My experience with colorectal (adenocarcinoma, T3aN0M0 [Stage 2]) cancer officially began on the 9th of October in 2017. After 8 rounds of chemo and 27 rounds of radiation, I arrived at surgery. Unfortunately, I came out on the other side of surgery with a permanent colostomy. Learning to live with an ostomy hasn't been a breeze, but hopefully sharing what I learned can help someone with this transition.
The Initial Shock
For some people, an ostomy is a welcome change from issues such as inflammatory bowel disease. For others, it comes from a traumatic life event or as part of a fight with cancer. For anyone receiving an ostomy, there will be an initial shock.
Going into my surgery, I knew that waking up with the ostomy on my right side would mean that it was temporary and on the left side would mean it's permanent. My initial shock came when I awoke and any hope of this being temporary vanished.
A colon resection is a major surgery, and with any major surgery, there's always recovery and often a lot of pain. This type of surgery, particularly Lower Anterior Resection (LAR), comes with a high probability of damaging some nerve tissue around the bladder; it can be very unpleasant and cause re-cathing, but these troubles should be short-lived. Open and honest communication with a healthcare team is critical and can alleviate a lot of suffering; most problems that will be encountered are not uncommon and this communication ensures that those common solutions (medication, movement, etc.) can be provided.
After surgery, the stoma will be inflamed and it will take time for the swelling to subside. Cutting each barrier to size is tedious at first, but with some practice, it becomes quick and easy. More importantly, after the body heals from surgery, the stoma size will become constant and pre-cut barriers can be ordered. This eliminates the need to cut each barrier and eliminates potential sharp edges.
Approximately three to nine months after surgery, life should be able to resume (relatively) as normal. There will still be adjustments and lifestyle changes, but these become trivial. The body can take over a year to fully recover; however, the major issues are up front and everything gets exponentially easier as various body parts finish healing.
The important thing to remember is that "this too, shall pass."
The Best Fit
There are a handful of suppliers and they're all absolutely terrible companies to deal with. It's common for a Wound Ostomy Continence (WOC) nurse to have a working relationship with a supplier, but that doesn't mean the supplier cares anything about customer service. As a patient, it is important to research and shop around to find the best option. Suppliers, such as Byram, that provide a website to re-order previously purchased products, may still be terrible and provide a terrible website, but at least re-ordering won't involve much effort.
Some WOC nurses will try to help by placing orders, but it's common for these orders to be inaccurate or incomplete. It's often best to ask the nurse what they recommend and then place an order or request a sample.
Fortunately, unlike suppliers, manufacturers tend to have a strong vested interest in making sure patients are satisfied; they have sales staff available to help determine the best "appliance" to fit a particular person. These staff members are typically very friendly and eager to help. They should be able to answer questions about products available, provide samples, answer concerns about a product/sample received, offer alternatives, offer general advice, etc.
Although no individual is identical to another, the problems encountered are rarely rare; even if a "perfect" solution can't be provided, what's available should be able to adequately handle most problems. Seeking samples from various manufacturers is an excellent way to find just the right fit.
Some basic research should include looking at a catalog provided by a supplier or two. Byram provides a massive, disorganized, but helpful catalog which includes some some nice tips for measuring, management, diet, etc. After finding some interesting products, do a search to find the company's website. On the site, look for an option to request a sample--sometimes in the product list--or look for a "contact us" page. If some of the products seem confusing, then go straight to that "contact us" page and (ideally) call the manufacturer and ask for help deciding what product is best.
Coloplast and Hollister have been more than happy to provide a few samples and even ask if it's okay to notify someone of new products that may potentially be relevant and helpful so that samples of the product can be provided.
Once the right fit is found, the ostomy experience changes from a daunting chore to little more than brushing teeth and flossing.
Simple but Effective Tools
Hollister provided one dark disposal bag for each throw-away pouch, but Coloplast provided a larger/heavier bag for multiple pouches. As disgusting as that may sound, the implication provided some simple enlightenment.
Rather than relying on the bags they provide, the larger bags are now used when traveling. One of the larger bags is put underneath the bag in the restroom garbage can and disposed of at the end of the trip. If using room service, it may be a good idea to bring along a few extra.
Depending on the company/product chosen, the disposal bags may be adequate. With Coloplast Sensura, it will be the larger bags and smaller individual-use bags can be substituted with bos bags, or similar.
Rather than tossing each bag into an open bin that others might frequently walk by, a litter genie is an excellent way to keep these hidden away. The lid carrying the product name can be removed without impacting it's ability to retain odor. It even provides a discrete place for women to dispose of feminine hygiene products. It's wise to shop around for cheaper replacement bags; they're often at least 50% cheaper.
Any belt found in a supplier or manufacturer catalog is likely going to include only medical belts used to treat certain issues, such as a herniation. Another type of belt is designed to help conceal the ostomy bag. StealthBelt is a well-known example of this latter type.
These belts are designed to be comfortable, keep the bag discreet, and eliminate odors/sounds. Unfortunately, they also tend to retain a bit of heat and can cause a barrier to fail (blow-out).
Instead of opting for the belt, a t-shirt underneath a loose-fitting shirt can offer nearly the same benefits, without the risk of excess heat. Some barriers are nicer to live with than others, and other barriers handle excess heat/sweat better than others. Remember the importance of shopping around; there's no harm in finding two products that work well in different situations, such as with or without a belt.
Regardless of whether a belt is used--but especially so--it's extremely important to watch out for signs of a blow-out. A common symptom will be itching around the peristomal skin or an unusual sensation of "pancaking."
It's impossible to say if a belt is appropriate for some, just the same way it's impossible to say if an appliance will be right. It's a bit of a trial-and-error situation. Fortunately, this situation is all within the control of one person.
Many troubles with an ostomy are well-documented and easily-researched. A few, however, have some elusive answers.
First of all, large white bumps on a stoma are most often normal and caused by irritation. When they first show up, a surgeon may want to biopsy them, but it's most likely they're just from irritation. They may or may not ever go away.
A hernia or prolapse will be terrifying the first time they're encountered, but neither should carry concern about visiting an emergency room. Instead, continue practicing healthy care and contact a WOC nurse to decide what steps to take next.
It should be noted that improving muscle tone and a healthy diet greatly reduce the chance of a hernia/prolapse.
Traveling with an ostomy is not terribly difficult, although it does require some special consideration and planning.
Filters tend to work, but only for short periods of time. If a good diet is maintained, then it should be possible to make use of stickers that cover the filter, which can be temporarily/permanently removed. These stickers help ensure no odor gets out, and help keep the filter from getting plugged from the outside.
As mentioned above, bringing the right quantity and size of disposal bags can be extremely helpful. A large, heavy-duty, dark-colored bag is great to place beneath a trash can liner, and smaller bags are ideal for each disposed pouch.
Most hotels hang a hair dryer up in a bag, but the hair dryer can be placed anywhere convenient and ostomy supplies placed into the bag. This provides a nice discrete way to keep all necessary items handy while remaining inconspicuous. In this scenario, even if someone happens across these items, it's not likely the same person will do so a second time.
If it's possible to tour a destination with a backpack, then it's wise to bring two sets of ostomy supplies. One set can remain in the room, and another set can be carried along for any urgent needs.
Living with an ostomy is an adjustment. It takes time to recover and to get used to a new way of living. A new standard for life will eventually emerge and the problems that once terrified will become tiny blips in history.
"Tough times do not last; tough people do last."