Ostomy Supplies – Orlando and surrounding areas

I’ve been an ostomate for almost three full years now. I’ve come a long way from the clear, drainable, cuttable bags the hospital gave me. Adjusting to your new digestive system is always a work in progress for sure. The hospital will likely send you home with bags until you can find your right fit. In the beginning, there’s also the added stress of trying to find appliances and systems that work for you. You’ll have to supply your retailer with the prescription from your doctor as well. Most supplies can be ordered via mail from large distributors or from a local medical equipment supplier (call first to check, not all carry ostomy supplies).

Ordering Samples from Companies

Additionally, companies like Coloplast, Convatec and Nu-Hope will send free samples if you just fill out a short form online. This will at least allow you to try out new bags and systems to see what your preference is. Believe it or not, there are differences in the size, textures, filters etc. You’ll find in the ostomy world people tend to have their favorite bags they are loyal to. That’s because once you find a bag and routine that works for you, you don’t mess with it! So if there is a bag you’ve heard about or want to try, search the company’s website, they likely have a place to request free samples. A few are linked above 😉

Ordering Your Ostomy Supplies Monthly

Keeping track of supplies and ordering in a timely manner is another thing to stay on top of. It took me a while to realize the rhythm of how many bags I go through when to order etc. Luckily, most companies I have ordered from have an automatic reorder that you just have to confirm via email, which can help ease the burden of remembering. However, no matter how many of these reminders I have in place, stuff just happens. I have blowouts, I go through more bags than expected or I’ve decided a different bag works better in the water etc. This can have me making separate orders or trying to track down the specific pouch I need and the quickest way to get it.

Truth be told, one time I even went on vacation and packed the entirely wrong bags. They didn’t fit the baseplates I brought with me. (Let that be a lesson to actually keep your supplies organized so you know what you’re grabbing!). This led me on a wild goose chase to a hospital to track down more bags. Oy vey, not fun! I’ve also had to order bags from Amazon out of pocket as well. Unfortunately, sometimes that is the quickest and easiest way for me to get the supplies I need.

Ostomy Supplies are Unaffordable

Unfortunately, the reality of ostomy life is that often times supplies are unaffordable. Many ostomates are thrown into the ostomy world only to find that they are underinsured and their insurance does not cover the ongoing monthly cost of ostomy supplies. I have found this out first hand. It’s wild to me that I will live with this medical condition for the rest of my life and I will also pay out of pocket for the rest of my life for my supplies. The ongoing monthly costs of ordering not only bags but proper wipes, creams, etc add up quickly. Not to mention the people who are uninsured and suddenly find themselves incurring these out of pocket costs as well. It can be financially crippling. Can you imagine how anxiety-inducing this is? Knowing you only have one bag left to use. I have been here. It’s not fun.

Free Ostomy Supplies in Orlando/Surrounding Area

This leads me to my newest venture which is volunteering to run this ostomy supplies venture in the central Florida area. With donated ostomy supplies from caregivers and patients, I will be able to provide ostomy supplies free of charge to the surrounding central Florida ostomates in need.

I took over this venture from a fellow ostomate who ran this for twelve years providing free ostomy supplies! It might take me some organizing but I am happy to be able to do this so everyone has access to basic ostomy supplies. Of course, I won’t have every size appliance; however, I’m confident I’d be able to help at least some with the inventory I currently have. Bags, ring barriers, paste, powders, adhesive removers, I’ve got a lot of it!

The supplies can be handed off in person at a meet-up spot or mailed, whichever is preferable in the greater Orlando area.

If you know of an ostomate or ostomy group within the local area, please share this information with them! I plan to spread the word as I can at my local oncologist’s office as well as in other advocacy groups I’m a part of.

Attempting to slowly take a message from the mess, I’m happy to take this venture on to help out fellow ostomates!

So is this…colon cancer or rectal cancer?

Gosh, I still so vividly remember sitting in my surgeon’s office at MD Anderson Cancer Center. I had already been diagnosed at my local hospital and had traveled to a larger center to get a second opinion. My initial staging showed that the tumor had grown through the rectal wall and jutted into my posterior vaginal wall. It was also detected in my lymph nodes. My first meeting with my surgeon entailed a very invasive physical examination and extensive conversations that included a lot of drawings. I wish I still had them!

After we had been in that meeting for quite some time, I asked, “So, is this colon cancer or rectal cancer?” I honestly did not know. The drawings got confusing. She replied, “The tumor is not located in your colon, it’s located in your rectum.” Hmmm. Not the answer I was hoping for. I guess none of this was the answer I was hoping for.

Colorectal Rectal Cancer Awareness

Since my diagnosis exactly 809 days ago, I’ve made a commitment that I’m not going to let the shame and embarrassment stop me from advocating for other young people. My name is Catherine and I am a colorectal rectal cancer survivor!

What’s the big deal you may ask? Well, actually, the cancers are in fact different.

In a nutshell, rectal cancers can sometimes be more difficult to treat because of the small nature of the area. Also, fun fact, your rectum does not have this protective layer your colon does (the serosa) so it’s easier for the tumor to break through and spread…just like it did in my body.

No matter how you slice it, colorectal cancer is on the rise as a whole. The treatments and procedures for them do differ slightly though.

Additionally, just the stigma of rectal cancer altogether. Who wants to talk about their bathroom issues? I get it, I do. It could just save your life though. I cannot stress enough that while I did realize something was going on, I also was floored to be diagnosed at stage 3C because I was still functioning well. I was living my life, working out, taking care of my kids. All with this monster growing inside of me.

Treatment options for colon and rectal cancer differ also. It’s common that rectal cancer surgery will be last. This is called neoadjuvant therapy! The chemotherapy and radiation aim to shrink the tumor to make surgery in such a delicate area easier. There are even watch and wait options that patients do now and avoid surgery altogether! This isn’t an option for more advanced rectal cancers typically but how great for some patients to avoid surgery altogether!

They are even continuing to research differences between cancers in the left side of the colon versus the right. It’s pretty amazing to think of the headway they’ve made in even the last decade with colorectal cancers.

Remember that colorectal cancer is preventable with regular screenings (if you are 45 or older) and paying attention to your body! I will not die of embarrassment! I don’t want you to either!

Gifts for a Cancer Patient

On more than one occasion I’ve been asked for a recommendation on what to get a cancer patient. Someone’s mom, dad, brother, friend, teacher, aunt, cousin has been diagnosed with something that has just flipped their world upside down. I’ve also been on the receiving end of many thoughtful gifts during my own cancer journey. Without further ado here is my list of things I just generally love, was gifted during treatment or wished I was gifted during treatment!

Cute loungewear set – No way around it. A cancer diagnosis likely comes with having a lot of time to sit around while in the infusion chair or getting extra fuilds after IV chemo. A cute set in their favorite color is sure to make them smile. I received several pajama sets and sweats that are so comfy!

Manta Sleepwear Mask – oy vey! If you are going to get them anything I will highly suggest this mask! It is oh-so-comfy with little love pockets for your eyes and it filters out every last ounce of light. A must for the hospital stays. I wish I would’ve had one during my stay!! (I did have lots of earplugs on hand, hey, add that in with the mask!)

The Cancer-Fighting Kitchen – My sister introduced me to this book and honestly, my sister and her chef husband are the main reason I ever ate anything out of it! It’s full of so much great information! Recipes are stuff you can make ahead and freeze for when you are on chemo weeks and just can’t stomach eating. I remember specifically eating leek soup and carrot soup. The mineral bone broth recipe is quite extensive but so very healing. Delivering a batch of mineral bone broth + a copy of the cookbook will be sure to lift their spirits. So very thoughtful!

No Cure for Being Human – While we are on the book front, this is another great one. Written by a stage IV cancer patient, Kate attempts to answer the question how do we move forward with a life we did not choose? Hard stuff. Important stuff. She is brilliant in everything she writes!

Worry Dolls – I was gifted some of these from a good friend and I thought it was so sweet. Honestly, I had never heard of the tradition before. According to legend, Guatemalan children tell their worries to the Worry Dolls, placing them under their pillow when they go to bed at night. By morning the dolls have gifted them with the wisdom and knowledge to eliminate their worries. The story of the worry doll is a local Mayan legend. It’s a unique gift, an unexpected treat sure to make them smile.

Ohyouresotough – This shop has the cutest funny cards and gifts for cancer patients. Seriously. Go check her out. She is funny and brilliant and support small bussinesses!

Additional ideas to consider: gift card for acupuncture (often helps with side effects of chemotherapy), starting a meal train (be sure to ask about any dietary restrictions, preferences etc.), a pretty journal with a pen, or what about a random snail mail letter letting them know you are thinking of them? I cannot make this up that a friends father clipped out comic strips for me and mailed them to me every week. Religiously. I never forgot it. I still have them.

If you click on any of the links above, I am going to receive a tiny commission. YOU, most of the time, will receive an offer, so it’s a win-win! The products I talk about on this platform are the ones I truly love!

Colorectal Cancer Support Groups

I’ve been thinking lately about how all of our cancer experiences are so different. I mean that based on our access to care and information, to surgeons who will agree to operate etc. I read just the other day a fellow CRC friend comment she found a surgeon who was willing to operate on her stage IV colon cancer through a support group.

That’s so important! There are so many clinical trials and advances in treatment that it can be overwhelming to know where to look and how to search etc. I’m going to pool just a few resources that I know of that are great for finding clinical trials and colorectal cancer support groups. This is a short list, but these are a few that are useful if you are starting out or don’t know where to look:

  • Mybluem.org is an organization I am an ambassador for! It’s a community created for patients by patients and here, once you register, you’ll find a wealth of information including some really neat things like a whole section on podcasts, ostomy support, sexual health. So many great things that impact us as early onset survivors. Check them out!

  • Fight CRC is such a great group that has a wealth of information on clinical trials, support groups, and even a whole resource library based on your stage of cancer. If you or a loved one has colorectal cancer this organization is a great resource!

  • If you are specifically receiving treamtnet at MD Anderson Cancer Center, they have a lot of support groups I did not even know existed, and I received treatment there!

  • clinicaltrials.gov – I have no experience with this platform myself, other than hearing some advanced CRC friends mention it as a resource. Definitely something to check out if you are looking for clinical trials.

  • There is also a whole community of early onset CRC patients and survivors I’ve gotten to know well through Instagram! It’s been wonderful, therapuetic, healing (sometimes heartbreaking) to form so many wonderful friendships through such an awful experience. Come find us! We are surviving this disease and leading fulfilling lives!

Stay well – xoxo

Rectal Cancer Symptoms

March is colorectal cancer awareness month and today I wanted to dedicate to symptoms. Specifically, rectal cancer symptoms. Because I did have colorectal cancer but my cancer was in the rectum, not my colon. I know this because when I was first diagnosed I remember asking, “So, this is colon cancer?” because that sounded way better than declaring to everyone I had rectal cancer. It was not in my colon, which my surgeon ever so eloquently and dryly explained to me.

If you look up ‘rectal cancer symptoms’ you will find a list to include:

  • A change in bowel habits, such as diarrhea, constipation or more-frequent bowel movements
  • Dark maroon or bright red blood in stool
  • Narrow stool
  • A feeling that your bowel doesn’t empty completely
  • Abdominal pain
  • Unexplained weight loss
  • Weakness or fatigue

In fact, colon cancer and rectal cancer treatment can be quite different because the rectum is such a small organ that sits barely removed from other important organs, so this often makes surgery quite difficult. It has been my experience that colon cancer patients seem to have surgery first to remove the tumor, while rectal cancer patients usually undergo treatment first in hopes of shrinking the tumor before going in to remove it. I actually wrote a post about a year about that detailed all my symptoms.

Being diagnosed young had me overlooking all kinds of symptoms just because I never knew. I didn’t know anyone with colorectal cancer (close to me). It was a distant thought in my head. I had heard of colorectal cancer before, isn’t the main symptom blood in stool?? Sure, I knew something was happening but I was also moving across the country, pregnant and postpartum so figuring it out took me a little longer.

The symptoms I experienced in varying degrees were:

  1. Urgency/Constipation – This is one of the symptoms that sticks out the most for me because I definitely remember it to the year prior to diagnosis.  I know it seems odd to have these two sensations together.  Know how when you’re pregnant you have to get up and pee multiple times a night? Well, I had that except it was to poop. I would frequently get up at night and feel urgency to go and then wouldn’t be able to empty my bowels all the way.  
  2. Change in Stool  – Somewhere along the way (I can’t exactly recall) I did notice my stools begin to change shape. They were longer and thinner.  But HELLO, I was constipated, doesn’t that make sense? It’s not like my stools morphed into some seriously weird stuff, they were just a little…different. The change wasn’t alarming to me, I just chalked it up to constipation.  
  3. Weight Loss – I did steadily lose weight but I was also postpartum and breast feeding so the weight was not an alarming symptom at that time in my life. It was also very slow. Slow but steady.
  4. Anemia – In December 2017 I went to a new OB in Florida when I found out I was pregnant with my daughter.  Took them about 1-2 months to call me back and tell me my routine bloodwork showed I was very anemic.  If I recall correctly, my hemoglobin level was at an eight or six, which is extremely low.  Oh, I don’t eat meat I told them! I was put on an iron supplement and my iron levels came up to normal and stayed that way throughout pregnancy.
  5. General Change in Bathroom Habits – I don’t really know how to categorize this one so we’ll leave it at this.  If I really think back I can trace to beginning to notice something being different summer 2017. I felt like I was beginning to deal with more gas, urgency , something was just different. During this time I was also smack in the middle of serious postpartum depression and drinking heavily so I also chalked these changes up to lifestyle at the time.  (Honestly, I could write a book about this period in my life, its very much a hard thing for me to talk about because I am ashamed of it).

In a nutshell, those are the symptoms I can recall experiencing prior to diagnosis. I didn’t realize how serious they were until I was smack dab in the middle of a cancer diagnosis. I had never read anything about colorectal cancer symptoms or known anyone in my life close to me who talked about it. So here I am, talking about it. It happened to me. You are never too young!

Startling Colorectal Cancer Stats You Need to Know

March 1st marks the beginning of Colorectal Cancer Awareness month and in the next few weeks I’ll use this platform to highlight my own experiences as a rectal cancer survivor in hopes that it can somehow help another person out there. Never in my wildest dreams did I think cancer would affect my own life, let alone leave me with a permanent ostomy. Here are the facts about colorectal cancer you need to know:

  • Colorectal cancer is the second leading cause of cancer death
  • The American Cancer Society has recently lowered its recommended screening age to forty-five years old
  • African Americans, people with family history of colorectal cancer, history of polyps, history of undiagnosed stomach issues should seek colonoscopies much sooner
  • Early screening is key, as this is a slow-growing cancer and regular colonoscopies remove any polyps before they can turn into cancer

Probably the most startling and important fact about colorectal cancer is that it is on the rise. If you find yourself in the millenial category, your risk of rectal cancer is four times greater than people your parent’s age. Read that again: the people getting this cancer are not your parents friends, they are your best friend, your sister, your co-worker. This post isn’t about why that increase is occurring but moreover making sure this disease is no longer defined as something that affects those “fifty and older”.

Millenial’s also need to be aware that colorectal cancer in younger people is often diagnosed at much later stages due to being misdiagnosed or individuals putting off seeking treatment. We will highlight symptoms of colorectal cancer in another post but any changes at all in bathroom habits that aren’t cleared up within a week or so should be brought to your doctor’s attention. Our bodies are good at giving us indicators when something is off, but we have to be mindful and aware of our bodies natural habits. Our lives are busy and hectic but taking a moment to stay in tune with your body could greatly benefit your health.

While we’re on the topic of doctor’s and bodily functions, let’s all take a moment to remember that we’re all adults here (well, most of us…) and that everyone poops. Literally everyone. If you don’t, it will result in serious medical complications. Take this moment to realize that it’s serious to be honest with your medical providers about symptoms, even if you think they are embarrassing. I can assure you, ending up in the emergency room with a rectal exam while in writhing pain is no cakewalk either.

Ways to Lower Your Risk for Colorectal Cancer

While regular colonoscopies and screening will help prevent colorectal cancer, there are actually actions you can take yourself to lower your risk for colorectal cancer:

  1. Get screened at the appropriate time based on your personal risk factors
  2. Eat real food, mostly plants, not too much
  3. Get regular exercise to maintain a healthy weight + immune system
  4. Avoid smoking and drinking alcohol
  5. Take control of your mental health and find a routine that works for you

While we can all say we’ve probably heard the above statements can benefit our health, how many of us have actually put forth the effort to incorporate them into our lives? I think you’d be surprised that doing so will not only lower your risk for colorectal cancer, but greatly improve all factors of your life including but not limited to: better sleep, skin, improved mood etc.

Again, this is not a post to fear monger, but rather to put a buzz into young people’s ears that this is happening. It happened to me. It can happen to you.

Please note that I am not a doctor and any and all medical conditions should always be discussed with your own doctor and that is not google. Power and community is in sharing our experiences and knowledge.