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!

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

The best medicine…

A few years past my diagnosis and surgery I have finally begun to process a lot about my cancer and ensuing treatment. Make no mistake about it, rectal cancer treatment is awkward and weird (for me at least it was, but I don’t let that shame own me anymore).

There are quite a few instances of things that stick out in my head: the rectal examinations from different doctors (so many), rectal contrast, having doctors constantly coming in the room to ask if you can roll over so they can look at my butt and ‘flap’ (this is what they called the reconstructed part of my vagina). Oy vey, I do not miss the hospital!

Rectal cancer is not funny. At all. But I would be remiss if I did not think back to some moments during my journey and laugh.

…coming out of the bathroom on one of those first visits to MD Anderson and exclaiming to my husband and mom “I pooped!” They both cheered! At first we thought a stent might have to be put in so I could continue to pass stool…that never happened…

…My surgeon, Dr. You at MD Anderson, reminding us this was going to be a marathon not a sprint, to which my husband replied we really don’t even like walking out to check the mail…

…the time after surgery when I commented I literally never had a reason to get up with my ostomy AND catheter both in. My husband immediately remarked how wonderful this sounded and confided he was jealous!

The truth is, medical providers giving you this treatment have done this so many times. It’s my hope in sharing this that we realize the worst things that happen to us, we can get through. We can endure. Often times in the moment with tears and anxiety and afterwards with tears of relief and laughter. Not always. But sometimes.

It was a few days after surgery and my team had finally removed my catheter. I was expected to pee a certain amount to signal my bladder was working. Initially, I thought nothing of this. However, as the day ticked on, the nurse came back in and casually mentioned catheterization if I couldn’t pass a certain amount of urine.

WHAT?? No.

That’s definitely going to hurt. I started drinking water and began to slowly realize that…my bladder was not working…I couldn’t really feel any sensation of having to pee. A lot was going on post surgery, so it took a while for this to dawn on me. As the hours wore on, I became increasingly anxious of having to have the catheter put back in. I know it might seem silly, but all these little things I viewed as set backs and it was hard not to spiral. I dedicated a lot of time sitting in that bathroom with various audios of rivers and streams playing. I willed it. I meditated it. I remember at one point David followed me into the bathroom and told me to calm down. I remember turning back around and exclaiming, “Don’t tell me to calm down, its not YOUR body!”.

At some point I realized my body was not doing this naturally and paged the nurse. An ultrasound was done on my bladder, which confirmed lots of pee. My bladder wasn’t working. The nurse indicated sometimes the bladder took longer to wake up from surgery and they would just catheterize me to give me some relief and give my bladder more time to wake up. Don’t worry, in the small time frame here I did lots of google searching. No message board was left untouched. The nurse asked if she could bring another female nurse in to help. Sure I thought, invite the whole floor please.

The nurses came back to the room and I entered full blown panic mode. It was going to hurt and I knew it. I knew it. I had my legs spread, my mother holding my hand on one side of me and my husband holding my hand on the other side of me.

“Do you mind if we tilt your legs up some? It will let us see what we’re doing better…”…..Sure I thought…perfect….my legs are now spread, tilted upwards somewhat with my mother holding my hand on one side and my husband on the other. As I prepare for mutilation, I suddenly hear they are commenting it’s working. The bladder is draining.

“Oh, I didn’t even feel anything,” I said relaxing my death grip.

“Well, then that means we did it right,” the nurse laughed back.

Of course I was embarrassed for making such a scene about it but the nurses were very kind and understood. Edit to add I always had good nurses. A lot of them were young and my age it seemed. I remember one writing me a special note on my board before she got off her shift when we didn’t see each other.

None of it was done gracefully or bravely. It was done messy through anxious tears and anger. Honestly, I sometimes still can’t even believe it happened to me. It’s been a lot to grapple with, the road taking that twist you never expect. I guess it’s the one thing we can come to expect. It will toughen you up for sure, but hopefully you can find some laughs along the way.

Much love.

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.

An Ostomy Story

“I should be able to reconnect you,” the surgeon said to me as she sat across from me at MD Anderson in Houston. After being diagnosed with stage 3C rectal cancer, I had traveled to MD Anderson to get a second opinion regarding my surgery and treatment since the tumor had invaded other major organs.

“Ok, great! What does that mean?” I had no idea what I was in for. To say I had no idea about this cancer world would be a drastic understatement. The ports, infusions, never ending appointments and ostomies, I had no idea about any of it. I was as shocked as any to learn that I needed a port inserted into my chest so I could receive treatment. Wait, I need what?

I became an ostomate on August 20, 2019.

When my surgeon, Dr. You at MD Anderson, explained to me what an ostomy was I was…bewildered? I can’t even recall exactly except to say that I thought to myself, “Oh yeah, I think I’ve heard of that before, I’ve seen that before I think.” I was told I would have a bag, most likely temporary, and that I would be reconnected once I had healed from surgery. As I focused on finishing my chemotherapy and radiation treatment, the surgery was always looming in the back of my mind. I knew it would be the last and final (hopefully) thing I would endure. It was also the scariest. The most anxiety inducing.

August 20, 2019 – in recovery room right after surgery at MD Anderson

As August 20, 2019 approached, I set off to Houston, Texas to begin the flurry of pre op appointments. In the meeting with my surgeon we went over my recent scans and the plan for surgery. She urged that I needed to be mentally prepared for either outcome: a temporary ileostomy or a permanent colostomy. Wait, what? What happened to the reconnection? She ever so eloquently explained to me that my tumor was not super low (7cm up); however, she would not know until she got in there and started looking at margins how it would all go. She possibly might have to cut out more tissue to get clear margins. Radiation had also caused significant scarring that could be seen on the scans and would have to be worked around. We discussed a lot in that meeting: margins I comfortable with, margins SHE was comfortable with, quality of life with and without the bag. I left that meeting more flustered and nervous than ever. On top of anxiety over surgery I was also dealing with the uncertainty of how it would all unfold. I did not expect so many decisions having to be made intraoperatively.

One thing did stick out in my head. In the discussion with the surgeon, I latched onto her telling me a permanent colostomy involves the large intestine and would be located on the left side of my abdomen and a temporary ileostomy involved the small intestine and would be located on the right side of my abdomen.

Left side = colostomy

Right side = ileostomy

Left side = permanent

Right side = temporary

I managed to make it through the twelve hour surgery (alleluia) and woke up as I was being wheeled back to the recovery room. As you can imagine, I was super drowsy and out of it from anesthesia but felt no pain. In the recovery room there was a flurry of activity around me, nurses talking to each other and to me and hooking up machines. In an instant, I heard one nurse say to another something about watching out for my colostomy.

Colostomy.

She said the word colostomy.

Permanent.

In what felt like a second later, the surgical fellow came by to see me. A young curly haired blonde woman, I swear she lived at the hospital. She would often do her rounds at 6am and then would stop by my room later that evening. I looked at her groggily as she stood at the foot of my bed. She explained that the surgery went very well and they were happy with the outcome. They expected pathology to come back in a few days.

I just stared at her, “Is my colostomy permanent?”

She looked at me for what felt like an eternity (I think she was surprised I was already asking) and said, “Yes”. I can’t even recall what my reaction was. I was still trying to understand what was going on. She continued, “Catherine, you are going to live a long life. The surgery went very well. You are going to live a long life and you can do that with a colostomy. You will do everything you did before this. It will be ok”. I am paraphrasing obviously as I do not remember word for word what she told me but I remember her repeating over and over “you are going to live a long life”. I’m pretty sure I did not cry, I just sat there trying to comprehend it all. We finished our conversation and she left.

The first person to come back and see me was my husband. He later told me he wanted to be first so he could break the colostomy news to me. I think the first thing I said to him was, “The colostomy is permanent”.

I already knew.

I spent the next week in the hospital recovering and fully ignoring and pretending the ostomy was not there. At first the nurses thought this cute and funny. However, as the week progressed I had one nurse tell me I was going to have to do a bag change on my own and get some training before I was sent home. Ugh. They would let me ignore it no more.

I guess I am writing this because I have been struggling lately. Honestly, I haven’t had a lot of issues with my colostomy. It kind of just…works. Mentally; however, I have been having a hard time. Sometimes the weight of having it be so permanent is overwhelming. I will live my life with this ostomy (God willing) for more years than I lived without it. The thought of having to spend the rest of my life with this bag attached to me gets overwhelming. I will never leave the house again without worrying if I have enough supplies or extra clothes.

Artwork by @emjayuc

For the most part, if you saw me, it is not obvious I have an ostomy. Yet, it’s a mental (and physical) weight I carry with me everywhere.

Can other people tell?

Can they hear the bag rustling?

Do I smell?

Is it obvious in a swimsuit?

How do I talk to my kids about this?

Do people think I am gross?

For a long time I felt I was just trying to get accustomed to this post cancer life. I did my best to lean back into life and the day to day responsibilities of being a wife and mother. But sometimes things just feel heavy. They have felt heavy for me lately. Maybe it’s the quarantine, being cooped up and the uncertainty of what life looks like in the months moving forward but I have been struggling.

I yearn for the carefree days of wearing whatever I wanted whenever I wanted. I mean, let’s be honest, I was not rocking bikinis or midriff baring shirts in the first place. However, now I am trying to dress a body that not only has morphed in size and shape over the last year but now I am dealing with dressing a body with an ostomy. Pants and shorts sit differently on my body. Clothes in my closet no longer work on this post cancer body.

Artwork by @amjayuc

When I was a kid and would complain about things my grandmother would often tell me to “offer it up”. I have thought about her a lot lately. I try to keep in perspective that I survived stage three, almost stage four cancer. That these scars at least mean I’m still alive. That someone certainly has it worse than me. That I should be thankful my cancer responded to the treatment. That I haven’t had a ton of issues with the ostomy.

Just because I carry it well doesn’t mean it’s not heavy.

As I begin to get back into journaling, I’ve been reflecting on what word I’m going to focus on this year. [Yes, I realize it’s already May and I’ve got a late start.] I keep coming back to the word grace. Not only the name of one of my best friends but also what I’ve been trying to extend to myself lately. I try to remind myself that my body is still physically healing and my soul might take a little longer to heal. I’m trying to give myself grace that I can sit in sadness about my ostomy but try to move through it. I remind myself that I am able to do everything I did before. Possibly with more supplies and baggage, but hey, I can do it!

I’d also like to be better about extending grace to others in my life. To live in a way where I give the benefit of the doubt that everyone is doing their best. That everyone deserves grace. That we all carry around our scars and baggage differently but surely it is there for everyone.

For whatever reason this season of life has just been tough for me. Post cancer life has been different and an emotional rollercoaster [amplified by menopause]. I am now navigating it in isolation and it’s just felt extra heavy. For now I’ll remember to give myself grace as I try to navigate the new normal going forward.