Welcome to the blog! I am celebrating ONE YEAR of Chronically Juliann. What a year it has been. At the inception of this blog I was in the middle of a month long stay in the hospital. I was admitted for severe high ostomy output that was dehydrating me. Upon discharge I had a mediport that would sustain my life for the next 9 months. IV fluids, TPN, and frequent rounds of antibiotics became necessary to survive. My strength dwindled rapidly until I required a walker. In an attempt to get a diagnosis and accurate treatment we moved to California. Leaving our home in Alabama during a pandemic was frightening. But I was properly treated for CDiff and improved greatly over several weeks. I still am struggling with IBD symptoms, but am managing it on an outpatient basis. I no longer suffer from chronic dehydration. I even got to have my port removed! I am truly enjoying life in a new way now.
One thing I strive to do with this blog is teach about ostomies, give advice about living with chronic illness, and offer my perspective on overcoming hardships. In order to continue teaching I have decided to start vlogging again too!
Today’s video answers some of the most frequently asked questions I get about an ostomy (by way of my best friend Chloe.) I hope you learn from it, whether you are someone who is getting an ostomy in the future or someone just wanting to learn about a weird medical thing.
After months of not feeling well and not having the energy to do much of anything, I had a nearly three week streak of feeling good! Will and I decided to take advantage of my strength and energy by going on a road trip to Austin, TX. We traveled from Alabama to meet my sister and brother in law. The trip was incredible, including the best meal of my life, live music, and lots of quality family time!
Overall I felt great for the whole trip. I was worried about dehydration due to changes in diet and more activity, but I stayed diligent in drinking water and finding healthy foods even when stopping quickly on the road.
It was such a wonderful experience to be out with my husband and family. Seeing Will and my brother in law, Robert, get along so well made my heart happy! Spending time with my sister, Shawna, brightened my spirits and inspired me.
We traveled with Walter, my service animal, which was so rewarding, but also came with unique challenges – some of which I had not anticipated fully. In this post I will discuss tips for traveling with a service dog, keys to successfully staying healthy while traveling, and important things to remember when you have an ostomy.
Ostomy & medical tips:
An ostomy should never hold you back from doing the things you want to do to. That is especially true for traveling! My ostomy actually allows me the freedom to go different places, eat new foods, and experience different environments without the fear of problems. There are some very important things to remember when traveling with an ostomy, however. The three most important things I strive to do is hydrate with water often, bring extra ostomy supplies, and always listen to my body.
First, and foremost, HYDRATION IS KEY. On a normal day an ostomate should take in over two liters of water. But the stress of travel on your body and changes in diet can result in dehydration quickly. Drink at least two liters, but increase that amount if you feel lightheaded, weak, or notice your output thinning. Avoid alcohol, as it accelerates dehydration in the body.
Next, make sure to have enough supplies for the length of your stay. I always bring extra bags and wafers in case of an emergency leak. If you will be in the ocean or pool bring even more, as the prolonged soaking and/or chemicals in the water can wear out your bag faster. Luckily I did not have to change my wafer at all over the trip, but did replace my bag once.
On a related note, bring extra medication in case your trip gets delayed. I also recommend bringing some PRN medicines, such as nausea and pain medication, in case something arises. Due to the change in diet, over the course of five days I needed several doses of Zofran. It truly was a life-saver.
Super important: WASH YOUR HANDS AND USE HAND SANITIZER. This is sound advice even when you are not traveling, but especially if you are going to be in more public places during your trip. Rest areas are used by hundreds of people a day and are crawling with germs. In order to avoid picking up a virus, wash your hands often.
Service dog tips:
• Bring any documentation for your service animal you have in case the hotel requires it.
• Travel with a crate so you can board the animal if necessary.
• Have a travel water bowl that you fill up multiple times a day, especially if it is hot outside or you are walking more than usual.
• If driving, stop often to let your animal go to the bathroom and walk them at least 15 minutes each time. Traveling in a crate for long distances can be stressful on a dog. In my experience, most rest stops have a grassy area suitable for walking dogs.
• Remember that if you are in a new place your dog may need time to adjust to the new smells, people, and environment. They may become overwhelmed. So, listen to your dog and be patient throughout the trip.
I would recommend Austin to anyone looking for an exciting weekend. We enjoyed all the wonderful food, including my favorites III Forks Austin and the Salt Lick BBQ. We sang and danced at Darwin’s Dueling Piano Bar. But most of all we just enjoyed each others company. I miss the Saylers already and look forward to our next trip.
For now, I will stay on fluids and rest for the next week because this trip was a lot! But in the best way possible.
Ordering ostomy supplies can be really overwhelming. There are so many different companies, styles, and products to chose from. Luckily most companies will send you free samples of their products for you to try – but putting in a real order can be stressful if you are not confident you’ve found the right products. I personally have changed what type of bag I use multiple times and ordered products I never used again because they didn’t work well with my skin, or some other issue. To help you have a better working knowledge of the products at your disposal, I thought I would share an in depth look at what I use. I am going to highlight both my stock orders and what I keep in my daily bag that travels everywhere with me.
As I previously mentioned companies want to work with you to help in the transition period after surgery (or any other time you have an issue, such as skin irritation or leaks.) I talk to my case manager at my supplier Edgepark regularly when I need an overnight sample. Convatec and Coloplast also have incredible support lines and have even shipped products to a vacation address when I ran low on a trip! Utilize these services and take advantage of the high quality, free samples they have.
When I first had my bag placed I was told to use flat wafers, but I suffered from miserable leaks for weeks! I suffered over a month of terrible skin irritation, pain, and embarrassing bag changes in public. It wasn’t until a Coloplast ostomy nurse talked to me about convex wafers that I found success. I then ordered a selection of samples from each of the top three companies (Convatec, Coloplast, and Hollister) in order to find my perfect pouch.
What do I order?
Which leads me to my first product review…. ostomy pouches! This is probably what I struggled with the most, and honestly still fool around with new bags when companies release new lines. Like I said before, I didn’t realize the source of my leaks was from wearing the wrong type of pouch. So let’s break down all the different kinds available.
Flat wafers are exactly as the sound, the whole mechanism that attaches to your skin is flat. Most ostomates do well with such wafers. The rule is that if your stoma sticks out from the skin 1″ or greater, a flat wafer will be just fine. The wafer and pouch are generally attached to each other, so we call this a “1-piece system.” There are endless amounts of different types to try. Each company has at least three different style options (and some have even more.) 1-piece systems require a stoma ring, which I will discuss further down.
Remember when I said most ostomates do ok with a flat wafer? Well, I am one of the interesting ostomates that does have a 1″ stoma tall stoma, but I also have a small opening at the base of my stoma that releases output. I am therefore in need of a more specialized wafer, called a “convex wafer.” As you can see in the photo, it has a sort of hump that helps with this problem. Ostomates with shorter stomas or prolapsed stomas often require convexity as well.
Convex bags come in two forms – 1-piece or 2-piece systems. I order both types and interchange them as needed. I will give you a perfect example of why you may need more than one option. As you can see in the photo, the 2-piece has a pre-cut hole that measures my standard stoma size (1″ in diameter) and the 1-piece system is a cut-to-fit, meaning I measure my stoma and it accommodates size variation. Right after surgery I had frequent fluctuation in the diameter of my stoma, but since then it has been uniform in size for months. I had all but thought to stop ordering cut-to-fit bags… but luckily I had a few left over because yesterday my stoma began swelling. I had to take off the bag I had on and replace it with a larger hole because the 1″ pre-cut hole was actually cutting into the stoma. So I learned a valuable lesson, that I am now sharing with you now, ALWAYS carry a cut-to-fit in case of emergencies.
The cut-to-fit bags I order are also translucent (or see-through), which means you can see the output and stoma very clearly. While this may sound “gross” or freak some people out, I have found it very useful whenever I am not feeling well, at a doctor appointment, or in the hospital. It allows myself, nurses, and physicians to get an accurate depiction of my health. I order opaque (or covered) 2-piece pouches and wear these when I am doing well and don’t want to observe my poop.
A great function of the 2-piece system is that you can replace the bag without removing the wafer from your skin. This allows for longer wafer wear and less skin irritation. There are two ways a 2-piece system can attach. One, through a “click” method and other a “stick” method. I feel more comfortable and secure with the click, but it really is personal preference. Like most ostomy supplies!
Leakage cONTROL/SKIN PREP
I quickly mentioned 1-piece systems need a stoma ring to help contain leaks. You can also use stoma paste instead of a ring, but I personally do not like it. I find the paste difficult to mold. (But as I will say again and again, it’s all trial and error when it comes to personal preference.) I have tried almost every ring available from the different companies and different widths within them. Overall I am the most impressed with the leakage control of the Hollister Adapt CeraRing. Some rings have latex in them which is dangerous for me, and actually causes my skin to burn away. Luckily this line does not and instead is infused with ceramide which feels very comfortable next to the skin. The slim design is my favorite because it allows the wafer to be close to the skin.
My holy grail of products I found is the Brava Elastic Barrier Strips. I use two each bag change to place around the edge of my wafer. It extends how large an area is covered and keeps the edges of the wafer secured to my skin. Since using these strips, in conjunction with the convex wafers, I have not had an uncontrollable leak. 20 come in a box, but since I use two with each bag change I order them fairly frequently.
To assist in the overall success of a bag sticking to my skin I use an adhesive barrier. I prefer to use a SkinTac wipe prior to attaching my wafer. I will warn that it is very good at its job and can make your fingers sticky if you put it on without gloves. But simply washing your hands will remove the residue. It can also burn if the skin is irritated or raw. Other barrier wipes and sprays claim to be “sting-free”, but I find those don’t usually assist in sticking as well. So I suffer through the few seconds of stinging, then place the wafer on and I am usually ok. I would avoid this if the skin is broken in anyway though.
Speaking of broken skin… every ostomate should have stoma powder. It is not something used with every bag change, but when you need it you will be very unhappy if you are out. Granted I have had my ostomy for 10 months and I am still on my first bottle. It takes a little to go a long way. The best advice I received on how to use the powder is to apply a fine layer on the broken stomal skin, dab with a wet cloth, and then two more layers, each time dabbing with a wet rag between layers. You create a sort of crust that should even out the damaged skin to the level of the healthy skin around it.
In the photo above you will see my chosen adhesive remover method. I love these wipes because they truly work! They take all the residue and built up gunk from around you bag attachment and are actually sting-free. I even use them to remove the adhesive build up after EKG tests, IV sites, or port covers. A single wipe does the job in most cases. Some ostomates use the sprays, but I prefer the little wipes.
What’s in my daily ostomy bag?
I carry an ostomy bag with the essentials for a bag change everywhere I go. While it is mostly made up of a sample of the previously discussed products, there are other necessities.
I carry 4-5 ostomy pouching systems with me. Some 2-piece and at least two 1-piece cut-to-fit. I fit enough stoma rings to match how many bags I have. I never leave without a bottle of stoma powder, my different prep/removal wipes, and the extenders.
I find it important to also have things in case you are doing a bag change in public. A simple zip lock bag to hold the old pouch and disinfectant body wipes are a must! The brands aren’t important, just whichever form you use make sure it doesn’t irritate your skin.
In order to accurately measure your stoma, you will need a stoma size guide. My stoma nurse gave me one when I first had surgery, but I am sure you can order them through your supplier if you need a replacement. Simply place the guide around your stoma until you find the best fit. Then use a permanent marker to trace it out over your cut-to-fit bag. Lastly, use surgical scissors to carefully and smoothly cut out the hole.
I hope this break-down has been useful to you. Remember, utilize samples before putting in a full order, there is use for different types of bags at different times, and trial and error is the best way to determine what works for your body!
Good luck and happy shopping.
There are a multitude of changes that come with surgery, especially if a device is implanted or part of your body becomes exposed in a new way. I’ve had two such experiences, first with my stoma and then with placement of my mediport. On both occasions I spent a great deal of time researching the procedures and gaining knowledge related to their use after surgery. This process included reading all written information physicians gave to me, as well as combing Google for articles or blogs related. This phase of research was vital to acceptance of the changes for me. Multiple blogs I found from those in the ostomate community [ostomate = describes a person with an ostomy] spoke about naming their stoma.
Before I get too far ahead of myself, a stoma is a small piece of intestine that is brought to the abdominal wall for stool (or “output” as its frequently called) to empty into an ostomy bag. It is done when someone has severe IBD or structural deficiencies in their digestive tract. Many people use the word “ostomy” when actually describing the “stoma.” I will try my best to be consistent and use the proper language throughout this blog. There are multiple types of ostomies; I have an ileostomy, which is high riding on the right side of my abdomen. (See photo.) Other types of ostomies include urostomy, for urine, and colostomy, to indicate opening in large intestine.
At first the concept seemed silly and unnecessary, since it already had a technical name (“stoma”.) But I mentioned the idea to my surgeon and she absolutely agreed. She explained in further detail that talking directly to the named stoma, like you would a baby in the womb, would connect you to it in a powerful way. Bonding to it, speaking to it, and nurturing it were all encouraged. I found that by naming it, the stoma took on a personality of its own. I yell at it directly if it is misbehaving, I laugh at it when it makes weird noises, and I refer to it in casual conversation without people getting grossed out by medical terms. It has been very liberating.
My stoma is named “Diglett”, like the Pokemon (pictured.) My husband is the perfect level of nerdy and thought the stump of intestine looked a lot like this Pokemon from his childhood. I agreed! From then on we have lovingly referred to him as Diglett. His name being a little silly has actually prompted a lot of conversations about him that may not have happened without it. There are many people who shy away from discussing a topic if it is deemed “gross” or “too personal.” By having a funny, cute name it breakdowns the barrier of the stoma seeming too “medical” or “sterile.” When I look at my body and see my stoma, it feels more like a friend than an alien species. It made the stoma much easier to accept and live with. It truly has become a part of the family!
Recovering from a surgery as big as a colectomy is daunting. Directly after surgery I was only allowed to lift five pounds total. I quickly realized that nearly everything weighs that amount- even blankets! I also had a strict diet to follow that took time and planning to achieve. My skin was raw and painful from output and adjusting to ostomy bag adhesives. The hardest part of all was that I experienced body dysmorphia because my stomach had a foreign object on it that messed with my self-esteem. But because of the relationship I had developed with Diglett prior to the surgery, I was able to talk directly to it (and about it to others) until I felt better. As time went on I became more comfortable with Diglett and my confidence actually increased as a whole!
My mediport came seven months after Diglett, but we knew it was probably going to be placed for several weeks. This gave me more time to come to terms with the change my body would go through and to research the pros/cons of the device. It was apparent that the port was necessary due to frequent dehydration and hospitalizations. Again, my husband was the one to figure out the perfect name for it. He called it “Portabella” – ‘port’ to refer to the actual device and ‘bella’ to have a short nickname. I love it because Bella is actually an alternative word for beautiful, which I truly believe my mediport is. Its ability to give me the sustenance I so badly need is in fact a beautiful thing.
I have discussed this topic on other platforms, mainly Instagram, in the past and received great feedback from it. A dear friend shared this idea with her aunt and she was so inspired that she named her own mediport “Sadie!” She is now trying to convince her husband to name his knee replacement. My friend wrote to me that her aunt wished her physician would have given her this advice prior to her surgery. She shrewdly pointed out that this process could actually make aspects of major surgery fun, instead of all just scary.
Any device, from a prosthetic limb to a pace-maker, would benefit from a name. Take the time to get to know yours.
If you have a medical device that you’ve named, I’d love to learn the name and discuss if the name influenced your healing. Feel free to leave a comment or send an email to firstname.lastname@example.org.