Surgery: The Elephant in the Room
I had to call in some back up for this post, not for the writing or interpreting data but whether or not I should actually write it. First I asked a practicing IBD expert whether it may unduly frighten people and then I went to a LIFE expert, my mom. She’s been by my side through a lot, far more then I would have ever wanted her to see but oh well. In considering whether to write this I was cognizant of that many of my readers have children with Crohn’s so I needed my mom’s valuable perspective of whether she would have wanted to know the risks surrounding surgery earlier. My writing on this topic this tells you how she felt.
I asked her “Do you ever remember being told about surgery in Crohn’s disease?”…neither of us had and ultimately we wondered why the first time surgery was discussed with me by my GI doctor was in September of 2014. Yes, the first time surgery was discussed with me was 7 years after being diagnosed and after I had seen 3 GI doctors. Say what you want about health care professionals being stretched too thinly but in my opinion there’s no excuse for not educating a patient after years of a doctor/patient relationship in the outpatient setting. I understand that surgery is a topic no one wants to talk about, especially when you are feeling good or in remission, but if you can count on one thing with Crohn’s disease it’s that it is has a dynamic natural history and you shouldn’t ever rule out the possibility of needing surgical intervention. It became abundantly clear during my conversation with my mamma that we both wished we knew the information about surgery, even if it meant discussing this taboo subject when I felt good. I’ve been told people don’t like long posts so I am going to try my best to break questions into multiple posts so that people actually read the information.
The best way I know how to answer questions is by referencing the scientific literature and in an effort to engage as many people as possible I am NOT going to do in depth reviews of every study published. Know that I am not a scientist or a doctor. I am a patient and a medical student (aka I know nothing) with a lot of translational research experience for my age and I hope to someday work in academic medicine. The questions I will raise in this and subsequent posts of the series areas of active research so the studies I reference (and particularly my interpretation) are by no means law. My blog is about connecting with patients and their families through shared experiences and hopefully using my interest in research to translate some pertinent scientific data. Therefore over several posts I am going to select a few important or landmark studies to use to explain to patients/families about surgical risks rather than writing a review article intended for health care professionals or scientists. So let’s get started.
How many patients with Crohn’s disease require surgery?
Published surgical rates vary based on several factors which are mostly beyond the scope of this post. Two of the broadest, which I will mention, are the region in the world where the data was collected and how patients were recruited (population based or referral center). European studies and those performed at referral centers generally report higher surgical rates compared to studies from North America or those performed on the population level. To show the proportion of patients with Crohn’s I am going to focus on an important population based study from the United States. In the future (if there is interest) we can take a look at some of the European or Canadian population based studies.
This study doesn’t have all the answers but it is one of the most highly regarded studies on surgical risk in CD from the United States. The study was possible because of a large epidemiological project funded by the NIH in the 1960’s and because Olmstead County, Minnesota is an interesting little ‘petri dish’ ideally suited for population based studies. At the 2000 U.S. census there were about 124,000 residents who virtually all received health care from 2 organizations (Mayo Medical Center and the Olmsted Community Hospital) in 3 separate hospitals. The authors state that in any 3 year period over 90% of the residents are seen between the two health care systems and diagnoses have been recorded since 1908. This allows for detailed tracking of patients with specific conditions over time.
Between the years 1970 and 2004 they identified 310 new (incident) cases of Crohn’s disease and were able to follow them for a median time of 12 years. Of these 310 cases, 152 (49%) underwent at least 1 major abdominal surgery (defined as any surgery except perianal or endoscopic procedures). Of the 152 with 1 surgery, 65 required a second abdominal surgery. Among the 65 with 2 abdominal surgeries, 32 required a third. If you look at data in 5, 10 and 20 year increments, the rates of surgery increased from 38%, 48% and 58% (see the photo below). The reasons why these 152 patients required abdominal surgery are shown in the pie chart below.
There are several interesting findings from this study so for those who are interested or are scientifically inclined I would encourage you to follow the hyperlink above to access the full article and give it a read. This study raises other questions that will be addressed in other posts.
Take home message and adjusting our attitudes
If you look over time at patients with Crohn’s disease, surgical intervention is quite common (occurring in nearly 60% of patients at 20 years). The high proportion of patients requiring surgery is consistent across studies no matter their country of origin, some report higher some lower. I am not mentioning this fact to frighten people instead it is just something important to keep in mind if your doctor begins to discuss surgical intervention. I have found that learning more about surgery (unfortunately post-operatively) has begun to change my attitude towards it. If you had asked me a year ago I would have said it was something that should be avoided at all costs but admittedly this was not supported with any knowledge of the actual data. As I continue to learn and progress as a patient, I am realizing that I should have been more open to an elective surgery. As I will show in a part 2 of this discussion on surgery, that there are several advantages to undergoing an elective procedure which, had I known, would have opened me up to the possibility of surgery sooner rather than undergoing a perforation.
Questions I hope to answer in upcoming posts:
Are there advantages to planning a surgery over having an emergency operation? If so, what are they? What are the biggest risk factors for surgery? Can patients reduce their surgical risks? Why does the rate of surgery increase over time? Are the current biologics reducing the rate of surgery in Crohn’s disease?
Please comment with YOUR questions about surgery so that I can look at the literature or perhaps see if there is any new data at DDW 2015 to answer your question.