How has this disease changed you?

For me, I used to love to eat all sorts of foods, now I'm limited as to what I can do or have to be wary.

I'm not so nervous as to the complications because, if they are meant to happen, they will. What can you really do besides trying to prevent them? I used to be though. I used to associate all my extra pains to UC and stress myself out tenfold by assuming a serious condition such as cancer, etc because it runs in my family or what have you.

UC changed me from a 100% healthy person who could eat anything with no problems into someone who spent a lot of time planning where the next bathroom was and never sure what food would cause me problems because it was so hard to pin that down.

I also have become more cynical about what medical doctors can actually do for me, and this is beyond UC. I have become much more aware of how the food I eat affects my gut and thankfully now have achieved remission, no thanks to any medical practitioner, in fact they delayed my remission by tests that were wrong and by giving me negative reasons to look at food as a problem.

UC has also made me stronger mentally, and I was a strong person before. UC has made me more empathetic by knowing that you cannot tell by looking at them what big problems another person may have, physical, mental, emotional, anything. So they get a little slack from me.

I appreciate my health much more and will not let anything hurt it. I've gotten better at saying "no" (but not perfected that yet.)

Not being able to eat, losing 80 pounds which turned me into a walking skeleton. For me, it weakened me mentally. It worsened my depression and anxiety, made me move away far from family and friends to get a better treatment. Facing the pity of people gets on my nerves too. I feel like I lost the last three years of my life. It ruined my professional life too, as I am an opera singer, and my voice suffered greatly.

"It's taught me nothing is more important than my health. "

Best line here. It pretty much sums up the whole universe. I agree with it.

Sara14 said...
It's made me stronger, it's made me grateful, it's made me more empathetic, it's made me more patient, it's made me eat healthier and love and care for my body more than I ever had before. It's made me grateful for the little things, grateful I don't have something else.

It's taught me nothing is more important than my health. It's taught me I can get through anything.

This, totally.

It shook up my life and made me reconsider what I was doing (dead end job), and I'm starting grad school to pursue my dream in just a few months. I wish I could have gotten there without a lifelong disease and three major surgeries, but since nothing can change that, I'm glad I'm on an awesome path now.

It's made me much more humble... nothing humbles a person like pooping their pants! And yes, it's made me see what's really important & necessary in my life. It's made me grateful too, that I have access to incredible healthcare providers. I think having a chronic illness has brought more into my life than taken away, which I'm also thankful for! I know not everyone can say that.

Absolutely nothing positive has come out of my disease either.

Got nothing good to say. The last 15 years broke me as a person. Losing my colon was the final straw, to be honest. I don't care what anybody says: having a stoma just sucks. I've had it for 14 months and it sucks. I'm sick of the leaky bags, the itchy skin, etc. I just long to be able to go to the toilet the 'normal' way again and not have an uncomfortable, sweaty bag on my stomach all the time.

To be fair, I wasn't the happiest person on the planet before I got Crohn's. But I can safely say it did not help me. I lost 13 years to that disease then lost my colon at the end of it.

I lost the battle. I lost at life. That's how I see it.

Post Edited (NiceCupOfTea) : 4/11/2014 4:14:52 PM (GMT-6)

Only 4 months since diagnosis. Tried to fix it with diet, herbs, etc. which was completely unsuccessful. I have always exercised regularly, eaten carefully. And I get this anyway. Not fair!
I'm falling apart. I hurt everywhere. All I do is sleep. And pace back and forth bed to bathroom and back. Work is suffering. My hands hurt. (Work from home thank goodness.)
I have always cared for everyone else. I hate this!

Thank you for the question. I think the single hardest thing for me is feeling like a prisoner in my own home--unable to work even part time or volunteer or get out to do social things--just live in general. I feel I've been robbed. I feel lonely, anxious and scared a lot. At first it brought great awareness about diet but now after 10 years of eating and living well and trying so many fasts, cleanses, diets, natural anti-biotics etc. etc. i guess i honestly feel like its "unfair." Perhaps an immature view. I still cling to a cure or way to manage the sickness better...maybe this drug, or that diet....I guess that would be hope? or denial? I still got to keep trying, I want to do more in life.
I feel angry because I think the medical industry could help us more. I love being connected to this forum but I realize how many of us are suffering so intensely. Best wishes to all.

Crohn's has done many things for me. It has made me appreciate life, health and my loved ones. They stood beside me even in my darkest hours and an emergency surgery that just about took my life.

Crohn's has also made me learn to say no to things that I would have done in the past. By that I mean going out to dinners and staying out too late, volunteering for too many things, etc. I learned I can't be everything to everyone all the time and I started putting myself first.

Crohn's and my ostomy have also made me a little bit antisocial. I never did well in large groups, didn't like crowds but now even going to an event or a party where I don't know everyone makes me anxious and very nervous. Thankfully I have a dear friend who accompanies me to these events and knows when it's time to leave.

I nap, a lot, on the weekends. The fatigue at times is still overwhelming. My surgery has left me with scars, so many scars, that I look like a road map of Italy and there will be more to come for my next surgery. I hate that, a lot.

I hate when my husband rolls over in bed and puts his arm around my stomach and my bag is there. Detest that.

I am thankful to be alive and to be able to raise my beautiful daughter and live my life with my love but I would be lying if I said that this life is ok. It's not, it sucks and no matter how I try to make the best of it, it will always be a life with Crohn's and an ostomy.

I wouldn't wish this life on anyone.

**************
Age 41, female
Crohn's disease since 1995.
Emergency surgery for a perforated colon in 2012.
Permanent Ostomy.

It's taught me that one of the most humiliating things I could have ever imagined--having an accident in the middle of teaching--was something I could live through.

I also always know where the nearest bathroom is, and I won't eat anywhere that doesn't have a bathroom.

The illness made me more self-centered. It also made me really frustrated, angry even. I'm a lot more aggressive than I used to be before the illness. I really don't like these things in me.

It made me more aware of my body. Since I have to watch what I eat I'm more cautious. I probably know more about the human body because of this disease. People come to me for questions when they have bowel issues. Haha