I can relate to your post in many ways. I too was faced with the surgery decision last September. I also came to this site with questions and for support.
I am 38 years old. I had UC for about
10 years, and though every colonoscopy showed that it was progressing, it was still moderate. My main symptoms were pain and lots of bleeding. Even while in my "remission" I always bled and often became anemic, but because I only had diarrhea occasionally, I was able to limp along and still do most of the things I enjoyed. I don't feel like it negatively impacted my life as badly as some people on this forum. I had to take rounds of Prednisone a couple of times a year when I would have more major flares, but that, Asacol and Rowasa usually did the trick. That all ended in September when I experienced a severe flare. I ended up in the hospital for two weeks and no amount of Prednisone did anything. I was losing over a pound a day which terrified me. My once strong body (that had been climbing peaks and on an off-trail backpacking trip just three weeks prior) now looked like a skeleton. I remember one night collapsing in my hospital room because I was too weak to stand. I could not believe how fast this severe flare had come on and how quickly it seemed to be destroying me.
Once I stopped responding to Prednisone, the GI docs at the hospital gave me two choices: try Remicade or have surgery. I was in a bit of shock as my UC had never been this bad. I felt I was being thrown into a major decision pretty quickly. I hated the idea of taking that drug (because I didn't like the risks) every 8 weeks for the rest of my life, and was actually leaning toward surgery. Still, I was so weak that I didn't think the surgery would go well, so I tried the Remicade to buy me some time to gain health and make sure I was making a good decision. If I showed no improvement in the week after the Remicade infusion, the doctors informed me that I would be scheduled for emergency surgery. In fact, things were looking so tenuous that the general surgeon at the hospital started visiting me every day and explaining the procedure just in case. Fortunately, Remicade did begin to end my flare, and I was eventually released from the hospital. However, the day I got home I developed horrible joint pain from it. I couldn't walk and it felt like someone was stabbing all my joints with ice picks... it was the most excruciating thing I have ever gone through and no pain meds relieved it. I said enough is enough, and cancelled my future infusions. Fortunately, the joint pain slowly dissipated in about
6 weeks once the medicine left my system. In the meantime, I was very afraid that I was going to be left with this permanent side effect of the Remicade.
That left surgery as my only option. The one infusion of Remicade did buy me some time and allowed me to meet with one of the best colorectal surgeons in our area. It also healed my colon enough to put me in a fairly strong and healthy state for surgery. Of course, I started to have tiny second thoughts thinking if I was feeling so much better, why was I getting surgery? Still... I knew since Remicade was out of the picture, my chances of staying in remission were pretty slim, and that I would be in the hospital again in no time. Better to just get rid of my sick colon and move on with my life.
I decided on a permanent ileostomy even though I would have been a candidate for a j-pouch. I am an interpretive park ranger and lead 2-hour hikes and nature programs, and I didn't want to have to worry about
using the restroom frequently... which I was told by my surgeon sometimes happens with a j-pouch. Rock climbing is also one of my huge passions and, after talking to a few climbers who have ileostomies, felt that this option would be easier to manage up on a rock face on a long climbing route. I could swap out a ostomy pouch at a ledge if needed and pack it out. One thing I loved about
my surgeon was that, though he was skilled in both types of surgeries, he never tried to persuade me to try one over the other. He gave me the pros and cons of each and was supportive of whatever I wanted to do. He did say that he thought the permanent ileostomy was a fine choice though, and very conducive to my lifestyle. He said I would be able to do all the outdoor activities I loved with it.
It did take some of my family and friends a little while to come on board with my decision, but once I explained my reasoning, they were completely supportive. Part of this was probably because most of them didn't even know I had UC before that point, and I am sure it seemed sudden and drastic decision. I was pretty secretive about
my disease... even my brothers didn't know. My mom, who is a nurse, actually did not want me to take the Remicade because of the risks and wanted me to get the surgery. I do think that when some people hear that I chose the permanent ileostomy over the j-pouch right away, they seem disappointed... as if this type of surgery and having a "bag" is the ultimate failure. I don't feel that way at all... I am so happy with it and have no regrets! Everyone's needs and situations are different, but I think it was the perfect choice for me.
Like you... I would have rather had my job than my colon. Interpretive Park Ranger jobs are not easy to get. It was a career I had wanted to pursue since I was a young girl. I had worked years juggling seasonal employment to finally get the good position I have. I did not want to lose my job because of sickness. I was able to return to work eight weeks after my surgery. My incision did
open up again a few weeks ago and I had to go back to surgery and miss some more work (long story, but basically I discovered I had an extremely rare reaction to the PDS sutures used in the muscles of my abdominal wall). I am now back at work again, and though I am mainly doing desk work for now, I did lead a fun nature program for preschoolers a few days ago. It felt so good to be back to a state of normalcy and doing what I love.
Hope it helps and best of luck with your decision.
-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 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010
Post Edited (Blueheron) : 2/7/2011 10:46:36 AM (GMT-7)