In a famous picture from the Lyndon Johnson presidency, he is sitting on a toilet, door open, while conversing with some news reporters. I guess it’s a form of multitasking. The irony is that his predecessor, John F. Kennedy, probably spent more time on the White House toilet than Johnson did by far.
Kennedy allegedly suffered from ulcerative colitis. In those days, high-dose steroids were commonly used to treat this condition. It is no surprise for the trained eye to notice some Cushingoid features on some of President Kennedy’s pictures. The round “moon” face is a common side effect of high-dose steroids.
The disease makes no distinction between rich and poor, kings and paupers — anyone can suffer the symptoms, which include frequent trips to the porcelain throne. These trips are not only numerous but often accompanied by tenesmus, a crampy violent contraction of the gut.
Ulcerative colitis affects Caucasians slightly more than African Americans and Asians. Persons of Ashkenazi Jewish ancestry seem to have a higher incidence than the general population. Affecting men and women almost equally, the condition can affect people of all ages but is rare in children before age 15 or so.
And that was the problem with Sister Claudia…
Claudia’s ulcerative colitis story
Sister Claudia is a nun who never met her parents. She was adopted as a baby from a refugee camp near Sarajevo. Her adoptive parents were missionaries who brought her to America. They lived in a small town in Connecticut, where she started experiencing symptoms of abdominal pain, bloating, and frequent diarrhea. She was 10 years old when her pediatrician referred her for her first diagnostic colonoscopy. It was a traumatic experience and totally inconclusive. No evidence of disease was found. This is actually not rare, as the condition has spontaneous remissions and exacerbations.
Claudia’s parents tried changing her diet, herbal remedies, potions, and even acupuncture. Nothing worked. Her inability to gain weight and anxiety about when the will of her gut would demand attention contributed to her avoidance of social situations. She found religion her solace and avoided dating early on. Intimacy with a man was something she gave up before she even took her first sex education class.
By age 19, she graduated high school and joined the convent, took her vows at age 22, and never looked back. It was about that time that the diarrhea became bloody. Claudia visited a major medical center and this time the bowel biopsy was conclusive: she had ulcerative colitis.
I met Sister Claudia when she was 45. She weighed 90 pounds and stood 5 feet tall. Since her initial diagnosis, she had been given a number of medications. Many of these helped for a while but then stopped working. She has been treated with various enemas, steroids, salicylates, and even immunosuppressive drugs. She knows the condition is precancerous so she must have periodic surveillance colonoscopies. In fact, she has had quite a few of these, and it never gets any easier. She is considering a colectomy, surgical removal of all or part of the colon. But while this solution is curative, it’s fraught with other issues. After all, the human body has a colon for a reason — taking it out is not without a price.
Claudia knows that certain types of drugs like opiates may relieve the pain but run the risk of causing a condition called megacolon. Basically, the effects of the medicine can paralyze the colon. It’s an unfair side effect because these drugs work wonders for her pain. In fact, the first time she was given intravenous morphine for one of her many bouts of crampy abdominal pain, she could not believe her pain was gone within a minute of the injection.
Religious faith led her to reach the inevitable conclusion that such a wonderful drug had to be God’s gift to mankind. And she was almost right, except for the fact she couldn’t have it. If used at all, it must be employed very sparingly and under careful medical supervision for a severe bout — one dose, maybe two, but no more. Greek mythology buffs may be reminded of Tantalus, who found the most refreshing water but could not bend down to get it.
Claudia finds relief
Sister Claudia had heard that an intrathecal infusion pump could provide a way around this issue, which is why she came to see me. Morphine administered via pump never enters the gut — rather, it is delivered straight to the brain and stays in the spinal fluid. Bowel paralysis is much less likely to occur.
After a very successful trial with the pump, she eventually had it implanted. Now receiving extremely small doses — in fact, micro-doses — of intrathecal morphine, Claudia’s pain is under excellent control, for which she is extremely grateful.
With her disease stabilized, Sister Claudia is on a regime of immune-modulating biological agents called TNF drugs. These belong to a new generation of biologic drugs that target immune system disorders at the root cause of the condition. While she knows that she has a good chance of needing a colectomy and the risk of developing bowel cancer is real, her outlook is bright. She has hope because her agony has been conquered, ending all of those painful trips to the privy.
Ulcerative colitis stole many things from Claudia, especially in her formative years. She now nurtures fellow disease sufferers in a support group.