fear of the future. have you ever thought we will never have a decent quality of life anymore?

Have thought it pretty much every single day this year.

I didn't manage it. I flipped out over the last hospital appointment I had, vowing never to go back. I was driving myself up the wall with anger and frustration and anxiety. I still have depression issues, but I probably always will: that started long before the Crohn's. But I'm not so strung up about the Crohn's as I was. I just try now not to think about it that much, as I simply can't cope with constantly thinking about something. I'm a rather obsessive person by nature, and so I can get very fixated on a single issue.

Maybe it's easier for me, because - as long as I don't eat very much - my symptoms aren't that bad really. The hardest thing by far for me has been accepting that I can't eat as freely as I used to. Whatever I eat, I have to consider what I ate before it and what I will eat after it, and if it will fit in with that. That's boring and limiting.

There are many diseases worse than Crohn's, but on the other hand I don't see why I should let that stop me from thinking what I go through is nothing. To me it's actually a huge deal. One way or another I've been through a lot with the Crohn's over the past 5 years. Just because I haven't been at death's door or had multiple surgeries doesn't mean I've been at the peak of robust health either.

But that said, constantly dwelling on having Crohn's isn't going to make it go away. If you're thinking about a plan of action, that's absolutely fair enough. But if all you're doing is thinking the same old thoughts over and over again, ad infinitum, then there comes a point where it's all just pointless really. It's like having an itch and scratching it again and again: it's immediately satisfying but it doesn't make the itch go away: it comes back stronger if anything. I'm trying to turn my thoughts away from Crohn's and food (another abiding obsession of mine). And finding other things with which to engage my interest.

As far as fear of the future is concerned, nobody can know the future. I must be honest: I do fear the future late at night, when I'm tired and at my most vulnerable. But the daytime is like a different story: upon waking, all the fears of the previous night have evaporated.

Sorry for the lengthy ramble. I am off to watch Holby City now, so you are spared any further rambles.

thanks for sharing your feelings, dear.
for me, the worst time of the day is, contrarily, the morning, when I wake up. perhaps I'm more depressed than you, as I heard that when you are heavily depressed you can't cope and tolerate your wake up, and thinking you're spending another bad day. this is what I'm experiencing almost every day 4 months now. I had this bad feeling over those years (10) with crohns, but not as much as recently. it's very bad. this morning I literally couldn't stay on my feet, I was not weak, just I did not tolerate to stay on my feet, I felt as I had to fall, and trembling.
I think I'm just weak, I would say spiritually weak; because I fear my future, I always think about the worst diseases I'm still not having (hypocondria) and it's like I'm already having them.
4 months ago I was in hospital waiting for my colonscopy and I visualized my colon as a hamburger-like tube, I thought is as something so damaged I didn't know what I could have done if my father wasn't there.
I'm also sharing with you the fear of the food, any food. I'm spending my time thinking about diets, thinking about what I shouldn't eat and anything I eat then, 24 hours later, I have the tendency to think it harmed me (I don't know the reason but I thought that the only thing doesn't harm are bananas...)
recently I found a person 5 years younger than me, he had a proctocolectomy and had definitely an ostomy because they found a precancerous colon, and now I think that I will have it for sure.
I also fear my drugs, as in the Internet you can read that each and every drug is cancerous (prednisone, azathioprina, infliximab and so on). I fear I'm slowly developing a cancer because of those drugs.
simply I can't cope with this disease.
it's not about the symptoms, it's about what I fear.
I'm just 30 and I can't see my life nor happy neither long, and I tend to think that I had a punishment I just can't manage neither never accept.
then, I think I have a weak attitude, that I'm a weak, that men shouldn't be weak and so, if I am so weak, I don't deserve to be a man, neither to be healthy neither to be happy.
this makes my life empty. I don't have a job, don't want to find a job and this exacerbate my depression as I know that a job could keep me in touch with people, with the world, and share experiences, and just live.
I'm abandoning all my hobbies and my only hobby is becoming surfing the web looking for info and experiences about crohn's disease. but this helps just when I found people that are feeling like me, and just temporarily.
I'd definitely want to go in a desert island, eat bananas and survive as long as I can, and if I couldn't survive, I'd be happy just because my parents and brothers won't see me suffering.

Post Edited (asdrubale) : 12/7/2010 2:11:29 PM (GMT-7)

hugs teacher3; I think that discussing about it it's, perhaps, the best thing we can do to stay a bit better when we are depressed.
I'm not english mothertongue so writing in english is, perhaps, something that helps cause it's like an "external myself" who writes and analyzes and describes my feelings.
I'm sad for your arthritis Zena and can imagine what are you feeling. also I'm sad for your hair teacher3. I read experiences of people who stopped prednisone and hair came back, hope this will happen for you.
thanks for sharing.

Post Edited (asdrubale) : 12/7/2010 2:21:09 PM (GMT-7)

Hey, I hope this makes you feel better. =)

I know exactly how you feel.

I'm 21, going to be 22 in march and I see all my peers around me on a daily basis with hunger in their eyes and always on the go. And, I wonder will I ever take the chance to be something if the opportunity comes along? Those opportunities are what make life worth while, not the everyday routine, even though that's all we want sometimes.Truth is you will have opportunities that will make life worth while, for some its finding love, for others its having a career, or traveling the world.
But, living with this disease I'm always afraid that when my time comes I'll have to pass because I feel sick. That scares the CRAP out of me! no pun intended.lol
But in all honesty mornings and nights are hard, but transportation is a big fear of mine. So, the way I deal is preparing for the worst but being in the moment. I have to mind trick myself. For example; I pack extra underwear and pads in case of urgency. But, when I'm on the train I mentally distract my self from anxiety, or the pain. I listen to music or think of what i have to do when I get to my destination. This usually holds me off until I get to my destination. Take it day by day step by step!
Another thing is always treat your body as if you were sick. You might be having a great day crohns wise, but eat cautiously as if ur not okay. It could prevent an unwanted flare up, for those who are food sensitive.
And my last tip is to realize how far you've come. Literally the day before yesterday i was feeling the way you are now. But, yesterday my friend came with me to get my iron treatment. ( I don't know about you but iron infusions wear me out, too much nutrients at once my body needs to sleep it off). She stayed with me for the two hours. we had lunch, I went through two classes (6hours) and i saw her at the end of the day with another friend of ours. Seeing my friends puts a smile on my face. She saw my smile and said I don't know how you do it? She was like, "I'm beat... and your the one who had treatment." and that comment made me feel like a million bucks! I made it, I made the day and I did it with more um-ff then a healthy 19 year old. So, she not only had a new found respect for me, but I had new respect for me.


And, you should find it in you during those dark times. Cause I believe anyone who has this disease is accomplishing more then any healthy person can comprehend. So, although you're craving normalcy, being abnormal is far more superior in actuality.

I want to let you all know that I had a rough 10 years disease wise. I had gone undiagnosed for 10 years and the next 10 were spent trying to undue the damage. I had to have 3 resections, I was a young mother trying my best to do everything I could for my daughters, working part-time and an A type personality who needed to have a home cooked meal on the table and a clean house at the end of the day for my husband. Some how with the help of my parents and my husband, we got through it. I learned that if I don't take care of ME I can't take care of anyone else. So I take time most days to rest, maybe nap. If the house isn't spotless, so be it. We finally found the right combination of medications and things have calmed down so that I can live my life without too much interruption. So yes, it can and does happen.

I have had this disease for probably close to 33 years, I'd sat that is a future. Most of that was pretty good, even the 10 years that the disease was wreaking havoc on my body. I had people who loved me in my life and when I look back that really is all that matters. No one gets out of this life with out having to deal with some sort of grief. Life isn't picking on us. Trust that your doctors will find the right course of treatment and your disease will ease up. If you need help, seek it. There are lots of options and people willing to help.

You know, I figure I could go on thinking that, but I wouldn't really be helping myself. In fact I'd be making it worse. Life is tough for everyone, some people have just got a shorter paddle for the river then others do. All you can really do is improvise.

I have UC that is not very well controlled and I wanted to chime in on this thread. For me the only thing that keeps me sane is the constant hope that I will finally beat it- and by beat it I mean finally get sustained, multi-year remissions and stop simmering with mild to full-flare symptoms. Even if it turns out to be a fantasy (which for now I refuse to accept), it is the hope that success is around the corner that keeps me going. I keep leapfrogging trying things that show some future promise even if they are not accepted yet by the medical community- eg helminthic therapy for example. Anyway, that's my mental trick for now, not acceptance, though I guess for some the latter works- to each their own.

10 years now of suffering, and many before being diagnosed.

I worked through 5 of those years in complete misery, 2 jobs.

Then the surgeries took their toll and I could no longer work, was forced on ssi and medical, (which I should say is a blessing in it's own way, the govt could have told me to FO and I dont know where I would be then, no money, no med insurance)

Each year soemthing new happens, a new organ begins to falter, a new vitamin defieciency pops up, more arthritis. more sickness, vomitting, weight gain, weight loss, too much drugs, to little, massive side effects, endless different combinations of drugs, picked up a nasty little condition called Tardive Syndrome from reaglan to boot.

Yes, there have been so many days where I jsut thought, go on, go outsside to the main road, and wait for the biggest truck/bus you can find and just step out there, and it will all be over, all the pain, the fear, the worry, the drain on my family, my wife.

This disease has stolen me from me, from my family and wife. I always say, I just want my life back, which I cna audbily hear my wife quietly say "me too" and I cry, because for all the pain I'm in, for all the torment I go through, I would do it all again for just one more minute with her, I cry writing this.

This is a Jekyll and Hyde situation for me, the part of me that keeps me going every day is the one that says FU disease, life, DNA, Genetics, your not gonna beat me. You can try, you can make me scream you can make me cry but you cant take my soul, not now, not ever.

The other side just wants it all to end, and not just for me, for the pain I am afflicting on the one closest to me, my wife. She married a man, with his own bussiness, with a bright future and she invested her life into me, and what does she have now, an overgrown 42 year old baby, who can barely leave his bed, let alone the house.

But I cant think that way, I cant put thoughts in my head that our not truly my thoughts, I can not pretend to know how she deals with this and stays with me.

I cant control my own thoughts to tell you the truth, pain and fear of this being the rest of my life keep my brain in constant annxiety.

I can only say, that I wake up every day in pain and I thank God, yes that's right, I thank God for another day on this planet, another day surrounded by all the beauty and miracles I see out my window and read on the internet. No matter how bad it gets I believe that life is a gift and I want to hold on to that gift as long as I can. So if that means bringing on the pain and grimmacing and suffering till the end of days, then I will say, I had love in my life, I saw beauty and I was thankful every day for the time I had surrounded by the most wonderful woman in the world.

I dont know if my random thoughts help, but they are what they are, the good, the bad and the ugly if you will.

Maybe I am competitive, I picture myself in a physical fist fight with an invisable foe daily, like some old star trek episode, and I say, I am Capt. Kirk and by the end of this episode I am going to beat you, and I am going to beat every other enemy and obstacle you throw at me for every upcoming episode because I am CAPT. KIRK.

Yeah ok, I think Ive gone off kilter, hoepfully some or all of you will grasp my insanity and say, yup, I'm Capt. Kirk too.

Till next time

Thanks

Jon

jon you made me almost cry, your story is so painful.
you are very fortunate you have a familiy and a woman crohns took me before I had one and sometimes (always) I feel miserable as I feel I will never have anyone to love and taking care of me. see it from this point of view.
I think that someone, when they say crohns is not so bad, doesn't consider that crohn's can hit you in different manners so there are actually different crohns.

every time I haven't formed stools, I have bad thoughts.
every time my stools are more formed, and I see no blood, I'm happy and optimistic.
yes, I'm ready for psychiatry care...

Post Edited (asdrubale) : 12/9/2010 1:59:29 PM (GMT-7)