When Health Care Is All About Making Difficult Decisions

On Halloween of 2015 I was preparing for a colectomy. I had been given a diagnosis of pancolitis only a month or so prior with no previous knowledge of my ulcerative colitis and I had been in the hospital since. I met with the colorectal surgeon often, he performed many colonoscopies and sigmoidoscopes on me in that time and he came to me and he said, “You are not getting better, the inflammation is not going down and we think a colectomy is the only way from keeping your colon from bursting, which is a very serious medical condition that can lead to death and requires an emergency colectomy that in turns eliminates the possibility for a later J-pouch surgery to take down the colostomy.”

• What is Ulcerative Colitis?

Ultimately I was looking at having a colostomy for a year or more. I was very sick with MRSA, PNA, PE, malnutrition, liver disease, etc. The surgeon said that this was an emergency surgery, but before I could receive the second and third phase I would have to be medically cleared. We went over all the risks and benefits. We had been going over them and debating this possibility for over a month now, but a month really isn’t long when you are talking about the possibility of losing an organ.

That evening the nurse came in to mark my stomach with a Sharpie in the possible spots where my colostomy could go. I will never forget her face or her words when I lifted my gown. She almost gasped, and she said, “Wow, you have an absolutely beautiful stomach.” She went on to say that the marking was routine, but a moot point for me since I did not have any rolls or skin folds that would be problematic for stoma placement. The tears were falling. She was very nice and I know she did not mean anything negative. But this was my stomach and I was angry. I did everything right, I ate healthy, I ran, I did yoga, I took care of myself, yet there I sat.

That night I thought long and hard about it. I knew the risks and benefits given to me by the colorectal surgeon and I am a registered nurse, so I know the implications. However, I felt like I had gotten slightly better over the month, not much, but slightly. So what if my scopes hadn’t showed that yet — I was in a major crisis and felt that if I could just get past it I would survive. I had just had a baby the month prior, which is how it got in such bad shape, and I knew that if I could just recover that I may not ever be healthy again, but maybe I could keep my colon.

I asked my nurse to call my GI specialist and she came right over, and to my surprise, she agreed with me! She affirmed something that I tell my patients all the time: It is my life, my body, and my decision. She said they would treat me post-hospitalization either way and that I would not be labeled as noncompliant! She spent a lot of time with me and she had seen the tiny clinical improvements. She couldn’t swear I wouldn’t die, but it was my decision.

I cried and cried. My husband was with me and we discussed it. He wanted me to have the colon removed, although I don’t remember him outright saying so. He was scared I would die. I have been wrong before, but I knew I wouldn’t; many times I felt like I might die during that hospitalization, but not at that moment. He was very assuring that I would not be a burden to him either way. I called and spoke to my mom and my sister, who is also a nurse. My mom was with my husband on this one, a rare occasion. But, Lish, my sister, understood what I was saying and agreed with me, too, and affirmed what I always believed, that it was my decision.

So, I called the nurse, and I said call the colorectal surgeon and tell him that I have thought about it long and hard, I have weighed my options, and I have decided not to have the colectomy that was scheduled for 4 a.m. I wanted him to be able to sleep in.

And that was that.

However, that being said, at least half the days since then that I have thought I should have had it removed. It has been the longest and hardest 15 months of my life. I have been very sick. When I am slouched over the toilet constantly, I think, I wonder what life would have been like if I had had the colectomy. Would I have had the reversal yet? Would I have had any complications? Would I be able to live a normal life? Would I be depressed? Would I be able to work?

My last colonoscopy showed major improvements. I had proctoidsigmoiditis with thousands of polyps from the inflammation. I still have some trouble with my liver, chronically fatigued, a lot of pain, a lot of bad days, a lot. I struggle constantly with my decision and wonder where I would be otherwise.

I will say that my decision is not your decision. Do not, I repeat, do not base your life decision on one that I made. All situations and illnesses are different. I have read so many posts about how so-and-so was cured from this miracle diet or that miracle drug or herb. So, I try it (trust me I have tried everything) and lo and behold, it does nothing or very little for me. We are all different, our bodies respond to things differently, the root cause of this illness is unknown, severities are different, and we just cannot hold ourselves to the standards of others. I am learning to accept where I am and try not to be too hard on myself because I did not respond well to this or that, or didn’t do as well as so and so, or as well as I thought I should have done.

The point that I am trying to make clear is that health care is all about decisions. Your decisions. It is not the doctor’s decision. They often word things in ways that make you feel like there aren’t any options. In my nursing career I have made it a point to be a patient advocate. Every day I have a patient who gets defensive as soon as I ask them about a medication, treatment, etc. They have been labeled as non-compliant for not following doctor’s orders. I say to them, it is not my place to judge you. What I can do for you is give you information and I ask that you hear me out. After that it is your decision. I may not support you if it is life-threatening, but otherwise I will. Whether you accept a treatment, medication, etc. it is a personal decision and when given the correct information and given that you are of sound mind, you own it. If you have consequences, you have to own that, too. You know your body. You know what has and hasn’t worked in the past. You are responsible for you.

So, gather all the information that you can from the professionals. Soak it up. Talk to your family, and listen to yourself. You have to live with this decision forever. It is yours.

Much love.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images