When I was sick with Crohn’s colitis, there were not many choices I needed to make; the disease had made all of the choices for me. I didn’t wonder what career path was best for me; there was no career path. I didn’t wonder how many children I would like to have; there wouldn’t be children. I didn’t wonder what countries I wanted to visit; I was done with international travel.
Now that I’ve had ileostomy surgery, the world has opened up again with so many possibilities. These questions and so many more revolve around in my mind, waiting for me to make decisions.
I think I want to go back to school to get my Ph.D. and pursue a path toward becoming a professor at a university, but maybe that’s exactly the wrong thing for me to do. I could instead focus more on finding enjoyment in the job that I have, which allows me enormous flexibility and pays well (I work from home as a software developer).
I think I’ve decided not to have children at all – at thirty-two, I feel like I’ve just finally got my life back and I’m not sure I want to put somebody else first. But maybe this is just a reaction to where I’ve been, and I should take advantage of the fact that I am well now, and still in my child-bearing years. And how does this decision intersect with the decision I make about my career path?
These are the big huge gigantic questions in my life right now, but the choices and decisions to be made are everywhere, everyday, every hour. With no limitation anymore, rather than just one hard black road going straight ahead, there are vast networks of gorgeous trails spreading out like spider webs before me, and at each juncture, I get to make the choice that best suits me. I never know where any particular trail leads, but I love having the power again to decide which one to go down. I love dwelling in the forest of possibilities.
I found your blog randomly one day. this post in particular caught my attention because i feel so much the same way. Suffered with crohn’s since I was 10 and last year, at 28, I had a full colostomy. And the way you’ve described suddenly having your life back is exactly the way I feel. Suddenly being able to LIVE and have options. it’s almost overwhelming. And at 29 I’m also wondering if I even want to extend my family beyond my husband and myself (and the dogs!) We can suddenly travel to our favorite destinations without wondering if I wouldn’t be able to walk once we got there due to the disease. My life is so different. I’ve enjoyed reading about yours as well.
By: Courtney Turner on May 24, 2009
at 1:11 pm
I’m so glad that you’re having the same wonderful outcome as I have had. And it is comforting to know that I am not the only one wrestling with some tough life decisions now that surgery has made things possible that just weren’t before. I’m just glad that in terms of the family question I have a little more time before I have to make a choice!
By: lifewithapouch on May 24, 2009
at 7:08 pm
I also have a decision to make. Should I keep the ileostomy or have it reconnected to the internal pouch? I worry that it would be the same set of problems all over again if I get pouchitis and can’t wait to get to a bathroom. Did you have an option of an internal or external pouch?
By: Sandy on July 20, 2009
at 7:12 pm
Nobody gave me an option of an internal pouch. I’m not totally sure what it means to have the ileostomy reconnected to the internal pouch. If you don’t mind, it would be great if you reply with more information and/or if you go through with it, how it turns out. I’m sure it would be helpful to others as well.
By: lifewithapouch on July 20, 2009
at 8:26 pm
I had an ileostomy for Ulcerative Colitis in 1976. In 1992 I had it converted to a BCIR (Barnett Continent Intestinal Reservoir) because I was tired of leaks and showing through belly dance costumes and just making me feel unsexy. The BCIR was nice in the fact that it NEVER leaked and was easy to cover up. I even got a belly tattoo (see web site) to cover the scars when I started teaching belly dance so I didn’t need to cover at all. I just had to have the BCIR taken down due to multiple obstructions and infection. It was the end to 18 years of pouchitis, ulcers, torqued stoma, not being able to find local doctors who would look at me . . . basically a long scary time. I don’t like the bag, but I just had surgery 11 days ago and it still painful and leaking around the sutures. I’m hoping to find clothing to make me feel beautiful and products to stop the leaks.
By: Leslie on September 28, 2010
at 10:07 pm
Thanks for sharing your story. I hope that you find that the products have improved since the last time you had an ileostomy, and that you have better luck in terms of leakages, etc. I know every body is different. I have a friend who can go seven days with Hollister products and not have leakages. I haven’t been that lucky, but have finally found a combination that gets me four days without leakages, which isn’t too bad. I use Coloplast products but with a Hollister barrier ring instead of the Coloplast one (and I only use half the barrier ring). I know each person’s beautiful is different, and each person has to go on her own journey to find the right clothes, underwear, swimsuit, etc., to feel that way. But I’m confident that you will find your perfect get-up!
By: Emily York on September 29, 2010
at 6:59 am