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What has changed in your life since you have learnt you have been diagnosed?

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doubledown

Guest
I used to always stress out more about everything. I used to be so into gambling and day trading, and would stress out a lot about how I was doing.

After one of my flair-ups though, I was outta work for almost a month. That literally killed me. I could not stand having to do sit and do nothing all that time, while the world continued to go on without me.

After that I talked with the doctor who said that high stress and lack of sleep were not helpful to stopping my symptoms from coming up. Since then I try to relax more and not get too stressed about anything. Since my one bad time I have been out from work for a long period again. I think it was from my better sleeping, eating and stress management habits.
 

mikeyarmo

Co-Founder
Since I have been diagnosed with Crohn's I have been much more careful about what foods I eat and I definately appreciate it much more when I am feeling good. I would like to say I try not and let stress bother me as much like you have done, but I do not know if that is totally true :). I still always make sure I get plenty of sleep (and I do mean plenty) and I try to stay aware of what I am feeling like each day to know if I should maybe avoid some of the foods that usually cause a bit more trouble for me.
 
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jyarmo

Guest
Wow doubledown! The combination of a love of gambling and Day Trading had to have been a stress nightmare! Good for you for being able to now handle it.

I find that I am now much more careful about what I eat and definetely do not let stress "get" to me like it used to!
 

mikeyarmo

Co-Founder
I think that after going through some of the worst Crohn's symptoms you start realizing that the things you were stressing over in the past were not such a big thing anymore. When you realize that the most important thing is your health, it becomes easier to make everything else less stressful or have an impact on your feelings for that day.
 
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Jenni

Guest
i agree that little things dont stress me out as much. ive also become alot more confident and i realize what is important in life and how stupid it is to care so much about like wat other ppl sayr or little things that arent important. ive become alot more comfortable with myself. its weird u think colitis would make u embarassd and stuff but i realize that ppl care about u because of who u are and i would say colitis is part of who i am but it doesnt define me. but it has helped me become a stronger person
 

mikeyarmo

Co-Founder
That is some great stuff to hear Jenni. I agree with everything you said, and am glad that you have learned so much in such a short time.
 
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Donna

Guest
When my symptoms were the worst was when I was diagnosed. I almost bled to death. That altered my way of thinking in the most major way. I think the thing that has changed in my life, besides everything, is that I appreciate my family a whole lot more. I treasure each and every moment I can hug my kids. My mom and I have become alot closer, and I also learned who my real friends were (most of them quit calling me when I could no longer go out).

I have also come to realize that I am not going to be who I want to be 100%...like as in mothering. I cannot be the mom I want to be, or was. But, I now make my good days GREAT by doing the best in quality, not quantity. My kids appreciate those days alot more now too.

Having had no luck in lowering the amount of time I go potty each day (can still be up to 23 times a day, and this after 2 yrs of meds and what-not!), or my fatigue or joint pain....you have to change how you live your life. I think the hardest part was just realizing I will not be able to be who I wanted to be, so I had to adjust that thinking, and now, I am who I am meant to be.

I suffer from alot of guilt too. Especially when it comes to my kids. Because of all the joint pain, the potty trips, etc, I can't exactly pick up and go, or play baseball like I used to. I used to be real active, but that doesn't happen too often anymore. So, try as I might to not feel guilty, it still happens. And, the weight gain from the prednisone (even tho I didn't eat!) is horrible too in keeping one from doing things. I used to weigh 250, but now since the last doses of pred, I am over 300 (I swear I am the only big Crohnie out there!). But, like I said, I have had to come to conclusions, and change my ways of thinking, and in doing so, I am happier for it!

Donna
 
K

Kossy

Guest
Since I was diagnosed when I was just a wee little kiddy I can't really say what's changed for me. It's been over 20 years since I've first got sick. I can't imagine what it would be like to have your life flipped upside down later on in life when you've had made certain habits in your life. I know it's harder to change a persons life style the older you get. So I guess in this aspect it was nice getting sick when I was young because the things I needed to change in my life I was basically force, or decided for me by my parents and they've just become my way of life.
Now if I all of a sudden became cured, and my colon was still in me then I would have no idea what I would do with myself. I think I would just go hardcore and not check the toliet paper supply I have stock piled for like a week instead of every day.. Oh and I would be a lot richer... (no medical bills, ostomy supplies, and the thousands of dollars I must have wasted in TP.)

Oh funny story. The year that I got my ostomy Charmins Parent company, Procter & Gamble's stock lost 10.2 points in the market. I like to think I was the factor for my lack of as much TP I needed to buy.
 
I have learned to live every day as if it were my last. I know it sounds cliche but it is true you just feel happier and when I forget to do that I feel reeal depressed. I have also become more creative. I am thinking about painting now and I have become a million times better playing guitar. I am even teaching myself how to sing.

Jeff
 
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Kate

Guest
For me once i became diagnosed somethings became easier people would belive me and not just go yeah its all in her head. I have also tried to reduce my stress where possible. Otherwise im still the same old me but rattle when i walk from all the meds :)
 
I have changed my diet completely. I make two meals most days. One for me and one for my son and husband.

I thrive on stress so I have been trying to learn new ways to eliminate stress from my life. Stress is never going to disappear but I am trying to ways to deal and let things go more than I used to.
 

Crohn's 35

Inactive Account
I bumped this up because I realized after so many years gone by and people in and out of your life. DONT sweat the small stuff! It really is true. Even though we think it doesn't do any damage, to us it can. I learned a lesson from Dingbat and my husband. You can't fix everything and things always work out for themselves.

Everyone should know that your health is number one. If you care about others that is great. Just make sure you love yourself and give yourself permission not to be superhuman!

There is always out there someone worse and even though I know my life isnt perfect, I wouldn't trade it for someone elses problems. So the only shoes you need to fill is your own. YOU are responsible for you happiness and no one else.

Realizing your worth makes it so much easier to embrace others and a better journey. ;)

Hope you can tell us what you have learned on the forum and since being dx.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Probably the most important for me- I am NOT going to let this disease decide who or what I can be.....even with flares, I still did what I wanted (NOT always to the benefit of my health!).....now, with a husband and child I do take my health more seriously, but I don't let it rule my life.....
 
Great idea Pen. What has changed for me? I realize I don't have to do it all, nor do I want to anymore. l go to bed at 9:00 every night and I'm not embarrassed by that. It's what I need to do for me. I eat way better - even thought I can't eat veggies at the moment, I eat way less processed food, fatty food and am conscious of every little thing I put into my body. I appreciate feeling life a lot more. I don't take my wonderful husband for granted. I actually could go on and on.
 

DustyKat

Super Moderator
Speaking from observations of Roo............

After her diagnosis I saw a change in her outlook on life and what was important to her.

Prior to her op she was very competitive and driven as far as school was concerned, afterwards less so. Many people say you change after you have a life changing experience and I know that happened with Roo. I think she has more focus in her life and knows what is important to her and what isn't worth wasting her time on or stressing out about. She is determined to get on with things regardless. I also think it has helped shape what she wants to do in life as far as a career is concerned. As one of the posters on here once said to me, if he had his time over again he wouldn't change anything. That made me me sit down and think about Roo and the positive things in her life that Crohns has shaped and brought about. I didn't really realise until that point that there were quite so many.

Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
What I have learned from my ten yr old. Everything is black and white. Either he feels good today or he doesn't. There is no concern whatever from his perspective about tomorrow or ten years down the road. Children are the only ones who truly live by the mantra "carpe diem". I wish I could see his smile today and completely forget his prognosis for the future but an adult must be a realist.

He will occasionally ask about liver transplants and such but always with a sense of awe and wonder and never an ounce of dread. I don't know if it's so much a matter of what I've learned about crohn's and psc as it is what I've learned about the value of happy children. If my children feel well and are happy, at least I have the chance to be happy as well. My well-being is inextricably connected to theirs.
 
I have definately learned not to stress about things I can't control. I used to worry alot about that stuff..I know it's useless. Now I just can't do it..I get sick when i worry to much. Also on my good days I make sure to do everything I can to have a GREAT day and on my bad days I let myself off the hook and just take care of my body and don't worry about if the house is clean ect.
 

Astra

Moderator
I used to run around looking after everyone, in work, family etc
since my near death experience, I don't now!
everyone is big n ugly enough to do it themselves!
seriously tho, I walk away from confrontations and arguments, stress nearly killed me!
This is a lesson I have learnt from my illness.
 

Dallies

Dragonfly
Since Meg's diagnosis of Crohn's. I know how fickle life can be and how a perfectly well girl can suddenly be very poorly and that illness can affect anybody. I know it's a cliche but life really is too short to worry about petty things.
 
Hope things are going well Pen. I'm also hanging out easy and letting things roll. I think since I got diagnosed I have learned to smile more often and let'em dangle!

I have had the best summer in longer than I can remember.
 
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