life expectancy

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Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 8/28/2008 2:17 PM (GMT -7)   
Hi I was wondering if anyone else has the dread of a low life expectancy. I fear it all the time, and it makes me so stressed out. I can't even think about the future anymore, because it just doesn't happen in my head, i can't imagine anything. At the back of my head I'm ALWAYS thinking I won't live very long. ???? My BF is always telling me not to be so negative. I'm not meaning to be negative, it's just the way I feel. Since I had my daughter it has gotten better, because I want to believe I can be there for her as she grows up, but every so often it creeps back into my head.
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/28/2008 2:26 PM (GMT -7)   
That really depends on the rating of your Crohn's. there isa minimal (can't think of term), Moderate & Severe. Severe is life threatening. You could have quite a normal life span though. I've had moderate for 30yrs.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/28/2008 2:27 PM (GMT -7)   
On average having IBD doesn't necessarily shorten your life...it's a good thing depending on ones perspective of it.

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


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/28/2008 2:54 PM (GMT -7)   
I am not aware of any data that point to a reduced life span from Crohns disease. It is generally classified by medical people as a chronic illness . . . not an acute one, even though it dies feature flares and the occasional crisis (like an obstruction). In fact, I would suspect that Crohnies are somewhat better protected from some life-shortening illnesses (like colon cancer -- we have regular scopes that would detect it early). There will always be the rare and isolated cases of people with Crohns who suffer a catastrophic GI bleed that could cost them their lives, but the truth is that people with chronic illnesses are usually better managed and checked regiularly by their doctors than those who only see a physician when they have the occasional flu or broken arm. They are more likely than we are to carry an undetected heart problem or tumor around until it reaches fatal stage. Crohns is certainly (in allmost all cases) less damaging than some chronis illnesses like diabetes . . . I have never considered my disease to be one that would cause me to die any earlier than I otherwise might have.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/28/2008 5:35 PM (GMT -7)   
Hi I think it passes threw a person's mind and of course we all fear leaving our children. With good care you will probably live a long life and I am so happy to see you have a little one to spend it with . Enjoy the now and just take good care of yourself.You also have the extra bonus of being here with us that care so much for each other. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 266
   Posted 8/28/2008 6:22 PM (GMT -7)   

If you do not mind statistics, here is one study:

For men the Standardized Mortality Ratio (SMR) is 1.1, for women it is 1.4.  If a woman was diagnosed of Crohn's before the age of 50, the SMR is the highest.  The following link is the reference.

http://www.ncbi.nlm.nih.gov/pubmed/12055588?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed


Diagnosed with CD in 1994;

In 1994 I was treated with Pentasa of no avail.  Have being treated with Chinese herbal medicines for over 10 years.


FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 8/28/2008 6:43 PM (GMT -7)   
I have had 37 surgeries and am down to just inches seperating me from being able to live unassisted or slowly starving to death. I won't go TPN and it's back again after leaving me alone for almost 6 months,
It WILL kill me...just a matter of where and when. I am 44 have had this since age 6 with my first surgery at 11. Have lost everyone I cared about over the years due to their either not being able to cope or me
driving them away because I couldn't see a future. dont make my mistakes...live love laugh and remember everyone dies...just be glad it wasn't today.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 8/28/2008 6:54 PM (GMT -7)   
Pleasenomore,
 
I am very sorry to hear of your struggles. If you want to avoid TPN, would you consider tube feeding instead?
 
It provides the same nutrients and disease control, but without the infection risk. You can always put the tube in at
night and take it out during the day if you don't want to have to walk around with it. Or if you really don't want
the tube, you could drink the tube feeding formula by mouth (total liquid diet) instead of regular food. Granted,
it's not like eating whenever you want, but it could help preserve your remaining intestines. Just a thought.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/28/2008 6:56 PM (GMT -7)   
(((pleasenomore)))
Co-Moderator Crohn's Forum.


FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 8/28/2008 7:00 PM (GMT -7)   
I have fought with this for as long as I have memories. I vowed long ago that I would live as long as I was able to "process" nutrients like every other human on this planet.
I went 6 months in the 80's with out eating, (give the guts a rest...they'll get better...didn't) never again.
I am not fatalistic, nor do I seek death...but I am not going to stop being me, and this me eats...even when it hurts so much you'd think it couldn't get worse...I know for a fact it
can and does get worse. I've had my insides explode (litterally) 5 time and been dead three times...the longest just over 5 minutes...
I figure when the pain goes away and stays gone for more than 6 months...I've finally died.

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 8/28/2008 9:17 PM (GMT -7)   
When I was first diagnosed I wanted to know this, had me worried. But I didn't really find anything that would suggest we normally die younger then others. I think the worst I found said maybe a year shorter was what they found? I've come across a few people who were up there in age and had Crohn's. So it's not something I worry too much about. It crosses the mind every now and then though. I think that's normal.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Just finished tapering off Prednisone *YEAH*, Asacol, Questran, Toprol XL (for high blood pressure).


CheerDad
Veteran Member


Date Joined Apr 2004
Total Posts : 2284
   Posted 8/28/2008 9:32 PM (GMT -7)   
I use too until this DD came really close to taking my life 6 years ago. Since coming away from deaths door by only 10 hours accourding to my surgeon, every day I am here really is a bonus too me. Live each day to its fullest, only God knows when he will call you home.
We can respond to irritation with a smile instead of scowl, or by giving warm praise instead of icy indifference. By our being understanding instead of abrupt, others, in turn, may decide to hold on a little longer rather than to give way. Love, patience, and meekness can be just as contagious as rudeness and crudeness.
 
Randy
Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/
Dx'd with Crohn's at age 12. Symptoms since age 5, RLS, Depression, Anxiety, and down right feel yucky some days.
Learning to live with this Disease rather than be its victim after 36 years.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/29/2008 8:38 AM (GMT -7)   
I really think it depends on the severity of the disease. I think those that have surgeries are obviously more at risk than those that only take 5-asas, to stay in remission.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/29/2008 10:09 AM (GMT -7)   
Chronicallyill, from what I gather, the fear of dying young is something that happens more to use young people.  I'm 27 and with all of the problems I have, I've told my husband, sister, etc. on numerous occasions over the past few years that I've already accepted that I will die young.  I'm not necessarily attributing that to Crohn's, but to some other disease I'll end up with (maybe cancer, it's in the family).  Or, just the combination of all the pills I'm on will do me in one day.  My boss's 20 year old daughter was recently dx with Crohn's and told her mom the other day that she thought she was going to die soon.  Neither me or her have had to have surgery, so it's not like we have severe cases (mine's in remission!), it's just maybe a fear of the unknown.  So, to have the thought in the back of your mind isn't at all uncommon and I don't know that it's necessary bad.  But, to not plan for the future because of that fear is very bad because it's going to reduce the quality of your life...whether it's only a short one or not.  On the other hand, I have learned after being sick for years that I was planning too much for the future...always living for the future and not the present, not enjoying myself now, not spending any money because I had to save it all.  I have learned that I need to balance the two and enjoy my life now, since you never know when it will end. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/29/2008 10:48 AM (GMT -7)   

This is one of those subject I try to ignore but I also worry CD may shorten my life.

However, I also have other family history that other medical issues may come up (diabetes, heart disease)

I figure I will fight my CD and try to stay as healthy as possible for as long as possible and maybe it won't matter in the end.

Chronicallyill, you might want to seek out a therapist. I have and it has helped me a lot. Maybe then you can deal with your fear issues.
 
take care,
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 

 


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 8/29/2008 10:54 AM (GMT -7)   
Chronicallyill,

You are NOT alone thinking that! I thought that a little over a year ago. I was SO SICK, still flaring, depressed from the prednisone, and just felt like it was all going to be over soon. I remember staring at my dog (who was 2 at the time) and thinking, "Wow, the dog is going to outlive me." I didn't think I would live to 30 (well I'm not 30 yet, but that is what I thought...now I definitely know I'll live past 30)! I got some counseling and starting exercising again and am doing much better now. It sucks , but a lot of us have thought it, especially when the disease is wrecking havoc on your life. Arg! I will keep you in my thoughts and prayers! Keep your head up!!!

-Emma
turboemma.blogspot.com/


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 8/30/2008 6:43 PM (GMT -7)   
Thank you all for you replies. A therapist would probably be the best route to go. I've been thinking about that for over a year now. I hate feeling like I am going crazy with all the emotions that I have experienced. Sometimes it feels like I have duel+ personalities. It's good to know that we don't have short life expectancies, I just have to get that in my head I guess. Through the years I have become a very negative person and I know that I am in denial and don't want to take notice of my diseases because I just want to be normal. Every day that goes by I wonder if I will ever get better. It's very hard for me to get out of the house these days because I rely on food to comfort me in a very odd way. I am addicted and I can't stop eating bread, one of the worst things that I can eat. I am higly gluten intolerant. I sometimes feel like I am sabotaging myself because I am scared to get better. I won't know what to do with myself. So many things that I need to figure out and don't understand how others feel with their crohn's. I feel disconnected from everyone. I don't quite understand how this diseases works although I have had it all my life. As the years go by I think I am getting sicker and sicker. My doctors don't listen to me. They just want to medicate me and send me on my way. I am really worried that If I don't find a doctor who wants to support me in getting healthy I will give up on them and so things on my own and get even worse. I don't have a lot of support where I live, which is very difficult. Most of the people around me tell me not to eat all the bad stuff. I tell them to quit breathing. See how easy that is. Eating is an every day thing and I struggle with it. I would have rather been on a very restricted diet since the day I was born that way I wouldn't miss the taste of bread freshly baked with butter, Spaghetti with lots of sauce, freshly baked chocolate cookies with a big glass of milk. Mmmmmmm. I know I am torturing myself, but these foods are so hard to stop eating. I have a problem where I will forget what it feels like when I eat a piece of bread because it tastes so good. Then 5 minutes later I am in excrutiating pain and I wonder why I do this to myself. I seem to do this all the time so I have to remind myself that it will hurt. I am not going to get better magically and be able to wake up one day and eat bread with out a reaction. I've gotten to the point where I give up and just stay home so I can eat all the bad things. It's also really hard that my bf is a picky eater and i have to have the foods he likes in the house making it even harder to fight temptation. He also doesn't cook so I do all of that. As being the cook in the house I have to test things to see if they are done and that makes my condition even worse, it makes me want those foods. It's like telling a child they can't have something and it makes them want it even more. GGGggggrrrrrrrr. So frustrating. I don't know if anyone else out there struggles with food as I do, but man it would be easier if we didn't have to eat. If anyone does struggle please reply I really need some support on how to deal with this. :)
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 8/30/2008 6:51 PM (GMT -7)   
Try sourdough bread. It's better tolerated even by celiacs. Digestive enzymes help too.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/31/2008 6:40 AM (GMT -7)   
I wouldn't put up with your boyfriend not cooking. My husband does most of the cooking in my family. Just stop cooking. If he wants to eat, he will make something. Or if you want to keep cooking only cook what you can eat. If he doesn't like it, tough nuggets. Go to McDonalds. There is no reason you should be cooking foods that you cant eat!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 8/31/2008 12:37 PM (GMT -7)   
Actually, it's living to a very old age that I fear most.

regards,
Robert
Crohn's since 1988
3 resections


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 8/31/2008 1:35 PM (GMT -7)   
i hear ya robert...if i get past 70 (Crohns or not) i will pay someone to come over to my house and finish me off however u like..i got paypal, personal check, or cash..message me with your price.
SCD since 01, remission since 01, occasional Arby's breaks :)

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