I'm a 23 year old female who has had UC for almost 10 years as well and am also off and on considering surgery. Right now I'm trying out Remicade which seems to be a bit promising for me, but I think some day I will just go through with the surgery anyway. I have so much life left that living this way forever seems almost pointless and silly. Why live with a diseased colon, potentially suffering for the rest of my life, when I can get rid of it and move on?
I also have the same concerns as your daughter however, and sometimes they're hard to move past. But after really researching the surgery and reading stories from other young people, these things just don't seem to be that big of a deal. Here is a list I made for reasons to have surgery, maybe it will give her some things to think about:
1) No more worrying about where every toilet is when I go out
2) Being able to go out without having to run to the bathroom several times
3) Being able to enjoy social gatherings without worrying about using the bathroom
4) Not having to worry if everything I eat is going to make me sick
5) Can't have colon cancer without a colon! Even if it's a small risk, it's still there
6) Finally be able to feel healthy again
7) No more taking handfuls of questionable medications
8) No more living off of Immodium AD
9) Seems like pregnancy would be easier & less risky w/ a j-pouch/colostomy, than it would be with colitis
10) No point in waiting for a cure that may never come or may come when I'm 80… What a waste of life!
11) Tired of wondering when the next flare will be, when this flare will end, what this food will do, etc
12) Even if I don't get colon cancer I could end up with other cancers or illnesses from all the meds- especially the ones like prednisone!
13) If the J-Pouch doesn't work I can always try the BCIR
14) Most of the things on the after-surgery diet restriction list I don’t eat anyway!
15) I feel like it would be better to have surgery when I'm young & not severely ill, that way I can heal beter & have a smoother recovery, instead of waiting until it's medically necessary when I might not bounce back so well
16) Even though it's scary I think it would be a large change for the better in my quality of life; even though it's not that bad at the moment it was and probably would be again
17) Most importantly... NO MORE ULCERATIVE COLITIS!
I too was worried about the surgery scars (I admit, I am vain) but with laparoscopic surgery, the scars are so minimal and with a good scar cream I believe they would be barely noticeable. Then there's the topic of the bag. I admit, this part freaks me out the most but think of it this way: If she were to go for the j-pouch surgery, it would be a temporary thing. Three months, maybe. Chances are she will be recovering during this time and not in the mood for doing anything that would show the bag anyway. She can request that the bag be placed low on the abdomen if possible so that it would be under her pants and when secured properly be very discreet. Then, once she has the second surgery no one would even know she's any different than them. People always say "You don't want that surgery, you'll never have a solid BM again!!" But honestly... if she's anything like me she probably doesn't have solid BMs anyway so it wouldn't be much of a difference, except that it wouldn't be accompanied with the pain and urgency which is the big problem anyway!!
Well I'm kind of rambeling here, but the most important thing I guess would be to research EVERYTHING, every aspect of the surgery, and when reading others' stories on websites like this or jpouch.org, remember that those people are mostly posting there because they are having problems and they are NOT the majority, and many people are very very happy with their post surgery life.
Good luck with whatever you and your daughter decide and I hope you continue posting here!
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; oste
openia in femur head & lumbar spine from long term prednisone use...
First Remicade infusion 2/5/09