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.
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.
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.