill, some of the complications are especially nasty.
Mostly though, it just wears down your quality of life..

Matthew

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/26/2007 10:10 PM (GMT -7)   
my maternal grandfather had crohn's in his 60s. he died when i was like 5 years old or so due to short bowel syndrome - basically they had to operate to save his life but from having so many operations before, he didnt have enough bowel left for them to operate and survive. so once i was diagnosed that was what i put my life expectancy at. now that i have completely changed things around for myself via diet, i am shooting for as close to 120 years old as i can get.

this is a chronic disease, meaning it wont directly kill. same thing with aids. it just lessens your quality of life. life is full of curve balls. dont waste your time worrying about when or if this disease may kill you. you put your life in risk so many times each day doing things you take for granted and not realizing the danger. worry about what you can control (which is almost nothing), not what you cant, and you will live a higher quality life. trust me on this. i speak from experience.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18190
   Posted 11/26/2007 10:37 PM (GMT -7)   
IBD is not a death sentence so to speak although it can really alter our lives the majority are more likely to live a long life even with having this DD...sure some people die from complications due to CD but that's to be expected and is often avoided when medical attention is sought on a regular basis...

My mom got UC at the age of 65, she's 80 now, that's 25 yrs of her living with IBD, and she has other health issues totally unrelated to IBD, she had a tripple bi-pass 3 yrs ago on valentines day (ironic ey).

IBD doesn't kill you, it just makes you wish you were dead LOL!


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Clcaj
Regular Member


Date Joined Oct 2007
Total Posts : 82
   Posted 11/27/2007 12:29 PM (GMT -7)   

Thank you, beave, for the best answer I've heard on this issue.   As I approach 50, and some days feel like I'm 110, I've been wondering the exact same thing.  I've never been able to find out anything about the life expectancy of Crohn's (other than it's not 'terminal' - just tell that to your life insurance agent and see where it gets you! haha!).    I've always wanted to meet someone in their 60's or 70's who has had Crohns since their teenage years, just to ask them how they have dealt with it, but no such luck so far...

I agree that the treatments are improving rapidly, so my personal hope is that there will be a permanent fix before I hit 60, and feel like 120!... :-)


DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 11/27/2007 1:21 PM (GMT -7)   
I agree with most here,it's chronic,but with the new meds,definately better than it was years ago with just a few meds on board. As a nurse I see people       with all kinds of chronic things,chrohns,colitis,asthma,diabetes,high blood pressure,etc...  just have to take care of yourself the best way you can.I do work on the Peds/Gyn floor,but sometimes we get "overflow" patients,and last year I remember a lady in her 60's with chrohns,and t hat was her first "bad" flare!!! Try to stay positive,although I know it's hard at times!!
 
Happy shopping everybody!!! yeah

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 11/27/2007 1:52 PM (GMT -7)   
A recent study shows the age at onset is predictive for llife span. The earlier in life you get it, the more your life expectancy is impacted. Makes sense, since crohn's is a disease of cumulative insults. That study found that the median age of death for people who were diagnosed between 18-29 was 58 years. That just means that as many people will die before this age as after. It doesn't mean the average age. And take into account that the study would have used a cohort that got the disease many, many years ago.

I just attended the funeral of the mother of one of my daughter's childhood friends. She was diagnosed with crohn's less than 5 years ago and died suddenly last week before her 60th birthday. The disease had hit her really hard, with a lot of extra-intestinal issues in addition to what was going on her gut. She developed antibodies to the Remicade and just never really got on top of the disease. I think part of her just couldn't bear living with illness. She was the foundation of her family. Lived for her husband and kids and the last time I saw her she was in a wheelchair being wheeled through a grocery store by her two adult daughters. I know she saw herself as a burden and hated it.

Does anyone else know crohn's patients who died?
Belleenstein:

30+ years living with Crohn's.


Clcaj
Regular Member


Date Joined Oct 2007
Total Posts : 82
   Posted 11/27/2007 3:18 PM (GMT -7)   
Belleenstein - Do you know the source of that recent study, or know where it is?
DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 11/27/2007 3:28 PM (GMT -7)   
belleenstein said...
A recent study shows the age at onset is predictive for llife span. The earlier in life you get it, the more your life expectancy is impacted. Makes sense, since crohn's is a disease of cumulative insults. That study found that the median age of death for people who were diagnosed between 18-29 was 58 years. That just means that as many people will die before this age as after. It doesn't mean the average age. And take into account that the study would have used a cohort that got the disease many, many years ago.

I just attended the funeral of the mother of one of my daughter's childhood friends. She was diagnosed with crohn's less than 5 years ago and died suddenly last week before her 60th birthday. The disease had hit her really hard, with a lot of extra-intestinal issues in addition to what was going on her gut. She developed antibodies to the Remicade and just never really got on top of the disease. I think part of her just couldn't bear living with illness. She was the foundation of her family. Lived for her husband and kids and the last time I saw her she was in a wheelchair being wheeled through a grocery store by her two adult daughters. I know she saw herself as a burden and hated it.

Does anyone else know crohn's patients who died?

Wow, that's depressing. The study, I mean.
I'm glad I am not the only one interested in this! I will have to visit with my GI next time I'm in. I always intend to, but we get to talking about other stuff and I forget.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18190
   Posted 11/27/2007 3:32 PM (GMT -7)   
I don't know one personally who died, but a moderator at another forum died, she had recently had a resection but apparantly they still could not get her flare under control which caused enough complications for her to pass away...she was young (in her mid 20's) and left behind a husband and 2 very young children. I think of her and her family often.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/27/2007 5:39 PM (GMT -7)   
My Mom died at the age of 63. She was diagnosed at the age of 32. It wasn't CD that killed her it was COPD, but it was a cumulative thing. She got pneumonia and refused to go to the hospital. She just was DONE. She had osteoporosis, CD and COPD and short bowel syndrome.

I was diagnosed at the age of 23. I certainly don't think that just because my Mom had 31 years after diagnosis, thats all I'm going to get. At that rate, I would only have another 11 years to go, and I want more! I do believe that attitude plays a BIG part. My mother had had enough. I refuse to give in to the this DD and I believe I always will. I also think that the advances in medicine have played a huge part in keeping my quality of life. When my Mother first was diagnosed and had her first surgeries, they just took huge sections of intestines, not realizing that later on it would play a big part in her quality of life.

All that being said, I still would rather have quality of life than quantity of life. And if I need to take drugs that may shorten my life expectancy to make today better then so be it.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 11/27/2007 6:06 PM (GMT -7)   
Cicaj:

I posted the study url at the time and will try to find it again when I get time. I think it was based on data that has been gathered on patients in the UK. It is the longest longitudinal study on Crohn's Colitis in the world I think. But remember, it doesn't reflect the rapid advancement that has occurred in both diagnostics and treatment and so might not be relevant for someone getting the disease today. I on the other hand, have had it 30 years, so it was a reality check for me.
Belleenstein:

30+ years living with Crohn's.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 11/27/2007 8:45 PM (GMT -7)   
Here's the link for the study on mortality rates and Crohn's disease:

http://www.medscape.com/viewarticle/550715?rss
Belleenstein:

30+ years living with Crohn's.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 5963
   Posted 11/27/2007 9:29 PM (GMT -7)   
well, i agree and disagree with some statements. yes i suppose we are technically more likely to die of a complication of crohn's, but if not for the disease itself would we?
now in 1987 i had an intestinal bleed that nearly killed me. then again in 1999.
also in dec 1999, i had complications from surgery that did kill me for a few minutes. i mean i was gone, the drs had to work very hard to get me back. i was in ICU for almost a month. had to almost learn to walk again. nothing would work right. i still have limitations from that episode. mainly being on TPN for 8 years next month. so when an infection or the next operation gets me? will the coroner classify it as Crohns, or some other reason. i would push my family to get the person to say crohns myself.
randynoguts 



     http://www.geocities.com/randynogutsweb/


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/27/2007 10:03 PM (GMT -7)   
A very depressing study, and it certainly won't make getting life insurance any easier.

Anyway, I knew 2 people who had CD and are no longer with us. I met them both many years ago when I was first diagnosed. My doctor thought it would help me to know other people with the disease. One committed suicide before the age of 40 (37 I think), the other died in his early 40's (not sure of the exact year, had lost touch with him for a long while) of complications from long term use of steroids (which was really the only drug they had for many years) and the last time I saw him he only had 8" of intestines left which were also diseased so even steroids didn't help him any more. Obviously he also had many, many surgeries. This was in the 80's.

I would say CD was the cause of death for both, the second is more obvious, but the first committed suicide because of all that the disease had cost her over the years. Her husband, children, home, etc. She spent as long as a year at a time in the hospital for treatment (this was before people could do TPN at home).

Yes, a very depressing study.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


rlsnights
Regular Member


Date Joined Apr 2006
Total Posts : 449
   Posted 11/27/2007 10:23 PM (GMT -7)   

Here are two recent articles on mortality in Crohn's Disease with links for you if you REALLY want to know this stuff.  Basically, the bottom line is yes, statistically your life is going to be shorter, mortality in CD is highest in the first 5 years after diagnosis, surgery is risky business, your life expectancy is shortened considerably if you were diagnosed before age 20 and prednisone, narcotics and moderate-severe CD are associated with severe infections more than remicade use. Guess that explains why no one wants to sell you life insurance.

Patricia (son, 11, CD, Humira, 6-MP, Omeprazole, Miralax, supplements)

http://www.gastro.org/user-assets/html/eDigest/2006/June/1/060106.htm#Increased

Increased Infections and Mortality with Certain Crohn's Therapies

Although mortality rates are similar between therapies for Crohn's disease, the latest Clinical Gastroenterology & Hepatology finds that prednisone is associated with increased mortality, and infliximab increases the risk of serious infection....

The team found that the mortality rates were similar for infliximab- and non-infliximab-treated patients. In multivariate logistic regression analysis, only prednisone was associated with an increased mortality risk. The team showed an increased risk for infection with infliximab use, using unadjusted analysis. However, multivariate logistic regression analysis suggested that infliximab was not an independent predictor of serious infections. Factors independently associated with serious infections included prednisone use, narcotic analgesic use and moderate-to-severe disease activity. – Newsfeed from GastroHep.com

Clinical Gastroenterology & Hepatology; 2006: 4(5): 621-30

http://www.medscape.com/viewarticle/555637

Meta-Analysis:Mortality in Crohn's Disease

The risk of dying for patients with Crohn's disease is over 50% higher than would be expected for someone in the general population of the same age and sex. This is reflected in a recent long-term study of prognosis for patients with Crohn's disease in Cardiff, which showed reduced life expectancy for all patients, especially those diagnosed before the age of 20.[29] Overall life expectancy for men diagnosed with Crohn's disease in the Cardiff cohort was 77.3 years and 79.0 years for women, those diagnosed before the age of 20 had a median age at death of 64 years. Life expectancy of the general population over the study period was 71 for males and 77 for females.[30].

There is a greatly increased mortality risk for patients who have been diagnosed less than 5 years,[11,32,33,41] the majority of whom die due to surgical complications.[33] In future this may need to be reflected in consultations with newly diagnosed patients. Patients who die later have a high incidence of gastrointestinal cancer and renal disease.[33] Mortality is also reported to be highest in patients diagnosed under 20 years old[32,33,41] and women diagnosed before the age of 50 years.[33] Smoking is associated with Crohn's disease[42] and the excess mortality seen in these studies may be partly because of this habit.[43] In a recent study in Florence[43] patients with Crohn's disease were shown to have a significantly raised SMR for gastrointestinal disease, all cancers and specifically lung cancer (4.49, 2.10 and 4.00 respectively); 70% of these patients were current or former smokers. Consequently, smoking is a confounding factor when analyzing mortality in Crohn's disease, however, a nationwide British study that adjusted for this characteristic still showed patients to have a higher SMR than the general population.[24]

Aliment Pharmacol Ther.  2007;25(8):861-870.  ©2007 Blackwell Publishing

<!-- /Article Content --><!-- /Content Body --><!-- /Main Col -->

Follow your dreams.
Son Badger (11)
dx'd Crohn's 3/06, entire small/large intestine, perianal, constipation,
6-MP, prilosec, miralax,
Asthma, allergies


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/27/2007 10:31 PM (GMT -7)   
Randy- I was thinking along the same lines as you. Was it crohns alone or an infection due to a weakened immune system from crohns meds, etc. It makes me think of when AIDS patients die of pnemonia. Sometimes they say AIDS, sometimes Pnemonia. For some reason I find it more comforting when it is from a complication rather than direct crohns. Kind of lowers the chances a bit, ya know. Like first, I'd have to get that bad... then I would have to catch that... And when surgery is concerned there has to be a distinction between it not being succesful and medical negligence causing complications and death... fun stuff. I plan to live to a very old age. There is ridiculous longevity in the females in my family. I should at least pass 90. My grandmother is 95, has no colon, and when they test her blood they can SEE the cholestoral floating in it before it heads off to the lab. And she is still looking great.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/27/2007 10:32 PM (GMT -7)   
The issue may be clouded further by national differences in life expectancy.

I asked this question of my doctors two weeks ago, and was told that, on average, Crohn's patients here (Australia) live five years less than the general population. In other words, on average we die at age 70 instead of 75. The doctor took care to note that this was only for people who didn't die of sudden complications or during surgery.

I.
Co-Moderator Crohn's Forum.


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 11/27/2007 10:49 PM (GMT -7)   
I believe life expectancy will be a bit better now than it was 20 yrs ago. Just imagine being only on pred as the hope to help you.
However, all of these medications in the end can't be good, sure they help now but they increase your chances of getting certain things.
I know for a fact Imuran increases your cancer rate (as it is a human carcinogen) but then again everything nowadays causes cancer, you can't escape that.

The way I look at it is enjoy life now, don't worry about when your going to die, because if your afraid of dying what's the point of living? ;)
Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 17.5mg (tapering), Imuran 75mg (eventually 150mg I was told), Atenolol 25mg for fast heartbeat (thanks Pred!)


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 11/29/2007 8:23 PM (GMT -7)   
FitzyK23 said...
Randy- I was thinking along the same lines as you. Was it crohns alone or an infection due to a weakened immune system from crohns meds, etc. It makes me think of when AIDS patients die of pnemonia. Sometimes they say AIDS, sometimes Pnemonia. For some reason I find it more comforting when it is from a complication rather than direct crohns. Kind of lowers the chances a bit, ya know. Like first, I'd have to get that bad... then I would have to catch that... And when surgery is concerned there has to be a distinction between it not being succesful and medical negligence causing complications and death... fun stuff. I plan to live to a very old age. There is ridiculous longevity in the females in my family. I should at least pass 90. My grandmother is 95, has no colon, and when they test her blood they can SEE the cholestoral floating in it before it heads off to the lab. And she is still looking great.

That's awesome about your grandmother!
 
Thanks again to all who posted info and experiences
New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, December 19, 2014 8:52 PM (GMT -7)
There are a total of 2,300,449 posts in 255,426 threads.
View Active Threads


Who's Online
This forum has 159786 registered members. Please welcome our newest member, Survivor75.
337 Guest(s), 17 Registered Member(s) are currently online.  Details
GMoon, Katebirch, MissGigi, 81GyGuy, LymePickle, RavenH, Jerry L., astroman, Bohemond, orchid_rain, Womb, IHL, TrainGuy, Sherrine, colitis32, Garden Peace, Firefly18


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer