You all know Bratcat's story from the UC forum. She only had UC since September 2006. She only flare 3 times. But those flares cost her to miss out on quite a bit of her high school years. She never had accidents but when she flared, she would go to the bathroom 40-50 times in a 4 hour period. The only "real" medicine to help her was prednisone. As a family, we talked alot about her choices. As we (especially her) came more and more accepting of surgery, we realized this would be a better time for it. No job worries (other than a part-time afterschool job), no insurance worries (still under ours), no money worries (at least not for her). The hope is that with surgery, she can go to school, enjoy being a teenager, and go on to lead a healthy adult life.
It was very hard because she was in remission by the time surgery came (she was down to 5 mg of prednisone from a high of 60). Going in to surgery, the surgeon reminded us that if it turned out to be Crohns, she would get a permanent ileostomy. She had as many tests as possible to rule it out but the thought still lingered. After her step 1 surgery, we asked the surgeon about her colon. Truthfully, he said it was somewhat inflamed. Not great. Not horrible. Not, you are so lucky to have had the surgery right now. He and the GI feel that was mostly because she was in remission. Which is a big plus going into surgery.
Bratcat is looking forward to being on the other side of surgery. Finished with the surgeries, finished with the recoveries, living her life in a new better way. For now, she is accepting of her ileostomy (no, she still doesn't like it). When the surgeon asked, she told him that no, she doesn't feel better now than before surgery (but that is because she was in remission). But she is very happy not to have to take medicines, excited about not having to worry about flaring again. She is going out more and more with friends. She didn't in the beginning after surgery because of her lack of energy not because of the stoma. She is counting the days (73) until her reconnect surgery. She worked it around her school schedule so as not to conflict with too many things she wants to do. She has been sick for the past 2 years in Sept-Nov. She plans to use the month of November to recuperate and hopefully be able to go back to school in December.
I think alot of choosing this surgery electively is your mindset. You have to go in knowing that it is a major surgery and will require major recovery. It will be a better change but it will still be a change. Life won't be as it was pre-UC. Her bathroom trips may be more frequent and much looser. There may be some issues to face in the future. But she should have no urgency, no horrible cramping, no fear of future flares for the next 60+ years. It also helps to have a great support system. Our family understands what she is going through and accepts her as she is. Ostomy jokes have become an extension of the many bathroom jokes in our family.
I am sure you are hoping to hear from someone other than who you have heard from before. And they will be along. But I am a proud mommy who has watched her bratcat of a daughter face a tough situation. She had to process alot of information about her life now and in the future (not easy for most and especially not easy for a teenager).
If you ever want to talk, I am sure Bratcat would be there. Of course, I am always here too.
--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
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp