Many of you know that I did a 10k and fundraiser recently and I’m finally getting around to the blog post, thank you for your patience! So I will describe the race a bit and then discuss the fundraising efforts at the end of this post.
The Training: I’m reluctant to call this training because honestly it was walking on a treadmill but I guess I almost died and surgery set me back quite a ways physically so whatever it was training. The walk was March 28th, 3 months post op and 2 months after my hospital discharge. I prepared mostly by walking on the tread mill usually in 30-60 minute sessions. I was having to really be mindful of my fluid intake as my wound was draining and my ileostomy has quite a high volume of output. I’m not one of those people who always carries around a Nalgene bottle and drinks water all day so it has been difficult to consciously force myself to drink and stay ahead of dehydration. On several occasions I felt light headed and experienced some postural hypotension (light headed when you stand up etc) but whenever that happened I stopped exercising, flooded my system w/ fluids and electrolytes and then keep drinking as much as possible. If you are experiencing symptoms like this you are already dehydrated so you need to drink much more! The furthest I had walked in my ‘training’ was 4 miles.
The Team: Our team name was “The Ost-homies.” My joke was that it is a silent “h” and basically just meant anyone who is a friend of ostomates. I think I’m one of the few people who thinks I have a good sense of humor. We had some other candidate names but when taken to a vote this one won and I think its a good one. Below is a picture of our team and we had walkers/runners of all abilities. The fastest was my older sister who clocked in at a few seconds over 50 minutes. Lord knows wasn’t sticking around for my slow pace! The race took me about 2 hours but we were walking at a comfortable pace just having fun.
The Race: So race day came and it was really cold… like 20 degrees F in the morning. This explains my interesting fashion choice of an Alpaca hat from Peru (thanks Don) covered by a Washington Nationals hat (go Nats). We were supposed to start the walk with some of the slowest walkers but it got so cold we just walked up in the massive line and started early. At the starting line our team name got called out by a radio announcer and he said the whole “Ost-homies…walk/run for Crohn’s” which was actually a pretty cool thing to hear. Anyways, the walk went smoothly. As I mentioned, the furthest I had walked post op up to that point was ~4 miles and interestingly as we approached the 4 mile mark I started feeling light headed so I had to down a few Gatorades. The race was so much more fun than I had anticipated. I had never participated in a road race but this one was super well organized and just fun. There were live bands and portable restrooms every few blocks (a necessity for the IBD/ostomy crowd) and even with tens of thousands of participants there was no waiting around. It really was a great time. I plan on RUNNING it next year.
Post-Race: Afterwards my team was invited to a get together at one of my physician’s homes. Everyone on my team had a great time and really appreciated getting to know my doc better. My relationship with her has…evolved. It started with me being really annoyed with her because she was making me walk to improve my lung function as an in patient, then she further annoyed me by encouraging me to start this blog but after a while we started to warm up to eachother (actually she was always nice to me I just think Im not the best patient). In the photo below she was sitting at a nurses station telling my sister (standing to her right) to take a picture after I was about to re-enter my room in a daily forced marches. Despite being heavily medicated I will never forget looking at my sister and this doctor like you two are both crazy and I am so pissed at your right now. I am literally laughing as I write this because I recall her saying “someday you will be thankful to have that picture and you can show it to your patients!” Well I’m already thankful to have this picture (despite being a long way off from having my own patients) because it reminds me of how far I’ve come and it helps me to stay off the cigs because I remember not being able to breathe. Anyways now I consider this doctor a mentor and friend. I could not have asked for a better or timely physician mentor to have. I hope that her family and I remain friends long after I complete my undergraduate medical education.
Fundraising: So with the help of my classmates, family, friends and strangers I have managed to raise over $4000. It’s hard to believe so many people would donate, thank you very much. This money is going toward improving patient education for new ostomates at the hospital system where I am in medical school. Now I don’t want people to think that I don’t care about larger organizations like the CCFA and their efforts, they’re obviously excellent and raise millions of dollars for research, but I know from experience that our patient education materials can be improved upon. I have been fortunate enough to be working with the wound care team at my hospital to achieve the following 3 goals (I’m weird I like my short, intermediate and long term projects).
- Short term: Completely revise the printed material that we give to new ostomates. We are updating the content be largely evidence based practices and the layout to be far more patient centered rather then “data dump”. We started with the ileostomy booklet and it is now undergoing final edits.
- Intermediate: Develop a pathway ensuring that patients with scheduled ostomy constructions receive pre-operative education from the wound care team. We plan on attacking this problem in a piece meal fashion starting with the colorectal surgery group (hopefully assessing any changes in outcomes) and then rolling the model to the urology and surgical oncology groups. We have met with the colorectal surgery group and now have a pathway to notify the WOC team when an potential ostomate needs pre-op education.
- Long term: Integrate the new ipads (or similar tablet devices) post operatively during patients inpatient stays with the printed materials. Following an ostomy construction patients are generally inpatient for several days so during this time we will now be able to direct them to videos, blogs and other online resources that they otherwise would not have had access to. Furthermore this allows us to better serve patients who are illiterate or non english speaking. We need to purchase these, sort through the myriad of video and blogs and settle on a new ostomate ‘curriculum’.
I credit the wound care team at my hospital for being willing to take a hard look at our current practices, identify problems and be willing to change. It takes a group of people who care more about their patients then themselves to be humble and flexible enough to carry out changes such as these. They’re really a special group of people.
So yes I recognize that this money can go toward the CCFA, who would use 82% of every dollar on research, or it can go toward completely overhauling new ostomate education at my hospital. When it comes to funding research, $4000 dollars is virtually nothing. I have been performing translational research for the past 4 years and the cost of assays and micro arrays would shock you. This money could go toward purchasing maybe 1 kit (not even the full price of many kits) or buying the 10 ipads with Apple care that can be used for years. There is a significant body of literature (mostly from cancer researchers) suggesting that patients prefer to learn on electronic media and retain more information as compared to print media. Additionally, the new educational models may improve the quality of care and will benefit not only in patients with IBD but also those with cancer, congenital abnormalities and trauma victims. I know that our hospital really needs some upgrades for ostomates so that’s why I’m spending the money close to home. I hope to do future fundraisers that will benefit the CCFA.
What are your thoughts about the ostomy education and curriculum?