Hi Jeff, my daughter had UC. She reads the forum everyday but doesn't always post. So I'll tell you a bit about her. She was diagnosed with UC at 15-1/2 when she was a sophomore in high school. We thought it was a stomach virus but when that didn't go away after a week or so, she was sent to a GI. She had 3 really big flares. 40-50+ times a day in the bathroom. Each time she was out of school for about 9 weeks. She progressed through all the usual medications. Most helped for awhile but then she would flare again. Her first two flares were in September/October of each school year. In the back of her mind she worried if she would flare the next fall. However this last flare didn't even make until the fall and she flared in the spring. She was on prednisone each time and it did help but she gained alot of weight, had acne, and had moon face (not what a teenage girl wants). She did go into remission towards the end of junior year and even went to her junior prom but she doesn't like to look at the pictures.
She (along with us) decided to have surgery to remove her colon. She had step 1 at the beginning of the summer to allow herself to recuperate and adjust. She had an ostomy until her takedown surgery in November. It took awhile to get used to the ostomy but she did a great job. She saw friends over the summer, lost all her prednisone weight (and a bit more) and got healthy. She started senior year with her ostomy but didn't mind much because she wasn't sick. She took a few weeks off in November to recuperate from the second surgery (much easier recuperation). She wore shirts that covered her ostomy bag (she never really liked to tuck it in to her pants). She participated in gym. She marched in the homecoming parade. Her close friends know she had UC and know she had surgery. Friends who aren't as close know she was sick because she was out for so much. They know she had surgery and most know she had her colon removed. She doesn't advertise her surgery, scar, ostomy when she had it, or her illness, but she also doesn't hide it. It is/was a part of who she is and in some ways, made her much stronger. She has never had any problems with people because of it.
She is so much happier and healthier now. She take no medications at all! She doesn't have to worry about when she is going to flare again, will the medications work, what they are doing to her body. She is planning for college and generally, loving senior year! There is a relaxed look on her face that we haven't seen in years.
She doesn't drink (yet). But she sometimes ate foods that she knew would disagree with her. My son (her older brother) was diagnosed with Crohns. He does drink once in awhile. He knows he shouldn't. He knows drinking sometimes affects his digestive system. He is 20 and has to learn to make his own decisions. It is very tough being a teenager/young adult and having to adjust to an illness. You want to be normal and do what everyone else is doing. Just remember you can still have a good time and not drink (and yes I was once young and did my fair share of drinking).
She had the 2-step surgery (first surgery to remove the colon, create j-pouch, and have a temporary ileostomy). The second surgery reconnected her new j-pouch. She had a full incision (as opposed to laproscopic). She calls it her war wounds or says scars are tattoos with better stories (her dad and brother have tattoos). Her doctor won't do 1-step surgery.
Surgery is not for everyone. It is a decision we discussed as a family, along with her GI and her surgeon. Ultimately we needed to let her make the final decision. For her, it was a great decision and she has no regrets.
I hope you feel better soon.
--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp