I agree with ByeByeUC- I definitely knew when I was ready for surgery. By the time I came to my final decision, I wanted surgery so badly that I got a bit annoyed when people would try to talk me out of it or when they would mention some supplement that was a certain fix for UC that I should quick try. They had no idea how much research I had done... or the incredible amount of thought that I had put into the choice. I was done. I was tired of being ill and just wanted my colon out so I could move on to living life to its fullest.
For me, surgery was one of the best decisions I ever made... but I was very logical about
it. I did as much research as I could in during the short time I had to make the decision. I called acquaintances that I knew had gone through either permanent ostomy surgery or j-pouch surgery to hear about
their experiences. One even came to my hospital room to show me her appliance. I talked to people who were on Remicade. I emailed complete strangers with ostomies who were into the same types of outdoor activities I loved. I searched out and read about
every resource I could find on the net. I took all that information and put it through my personal filter of goals and values. I did a lot of soul-searching and really looked at what choice was the best for what I wanted out of life... what I cared about
... what fit best with activities I loved most. After all that is when the decision for me became clear. I wanted a permanent ileo. But for other people, the results of their research and their for goals may lead them to other treatment options or other surgery types.
Truth is, drugs and surgery both have risks. For ileostomy surgery, the most common complications and risks tend to be things like slow incision healing (this is the only complication I ended up having so far and it resolved), hernias, infection, appliances that have trouble sticking, skin irritation... food blockages. All of these can be remedied through some pretty straightforward steps that surgeons and nurses have a lot of experience with. When I had horrible joint pain from one infusion of Remicade develop, the doctors were quite perplexed. They had no idea why it was happening, no idea how long it would last or if it would go away, an no idea of what to do about
it. I pretty much had to wait it out and hope it went away. It all felt very experimental, and I didn't like that. So I was drawn to the more predictable nature of the surgery option. In fact, this is the reason I chose a permanent ileo instead of a j-pouch... I felt that the results of this surgery type were more predictable. I just wanted to get my colon out, learn to live with my appliance forever and move on with life. Again, this was based on my values, and another person may come to a completely different choice. I will say that now that I am 8 months out, I am 100% happy with the route I chose. The results of my permanent ileostomy are all that I had hoped for, and I am already getting my life back in more ways than I ever would have imagined for this soon after surgery. I am out hiking, backpacking, running, snowboarding and working full time in the career I love again. Life is very, very good.
As far as resources... I am not sure for the j-pouch route. For otomies, most larger towns have chapters of the United Ostomy Association of America. They have monthly meetings, and it is not uncommon for people who are contemplating surgery to stop by a meeting to hear people's stories and get info. The local chapters may also have visitors who will come out and talk to you. There is a book called the Ostomy Book which has good info, though it is a little outdated. A few of my personal favorite web sites are:
Uncover Ostomy- http://uncoverostomy.com/
Great Comebacks- http://www.greatcomebacks.com/us/stories/community_main.shtml
Both share stories of people who have successfully gone through surgery and living life to the fullest.
I also really like the Pheonix magazine put out by the UOAA for the same reason (United Ostomy Association of America)- http://www.phoenixuoaa.org/
Take your time if you have the luxury of that, but also be proactive in getting the resources and information you need when you do have the opportunity. Go talk to a CR surgeon... you don't have to be knocking on surgery's door to start the conversation. It is fine to make a consult just purely for information. Then if it ever does come to surgery for you, even if it is a while down the road, you will really feel good knowing you have the knowledge to make a wise decision... and a surgeon you have already worked with and trust.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010
Post Edited (Blueheron) : 7/13/2011 8:50:35 AM (GMT-6)