When the Scientist is the Patient
This is a paid blog post sponsored by Coloplast*
I self-identified as a scientist long before I was labeled as an “ostomy patient”. I proudly displayed my high school biology-grade laboratory set that I received for my 8th birthday on a floor to ceiling bookshelf in my bedroom, before I was diagnosed with Crohn’s disease at age 9. Three years later, I had a partial colectomy that left me with an ileostomy. Since I was young, but old enough to take care of bathroom business on my own, I was never properly shown how to empty the bag. I didn’t know that the raw, itchy, red, painful skin that hid under my ostomy was abnormal. As a kid, I remember attempting to think logically about the state of my skin reaction to the appliance…of course having an ostomy sometimes feels uncomfortable, and even painful. It’s not natural. There are plenty of medications that we must take to feel better that also happen to have horrible side effects, right? Right. Therefore,Itchy painful skin and nighttime bag leaks are the “side effects” that come with the territory of a temporary ostomy. I had a glimpse of what life with an ostomy would be like, and it was miserable. I lived with my ileostomy for a year, and when I was 13, I had surgery to have it reversed. I had an ostomy; and then I didn’t.
During college, my disease got progressively unmanageable and I got my first taste of life as a researcher in a lab. The stress of studying for exams made for an interesting pattern of ending most semesters with a hospital stay. The word “surgery” was being thrown around again, only this time it was coupled with another word: “permanent”. As a 19 year old girl, I wasn’t ready. I was too young to be told I would have to live with a permanent ostomy for the rest of my life. I needed more time. I graduated after four years at Michigan State University with a B.S. degree in Microbiology and Molecular Genetics in 2007, and received a job as a research associate position at Univesity of Michigan that summer. my health was quickly deteriorating. I applied for a research associate position at the University of Michigan that summer. The day of my interview, I was in a hospital in East Lansing due to a Crohn’s flare. I convinced the doctors to release me the morning of my interview. I drove to Ann Arbor, interviewed for the job, and drove right back to the hospital that evening to be admitted. A week later I found out I got the job
Today, I am pursuing my Ph.D. degree in immunology, despite the complications that accompany a life of severe Crohn’s disease. In the upcoming year, I will complete my Ph.D. training at Wayne State University School of Medicine. I began my graduate school career hospitalized, ending the first semester with a total colectomy resulting in a permanent ileostomy in December 2009. I knew I could not pursue my Ph.D. degree without this ostomy. I was simply too sick. I made the difficult decision to live life with a permanent ostomy, rather than succumbing to a life in a hospital bed. After several post-surgical complications that required additional corrective surgeries and a month-long stay in the hospital, I slowly began to recall my experience with an ileostomy as a kid. This time when the skin under my barrier started to itch and turn red I vowed to be vocal and find a solution. Surely technology had advanced and this was a common problem with a simple solution. It didn’t take me long to realize when I wore a bandage on my hand after a blood draw, or my arm was taped up with an I.V., that I had a similar itchy reaction that resolved when I was able to remove the sticky tape. In the months after the lifesaving surgery that resulted in a permanent ostomy, I discovered that I had an adhesive allergy. My body was mounting a severe inflammatory reaction to the one thing that was meant to replace my diseased intestine. The ostomy appliance was an extension of myself. As an immunologist-in-training, I had to laugh at the cruel irony of my new “autoimmune” disease.
I lived with peristomal skin complications that were so severe that there were times when I was bedridden for days. I missed classes, study groups, social events, for a reason that felt too trivial to be real. I was having peritstomal skin issues...but…it was so much more than that. The skin around my stoma was a smoldering, blistering open wound, due to the severe reaction to the adhesive in the wafer required to stick the ostomy bag to my body. Countless trips to dermatologists, wound care specialists, and ostomy nurses left me hopeless. The bottom line was that this inflammation was not treatable, and all the innovative tricks up our sleeves never actually worked. I could not realistically wear an ostomy bag without any adhesive touching my skin. I had to find a product that stuck to my skin without producing an inflammatory reaction.
After maxing out my resources in the medical community, I decided to go straight to the ostomy company representatives. I called the main suppliers, explained my dilemma and frustration, and all were extremely sympathetic and quick to send samples of every product that may help me. All else equal, I was able to let the quality of the products speak for themselves. And so began my 3 year journal to a complete solution to my peristomal skin issues.
I’ll get right to it and give the simple solution to my lingering problem. First, I went minimalist and decided to stop using adhesive removers or skin barrier wipes and stop using pastes. The rationale behind this move was that the scientist in me wanted to remove all confounding variables while in search of the right ostomy appliance. I noticed this helped. Next, I found a product that had what felt like the gentlest of all wafer adhesives, the SenSura by Coloplast. The first couple of years post-surgery, the skin surrounding my stoma was so constantly inflamed (think poison ivy), I had to change the product twice a day in order to treat the affected area topically with various steroid treatments. The additional mechanical irritation of stripping a strong adhesive from already damaged, broken skin was a huge problem with products I tried in the past. I liked the low-profile look of the SenSura pouch, and stuck with the brand since my first sample.
Coloplast has given me my life back just as much as the ostomy surgery itself. The first few years after my surgery, I thought I switched out one chronic issue (painful and debilitating intestinal inflammation) for another chronic issue (painful and debilitating skin inflammation), and that was terrifying. Once I discovered the SenSura line of products, slowly, but surely my peristomal skin complications got better. I stuck with the same product and very, very, slowly, my skin started to look and feel better. I am now 5 years out from my surgery, and the first 3 years filled with debilitating skin post-surgery feel like a distant memory, because my ileostomy is no longer a source of pain and anxiety. It's just....there. Now, I can fully love my ostomy again, as we all should, since it allowed my surgeon to remove my diseased intestine and allowed me to live my life and accomplish my goals.
Coloplast didn’t pick me. I picked them. I was sent home post-surgery with products from a different company, the same brand I used as a kid, and did my best to find the combination of products by this brand. I incorrectly assumed that an ostomy bag is an ostomy bag. I thought the only decision I had to make was whether they were a 1-piece or 2-piece kind of a gal. For the record, I always wear a 1-piece pouch. I like the ease of having only one essential component. I hear that some prefer the versatility of a 2-piece system. Knowing that I have a 2-piece version of the product I like is reassuring when it feels like you don’t have many aesthetic ostomy bag options. I finally feel there might be a shift in the after discovering that my trusted SenSura line has expanded to include a new sister product, the SenSura Mio.
Allow me to make an analogy with an undergarment we all wear, regardless of ostomy status; underwear. As you may get a sense from the name, the SenSura Mio can be thought of as the couture version of the SenSura brand. Sure, I will forever be grateful that the SenSura ostomy appliance was designed in a way that allowed me to be relived of my skin issues, but after trying the SenSura Mio I feel the same way about the SenSura pouch as I do about satin, nude, full-coverage underwear. Both are comfortable and get the job done.. The SenSura Mio immediately piqued my interest when I first held the 1-piece system in my hands. The wafer has the same low-profile look, but while wearing it, I felt that the wafer moved more freely with me and felt more like skin. The material that covers the pouch feels like it came from a soft trench coat and was remarkably quick drying after a shower. The cover is also a wonderful taupe color with subtle turquoise accents that are both discrete yet very aesthetically pleasing (a tough combination to a achieve if you think about it). Something new I loved about the SenSura Mio design that I discovered while wearing it was the ability to tuck the bottom of the bag completely into the top of the bag via a flap that covers the top half of the pouch. The finished look is a cute little packaged up accessory that can compliment any other undergarment of beachwear on your abdomen. My hope is that in the future, the next SenSura Mio line will feature bags with bright colors and designs, and fully commit to this “a pouch is just another piece of clothing” design concept. This excites me, and that is why I feel we are starting to see some real changes in the design of ostomy appliances.
The complications of Crohn’s disease and the ensuing difficulty of finding an ostomy appliance has been, and always will be, the toughest and most painful challenge I have ever faced.. It has not been easy to find the right combination of ostomy products that worked for me.. That being said, I am able to see the positive influence that living with this disease has had on my life, and I can honestly say I appreciate what this disease has given me. This includes my ileostomy. I tell my story to others struggling with the decision to go into surgery. I always ask, “is living life with an ostomy really worse than a life of pain and suffering, without an ostomy? “
I feel lucky to be able to speak about IBD research and ostomies not only as a scientist, but also as a patient. This disease has given us a unique perspective that can only be gained by experiencing life in a body that is in a constant battle with chronic illness. I use this perspective to live my life despite it. A pastor in the hospital that visited my bedside, as I lay alone in the emergency room, once told me, “You are the lucky ones. The unique perspective you gain from experiencing the pain and hardship that accompanies chronic illness; use it.” Find the positive in your struggle. We truly are the lucky ones. Use your experiences with this disease to fuel your passion.
For me, science is my passion.
I have this familiar sense of urgency when I wake up in the morning. It’s there when I open my eyes and feel the weight of Crohn’s disease on my body; and for that reason, I get out of bed. I shower. I am further motivated when I look down at the permanent reminder of what I have been through and how far I have come. When I arrive at the research lab, I feel a sense of comfort. I am, and always will be, a scientist.
Interested in trying the new SenSura Mio? Click here
*Lisa was provided free samples from Coloplast