October 3rd ostomates and caregivers celebrate our life saving surgeries and the subsequent devices that sustain us. Whether you are a full barbie butt, like me, or only experience an ostomy for a short time before a j-pouch, I celebrate you and your journey.
What I’ve gained most from my ostomy is confidence. Both in the sense that I am no longer fearful of having a major accident in public, but also my body image has improved.
I struggled with body dysmorphia for most of my life and thought the bag would make that so much worse. But truthfully, it opened my eyes to see just how powerful my body is. To still be standing after going through so much trauma, pain, and change is a true miracle. So instead of punishing my body with harsh words, I filled my heart with gratitude for myself instead. The love I have for my body now is directly because of my ostomy surgery.
Here’s to all of us who have continued to fight to survive. I hope you see your value and worth every single day.
Have you ever heard an ostomate tell you they have a “barbie butt”? Although it is supposed to just be funny and lighthearted, I think it’s a really good analogy for what your body will look like after surgery. Barbie Butt surgery refers to having your rectum and anus removed, requiring a complete sealing of your butt hole. After healing there is just a scar on your bottom, no more hole! It is most commonly done for patients who require a permanent ileostomy due to cancer or IBD. Some people have it done when their stoma is first formed, however, my doctors were hopeful I could recover and be a candidate for an anastomosis later in life so they left my rectum in place.
It was abundantly clear after about six months that my rectum was still inflamed. I still bled regularly and would pass painful mucous several times a week. I was frequently admitted to the hospital for these issues.
It was a long, arduous process trying to get this surgery done. I was scheduled for it with my original surgeon back in AL in March 2020, but between moving, changing health care systems, and getting all new doctors the process took a while. Even though my new colerectal surgeon ultimately agreed with my previous colorectal surgerons’ reasoning to remove the rectum, he was hesitant due to my age.
If I had a dollar for every person or medical professional who has told me “you’re too young to have anything serious” I would have hundreds of dollars. I really wish people would stop saying it to me (or anyone else). It diminishes my experience of living in a state of chronic illness since I was a child. It also reinforces the idea that younger people are not at risk for major illnesses, but I am here to tell you that is NOT TRUE.
Thankfully, once I explained the extent to which I’ve researched this surgery and how many “second opinions” I had received throughout the years, my surgeon was confident that I was making an informed decision. I appreciated when he said that I knew my body better than him and that HE’S NOT THE ONE LIVING WITH THIS AFTER! (What a concept, listening to your patients…)
Wednesday Sep 16, 2020 was the day I went under anesthesia to have my rectum and anus removed. The surgery lasted 5 hours and went very well. My surgeon has expressed how proud of my progress he is since the procedure. I have walked the halls multiple times a day, am eating, and managing my pain well.
Although I am nervous about the next phase of recovery at home without constant help from nurses and doctors, I am confident I have an amazing support team to get me through the next phase. Special shout out to Will for always stepping in as care giver when needed.
Overall I am very grateful for how this operation went. I am proud of my body and what it has accomplished. I am proud of my mental strength to go through this without any visitors. I have felt lonely at times, but instead of wallowing in it I picked out good movies to watch and a fun book to read. Plus video chatting makes it so much easier to feel connected.
Do you have a “barbie butt” or is your ostomy temporary? I am fascinated by the amount of different surgical options available to treat IBD and other forms of colorectal problems.
If you’ve gone through major surgery before, do you have any advice for healing at home?
Thank you for reading. Catch more of my day to day updates on Instagr
They say you can tell a lot about a girl from the contents of her purse, I have to agree! If you searched through my purse you’d discover I have an obsession with lipstick, often carrying more than four shades at a time. My family tells the story that by the age of 6 I would carry a purse filled only with ridiculous amounts of lip glosses and flavored chapstick. (I obviously had my priorities right as a kid.)
If you looked through my purse you would also discover that I am an ostomate, the term for someone with an ostomy. I carry a small bag with the essentials I would need for an emergency change. Having this bag handy has saved me from some embarrassing moments. Not having it has also cost me… Although accidental bag leaks aren’t common daily, they do happen often enough to warrant needing extra ostomy supplies with you.
I carry several types of ostomy bags with me for different reasons. Most importantly is that your ostomy will not behave the same every day and in every situation. You may need to view your stoma for a doctors appointment or when sick, therefore a transparent bag is more fitting. You may want a petite bag for under the great dress you bought!
Find out more about what is in my emergency ostomy bag in my new video.
Things I carry in my ostomy bag that were not included in that video include an ostomy cover, a small quantity of my medications, and medical grade scissors.
At the end of February life took a complete 180 degree turn. My husband suddenly lost his job and therefore we lost our health insurance. With the frequent hospitalizations I required we knew we couldn’t be without insurance. Plus, we needed income from somewhere to pay our bills.
Will looked for jobs in Alabama, but the market had little to offer. We also were wrestling with the fact that we didn’t have family left in Alabama to help us through difficult times. I was frequently facing hospital trips alone, while Will tried to carry the weight of everything else by himself. This all required us to take a hard look at our options and make a big decision.
My family encouraged us to move back to California to receive familial support, greater job opportunities, and a social safety net that offered health insurance.
Moving across the country seemed daunting, so we decided to visit for one week and decide from there. We put on masks and gloves (before it was required for COVID) and traveled to San Diego. It was frightening to travel that far while I was so fragile, but it was important to figure out what our options were.
Within a few days of arriving in San Diego I required a trip to the emergency room. My heart rate was uncontrolled and I was emptying my bag 12+ times a day. It was apparent my dehydration had gotten worse. Upon arrival to the ER, my blood pressure dropped to 75/40. I was admitted to the step-down ICU and monitored closely.
During that admission the attending physician decided to run basic blood work and stool study tests – something she assumed had been done many times before it Alabama, but was standard practice for these symptoms. To her shock (and mine!) the stool studies came back irregular. I was positive for C. Diff. For more information on this admission and C. Diff read “Wasting Away.” Within two weeks of receiving this diagnosis and being treated with the proper antibiotic, my output was solid again, I was able to eat regularly, and I felt strong.
Through this experience, it became apparent moving to California would be the right decision. So we flew back to Alabama, packed up our house, sold it, and drove across the country with two U-Hauls, three pets, and nothing but new possibilities.
The drive was long, but beautiful. And with my increased stamina and health I was able to do it without any medical issues! We ran into minor inconveniences due to COVID (like all the restaurants being closed.) But it was a terrific experience to see the country with Will.
Within two weeks of moving to California Will got employed at an HVAC company that truly values its employees. He feels supported, appreciated, and valued already. We are beyond thankful for his company and the opportunity they’ve given him.
With the improvement in my ostomy output, I was able to get the mediport removed from my chest wall. I cannot express how grateful I am to no longer require maintenance fluids to sustain hydration. Having the port was scary and dangerous. While the obvious benefits outweighed the possible side effects, I suffered multiple rounds of sepsis while my port was in place. It feels great to no longer have that risk looming over me. Soon I will be back in the work force, with the physical stamina and mental capacity to handle anything.
We will always be fond of our time in Alabama, and of the friends who became our family there. But we truly believe this was the best decision for our health, happiness, and future security.
It’s hard to believe, but it’s been one year since I underwent ileostomy surgery. I had a weeks notice that I was going to have the surgery and there was so much to adjust to! First, and most importantly, I had to bond with my stoma, and invite him to be part of me. Will quickly suggested we name him “Diglett” because he thought a stoma looked like the little, brown Pokemon. I thought the name was perfect: unique, fun, and quirky. Because of this I have been able to connect deeply with him. I talk to him, laugh about the noises he makes, and thank him for helping me. I wanted to celebrate the surgery, the past year, and the people who have helped me get through the transition.
The surgery was hard and long. I was under anesthesia for 6 hours. I woke up in pain and truthfully was freaked out by my bag. I was worried I wouldn’t be able to change it myself, that people would judge me, and many other anxieties. But I was also excited. The surgery meant I wouldn’t experience pain as often, debilitating diarrhea, or as many hospitalizations. Or at least I thought…
If you’ve followed the blog you know this year has been a challenge and a major adjustment. I still have high ostomy output, which causes dehydration. I have experienced pain frequently. And I have definitely had my fair share of hospitalizations. I require home health twice a week and 4L of IV fluids just to function.
Although these may seem like huge negatives that wouldn’t make the surgery worth it, I disagree. Diglett has allowed me to eat food again – almost anything I want! Prior to surgery I was limited to about 5 different foods and if I strayed at all I would have terrible symptoms. After the first month of my recovery I started adding different foods back into my diet. It has been so freeing.
The first month after surgery was exhausting. I was not allowed to lift anything more than 5 pounds (which, dang, everything weighs more than that!) Luckily I had the best support system. My dear mother flew in from CA to be with me the entire hospital stay and for a week when I got home. She cooked, cleaned, organized my house, and helped in every way possible. We would not have survived without her. Next, my mother and father in law came in town to take over when my mom had to leave. They helped with cooking and driving me to doctors appointments. My father came in town several weeks later to drive me to all the post OP appointments and generally help out. We were lucky to have had such a wonderful team.
My husband stayed at the hospital with me the first night, but had to keep working in order to keep our mortgage payments and other bills paid. He worked so hard on the clock and then came home and helped me every day. I am still in awe of the sacrifices he makes to help me heal.
After surgery I tried to go back to work part time. It was a struggle because I was dealing with bag leaks, pain, and dehydration. I had to miss a lot of days and was completely drained on the days I was there. Will and I made the decision that I was not ready to work yet. And am still not. With nearly 40 days inpatient in the hospital this year, I’ve been unable to reenter the workforce. So Will has graciously become the sole provider in the house. He puts in long, hard days every day and then still finds the time to help at home. I am so grateful for his sacrifice and his love.
I’ve also be lucky enough to have amazing friends stand by us this past year to help with meals, car rides, and emotional support. So I decided I wanted to thank all of them with a party… a way to celebrate the good things that have happened this year and the promise that things will continue to improve.
The party was medical themed. We played lots of games, like “Medical Bingo”, “Pin the Ostomy on the Stoma”, and “Operation.”
We also ate “Tylenol” (which were frosted Nutter Butters) and took “pills” (Skittles).
We also drank “blood” out of IV bags (koolaid).
We laughed, we danced, and we had an incredible night celebrating instead of focusing on the negative.
I want to thank everyone that has offered us support this year. We know that behind our success there is a village of people who has helped get us here. I am encouraged 2020 will be even better, with fewer hospitalizations!
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!
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.
As mentioned in the “my history” post, I am currently on my third week in the hospital. While I did have a short reprieve (I was discharged for less than 48 hours), laying in a hospital bed for nearly 16 days now has inspired me to continue blogging. I hope the information I share helps you understand the life of a #spoonie.
On my fourth day of admission (07/15) I had a flexible sigmoidoscopy completed to determine the etiology of my recent rectal pain and bleeding. “Fortunately” it was normal. I say that in quotation marks because while it’s a positive there’s no acute infection or disease process requiring immediate surgery, the negativeness of it means that more testing will be required. It also results in some doctors disregarding your symptoms entirely. While my core team of inpatient physicians have been thoughtful and dedicated to finding an answer, one of the consulted fellows spoke to me and my husband condescendingly and implied a normal exam meant I wasn’t actually in pain. He belittled me and insulted me, by claiming I had limited medical knowledge and therefore probably wasn’t as sick as I felt. This frustrated me on a multitude of levels.
First, I am a professional medical scribe with a vast working knowledge of medical terminology and treatment guidelines. Next, as a former nursing assistant I gained hands-on experience in healthcare and learned that a negative result does not mean you stop looking for an answer. Even greater than that, I hold a masters in medical anthropology meaning I have become an expert on some facets of chronic illness. Lastly, and I would say most importantly, as a patient for 15 years I have developed a strong grasp of GI terms and treatments. I know my body better than any other person, and can intelligently verbalize my symptoms. As a healthcare professional, I was bothered he dismissed my knowledge – but I was most offended as a well informed, chronically ill patient. I became sickened by the thought that patients without those backgrounds may be completely discouraged by a doctor like that and stop looking for a diagnosis. (I have so much more I could say on this subject, but I want to stay on topic. Look forward to a future post speaking directly on this issue soon!)
So, as I was saying, my negative flex sigmoidoscopy last week sent the doctors back to the drawing board. And quite frankly, it was a good thing they had to keep searching, or else they would likely not have discovered I have adrenal gland insufficiency (a potentially life-threatening problem.) I am happy to say I am now receiving proper treatment for the hypocortisolism!
As for the rectal pain/bleeding, high ostomy output, and abnormal vital signs that put me in the hospital originally… we are still no where closer to a diagnosis. So tonight I am NPO to prepare me for a series of tests tomorrow. First, a repeat flex sigmoidoscopy with the intention of obtaining different biopsies. Second, an ileoscopy, which is essentially the same thing just the camera is entered through my stoma. Lastly, an EGD where the camera evaluates the lining of the esophagus, stomach, and first part of the small intestine. With all three happening simultaneously, there won’t be a part of my GI tract unexamined.
The doctors hope to confirm a diagnosis of celiac disease with a biopsy, since my blood test was inconclusive. I am still waiting on the results of ACTH Stimulation Test to better understand the cause of my adrenal gland insufficiency. A number of tests are being done on my ostomy output, which the attending physician said are rare. But since my case doesn’t fit a common presentation, are warranted.
Just prior to midnight I finished drinking the bowel prep for the procedures and now am NPO [nothing by mouth] until the tests are complete. I will require conscious sedation and will likely remain sleepy most of the day.
Frustratingly, the biopsy results won’t result until early next week. So it will remain a waiting game. Until then, the doctors will continue to adjust my 20 different medications to achieve homeostasis and treat my pain. I should also have a consultation with my former surgeon about surgical interventions (including anastomosis or proctectomy.)
In the mean time, I desperately need an entertaining show to stream while I’m cooped up! Drop a comment with a show or movie that you recommend.