• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

How to answer a tricky question.

The last few months my wife has been asking me the same question over and over. That is if I am afraid I might die because of Crohn's.
My responce is no, I am not going to worry about my Crohn's or what might happen to me in the future. That's the truth. I don't have the midset of all the "what if's" that could possible happen to me. When something comes up or my health takes and turn for the crappy I just deal with it then and there.
I know my wife means well and she loves me very much. I do try to express that I am thanful that she loves me so much to care for me to that extreme. The question doesn't bother me at all but I know the thoughts going through my wifes mind bothers her and it upsets me.
Living with Crohn's for almost 3 decades now I know the chances of dying are slim to almost none. But my wife and I know some one that has actaully died from complications associated with Crohn's. Also, a could more people that had very bad flare ups that turned their immune systems to junk and they caught deadly viruses in the hospital that really messed them up for months and years. I know these things can happen. But it really doesn't bother me. But does anyone else know a more comforting way to explain this to my wife to help her put her mind at easy?
 

Lisa

Adminstrator
Staff member
Location
New York, USA
hmm....this can be a touch one....I too have dealt with this disease for over 30 years....am I afraid I will die from it? NO.....I honestly believe I have more chances of being injured/killed another way - traffic accident, work accident etc.....

My attitude is that something, somewhere will get me - but I'm not going to make it easy!!!.....my husband always worries about me getting sick, but in reality he gets sick more often than I do.....
 
I used to ask my Grandma if she was afraid of dying from the breast cancer she had. I always told I didn't want her to die and that I couldn't handle it. I was 10-16 while she was sick. She always told me "My mom's gonna die, your mom's gonna die, I'm gonna die, and you're gonna die. That's how it goes. You just deal with it."
She was very blunt and realistic with me, and it helped. I was still devasted when she died, but I knew it was coming, so it wasn't a big shock.
I'm actually quite scared that I'm going to die from crohns. Not directly, but as a result of complications, or cancer from the drugs, or an infection that I can't beat. I've never been this sick before. Never been in this much pain. Never been this skinny (in my adult life, of course.) I want to have kids still, and get married, and spent my life with someone. And the thought that it may not happen like that is really terrifying.
If your wife is worried about that, she probably has a valid reason. People do die from crohns. I don't think the fact that you're not scared is going to make her any less scared. All you can do is tell her the facts, and hope she starts seeing things from your point of view. She may not, but at least she can find some comfort in the thought that you are ok with it.
 

Jennifer

Adminstrator
Staff member
Location
SLO
I hardly ever think of the possibility of dying from Crohn's because if its treated properly and you get your symptoms checked out quickly and have yearly checkups with your GI even if you're in remission and feeling fine then there shouldn't be an issue. Crohn's is a chronic illness but isn't terminal if its treated properly. Some of us have stories where we've already almost died from the disease (me being one of them) and there's no way we'll ever let that happen again. Just tell your wife that you'll do everything in your power to stay well by doing the things I listed above.
 
I am not afraid of dying from Crohn's at all. HOWEVER, I am TERRIFIED of my husband dying of anything... (completely irrational as he is pretty healthy, it's just one of those "what if" things)
I'm sure it's just the fear that something will happen to you and she will be left on her own. It's magnified by the fact that you have a serious illness... It's such a scary thing to think of.
 
I go thru phases with this.... but ultimately I'm not so much afraid of dying as I am afraid of getting too sick to LIVE; I think death would be preferable to a life where I can do nothing and go nowehere because of this....
 
You're so right, lulu. I know exactly what you mean. I'm not really scared of death, but I'm scared of getting SO sick and not dying. That I will just suffer endlessly for months or years with no relief. I'm not suicidal or anything, but if my quality of life became completely non-existent, and no one could help me, I would definitely prefer death over life. I wouldn't want to be hanging on by a thread for months and months.
 
This pretty much sums it up for me....
I'd rather die while I am living then live while I'm dead ~Jimmy Buffett
 
While I'm not afraid of dying of Crohn's or complications brought about by Crohn's, I pretty much know I will at some point.

A number of doctors have told me that I'm a prime candidate for 'sudden death' and I've read my medical records to know that they lost on the operating table a couple times when I was 8.

A GI I had when I was in my early twenties died due to complications due to Crohn's Disease.

It also doesn't help that my mother's side of the family have all died at a very young age. My mother is the first to have reached 65.

So with all of this going on, I know it's there, but I don't really worry about it. I know my kids all worry about this even though we try to keep things upbeat with them, especially when I'm really flaring or in the hospital.
 
Top