Posted in colorectal cancer, ostomy, rectal cancer

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!

Posted in Uncategorized

Coffee Alternatives

I’ve recently tried to cut out coffee after 1pm (ok, 2pm). I honestly don’t have a ton of issues with sleep, but I do know that I drink a ton of caffeine, so in the name of health and better habits I’ve recently tried out some better alternatives! Here are my thoughts:

Breakaway Coldbrew Matcha – (25mg caffeine per serving) This is so interesting because it’s cold brew and I’m always on team iced! I got this as a gift and I was not used to seeing cold brew matcha, I thought it was unique! Matcha is known to help stabilize blood sugar levels, so it’s a great choice for diabetics (or really anyone!). To get the full benefits, it’s best not to drink with milk (see their FAQ page); however, if you’re looking for a healthier alternative this is definitely a good one to try. I don’t mind the taste, though I do sweeten it with some honey!

Amazing Grass Green Superfood Effervescent Greens – (85mg caffeine per serving) Ok. I’m going to be totally transparent on this one, these do not taste good. If you are a baby about stuff tasting “healthy”, please scroll past. However, I really love these! I have purchased these a few times. No idea how I came across them but they are convenient to drop into water bottles. I definitely get a noticeable boost of energy with these and I like the way they make me feel. No jittery feeling. Also a plus for anything that has a serving of greens in it. Two thumbs up!

Liquid IV Energy Multiplier – (100mg caffeine per serving) I’m sure you’ve likely seen this brand all over Instragam. Truthfully, this was an impulse Costco buy that did not disappoint! The ginger-lemon flavor is actually quite good! I kept a few of these in my purse and at work for a quick and convenient alternative to afternoon coffee. Definitely will purchase again!

What are your afternoon pick-me-up faves?

Posted in Cancer, Real Life

March Madness

In the spirit of trying to begin things I actually want to do (enneagram 9), I am going to challenge myself to write one blog post a day in March. Just really trying to get this platform going, creativity flowing and improve my writing. I’m sure some posts will be long, thoughtful and deep and others will be just pushing out content but such is life. I’ve given some thought to the kind of content I want to create and I’m sure it will morph but it will include:

  • Colorectal cancer awareness – as much as I always think I don’t want to be defined by my rectal cancer, it is a part of my life. It has affected so much of my life from my physical appearance, fertility, mental state etc. It’s important and I do feel like I have some value to add and share.
  • Clean personal care products – I will continue to share my personal care favorites I find that are safer for our home and skin
  • Gardening tips and hacks – gardening has become such a great respite and hobby for me. Something about getting your hands in the earth + grounding really feeds my soul – I hope to learn more throughout the year and share with you
  • Ostomy life – this is a huge part of my life that I’m still figuring out but I’m also realizing how many people have ostomies. Every time I mention it, someone comes up to me to tell me a story about their ostomy or someone they know. I think there’s a lot of knowledge to share here too and I’m hopeful I can be of service along the way

So thank you so much for choosing to take this journey with me. This challenge is more about keeping myself accountable and getting into the habit of pushing out content everyday. I have had this blog for years and believe it or not, I built it all on my own! There was a lot of hours of troubleshooting to get this thing going. I do think I have value to share but sometimes the action needed can feel overwhelming. So while every piece of writing on here may not blow your mind, thank you for being here and encouraging me along the way.

Let’s make life wonderful!