Colostomy story

I knew a white middle class woman for decades in my practice starting when she was perhaps in her early thirties—a hard worker, nice looking, socially competent, and a local entrepreneur. She was self-employed and because of the cost of health care premiums, would come in and out of my practice over the years depending on the best deal she could get from the insurance options determined yearly. Her continuity of care with me and other primary care providers was not especially good because of this approach.

She had good continuity of care from the only gastroenterology group in town: she had a bad case of Ulcerative Colitis (UC)—and they largely managed this condition for decades regardless of her insurance coverage.

Much of the  medical care directed to her UC had changed since I last saw her. It was now state of the art. She was receiving bi-monthly shots of Remicaid and this treatment had proven to be nothing short of miraculous. Compared the the traditional oral medications used for it—and what I remembered her using when I was involved with her care, this was by far the best and allowed her to function, “like a normal person.” She had affordable co-pays and the bi-monthly need for several hours observation with the injections.  She had come back to me because as health premiums had gone up, she found a plan with my company that seemed to be a relatively good financial compromise. She assumed the costs for her Remicaid would be stable and as they had been the year before.

Remicaide is very expensive.

Within a few weeks she presented, without an appointment, and quite angry. “Do you know how much Remicade is going to cost me?  Thousands of dollars every eight weeks and I don’t have the money!”  She had skipped the infusion when she found out how much it would cost and she was beginning to experience the very difficult symptoms of uncontrolled Ulcerative Colitis—something she had not experienced for years.

I had no influence “fixing” her insurance problem. I could not mandate she get a break. She could not change insurances until the end of the calendar year—there was a contract. I put her on prednisone (a strong steroid) which would calm her symptoms but which was not a long-term solution given its side effects.

I called her gastroenterologist. He in turn was as angry as she was. “How can the insurance deny her this coverage? It is  the state of the art treatment for her condition and she is stable on it!”  Just like our patient, there was an unspoken assumption that somehow I could fix this. My response: “Look, I don’t run the insurance company and she made a poor choice hoping to save money. She is stuck; she doesn’t have the money for Remicade, so what would be doing for her if it was say, 1980?”  1980 predated Remicade.

I told him I had started her on Prednisone and he went through the drugs that a could be re-tried in her case. He suggested that I also refer her to a surgeon. One possible treatment for Ulcerative Colitis is a total colectomy.

I had the conversation with my patient and we initiated one of the treatments and I made the referral to surgery.

She returned some months later. She had had a total colectomy and now had an ileostomy, which meant she had, “the bag” to collect all her fecal material. Ileostomies are messy and I was shocked and not a little surprised. I also felt guilt and sadness. What a terrible outcome—and once more, one that most of us would delay as long as possible.

I was surprised when she made eye contact, smiled, and said, “You know, this was the best decision I have ever made for my health. Managing this bag has simplified my life which had gotten so complicated with my disease. It’s crazy, but I prefer this to all the hassle and expense of Remicade (mind you, the state of the art treatment).

Robert F Kennedy Junior would likely agree!

As I thought it through after our visit, it occurred to me her decision would have been harder when she was not on the verge of retirement, or seeking dates, or competing athletically. But, sometimes…….things don’t turn out like you thought they would…….and you would think some of those things are the worse thing that could possibly happen……and when it happens, it isn’t what you thought it was…………..and the world does not fall apart even in the absence of the “state of the art” option. This is a practical but definitely psychological adjustment and she was quite successful with whatever she did to come to this dramatic conclusion of her disease.

A huge number of us in the  current political climate are facing or will face many colostomy choices —unpleasant choices required because of a changing system..  I think many of these are horrible choices but I don’t know how much it will change the world or how we will accommodate ourselves to this new reality. We will all need to reach down and make psychological adjustments with an eye on practicality—what is the problem to be solved and what are the variables: costs? Service? Ease of living? Length of living?  What are my priorities personally and my focus over the next year?

If you work in eduction, you can expect a change in budget management and directives on curriculum. That was happening before the election so what direction will this take state-by-state? If you are in social services-same. If you in many commercial enterprises, the changes required to re-establish serious manufacturing in the USA will take a decade and that assumes no future change in administration or legislative majorities. Big ifs! If you are in the sciences, you are definitely going to have a colostomy choice. What are your priorities and focus?

Lawyers are likely to be the exception. Looks like there will be lots of work for lawyers.

An epidemic under the current administration will be telling—Health care change will clearly affect us all but the poor and middle classes will feel it the most.. For-

profit health care in the absence of a government mediated counter weight will even affect the rich.  What I do know, is there is enough money in our society to rationally and widely cover modern treatments if practical and knowledgeable people develop the systems of care we not only need but should take for granted—as the citizens of most of the first world already do.