Community Forum

Hi,

It was suggested I do this...I never talk about my disease unless it is asked.

My name is Jake, and I am new to this form of support. A breif history: I am 32, and have had UC since I was 3. I went through the ups and down like most. I can remember spending every summer in the hospital, once for over a month. I learned how to manange my symptoms, and  eventually found a state of amazing health associated to my UC during my early 20's. This state was primarly self managed, and used little medicine (asachol). I moved out from my family's home at 22, and fell in love with my now wife. I now realize my parents lack of love for one another, and at times hate really made my UC worse. They are still married, and I pretty much gave up trying to fix or help their relationship.

I have hid/never tried to let this disease burden anyone.

When I was feeling good, I ate ice cream like a child, and never had symptoms. I had normal stools, little pain, I ate pizza, and other things I never could have in the past. I had energy, and I worked out, put on some weight, and felt good about myself.  It was strange, but I liked it. I did have terrible on/off leg/knee pain from 16-30 . During this time my mind was clear of stress, and I could manage any stress very easy. I graduated college after dropping out, and live really felt great.

Fast forward to 28 my self managnment began to fail me, and I visited a new specialist last year. I was not getting better through my usual techniques, and prednisone was driving my mind nuts. I did not want to beleive I was as sick as I was. I had a Colonoscopy (18 years overdue), and then learned I had sever Crohn's. She said I probably always had Crohn's.

I now still take mesalamine, and new to remicade. Remicade seems to work good when it does. We are just trying to determine the best dosage, and time intervals. I also need to manage my stress better. I plan to seek mental health assitance, and as an adult see that this could have been a significant benefit when I was younger.

Me speaking to this form is also part of my additional help I can take advantage of, and also maybe help others as living with these dieases is the only life I ever can remember.

I am an open book, and enjoy helping people. Thanks for taking the time in reading this.

Reply posted for Jar3737.

Hi, 

It shows courage to be on a forum like this and open up. I understand the battle. I have had Ulcerative Colitis for more than 15 years. I have been medicine free and surgery free for the past 10 years. For Crohn's...Remove common food allergens that increase inflammation: corn, wheat, gluten, dairy, eggs, potatoes, and alcohol. Avoid carageenan in milks and foods. Avoid sugar! Green vegetable juice 3x per week with kale, cucumber, celery, green apple, parsley, and ginger can help reduce inflammation and pain in the body plus help your cells repair themselves. Find a holistic, naturopathic doctor. They will teach you how to improve your health and stay in remission. Hope this helps :)

Reply posted for Jar3737.

Hey Jake,

Similar to you, I also new to this support group and am just now speaking up about my disease. I've was diagnosed with UC four years ago and in the back of my mind I know there was a part of me that always thought, "no, this isn't forever," even though the first thing my gastro told me was that this disease is chronic. I was a professional dancer for ten years, dancing in ballet companies and touring companies, but after begin diagnosed I found, after two years of trying to keep my job as a professional dancer, that I needed to retire.

There are times - primarily when I'm in remission - that I think I can jump back into dancing again. But the moment I get stressed, or my hormones shift during the month, my UC comes back with a vengeance. 

One thing I've been struggling with is financial and occupational stress. Stress automatically drives me into a flare -- and the residual physical and emotional stress from having to work overtime to pay for medicine keeps me from being healthy.

Do you have any ways that have helped you emotionally cope with your disease? 

Take care :)
Claire 

Reply posted for Jar3737.

Hey there!

Good on you for talking about your disease now. I find that I need to talk about my problems to someone or else I feel crazy. 

I have Crohn's, dx officially in 2014 but I have been struggling for a while before that. 
Stress absolutely causes my disease to flourish. So I totally understand where you are coming from. My family was rather dysfunctional at a young age too, and even still. 

Definitely keep searching for the right path. I know that Humira worked for me, but biologics work differently for everyone. I hope that you find some relief! 

Thank you for sharing!

Dani

Reply posted for Jar3737.

Hey OP,
I'm so sorry to read about all that you've been through, and from such a young age. I was diagnosed with UC when I was 7 (20 now), so I kind of understand the notion that you don't really know what life was like before all this fun stuff.

I just wanted to say that I think it's awesome that you're talking about all this now, even thoughit's not the most comfortable thing to do, especially to stangers. But we are here for you :) It's also great that youre seeking mental health care. Personally, mental and social stresses are two of my biggest triggers, so i know that getting ahead of the mentality helps so much. I hope all is well with you and i just wanted to encourage you to keep talking about it, keep sharing. It's a sucky disease and it can be embarassing at times, but you and your body are stronger than you know :)