there is life after diagnosis. My husband was diagnosed at 18, he's 42 now. He was on his way to West Virginia to play football and led an active life when diagnosed. He skiied, surfed, playbe footbal and was always out and active. this crushed him.
His diagnosis got him down, but not for too long. He started by introducing foods and making a safe food list and a BAD food list. there were times that he thought no food was ok, but that changed. Learning what worked and didnt took time, patience and a lot of time at home in the bathroom. First on his list was to make sure his friends knew the deal, they protected him, looked out for him and accomodated him as much as possible. Even today going places he avoids traffic times, has 2-3 routes mapped out wherever we go so he can hit alternate side streets, etc to get around traffic is a nightmare and major concren for him. Out to eat we keep it no more then 15 minutes from home and always call ahead to know the toilet/guest ratio. We tend to be the big partiers and host things at our house so he can eat, drink and be merry close to his commode and in the comfort of our home. He learned his pain was mostly in the am, so avoided scheduling stuff first thing in the day.
He found meds like Nulev (helps with urgency) this quick melting tab on the tongue will INSTANTLY slow down all the sphinters in your body and buy you some time to find a restroom.
After years of 15 pills a day, steriods and lots of trial fad diets, like micro and macrobiotics, supplements, gluten free ( none of which worked for him) We found Remicaid, an IV infusion he gets every 6 weeks. while not a cure, my husband is symptom free, toilets 3-4 times a day vs 15-20 and has had significant healing in his intestines and colon. He's been on remicaid for 2 years and it has changed our lives for the better. We are so glad he is on it and have so much more freedom then ever before.
Our advice is to hang in there, go to www.ccfa.org and learn more about the disease, join us in fighting for yourself and a cure and research different approaches - I would suggest discussing remicaid w/ your GI doctor. Johnson and Johnson has a patient assistance program and can help you pay for it. Good luck and hang in there. I am proud of you for coming on line and starting to share your story. Communication is key and so is education. You will be ok. Remember stress aggrivates it so take a breath and go one day at a time. You will be able to have relationships, friendships, work, have fun, fall in love and do all the things you wanted to. Just stay positive and take one day at a time.
Fighting for you and me!