Community Forum

Hello. I am new to this forum, but far from new to these diseases and to CCFA. The organization, in fact, helped to connect me to my gastroenterologist. who has done wonders in the past. I was diagnosed with UC when I was seven, and was sick from June '97 to April '98 (I think). It seemed as though I lost  a year of my childhood through having to experience the bleeding, the pain, and the stress on my family. I was fortunate enough to be in complete remission for eleven years, but at eighteen, I started to experience symptoms again. These symptoms are different: erythema nodosum, temperatures, and primarily, pain. The latter two have run their course, but the latter hasn't. My gastroenterologist now thinks I have Chron's.

I've never had another friend with any of these diseases. Nobody else in my family has either. Because I know these diseases are genetic, I just think of myself as damaged goods. I may have many talents, but because my DNA made one mistake, I'm no good-not valid. If people were inspected like clothing, I would be the shirt with three sleeves. I've had UC and/or Chron's for eleven years, and I still don't know how to accept it.

 Reply posted for Aaroneet.

Hi:

I sure wish I had heard the term "genetically defective" when I had my 2 re sections. I would have shut my in laws up real quick. And as for my Mother. "always the victim. never the perprator" that would have ended all her excuses about my not eating right like I did when she was cooking for me. Now I've accepted the fact that I was born genetically defective. I am no longer living in denial.I don't ask "why me"  When people ask me, why I can't eat certain foods etc. I tell them that I was born genetically defective and there are no more questions because everyone is afraid of what they might hear. Genetic autoimmune diseases are rampant in genes of my Mothers side of the family. I also have a gluten intolerance. My grandson is Celiac. Hope this makes you feel better about yourself. Marilyn

 Reply posted for Aaroneet.

You are not damaged goods. You are not invalid. You are not defective. You are a child of God. I know we may not always know the reason why certain things happen to us, but if you put your trust in Him, he will help you. I have learned in the past 2 and a half years that my value is not in how well I feel. I have a purpose in this life, as we all do. Acceptance of our own limitations and trusting in God can help us be stronger.
My favorite scripture is Isaiah 40:31--But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
There are many days that this scripture helps to pull me through. Prayer helps me as well. If I know I'm going to have a rough day, I ask God to give me strength to get things done that I need to do. He always helps. He will for you as well.

 Reply posted for Aaroneet.

I, my mother and sister all have crohns. No other of our children or grandchildren have it. seems to have stopped with me. So far so good!

 Reply posted for Aaroneet.

"Damaged Goods", I DON'T THINK SO!!  

My daughter is a Crohn's patient, guess what, nobody else in our family is.   It is not only a genetically specific disease.

I have taught her from the beginning you can do / be anything you want to be.   Do NOT allow this disease to define you.......you need to define it!

Guess, what, she is exceling in everything.....You should see her in her pre-team gymnastics class......she defies gravity (really).   It is simply amazing.

Sure we have our days, not feeling well, run down, in the potty, etc., but when we have those days I just re-focus our attention on being one step closer to a good day!

God Bless you and I wish you the best!

Lizzies Mom

 Reply posted for Aaroneet.

Hehehe... no worries! The paddywagon hasn't come for me yet

 Reply posted for SabrinaMarie.

SabrinaMarie, I accidentally reported your comment as abuse. I am so sorry.

 Reply posted for SabrinaMarie.

If you're worried about passing it on, don't. If one parent has either Crohn's or UC, there is only a 3% chance of your child getting it. I wouldn't have children the natural way, but more because of flare-up fear than the fear of passing it on. I'll keep looking for answers to my dilemma, I suppose...

 Reply posted for Aaroneet.

Hi! My story has a lot of parallels to yours, and as Im dealing with my first Crohns flare since being married the whole "genetic issue" has been on my mind a lot lately. I know that statistically one is more likely to have a sibling with IBD than a child with IBD, but I am concerned about passing this disease on to any children I might have. Especially since I do have a sibling with Crohns (and one with lymphoma).

I just wanted to let you know youre not alone in this - I dont have any advice for you because I dont know how to deal with it myself!