How do doctors deal with patients who have incurable disease?

Ever wonder if your doc gets frustrated over not being able to cure incurable disease. Do you worry that you are only darkening the door of your physician, sorry to trouble them over something they cannot cure anyway? A reader asked, and I answeredHow do doctors deal with patients who have incurable disease?

A reader asked:

I’m truly curious as to how doctors deal with the frustration ofdealing with people they can’t, despite their best efforts, cure. I’m wellaware that my doctors are doing their best and that there isn’t a cureor quick fix — I wonder if they know I know that (and of course, I dotell them). Nonetheless, sometimes I hate to even darken their doors withyet another complication or flare-up — perhaps because I am so fond ofthem and appreciative of their efforts. I sometimes think we patients –with all our kvetching — would benefit from an understanding of our physicianson this human level. It’s not a topic I’ve ever seen or heard addressed.

Oh, yes, this is a common question of Doctors. Well, I think it is. I actually haven’t canvassed my fellow physicians on this one, but I have had friends ask me. 

Actually it is quite easy. Starting out in medical school, one imaginesthat you will become a docto n sae lives. Then you got on the wards, andthe livess are not that easy to save. After the shock of realizing thatone is unable to cure everything, the young physician learns to do thebest they can. I think ther ismoreto it then just the best that you can.For myself, I have also found a way of looking at the issue that workswell for me. I have decided that my role is to give advice. This has mademe much more comfortable. My ego is no longer dependent on patients takingtheir medicines. Nor does my ego anymore depend on the virulence of someonespnuemocccus. By realizing that I give advice, I am in balance with my abilityto impact the world. When a patient is not able to follow my advice, Ino longer feel frustrated, I look for ways to give better advice. Whenthings do not work as planned, I recognize that information is imperfectand I look for more information in order to give better advice. When Idecide on what initial tests to do, I do not fear not getting every testpossible. I get sufficient tests to allow me to give reasonable adviceunder the circumstances.

Say someone has a terminal disease. I find out what last things theywant to do: such as get to their sons graduation. Then I give advice onhow to best achieve those goals. Sometimes the effort will need to be greatto get a few extra days, but it will be worth it. With Crohn’s, I knowwhat the odds and consequences are of different choices, so I give adviceon how to deal with problems as they occur. As advice depends on goals,it is a natural extension to involve my patients in the decision makingprocess, not to decide what is the correct thing to do, but to help meunderstand what different consequences mean to my patients, so that theadvice I give makes sense in the patient’s contest. So my measure of successis whether the advice caused the best possible outcome given the circumstances.

So the next time you worry you are darkening your docs door, remember that you are not there for a cure, you are there for advice. By having a physician that understands your situation and goals, and by providing feedback on how the disease and treatment are being tolerated, you will be able to get advice to help you deal with the situation at hand.

Best of Luck, 

Stephen Holland, M.D.
Section of Clinical Pharmacology
University of Illinois College of Medicine at Peoria

You want to get Pregnant while on Azathioprine?

Many women with Crohn’s are on azathioprine, an immunosuppressant. What should you do if you want to get pregnant while on azathioprine?

The subject of pregnancy and inflammatory bowel disease has been writtenabout extensively. Treatments are changing, and one worries about the effecton the unborn child. One reader wrote the following:

Thanks for an informative web page. I also subscribe to the IBD list and appreciate your comments. I have looked through some old IBD posts and saw where you said taking Imuran when conceiving a child gave you the willies. I was diagnosed with Crohn’s in 1993. I am now 27 years old and my husband and I want a child. I have been taking Imuran (50 mg a day)since November 1994. My GI has reluctantly agreed to let me try to taperoff Imuran. He feels Imuran is the reason that I was finally able to taper off prednisone after 3 years. I have been on Pentasa since March 1994.My GI feels that I will have a flare up when I discontinue the Imuran andthat would be a greater risk to the baby than the risk of birth defectscaused by continuing to take Imuran. My OB says the Imuran is unsafe duringpregnancy. I also would like to breast feed and Imuran would make thatimpossible. I’ve been told by my GI and OB that Pentasa is safe during pregnancy.

The above situation is a real example of the problems that face onewho is contemplating pregnancy with Crohn’s. The physicians seem to begiving contradictory advice. Actually, each is concerned about the outcomefor the patient, and different factors come into play. 

While no one advocates the use of Azathioprine in pregnancy, the reportsof the outcomes for patients on azathioprine who get pregnant seem to beno worse than the results of patients with untreated Crohn’s. That is tosay, fetal loss is common in active Crohn’s and also when on azathioprine.The incidence of birth defects is not higher when on azathioprine. My interpretationof this is that if azathioprine causes birth defects in a given pregnancy,they are so severe that the fetus will not survive. There was some controversya while back on what the effect of pregnancy on Crohn’s is. I think theliterature pretty much now shows that people respond variably, but thatif Crohn’s is active at the time of conception that things will probablynot go well. 

All that said, most drugs used in treatment of IBD have been found tobe safe during pregnancy. Steroids are known to be safe, as is sulfasalazine.Mesalamine is probably safe during pregnancy. Flagyl is not to be used(though the data I recall are just scattered case reports, and the warningto not use it may not stand up in the future). 

Remember that many people were successfully treated with medicationsbefore azathioprine came into common use for Crohn’s disease. While azathioprinemay be used to get a patient off steroids, the situation generally is notthat steroids were ineffective, but that steroids were needed chronicallyand side effects were a concern. 

My feeling about this is that since pregnancy is self limited in duration,getting off azathioprine at worst will mean 12 to 16 months of steroids.If the Crohn’s can be controlled with other medications, then all the better.In general, I would advise patients on azathioprine to get off the azathioprineand start steroids, a form of mesalamine, or both depending on circumstances.Also, I generally advise Crohn’s patients to avoid anything with sucrosein it, since some studies in the past showed a 50% reduction in complicationsof Crohn’s when that was done. 

The above notwithstanding, there is the possibility that a particularcase of Crohn’s was so bad that even the thought of recurrence is painful.I could imagine someone who had multiple fistulas, obstructions, operationsand wound failure, was starting to get cataracts, and who only got outof a cycle of repeated hospitalizations when put on azathioprine. A casesuch as that might warrant the risk of azathioprine. 

I cannot tell what is the right choice, however. This will depend onhow the risks sound to you and many aspects of your views on life, death,having children, and dealing with birth defects. It is not your responsibilityto make the medical decisions, but the input to your physicians on howyou value the various outcomes will let your doctors, who have a sensefor the relative rates of occurrence of the above outcomes, give betteradvice on how to proceed. 

Best of luck in your efforts!

Stephen Holland, M.D.
Section of Clinical Pharmacology 
University of Illinois College of Medicine at Peoria 

Sucrose Restriction in Crohn’s Disease

There were some papers in the past that found that sucrose restriction can prevent recurrences of Crohn’s.

Can reduction of sugar intake reduce the risk of complications of Crohn,s disease?

Since the mid 1970,s it has been known that patients with Crohn,s disease consume more sugar than patients with ulcerative colitis or normal subjects.  In this discussion, it is to be understood that sugar means the disaccharide sucrose, which is also commonly known as table sugar.  Initially, two studies from Germany showed that patients with Crohn,s eat more sucrose than healthy controls (23,28).  A number of studies since then have confirmed this finding (37).

The usual teaching is that this is due to patients changing dietary habits to accomidate their inability to tolerate many foods.  However, patients with ulcerative colitis who often have similar digestive complaints do not have increased sucrose intake (11,24,34,38).  Also, patients who have Crohn,s report that when they get sick their sucrose intake actually drops rather than increases.  Other studies show that symptoms are not changed when sucrose is restricted (1) and one study suggested that sucrose worsens symptoms (1).

Studies have been done to look at whether restriction of sucrose intake is of benefit in patients with Crohn,s.  In a study of 64 patients with Crohn,s (7), 32 patients were put on a diet which minimized sucrose and white flour, and substituted whole wheat and fruits.  While the experimental and control groups were in different clinics, the treated group had 80% less days in the hospital and only 1 patient required surgery compared to 5 in the control group.  (Interestingly, this experiment was done before the first epidemiological studies reported increased sucrose intake in Crohn,s patients).

In a larger study, results were not as beneficial (35).  190 patients treated with sugar restrictin compared to 162 treated with usual diet showed that 3.7% of treated patients needed surgery compared to 8.6% of controls and hospital admission rates were 9.5% in treated patients and 13% in controls.  These numbers did not reach statistical significance.

K. W. Heaton, one author of the 64 patient study described above (7), noted that in the 
larger study of 352, patients were British and were asked to consume fruits and vegetables, a decidedly unBritish activity.  Also, the control group showed a drop in sucrose consumption, which makes it possible that the control group was really a partially treated group.  Unfortunately, a subgroup analysis was not reported with controls who did not reduce their sucrose intake.

I regularly recommend that my patients reduce or eliminate sucrose in the diet.  I allow commercial bread, which does have some sugar added, but I advise that patients do not consume anything with obvious sugar in it or sprinkled on it and do not add sugar to drinks or when cooking.  (I suspect that fermentation will have consumed the sucrose in regular bread, but not sweet bread). I recommend that a safe substitute is honey, which is fructose.

Stephen Holland, M.D. 
University of Illinois College of Medicine at Urbana-Champaign. 
©1997, Stephen Holland.

This material was abstracted from the chapter “Dietary Factors in the Etiology of Crohn’s Disease written by K. W. Heaton, in Inflammatory Bowel disease edited by Gunnar Järnerot, Raven press 1987.

Selected References:

1. Brandes, J.W. and Lorenz-Meyer, H. Zuckerfreie Diät: eine neuer Perspektive zur Behanndlung des Morbus Crohn?  Eine randomsierte, kontrollierte Studi.  Z. Gastroenterol., 19:1-12, 1981.

7. KW Heaton, JR Thornton, PM Emmett.  Treatment of Crohn,s disease with an unrefined-carbohydrate, fiber-rich diet.  Br. Med. J.  2:764-766, 1979

11. G Järnerot, I Järnmark, K Nilsson.  Consumption of refined sugar by patients with Crohn,s disease, ulcerative colitis, or irritable bowel syndrome.  Scand. J. Gastroenterol.  18:999-1002, 1983.

23. GA Martine, JW Brandes.  Increased consumption of refined carbohydrates in patients with Crohn,s disease.  Klin. Wochenschr. 54:367-371, 1976.

24. GA Martin, A Stenner, WJ Brandes.  Diet and ulcerative colitis.  Br. Med J. 2:1401, 1978.

28. B. Miller, F Fervers, R Rohbeck, G. Strohmeyer.  Zuckerkonsum bei Patiententen mit Morbus CrohnVerh. Dtsch. Ges Inn Med.  82:922-924, 1976.

34. GB Porro, E Pnaza.  Smoking, sugar, and inflammatory bowel disease.  Br. Med. J. 291:971, 1985.

37. JR Thornton, PM Emmett, KW Heaton.  Diet and Crohn,s disease: characteristics of the pre-illness diet.  Br. Med. J. 2:762-764, 1979.

38. JR Thornton, PM Emmett, KW Heaton.  Diet and ulcerative colitis.  Br. Med. J. 1:293-294, 1980. 

©1997, Stephen Holland.

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