A year in review

Yesterday I had the opportunity to speak with a representative of the Magnet review board about patient engagement initiatives led by our wound care team. I was humbled that they would ask me to speak on behalf of the people who’ve helped me so much in my continuing recovering/adjustment to life as an ostomate. It also was a good opportunity to reflect on some of the changes that have happened in the past year.

A year ago we laid out several goals and here is the status on where we are toward achieving some of those goals.

  1. CCFA patient support group: The group for adult patients (>18 years) with IBD just had our third meeting. We meet monthly each second Tuesday and attendance has been steadily growing. This group would not have gotten off the ground without the hard work of the two co facilitators who are two really great people. I think it has been successful and I am learning so much more from other patients its fascinating.
  2. Pre-operative education pathways: One of the wound care nurses had been pushing for pre operative patient education pathways (to describe procedure, mark stoma location, answer questions/allay fears etc) for quite a while before I had anything to do with this. These pathways have been solidified for urology patients and expanded to include patients of the colo-rectal surgeon. Now all patients with a scheduled ostomy procedure will have a standardized educational session with an certified ostomy nurse. This is an essential step toward providing high quality care. More work is needed to ensure oncology patients are receiving similar education/counseling.
  3. Printed educational material: When I was an inpatient I was given a book with a list of questions and local resources for new ostomates. This was overwhelming and I couldn’t comprehend any of the information. As I got stronger I was able to digest the information and recognized changes needed to be made. I spoke with the wound care nurses and they were actually just about to start updating these books.
    1. With the goal of making evidence based, PATIENT CENTERED guides we completed the ileostomy companion booklet and have rolled changes out to the colostomy booklet. The next steps are to similarly update the pediatric and urostomy booklets.
    2. The first thing patients or parents read when they open these books is a short message written by a local patient reassuring them that yes right now this is overwhelming but they will be OKAY. Having an immediate sense of I am not alone and knowing that others do well after surgery is important and reassuring.
    3. Guides are now arranged thematically (lifestyle changes, complications, nutrition/fluids, etc) to make it easy for patients to quickly access and reference information. Furthermore, booklets contain simplified cartoons or pictures for just about everything from explanations of anatomy to pictures of complications and definitions of ostomy components so that everyone is speaking the same language.
    4. Fluid intake and output tracking charts have been added to booklets and specific emphasis has been placed on eliminating dehydration as described by
      Nagle D, Pare T, Keenan E, Marcet K, Tizio S, Poylin V. Ileostomy pathway virtually eliminates readmissions for dehydration in new ostomates. Dis Colon
      Rectum. 2012 Dec;55(12):1266-72. doi: 10.1097/DCR.0b013e31827080c1. PubMed PMI 23135585.
    5. Commercial resources with programs for those who do not have insurance and meet eligibility have been added.
  4. Electronic patient education: Approximately $4,500 have been donated to the wound care team. Thank YOU for your support. We are going to purchase ~2 tablets for beta testing, refine logistics (cases, security etc), and then get this technology into the hands of our wound care nurses.
    1. With a disproportionately high illiteracy rate in our city having videos and audio recordings is essential.
    2. Additionally, electronic media facilitates translation services.

Where do we go from here:

  • Non-profit: Given that our hospital is  a distinguished trauma center and that we serve the most indigent populations in the state, I suspect that we have a disproportionately high rate of individuals undergoing ostomy construction due to trauma (GSW, stabbing, MVA). There is a pressing need for a local safety net organization where patients in a financial pinch can turn toward to receive free ostomy supplies. I am going to work toward developing a non-profit for such a purpose. Programs exist with commercial support from major manufacturers (Hollister Secure Start etc) but I think we need to supplement these services for patients on the edge of eligibility. No ostomate, anywhere in the world, should ever have to go without adequate supplies and care.
  • Restroom Access Law: If you have IBD and/or an ostomy in Virginia don’t count on being able to use the bathroom in a store in an emergency. This needs to change and I’l  be working toward this goal in 2016.  For those with experience on issues such as this please email me: ibdpatient2patient@yahoo.com

We are bringing wound and ostomy care at our hospital into the 21st century with patient quality of life, outcome reduction and evidence based practices in mind. Culture changes are challenging in any organization but If you have worked in a hospital system (let alone a massive one) you probably know how difficult it can be to effect any kind of change. Navigating political waters takes time but this wound care team that I work with is unique in their willingness to adopt positive change. Seeing providers so willing to listen to patient perspectives is encouraging for our health care system, and I will support this group for as long as I am involved in patient care here [hopefully a long time :)].

World Ostomy Day

Throughout the world people are celebrating World Ostomy Day and to be honest I never expected the true sense of pride that I feel today. If you go on Twitter and look up ‘#myostomystory’ or ‘#worldostomyday’ you will read moving accounts of perseverance, gratitude and inspiration written by ostomates. These are people who have stared down cancer, severe Inflammatory Bowel Disease, medical traumas and much more. They’ve adapted and gone on to do incredible things with something largely considered taboo, an ostomy.

An ostomy is not a death sentence, and more often then not undergoing ostomy construction surgery frees people of the shackles they’ve grown accustomed to under chronic disease. An ostomy gives life back; not the one filled with pain so familiar to ostomates pre surgery, but a more complete one where we can get back to the simple things in life like being part of our families.  Regaining life, no matter the circumstances, is worth celebrating. I wrote my ostomy story as a guest post for Dr. Brian Stork’s blog here: Click to read my ostomy story. I would like to encourage my friends, family and anyone else not just to read my story, but go on Twitter and look for yourselves at the stories of courage written by ostomates throughout the world.

For anyone medically related  who may read this I would please ask you to take a moment and search PubMed for an article detailing the high rate of complications following ostomy construction surgery. Ask yourself if or why these high rates are acceptable and what may be simple, cost effective ways to reduce them. 

I will be celebrating World Ostomy Today by walking a 5K for the United Ostomy Association of America (UOAA) and by doing what I love tonight, studying. I owe my ability to do these things to my ostomy. I want to thank all of the ostomates who have helped me so much in the past 9 months, you have helped me regain my life. To read more about World Ostomy Day visit this website.  http://www.ostomy.org/2015_World_Ostomy_Day.html

Photo from the actual night-yes I took a photo because I knew I had to share this crazy story

Donations update & 9 months an ostomate

Nine months ago I became an ostomate. Today I sat through physiology lectures and noticed that my thoughts are shifting away from my pouch toward figuring out ways to increase my stamina to get through school as an ostomate, this is a good sign. A lot has changed in this time but the unwavering and overwhelming support that my family and I have received from friends, family, strangers, classmates, my medical school and so many others has been constant and is truly humbling. Today I wrote a check in the amount of $4,443.17 to my hospitals wound care team. This was possible because of your support and for that I am sincerely thankful. I want to pay a special thanks to my former classmates in the class of 2018 who surprised me and donated $830.00 in support of these efforts. I will never forget their support and encouragement through probably the most challenging time in my life thus far and I look forward to working with you all in the years to come.

Here I am going to explain why I chose to donate these funds locally, what they will be used for, what other IBD/ostomy related projects we’ve been doing, and what I hope to accomplish moving forward. No man is an island and nothing has reinforced that  saying more than this experience, so please remember that none of this was done by myself alone or even thought up entirely by me. If I say “I” what I really meant to say was ‘we’ because I have had an army of support behind me every step of the way.

Why donate funds locally?

This hospital is the largest safety net hospital in Virginia and accordingly patients travel from throughout the state for care. What is more, the residents here are disproportionately impoverished as compared to the national averages from the same years. In 2012, 26.2% of the city’s residents met the official poverty rate and nearly a third (27.1%) were receiving SNAP benefits. Arguably more troubling then these figures were that in that same year 36.5% of individuals under the age of 18 years old met official poverty standards (+citations at bottom of post for all percentages). These are not flattering statistics but nothing has made those numbers come to life more then the walks I have taken through the poor areas in this city. You do not need to travel much further than your backyard to see poverty and people in true need.

Concurrent to these high poverty rates within city limits is the fact that this hospital is a high volume trauma center where people become ostomates almost daily for indications ranging from colorectal cancers, IBD and ischemic disease to things like MVAs, GSWs, stabbings etc. Basically the point I’m trying to make is that this hospital provides a lot of care to indigent populations and those suffering from trauma (probably related) and ostomates certainly fall under this umbrella. I could have donated these funds to a larger/more established IBD or ostomy organization but I cannot ignore the level of need in my own community. In fact, this was actually more challenging then donating to a larger group and I thank those that did donate. A donation to a smaller organization makes a deeper impact than a similar sized donation to a national nonprofit, and I’m confident in the wound care team’s ability to ensure these funds help the most needed.

What these funds will be used for?

To enhance the education of ostomates we are going to be purchasing tablets and developing/assembling educational content aiming to better prepare them for effective self-care. There is evidence suggesting that targeted educational interventions can significantly reduce the rate of poor outcomes among new ostomates (*Nagle et al 2012 and many more). Unfortunately we do not know the baseline readmission rates among new ostomates in our health care system but we are taking steps to rectify this. Having data from the past, and hopefully the future, is absolutely essential to allow us to quantify and evaluate change over time in the rates of readmission, indication for readmission etc. In turn we hope to develop an ostomy education ‘curriculum’ which will enable us to assess effect on outcomes, cost effectiveness, independently replicate studies and all of this lends itself to being developed into a model where other health care systems can use. To my knowledge, there is very little standardization in the education of ostomates across health care systems, likely contributing to the large disparity in outcomes observed between centers. These are disparities in care that have direct quantifiable impact not only on preventable health care expenditure but also the quality of life of ostomates. We need evidence based and standardized curricula to educate patients in the hopes of reducing the excessively high rates of complications among new ostomates. Innovative strategies to bridge the gap between patient knowledge/understanding to outcome reduction is a must in today’s health care environment increasingly focused patient centered care and cost saving measures.

As of yet the plan is to purchase ~2 tables (w/ cases, security measures etc) for beta testing and putting them in the hands of the wound care nurses to start getting feedback from patients, families and the nurses. With feedback from the ground we can learn what needs tweaking procedurally (cleaning/disinfecting cases, storage/access, charging, security etc) and on the content side (do patients prefer videos of real pouch changes, computer animation pouch changes, what resources do they like, what resources have evidence based content etc). These are not overnight changes rather a longer term process that will require time to fine tune but considering the trajectory of integrating technology into patient care, this is the future. To that point, there is a significant body of literature (predominantly cancer related) suggesting that patients a) prefer to learn on multimedia platforms and B) retain more information in this format versus print media. This is where we hope to begin but it wouldn’t be much of a stretch of the imagination to envision creating several programs on each tablet for different patient populations (ex. Patients with ostomys and pressure ulcer etc) whereby nurses and others can quickly educate on different topics (even in different languages) and use images and video all without having to run back to the office for a different booklet. Patients, especially the impoverished among us, deserve the most effective resources at conveying information and in turn hopefully reducing negative outcomes and improving quality of life.

If anyone reading this has experience with integrating multimedia into patient care or has ideas/suggestions please email me at IBDpatient2patient@yahoo.com.

What else have we done/are we doing for local patients with IBD?

We’ve started an official Crohn’s and Colitis Foundation of America support group for adults in the city. Up until now this city has had a support group for parents of children with IBD and those living with an ostomy, but paradoxically there are no services for those who actually have IBD. Two friends and myself have completed the CCFA facilitator training and we held our first support group meeting at a local church earlier this week. We will meet on a monthly basis to provide support one another and to discuss navigating life with IBD. Our first meeting was small but I was surprised at how well the conversation flowed, how much I am learning from others with Crohn’s and Ulcerative Colitis and ultimately how good it feels to hear/explain things with people who truly understand what it’s like. I think everyone who attended the first meeting is excited for subsequent meetings-hopefully we will continue to grow.

We have completely changed the existing booklets that are given to new ileostomates. The wound care team and I re-designed this book with the aim of making it evidence based (focus on nutritional/fluid guidelines), easy to navigate (thematic organization, table of contents etc) and with the intention of making them patient centered. Transitioning to life as an ostomate is more challenging then I think most non-ostomates understand so we are taking steps to help inspire confidence right from the get go. Little things like including a message from an actual patient expressing words of encouragement and support in each book for new ostomates or their parents (in pediatric booklets) can go a long way. We’ve changed the title of these texts so that we are now calling them ‘companion booklets’ as opposed to a ‘management guides’ and overall they have a totally different feel to what I received as a patient. It is a night and day improvement and our next step is to undergo similar revisions for the colostomy and urostomy booklets. The ileostomy book has been reviewed and approved by our wound care team, surgical, GI teams and others-I think they are already in the hands of some patients.

I want to thank a now retired WOCN (I will call her Ms. K) for her significant contribution to this project. Ms. K provided care to ostomates for about 40 years and I was lucky enough to have worked with and learned from her just before her retirement. Its not everyday where you find someone just before their retirement as willing to undertake such large projects. She really is an inspiration to me-thank you.

We have set up a mechanism for the colorectal surgeons to alert the wound care team for preoperative patient education for scheduled ostomy procedures (a known predictor of postoperative quality of life and preventable outcome). Creating this pathway is a big step toward outcome reduction and we hope to develop it further with other surgical groups to streamline similar preoperative educational interventions.

Moving forward

Considering the financial need where I live I would love to start some sort of local ostomy non-profit whereby surplus ostomy supplies can be donated by individuals or manufacturers and given to ostomates in true need. This is appealing to me because it could benefit not only those with inflammatory bowel disease but also those who have experienced trauma, cancer, those with congenital abnormalities and more. I do not know of any local programs that do this and I think a mechanism of referral from local wound care teams may be possible. Before such an organization can be put together we need data on the local ostomy community and the level of need within it must be determined. I have heard of local ostomates who are homeless and cannot afford pouches and just use all kinds of improvised devices-this is a failure where vulnerable patients have slipped through the cracks. I am fortunate enough to have insurance but consider that if I did not the out of pocket cost of my current monthly supplies would be about $400 (20 pouches, 20 wafers, 20 flanges). This doesn’t consider other medications and a whole host of other factors so you can understand how the cost of supplies can be a significant barrier to proper self-care for many.

With regard to the blog, I am learning more about IBD/ostomies daily and I would like to continue to get more into the educational sides of these issues. I think there is merit to exploring the myths surrounding both issues for everyone. This said, I want to make sure I disseminate quality information so these posts will take time. I have many more personal posts that I have written and are in the queue but I will get to posting them once I am comfortable, I have to go at my own pace.

In conclusion

The more I stop to think about these past 9 months the more I realize how fortunate/blessed I am in life with regard to my health and to have the friends and family that I do. So much has been given to me and as such I feel a strong responsibility to give back to those around me. I could not have done any of these projects without the help of so many people but while I am here I hope to continue to help those with IBD and/or ostomies. Thank you for your support, nothing would have come from this time away from school without the encouragement of my family, my girlfriend, my mentor and friend Dr. G, my friend R, my classmates, the wound care team and many more.

In conclusion, the experience continues.

+Data presented by the Weldon Cooper Center for Public Service, University of Virginia. http://www.coopercenter.org/demographics/interactive-map

*Nagle D, Pare T, Keenan E, Marcet K, Tizio S, Poylin V. Ileostomy pathway virtually eliminates readmissions for dehydration in new ostomates. Dis Colon Rectum. 2012 Dec;55(12):1266-72.

A thorough StomaCloak review

In lieu of a video review I wanted to write this so that I could add to the conversation about the StomaCloak. I received two StomaCloaks (1 black, 1 beige-see bottom for disclosure) and if you look at the company website you will see that these pouch covers are reported to a) decrease/eliminate odor b) inhibit bacterial growth c) wick away water. Here I am not going describe the technology they use but I’d recommend checking out their website for a description of their proprietary material. Click here to visit the StomaCloak website. This being said, I think I can speak to how the StomaCloak holds up to daily hard use. Here is what I wanted to know about the StomaCloak and what I thought I could reasonably answer:

  • Does it actually meet its claims? (Specifically reduce odor and wick water)
  • Does it fit my lifestyle? (Can I wear it in hard exercise but also in dress clothes?)
  • Is it cost-effective?

After a month and a half of daily hard use I can address these questions. If you are pressed for time skip to the ‘bottom line’ at the end of this post.

First impressions: When I first received the StomaCloaks it took me a little bit to figure out how to get it on and over the support belt clips of the 2 piece Hollister pouch that I use (18193 pouch and 14206 flange). There was a small learning curve, actually I was just hesitant to mess with the flange, but after I took it on and off a few times I was able to quickly fit it over and onto my pouch/flange without ever having a problem. I was impressed by how comfortable the material felt against my skin which was certainly an upgrade over the ostomy pouch cloth like material. It also reduced both the ‘digging in’ feeling that can happen from the closure region of the bottom of the pouch and the rustling noise of the pouch under my shirt. I immediately noticed that it did not add perceivable weight to the pouch which is something I care a lot about because I do not wear a support belt. I had 3 initial concerns: would the beige pouch stain in the event of a leak, would they collect sweat and trap odor after exercise, and whether the closure system of the pouch would actually trap odors…more to come on that.

Testing: Well during these 1.5 months I have been using the StomaCloak on daily hikes in over 100 degree F temperatures, playing tennis, on several multiple hour car drives, in dress clothes, in T shirts/shorts, slept in them, wore it to the beach, and washed the beige one almost 10 times (I purposefully wore that one during times I would have leaks so that one was washed more than usual). I’m about to go fishing on the Chesapeake Bay and I’m bringing my StomaCloaks along for that as well. The benefit of having two pouches was that it allowed me to dedicate them to specific purposes.

The black StomaCloak:

I used this exclusively for exercise and during a “two week challenge” to see if it would collect odor from sweat. I used it during outdoor daily hikes for two weeks straight, without washing it once. All hikes were a minimum of 1 hour in duration, with a weighted hiking backpack, and yes I sweat heavily. I am happy (and really surprised) to report that it did not trap bad odor! I tried to smell the pouch basically every day and after two weeks my brave oldest sister tried to smell it and neither of us could smell anything gross. I was VERY impressed and actually so was my sister because she claims to have a great sense of smell. I would not have dared do this with any of my other clothes obviously. Of course this is not the most objective test but it was the only way I could think of really testing odor. My sister or I could not smell anything bad. The only reason why I knew it needed to be washed was because I knew I hadn’t washed it-it didn’t smell at all. After 2 weeks I decided just to wash it because well hygiene matters.

During this exercise I also found that wearing the StomaCloak kept my flange much more dry as compared to when I do not wear it without making me feel hotter like I was wearing more clothes or anything. Normally the adhesive region of my flange is soaked through with sweat and it starts to peel up but this was greatly reduced when wearing the StomaCloak. Additionally, the cloth cover of the Hollister pouch was kept completely dry after exercise as the StomaCloak kept it off of my skin. In speaking about the ‘water wicking properties’ I also liked to put the cover on right after showering. One of the negatives of my pouch itself is that it can take a good amount of time to dry but using the StomaCloak I could shower, pat down the pouch with a towel, throw on the StomaCloak and no moisture would get out and dampen my clothes. Not having to thoroughly dry the pouch after a shower was really nice.

The beige StomaCloak:

I used the beige pouch for non-exercise daily activity and sleeping – when I have the most leaks. As I mentioned, I was concerned about a leak staining the light colored StomaCloak which would have been a deal breaker for me so I wanted to see if washing it removed any discoloration. I had 3 leaks while wearing the beige StomaCloak and below is a picture of before and after washing (you’ve been warned). The beige cover did not stain when it was leaked on and I did not use fancy wash cycles or special detergents or anything out of the ordinary. I also found that after washing this cover over and over there was no problems with the overall construction-no stitching came loose and I did not observe any fraying. Both pouches are well sewn and they continue to hold up well to heavy use and washing. I was impressed that the beige pouch did not show any signs of discoloration after 3 leaks.

Incidental findings:

Odor: My ileostomy pouch has a filter which is only functional for about a day or so and after which can be the source of bad odor. After 4 days of wearing a pouch I normally can smell what I think is coming from the filter or possibly from the bottom of the pouch. I did not detect any of this ‘4 day odor’ while wearing the StomaCloak. This was really nice.

Driving/seatbelt: At times the StomaCloak can seem like it has excess material which makes it unduly thick. This has been commented on by other reviewers (see Thalia and VeganOstomy review). I too noticed it could seem thick but on long car rides this actually provided some cushion between the seat belt and my pouch-again I don’t wear any stoma guards or anything so I liked this.

Confidence: I don’t think this is unique to the StomaCloak but this was the first time I walked around my apartment without wearing a shirt in the morning with my roommates around. It definitely had the effect of increased confidence and to be honest that was a completely unexpected finding.

Drawbacks I found: The material can seem a little thick if you are wearing dress clothes but I think this will depend on the location of the stoma/pouch, how tight you wear a belt etc. It wasn’t a major issue and I continue to wear the cover with dress clothes. If you have a Coloplast pouch such as the SensuraMio, the StomaCloak does not have external Velcro options that allow you to fold it in half like the actual pouch. Not a problem for me as I have been wearing Hollister but that is something I noticed. For those that like ‘dressing up’ their ostomy accessories these only come in black and beige which to me isn’t a big deal but maybe you’d like more options.

My bottom line:

As I said for me to purchase something like this I want it to do what it says it does, fit with my lifestyle and be cost effective. The StomaCloak delivered on all of the following:

  • Odor: Masked odors well-specifically eliminating odor that I can detect after 4 days of wearing 1 pouch. It does not collect or trap odor from sweat on the exterior of the pouch after exercise.
  • Water wicking: Kept my flange drier and pouch completely dry when I exercise and sweat heavily. Very useful after showers as you don’t have to spend time completely drying the pouch, just throw it on after a towel pat down of the pouch and you don’t have to worry about getting clothing wet.
  • Cost-effective: The covers are robustly sewn and did not fray during heavy use or 10 machine wash cycles (beige pouch). Also the beige StomaCloak did not stain, even after several leaks-I am confident that having 3 would last 12 months or more. I do not know of any competitive options to compare the pouch against.

Taken together I would highly recommend the StomaCloak to any ostomate concerned about actual or perceived odor from their pouch.  As an aside, I think these would make an awesome ‘stocking stuffer’ for the ostomate you know-you don’t even have to tell them it will reduce odor so its a win win 🙂 !

Disclosure: I received 2 StomaCloaks free of charge for the purposes of this review. This product actually works and I like it, I am going to offer to purchase them.

Some thoughts on the UC and childhood abuse paper

This is going to be a quick discussion about the study on ulcerative colitis (UC) that has been getting some attention recently. I have friends visiting me right now and I don’t want to spend much time writing about this study but its justifiably facing some backlash from patients and parents. Again my disclaimer-I have no real ‘classroom’ training in research. I do not have a masters or PhD. What I do have is an interest in research, statistics and GI. So if you agree with some things I say great, if you don’t agree that’s okay too help me learn more and comment!

The paper in question published in the journal Inflammatory Bowel Diseases titled, “Childhood maltreatment is associated with ulcerative colitis but not Crohn’s disease: findings from a population-based study”, reported that individuals with UC have significantly higher rates of childhood sexual and physical abuse as compared to those with Crohn’s or without IBD. Furthermore, the authors suggest that a possible explanation for these disproportionately high rates of UC in those who have seen abuse could be epigenetic changes resulting from chronic neuroendocrine stress associated with growing up in these conditions. Basically they’re saying a higher percentage of people with UC have grown up and experienced abuse (they cannot identify the age when it occured) and that this may be causing changes to their gene expression possibly causing them to have UC.  Yea, okay clearly you can see why people are not too thrilled so we should take a look at this a bit more carefully.

Click here to read abstract

The article in the press

  1. Strong non-response bias:  A non-response bias is distinct from both selection and response biases but actually any of them can be the pitfall of survey type studies. What is non response bias-it’s basically that the people who responded are different than those who did not respond. From the methods section (page 2 under Sample sub-section) they only analyzed patients with IBD (who had to self report from a long list that they have IBD) who also completed their adverse childhood experience questionnaires fully. I think right there is why you’re seeing such high rates of abuse among the patients with IBD.  Basically I suspect that people with IBD who do not have any childhood abuse etc probably just didn’t fill out the questions which would have excluded them from analysis. There are a few ways the authors could have explored the non-response bias but they do not – in my opinion reviewers should have requested further analysis about the n with IBD who did not complete the questionnaires, n without IBD who completed questionnaire fully, and to compare demographics/diagnoses between quartiles of childhood abuse. None of that was done and the authors do not even bring this up as a potential study limitation.
  2. No hypothesis leading to multiple comparisons:  This study was generated from a large cross sectional database which there’s nothing inherently wrong with but you just need to be careful and rigorous with the interpretation of the results. When you get this much data it’s really easy just to dive in without a specific hypothesis which will lead you to strange places based on probability alone. This has been viewed as bad science basically forever although the advent of genome wide association studies (GWAS), exome sequening and similar techniques challenge this notion (beyond the scope of this discussion).  What do I mean by multiple comparisons? Well everyone knows that in a research study the researchers always are after the magical significance of “P<0.05”. This means that the probability that the observation (people with UC have more abuse in their past) occurred by chance alone is less than 5%. From there you can see that if you make 100 comparisons about 5 of them will be “statistically significant” by chance alone. Imagine this on the scale of hundreds of comparisons just by playing with the data and you will see it becomes highly improbable to not get significant results by chance! There are statistical ways to correct for multiple comparisons that they don’t mention-Bonferroni etc. There’s much more to this conversation but that’s the gist and I think this idea is further supported by the number (and different types) of papers that were generated from this same database by the first author.
  3. Correlation =/ causation: This is a very cliche and low hanging fruit when critiquing a study but it’s true and here is a funny link that may illustrate it perfectly for you. Funny Spurious Correlations. There are some very funny correlations in this website (yes, this is what lab humor looks like). I like the number of people who died due to getting tangled in bedsheets correlating with per capita cheese consumption (r=.94) data from the CDC and USDA. Check out the link its entertaining to see how highly correlated some things are.
  4. Wonky statistics/analysis: I will start with Table 1. First I would have compared the rates of early adversities between IBD and non-IBD. That’s an obvious logical first analysis that was not reported. From there it makes more sense to parse out Crohn’s versus UC (which is what they dive into immediately in table 1). All of table 1 is using chi squared and t tests to compare Crohn’s vs. UC (Bottom of table 1) virtually ignoring the non-IBD controls and makes interpretation of the data difficult. If they are not compared to individuals without IBD how do we know if these rates of adverse effects are truly higher then what is observed in the general population? Table 2: Again the same point holds as to why not perform logistic regression trying to identify IBD in aggregate before separating by diagnosis. In adjusted models the odds ratios, particularly in sexual abuse, decrease quite a bit (still remain significant) but I imagine that in an IBD vs. non-IBD logistic regression there would be no significant difference.

I could go on discussing confounders, the discussion on epigenetics/neuroendocrine which I think is just a massive leap, that the limitations in the discussion of the study don’t really address any real statistical issues and that they claim that IBD is relatively rare yet Canada has the highest prevalence in the world (the main reason why the sample sizes were small I suspect is because they required the total completion of the adverse childhood events questions). Usually you shouldn’t need to look much further then the methods section to be able to predict what kinds of issues a paper may run into. From there, good science addresses any methodological or statistical limitations in every way they can and publishes once they can no longer think of alternative explanations.

Ultimately, it is up to the peer reviewers to screen papers thoroughly and I hope (and expect) that a group will write a reply to the authors and the journal highlighting several of the limitations and warning its interpretation with caution. I wouldn’t lose much sleep over this study 🙂 hope everyone has a good weekend.

“if you torture your data long enough, they will tell you whatever you want to hear”

james L mills

Thoughts on my non-linear medical education

The other day I was sitting on the beach thinking about had I not taken a year off of medical school I would have been sitting through my first cardio-physiology lectures. If there is confusion as to where I would have rather been at that moment know that I agree with my father who quips “the only problem with the ocean is that you get wet.” Eventually I started considering whether my time away from medical school was a waste of time and/or whether I had significantly delayed my medical education. These are questions I fully anticipate someday having to answer for professionally (i.e. residency interviews).

In an admittedly grim train of thought I considered how some may frown on my situation as I haven’t appreciably added to my CV during this leave of absence (LOA). Sure, I’ve started a few projects, went to DDW and would love to attend AASLD in November (excuse to visit my sister again 🙂 ) but going to conferences without a presentation as an early medical student is arguably not worth the money. What finally hit me was the rather obvious realization that medicine is as much an art as it is a science. You see my scientific side immediately sought quantifiable surrogate markers of a productive LOA but I had failed to consider the less objective characteristic that I think makes a great physician. The art of connecting to patients.

Throughout the world undergraduate medical students learn about science and evaluating complex medical conditions but also less objective things such as interviewing patients, practicing empathy, interacting with individuals other cultures or belief systems etc. These classes have their role but they’re formulaic and if you have ever been examined by a medical student then you probably know that simultaneously thinking about disease processes and a physical exam you just learned all the while trying to be empathetic takes practice, years of practice.

Being a great physician takes walking through the highs and lows of life with patients not just professionally but connecting with them on a personal level regardless of their status in life at that moment. During this time off I have seen and begun to further appreciate this rare characteristic from physicians I will try to emulate in specialties ranging from trauma surgeons to family practice doctors. To me it makes sense that medicine remains a final vestige of true apprenticeship based learning through residency and fellowship where ideally we begin practicing the art of human connection. Ultimately no matter how prestigious of a medical school, residency or fellowship training someone completes (or the age at which you complete them) they will not be loved by their patients unless they are a human first.

This year I’ve lived through some of the highs and lows in life that most in my position have only read about or seen peripherally during shadowing experiences. I’ve talked and learned from real patients who, like me, endure physical pain, surgery and extended hospitalizations while facing less quantifiable manifestations of disease like fear, frustration, disappointment, and uncertainty. I’ve gained some insight as to what other patients actually care about and want from their physician. Every day I learn from tech savvy physicans throughout the world of the power of appropriate social media use as a fruitful medium to connect, educate and allow groups of patients to voice very real frustration as they desperately seek answers. I think that my detour from formal medical education, no matter the circumstances, has made me more human and paradoxically has gone further toward making me a better physician then had I attended every lecture on connecting with patients.

So what do you think? Does it matter if medical students take a year off for non academic reasons?

Restarting school with an ostomy won’t be easy

Today from about 8 am-2:30 pm I spent the day shadowing/rounding with a gastroenterologist who I have been working with at my school. As the day progressed I realized that readjusting to school in January is going to be quite difficult due to my ostomy. Admittedly this was my first day ‘back in the swing of things’ so I may just feel a bit overwhelmed but here are some of the things I experienced today which I expect will continue to be problems.

  1. Sleep disruption: My ileostomy is quite active and even 8 months postop I am having to wake up twice a night (after falling asleep at around 12 am) to empty my pouch. This assumes I have been able to sleep because I’m not worried about a leak or cleaning up a leak (laundry etc) which always seems to happen in the middle of the night. Currently, I am averaging ~3 hours of sleep/night which is not very sustainable in medical school when you consider spending >8 hours/day between class and studying. Encouragingly, I have had a few good nights sleep recently so I am hoping this trend is reversing.
  2. Mental distraction: Today I always had my ostomy in the back of my mind and it was just flat out distracting. Sure when I first started school I had almost daily pain, chills, nausea etc but I’m accustomed to that-its basically what the majority of my life has been like. I am concerned about being able to sit down and think for several hours on end without drifting into thoughts about how I am sitting may be messing up my flange. I know this is going to continue to bother me as I know I will feel like I am at some sort of mental ‘disadvantage’ to my classmates. This being said I will not be seeking accommodations from my medical school for extra time on tests or anything of that nature. In my mind this is just a perceived barrier and I should be able to get it done.
  3. Physical distraction: Today I was wearing khakis with dress shirt/belt and even this business casual look didn’t lend itself terribly well to having an ostomy in my case (your mileage will likely vary depending on stoma location and where your pants/belt ride etc). Furthermore, I had to get up and leave the group on 3 separate occasions when cases were being presented to empty my pouch which I felt like disrupted the whole group. I have worn scrubs with an ostomy and those actually worked pretty well for me as I found the waist band not overly restrictive yet supportive.
  4. Social issues: There are too many of these to list but the most common is people asking me what class I am in. I’m basically an M1.5 (between 1st and 2nd year) which means nothing and I don’t really know what to say about this to my new classmates. I don’t feel like fully explaining to new people just yet whats been going on-in time when I find some friends I will. Its also a bit awkward because I don’t have to repeat any classes until January since I performed well on my first semester exams so I am missing some of the natural comradery that builds in a class.

Despite these issues it was an amazing day where I learned a lot. Being back in the clinic, visiting patients with all stages of disease ranging from ambulatory (outpatient visit) to inpatient was equal parts fascinating and invigorating. Most importantly today showed me how much I have to learn and how I have a long way to go to adjusting to an ostomy. I feel like these last several months were a kind of ‘personal adjustment’ period and once I restart school I will have a ‘professional adjustment’  where I need to learn how to feel comfortable studying, interacting with patients, wearing dress clothes etc. There is no doubt that I am re-starting medical school in January and the conversation of a reversal has been tabled for the foreseeable future. I am just excited to get back to school and keep learning.