The surgery for ulcerative colitis is called a colectomy. It is the only cure. Essentially, surgeons remove the lower intestine and reconnect the digestive tract. Who ever thought they needed a colon anyway?
The entire process actually consists of two to three surgeries. In the first surgery, the colon is removed laparoscopically - several tiny incisions are made in the abdomen. It takes about a week on morphine in the hospital to recover from the first surgery, then four or five weeks at home. It is extremely painful. Just to imagine, an entire organ is removed and stomach muscles are cut. With the first surgery comes a contraption called an ileostomy bag. It's not the most romantic thing on the planet, trust me. Because the patient doesn't have a colon anymore, waste has to go somewhere. Surgeons turn the intestine inside out and create a stoma, or opening in the stomach, where waste can leak out into the ileostomy bag.
In the second surgery, surgeons reconnect the digestive tract. The ileostomy bag goes away and the patient looks normal again, except for the scars. It takes another week on morphine in the hospital and then four or five weeks at home to be able to do simple activities. All in all, it actually takes six months to one year to recover. Right after the second surgery symptoms get worse. Because the purpose of the lower intestine is to remove water from waste, people who get colectomies will have diarrhea ten times a day for the rest of their lives. But..no pain spasms, internal bleeding, horrible drugs, time off or dietary restrictions.
In general, doctors' mantra is that it is better to heal the colon than to lose it. After all, it's no appendix. Lots of people with UC lead healthy lives and have successful careers. A great example is my dad. In addition, there may be new treatments in the future. As long as I'm not the hospital, there is no rush to get surgery. The surgery has serious risks, including contamination of the peritoneal cavity, peritonitis, sepsis and death. In addition, since it involves surgery in the pelvic area, there is a very real chance that I would never be able to have children. That's a scary prospect and something that will have consequences for the rest of my life. I can always have the surgery in the future, so it's better as long as I can survive without it.
The two-step surgery is relatively new. Before, people had colostomy bags for the rest of their lives. In fact, my doctor at Georgetown Hospital would give me a colostomy bag until I had children in order to avoid the risk of infertility. There is no way I would want a colostomy bag for 20 years, but luckily my surgeon at UCSF doesn't share the colostomy strategy. Another concern is how people age with the surgery. Because it's so new, doctors don't know! Like any surgery, it might require future surgeries with advancing age. At the same time, as my surgeon at UCSF Medical Center told me, "No one ever regrets surgery!"
I have been struggling with the question of surgery for almost a year. Last fall, I was sick enough that there was no question that surgery was the next step. However, I eventually responded to an immunosuppressant that makes me functional, so surgery isn't entirely necessary at this point. Still, if I don't go into remission, I will have to have surgery. Having an inflamed colon for a long period drastically increases the risk of colon cancer. The way I think about it, if I were dead, there would be no point in not being able to have children, so that risk doesn't count. Besides, if I were really sick after resisting surgery, I wouldn't be able to take care of children anyway. If I had surgery, my future would be much more certain. I wouldn't have to worry about having a flare-up overseas and my opportunities would open up. I could live abroad and party every night! Ha, right.
More importantly, I wouldn't have to worry about having a flare-up in the future. As it is, I sometimes hesitate to make plans months in the future because I have no idea if I will be well enough to do anything. Obviously, there are advantages and disadvantages to the surgery. It is a decision that I will have make on my own because I am person who really knows best. Although that's a scary thought, I am also confident that I will make the right decision. Sometimes I feel like I have just had enough and I would take surgery over the struggle of getting to class every day, but I have tried not to be too hasty. In the end, I know that I will healthy one way or another. The hardest part is the fight for remission. And even if there are harder times ahead of me, as long as I try to take each day as it comes, I will be fine.
To get a good idea about what the surgery is like, my friend had a blog when she had surgery. Don't read it unless you want to feel nauseous and know disgusting details. But then you will really understand why the surgery is no fun.
http://kelly-uc.blogspot.com/
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