Thanks Judilyn for the vote of confidence
Hi kazzaz! My daughter (Bratcat) is now 17. She got sick in September 2006 and was diagnosed in October 2006. She went through all the usual meds (asacol, rowasa, cortenemas, 6-mp, remicade, prednisone). They would work for a bit but she would flare again. She never had small flares. Only 3 big flares in 1-1/2 years. She was out of school for 2 months at a time.
She was in remission when she had surgery which is healthier but hard because she was feeling well. We decided it would be best for her to have surgery at the beginning of the summer so she could have the whole summer to recuperate and adjust to her new, improved body.
Bratcat had step 1 (of 2) surgery on July 3. The surgeon removed her colon, created a j-pouch with her small intestine, and created a temporary ileostomy. She had a full incision (although many surgeons will do it laparoscopically). Her doctor prefers to do it that way. She was in the hospital for 6 days. She had an epidural to relieve the pain for a few days. For her, the first few weeks were tough. Her incision hurt (until the staples were removed). She really didn't have alot of other pain. She did take a pain pill at night once in awhile to help her relax enough to sleep.
She has adjusted pretty well to her temporary ostomy. She has had a few leaks. It is trial and error to find what works best and for how long. She has no problem emptying her bag. She is fairly comfortable around people. She prefers wearing looser shirts so she can let her bag hang down. Luckily, baby doll shirts are hot right now!
Bratcat went out with me during the summer when I ran errands. At first she got tired easily. She decided (on her own) to use the motorized wheelchair carts they have in the stores. It never embarrassed her and it gave her freedom to join me. She went back to work (she works part-time at the library) about 6 weeks after her surgery. She probably could have gone back sooner but, hey, it's the summer! She hangs out with her friends. If anyone asks, she will usually tell them what she has gone through. She has had no problems (knock wood). She gets a bit lightheaded if it gets too hot out and she doesn't drink enough (and she drinks alot!). Small aches and pains but nothing that tylenol won't help. Her biggest problem this summer was lack of energy and strength and having to build it back up.
She started her senior year last week. She is doing well. A little more tired than before but her days are much longer. Each day gets better. And she tries to get more sleep.
She is scheduled for her last surgery on November 10. The surgeon will "push" her temporary ileostomy back in and reconnect to her new j-pouch. She should be in the hospital 3-5 days. The doctor says she should be able to be back to school within 2 weeks. We worked it out so she probably won't return to school until after Thanksgiving. It gives her a bit more recuperation time. Bratcat is very excited about her upcoming surgery (who would have thought you could be so happy to have surgery). We expect her to have many BMs in the beginning. She knows it may not be easy. But we have been looking at the whole surgery process as a yearlong thing. She will continue to get better. She will hopefully feel great by next year (they say it can take a year for the small intestine to adjust to its new job).
Bratcat knew exactly what the surgeries entailed but she never looked at a picture/photo of any of it prior to her surgery. I did. The best thing about surgery so far is no meds. She only takes a multivitamin. She no longer has to take prednisone. This last flare in the spring caused her to gain 40 lbs. She has lost it all (she isn't trying). She eats well. It is exciting to know that she won't have to worry about flares ever again. She isn't too concerned about the number of times she will have to go to the bathroom. She figures she goes to the bathroom to urinate many times during the day, so what if she will have to poop also. There won't be urgency or pain.
I hope some of this helps. Feel free to ask more questions. I am sure Bratcat will chime in. If you want to talk to her (or me), just holler. We also go on the ostomies thread on this forum and on j-pouch.org. We (I) asked lots of questions (big and little ones). Everyone has been very supportive.
--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