Posted 11/18/2014 7:35 AM (GMT -6)
Not sure how old you are but let me tell you how my life has changed since my surgery as a result of having crohns for 20 years (first one was an emergency with a loop ileostomy, second was 7 weeks ago to remove my large intestine and rectum).
Now that my ileo is permanent, Lily is perfectly round and small (between 1 inch and 13/16). I can now eat anything I want and I mean anything. I have been going slow with the raw veggies since my last surgery but other than that anything goes.
My quality of life has changed dramatically. As I have said before, it makes me sad to think back on how much I missed out on because of crohns. I missed my high school reunion, friend's weddings, parties, baby showers, trips, food and oh my god, I love to eat.......but most of all, I am heartbroken that I didn't enjoy my daughter's first few years as much as I should have because I was so sick. I couldn't take her swimming or to dance class, my husband did all of those activities. She's almost 14 now and I am busy trying to catch up on everything I couldn't do with her!
Since my first surgery two years ago, I have been to Paris, Frankfurt, Punta Cana, Florida, British Columbia, New York city, Maine and tons of camping trips with my family. I am able to attend any event I like (and even wear a hot, black dress!!!!), eat whatever food is served. I have a position in senior government and am able to travel for work, give presentations and attend business lunches and dinners without a second thought.
I walk, do yoga, swim, bike, skate, downhill ski, hike, zip line, scuba dive, whatever else my daughter decides she wants us to do. My husband and I have a better "relationship" than we have in the 20 years we have been married because I am not sore, sick or afraid of having to go to the bathroom when it's most inconvenient.......
Life with my ostomy, the care itself, takes me about five minutes every five days. It consists of me taking off my appliance, hopping on the shower, drying off and putting the new one on. I empty about 4-5 times thru the day (I drink a lot of tea and water so I have to pee ALOT......my nickname is TB = tiny bladder) so I take the opportunity to empty my pouch whenever I am in the bathroom. I also wear form fitting dresses and pants so I like to keep it empty.
I have not changed my bathing suits, work clothes, casual clothes. The only thing that is different is I wear higher waisted panties because I like to keep the pouch snug against my body. You will find everyone differs in how they wear their clothes. I have worn spanx and other tight fitting undergarments with no issues.
I haven't had a leak or issue in well over a year. When your stoma gets to be its final size, wear time should increase and you shouldn't have any problems if you have the correct appliance....which is all hit and miss until you find one that works.
I am not shy or private about my ostomy. I will talk about it and show whoever wants to know about it. This surgery not only saved my life, it gave me back my life and I couldn't be happier.
I was terrified in the beginning as well. I think what helped me the most was realizing how much better I felt IMMEDIATELY following surgery. Now, after seven weeks, I am starting to feel on top of the world again. I am so happy to have that diseased organ out of my body.
Good luck with your research. I didn't have the opportunity for a Jpouch because of the crohns but I am sure people will chime in and tell you all about their experiences.
Best of luck.