The theme for World Ostomy Day this year is “Speaking Out Changes Lives,” and I’m here to tell you that is definitely true. Even though I’m in the hospital and unable to attend any events or celebrate as I intended, I want you to know I’m around to chat and I would love to help you connect with the beautiful ostomy community that has changed my life. I speak out so I can bring some light and empathy to people who share common struggles.
The more I share about my journey with my ostomy, the more I see that I am capable of improving lives. My self doubt erodes a tiny bit every time I know I have inspired or guided someone, even when the rest of my life still might feel chaotic and frustrating. Choosing to be vulnerable about health issues can be difficult, but if you make that choice you may be able to help people through their own struggles in ways you cannot fully anticipate.
I’ve discovered that advocating and supporting people like me is fulfilling and rewarding despite my fears and social anxiety. I’ve always been driven by a desire to brighten people’s days if I can, and then a friend coached me through life-changing surgery and set me on a path toward ostomy advocacy. I had already been involved in the Crohn’s and Colitis Foundation (CCF), but surgery was another beast entirely. My gratitude for the thoughtful visits, emails, and letters that helped me transition to my “new normal” will never be forgotten, and now I hope I can guide and inspire others to grow and adapt as I did: with the help of a powerful community.
Generally speaking, I’m self-conscious about my physical flaws and clear evidence that I’m slowly becoming a cyborg. Celebrating my post surgery life is important to me to refocus on the positive aspects of my new life instead of wallowing in self pity or idly wishing for better health. When things go wrong, I have all sorts of wonderful people to whom I can turn for help and comfort. Getting all worked up every time I have a leak or a dress looks odd and starts catching on my bag is not doing me any good.
Kunde Winery Mountaintop Tour
I celebrate my ostomy surgery every time I get out and explore the world. My surgery certainly comes with challenges, but it represents a chance for me to build my strength and create a new life out of suffering. Even on my ostomy malfunction days, I would never go back to my prior condition. Now I can be carefree and run around in the mountains, relax on beaches, and stroll through forests regardless without the heavy burden of always requiring immediate restroom access.
I’ve done so many things since my ostomy surgery that I couldn’t have imagined when I had my full set of diseased organs. I’ve eaten so much good food and enjoyed exploring so many beautiful places! Now adventures are much less stressful, more accessible, and the likelihood I can actually follow through on plans is much greater.
Speaking out about my ostomy has been an important part of my challenging journey toward self-acceptance. I still struggle with trust and vulnerability issues, but now I have empathetic people who are only a phone call away. As an ostomy advocate, I learned early on that we are much stronger together than we are apart. It’s lovely that so many people want to share stories and advice on their own platforms, but the impact of a supportive group is much more powerful. If you’re not sure where to get started or if you have not had good support group experiences in the past, feel free to reach out and let’s get to know each other!
It’s world ostomy day! My ostomy gives me freedom, but I know my surgery is looked down upon by many. Life is not over after surgery; it’s just beginning. I hope some of these photos are able to compensate for my lack of words today. I am worn out and mentally sluggish, but I hope I am still able to inspire people to get out and enjoy life without allowing their ostomy to be a primary obstacle holding them back. If you have questions about anything you see here, please ask by commenting at the end of the post or email me (partiallyunstuffed@gmail.com). Your questions help me decide which topics to tackle! As always, feel free to ask me absolutely anything.
A word of caution: These photos show my best days while ignoring everything in between. I plan to address that issue through writing over time. If you’re feeling discouraged because of your ostomy, it’s okay, and you are not alone. Let’s talk.
Outdoor concert in Chicago
Warren Dunes. Photo credit: Brian Matti
Warren Dunes. Photo credit: Brian Matti
Ziplining. Photo credit: Brian Matti
Relaxing on a raft in MI. Photo credit: Brian Matti
Exploring a lighthouse in MI. Photo credit: Brian Matti
Archery
Door County, WI
IBD friends gathering!
Before a free dance session in Grant Park. Photo credit: Brian Matti
Enjoying Chicago
Starved Rock State Park, IL. Photo credit: Brian Matti
P.S. My apologies to any readers who know me well enough to worry about me. I appreciate your concern and support.
Even though I have been to IBD education events before, I still keep coming back to this one. The Crohn’s and Colitis Foundation of America (CCFA)’s Illinois Carol Fisher Chapter has a wonderful patient and family educational symposium. This year it’s on Saturday, April 12at 2200 E. Devon Avenue (Lower Level), Des Plaines, IL 60018. Registration starts at 8:15 a.m. and the actual programming starts at 9:00.
With all my research and years of experience, I look forward to this consistently. I like talking to the vendors, hearing updates on medications and scientific understanding of IBD, and chatting with fellow patients. I’ll admit that I’m biased toward a few of the University of Chicago speakers because they care for me personally, but that’s all the more reason for you to come meet them if you’re anywhere nearby! These special people care deeply for their patients, and that passion is especially evident when the address conference attendees. The speakers plan to equip us with the knowledge and variety of tools they need to take charge of their health. I currently need a knowledge boost, because my disease flared unexpectedly this year and I need to make healthier life choices.
Dr. Rubin is giving a few sessions that sound interesting, and Michele Rubin is co-moderating a patient panel about surgery. I also had to include this photo because we look fabulous.
The most important page you should check out to see if this could help you is the agenda for the patient workshops. I’m particularly interested in the talks regarding new therapies, nutrition, and coping with IBD. I’m also a little envious of the awesome programs for kids, because their sessions sound fun and I know those presenters will do a great job. Whatever is going on with your current health, I’m confident you’ll find something useful here. If you’re doing well, I encourage you to come for medical updates and to find out how you can become more involved in the IBD community. Life is better when we look out for each other.
Fellow activists at a past symposium
This symposium is a relief for newcomers and a boost for veterans. I hope to see you there, and feel free to email me (partiallyunstuffed@gmail.com) if you’d like to grab a bite to eat with me afterward!
I met the OstoSolutions team at the 2013 United Ostomy Associations of America (UOAA) conference, and I am sufficiently intrigued by their Ostomy Pouch Disposal Seals to share their information with you. Please watch the videos and read the excerpts from the company’s website before you read my personal opinions, or this will make no sense and you might think I’m crazy.
On their main website, you can find information and testimonials about their company and product. Their YouTube channel shows you how the seals can be used, and I admit that I reacted strongly the first time I saw these. The idea behind these is almost unbelievable, but it makes sense when you think about it. I’ll provide the basics here, just in case you’re not feeling ambitious.
OstoSolutions Ostomy Pouch Disposal Seal is an odor-control product that seals closed-end and drainable ostomy pouches. The seal is inserted into the coupling opening of any used two-piece closed-end ostomy pouch or used drainable (with Velcro® clipless technology) ostomy pouch so you can dispose of the used pouch in a 100% odor-proof manner.
The OstoSolutions™ Ostomy Pouch Disposal Seal, patent pending, is the only method on the market today that seals the contents of used ostomy pouches in a 100% odor-proof manner. No other method is designed specifically for this purpose, and none of the makeshift methods (black zipper bags, food storage bags) enable airtight, odorless disposal. A shorter change time means less odor: the Disposal Seal is designed to allow users to change and seal the used pouch for disposal in less than twenty seconds. A toilet is not needed for changing the pouch, and by enabling an odor-free disposal, the Disposal Seal ensures discretion no matter where the change is made.
He’s serious about changing your pouch anywhere. He lives in Florida and successfully changes his pouch in his car. Even in the heat, evidently the seal works.
Right up front, I should mention that their Ostomy Pouch Disposal Seal seems most useful for colostomates who use disposable pouches on a daily basis. I have an ileostomy, so my use for this product is more limited. I used it when I went out hunting, and I hope to eventually use it when I go canoeing or kayaking. When I was hunting, I used one of these when my pouch was suddenly very full thanks to too much coffee. I didn’t want to scare the deer away, and they’re pretty sensitive to smell. I used a seal and stuffed the used bag in my pocket because I am brave and I trusted Johnnie’s testimony. I didn’t tell anybody in my hunting party, and the seal stayed intact and kept me odor-free until I could stash it in a trash bag. Now I want to use these seals when I eventually go out on boats or camping because they’re discrete and I really don’t want to empty my pouch and risk any mess at all. I struggle with odor issues all the time, but when I’m at home I always have deodorizer drops accessible. When I’m out trying to be adventurous, I like the idea of an odor control/disposal solution that enables me to be a bit lazy and sneaky. I’ve heard a few people concerned about disposing of closed-end pouches at work or school and they can’t find any discreet way to handle their ostomy. I’m going to refer them to OstoSolutions whenever I can. There is nothing like these seals, and I’m impressed.
I encourage you to read Johnnie’s story here, even though this is a long blog entry. He enjoys so many activities and his confidence is contagious!
OstoSolutions was founded in 2012, on the inspiration of Johnnie Cason to improve the quality of life for ostomy patients. In recognizing the need for a more convenient, discreet means of disposal of used ostomy pouches, Cason designed and developed a 100% odor-proof solution, making life more full and enjoyable for those living with ostomy.
In 1980, Johnnie Cason was a healthy 21 year old college student at Florida State University, a junior pursuing an accounting degree. He started having abdominal pain, and was quickly diagnosed with a grapefruit-sized pelvic tumor, deemed inoperable. After months of chemotherapy and two weeks of radiation to his pelvic area, a blockage was discovered in his small bowel, related to the tumor. As soon as he healed from the surgery, the blockage needed to be removed. Radiation was restarted, resulting in 40 percent more radiation than is typically used. At the same time, a new regimen of chemotherapy was utilized since the first combination of drugs was not effective.Now eight months into his treatment, Johnnie was told by his doctors that the treatments had failed and that he had only three months to live. Despite this prognosis, Johnnie never gave up hope and continued on with chemotherapy. Finally, after a year of chemotherapy, Johnnie received the first positive news since being diagnosed. All that remained of the tumor was scar tissue. The recovery from treatment was slow, the road back to health was hard, but Johnnie was alive and determined to pick back up where he left off. He graduated FSU with an accounting degree and began his CPA career; he married, and despite having been told he wouldn’t be able to have children, had two daughters. Johnnie did things physically to push his body, including pursuing racquetball aggressively at the amateur level; 18 months after having been told he had 90 days to live, he came in second in Florida’s State Racquetball Championship.
Shortly after ending treatment, Johnnie became involved with the American Cancer Society counseling cancer patients, and as a camp counselor at ROCK (Reach Out to Cancer Kids) Camp in Florida. Inspired by the courage and determination of these children, he created childhood cancer programs for them in between the summer camps and assisted in fundraising efforts. In 1990 he was awarded the State of Florida’s highest award for a cancer survivor, the Courage Award.
However, the treatment that saved his life had taken its toll, including some bladder and bowel function challenges. In 2002, he developed a condition related to the high doses of radiation he had received. A colo-rectal reconstructive surgery was performed that resulted in an ileostomy, designed to be temporary during the healing process. After eight months with the temporary ileostomy, reversal surgery was performed. Due to the pelvic damage caused by the radiation, the surgery had failed. In 2003, another surgery was performed resulting in a permanent transverse colostomy
When Johnnie left the hospital, he was introduced to closed-end pouches. He began using both drainable and closed-end pouches, but moved to closed-end full-time as he felt doing so improved his quality of life. Still, there was the challenge of disposing of the pouches – there was no truly odor-proof means of doing so, which was a dilemma for a person like Johnnie, leading an active life
Johnnie continued to work, to pursue recreational activities such as golf and fishing, and kept trying to think of a solution. At last, he came up with the idea for a sealing mechanism for used pouches, devised and developed it himself and started experimenting. Finally the day came when he knew he had found it, a simple solution to a challenge faced by anyone with an ostomy. He founded OstoSolutions in order to share his discovery with the ostomy community, believing that everyone should have access to a better quality of life, free from the odor concerns that prevent so many from fully pursuing activities that they love.
Just so we’re clear, you should know that I am not paid to publicize this product. I just think you might want to check it out.
Most undergarments make me cranky, so I get really excited when I find good ones. If bad underwear has ever made you cry, you can appreciate my enthusiasm.
My emotionally difficult journey with Crohn’s disease prompts serious questing and problem-solving as I try to dress comfortably and fashionably. The situation was bad enough when I was dealing with dramatic weight fluctuations, a sensitive belly, and serious wear and tear on my poor undies. After surgery to remove my mutant colon, I had to figure out how to deal with my permanent ileostomy. My stoma’s location prevented me from comfortably using my old underwear and pants, and the weight of my ostomy bag got irritating sometimes. I also worried about the bulging bag showing under most outfits.
My lovely mother helped me in my quest for comfort, and a dear friend recommended special ostomy underwear. Now I have a variety of goodies that work for me, and I absolutely must share this particular discovery. I found Awestomy through friends on Facebook, and I love my fancy undies enough to let the internet see me without pants. For someone with serious self-confidence issues, that’s a pretty big deal.
Awestomy currently sells shirts, wraps, swimsuits and underwear. The owners, Jason and Jessica, have done a great job with their social media presence and creating personal connections within the ostomy community. Their sense of humor shows throughout everything they do, but most obviously on their shirts. I don’t own any yet, but my favorite says “intestinal fortitude!”
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I have the women’s wrap in pink. I like the tapered waist and rubbery stuff around the inside of the top hem (whatever it is, it’s on my strapless bras too), because the cut suits my body type and stays in place. This wrap enables me to wear a few pairs of pants that hit below my bag. Since you can’t see through the wrap, it hides the bag even if it’s worn over pants.
I have the booty shorts in pink, black, and navy stripe. The fabric is so soft, and the lace is wonderful! I adore lace, so I feel dressed up in these. Many types of lace aren’t worth the trouble because they’re itchy and stiff, but this is high-quality and stretchy. There are moments I look at my opaque brown bag and just feel less than fabulous with it, so it’s nice put on my Awestomy undies and feel pretty. That might sound silly, but my obsession with bright things and fun patterns seriously draws me to these products.
Both garments look awesome, conceal my bulging bag under tighter clothes, support the weight of a full bag, and avoid my common complaints with bad underwear (irritation, sliding around, constricting my bag unevenly). Sometimes I feel like I’m not even wearing an ostomy bag because all I feel against my sensitive skin is the smooth fabric of the inner pockets. I’m a happy camper.
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It’s come to my attention that some people are hesitant to try special ostomy garments because they want to feel normal, and they don’t want to use any more medical gear than necessary. If you are hesitant based on a dislike of medical-looking clothing, I should tell you plenty of people have seen my Awestomy undies and thought they looked great. When I wore them for the Chicago Undie Dash, I got tons of compliments from healthy people who had no clue I was hiding an ostomy bag and a phone under my sassy red lace.
Kickstarter
Awestomy is currently trying to raise funds through Kickstarter, and they could really use your contribution. They’re offering great rewards for different donation levels, and I definitely wish I had more to give! They hope to use this project to expand their business and enable them to reach a wider customer base. Even if you’re short on cash, please at least watch the main video and pass the Kickstarter link along to your ostomy buddies.
The designers of Land’s End Women’s Swimwear have given us so many lovely options! I feel great in a brightly-colored, well-constructed swim skirt that allows me to traipse around beaches and pools without worrying about wardrobe malfunctions, so this brand is one of my official favorites.
If you like being active and don’t want to keep re-adjusting your swimsuit to cover more of your rear, consider these “SwimMinis,” “Mini SwimMinis”, or “Ultra High Rise Swim Minis.” I can only comment on the first of those styles.
My favorite bathing suit bottom is the “Women’s Regular Beach Living SwimMini with Tummy Control” in Turquoise blue. It’s available without the tummy control, and in lots of sizes. The wide waistband doesn’t dig into my squishy bits around my waist and hips, and I feel secure when I wear this.
I wear it with absolutely any bikini top I want because I love bright colors and fashion instinct is not a personal strength. Mixing and matching is a great method of picking swimwear! So if you love wearing two-piece suits, I suggest investing in a nice bottom and switching up your look with cheaper tops.
My black “swimdress” is modest yet flattering, and it’s available in a wide range of sizes. The ruching breaks up the silhouette of an ostomy bag underneath, and this style is particularly forgiving of weight fluctuations.
Whatever you do, try to let your worries go. If you look closely, you can see the very top of my pouch peeking out over the waistband of that blue swimsuit. It doesn’t bother me at all because when I am healthy enough to get out and wear swimsuits, I am a happy camper. People are more likely to comment on my feeding tube scar (because it really does look like an extra belly button), as opposed to that tiny piece of beige fabric and plastic. If you’re truly nervous about being seen in public wearing a bathing suit, get a pack of fun people to wear equally awesome outfits. If that option isn’t available, take a look around online and you’ll catch on quickly: you aren’t alone, and there are a lot of people who would like to brighten your day.
Thanks to the best kind of peer pressure, I walked around Chicago without pants and now I am posting the photographic evidence on the internet.
Pre-Race Team Photo
I love my Awestomy undies, and I love everything The Great Bowel Movement stands for, so I was pretty intrigued when I got the invitation to show off my ostomy/IBD awareness gear at the Chicago Undie Dash. Apparently I will do almost anything to publicize some of my favorite things.
Halfway Point
Given my health situation and some quirky foot injuries, I was nervous about this race but I chose to go and do as much as I could without seriously hurting myself. I am not a runner, so I’m using the term “race” loosely here. It took a while before I could use stairs without cursing my muscles. I started wheezing early on, and I had to drink more water than most participants. Sometimes I felt tempted to lay down and take a nap on the grass. BUT I took care of myself, enjoyed talking with other walkers, and I did it. I went out and finished that 5K!
“I did it!”
My team did not won any prizes for costumes, but they are the best cheerleaders anyone could ever ask for. While I was still walking toward the turnaround point, my teammates cheered me on as they sped toward the finish line, and that made me feel great. As I tried to jog the last stretch of the race, I did not expect to see all of them waiting for me and cheering near the finish line! They probably had to stand around for a long time. I didn’t realize it until later, but before I got there, this delightful show of support happened:
I talked to fun people along the way, including a nice lady who just wanted her picture taken with me and another random person. After the picture was taken, she walked with me for a few minutes because she had a lot of questions about my ostomy and Crohn’s disease.
Just because we’re cute
A segway tour stopped to ask me about my awesome underwear and shirt, because one of them had an ostomy and because even among all the creative outfits at this event, my undies attracted a lot of attention. I also got to show off my pins from The Great Bowel Movement, because a few people were looking close enough to notice that I didn’t use safety pins to affix my race bib to my shorts. The people who noticed the details of my ensemble weren’t creepers, just fellow walkers. The creepers were too busy laughing and filming videos with their cell phones.
I’m pretty psyched about getting through my second 5K, but sometimes I get frustrated when I see stories of athletic people who used to be sick because they make me wonder if I have a willpower problem, so I want to offer some clarification here. It’s okay if you can’t do this, and I want you to remember that we are all very different and we all need to carefully consider our individual abilities, needs, and past physical trauma. For those of you who are in reasonably decent health you can probably do this if you start training with short walks and build up, so seriously consider signing up for a race sometime. You might surprise yourself.
Appropriate backdrop for this group
For walking/running inspiration (please don’t be intimidated):
A note to readers who don’t see me on a regular basis: I didn’t forget about correspondence or blogging, I’ve just been dealing with constant viruses and infections that kept me away from coherent reading and writing.
Reflections on the Mental, Emotional, Physical, and Spiritual aspects of Living with Chronic Conditions and Pain. Specifically, this blog explores the effects of Autoimmune Diseases, Inflammatory Bowel Disease (IBD), Interstitial Cystitis (IC), Epilepsy, Seizures, and Migraines on Finding Happiness, Humor, and Balance in Life. Pictures, videos, and links to resources and inspiration are included.
