Surgery

Surgery went well and given what my surgeon told my mom, it was a success. He did find a staple from my last surgery and that’s likely what caused the fistula (as opposed to an abscess or infection). He did take a sample of something and send it off to pathology, but I don’t know to what extent that is standard operating procedure.

It’s 9:30 now and I’ll be heading to sleep in the next hour. The day began at 9 with one of those special showers with a special soap. Truthfully I didn’t sleep much since I made sure to get up every few hours to check my ostomy bag. We got to the hospital about 10:30 for a 12:30 surgery and by about 10:45 I was in preop getting prepped. Unfortunately with COVID, my mom couldn’t stay in preop with me. Preop in general didn’t take very long, but I was there awhile. The doctor using the OR ahead of me was running behind, so surgery got pushed back about an hour. While I was in preop, I got good drugs for the dehydration headache I had. In the end, they gave me some better drugs, to the point where I was drowsy and didn’t even notice when the nurse started my redials IV. Thankfully, they also used my port. Before they took me back to surgery, I did get to see my mom again.

Surgery went well enough that I do not have any new scars. They also did a flex sig to look at what’s left of my rectum as long I was already under. By 3:40 I was in recovery and by 4 I was well on my way to awake. My fairly low blood pressure kept me from getting pain meds for awhile (pain meds can lower blood pressure). Eventually it stabilized, even if it didn’t go up much. But my nurse started with low doses of dilaudid and had my blood pressure stayed stable, he gave me a bigger dose. It took a couple rounds of .2mg doses before I was comfortable. Unfortunately for me, it took awhile for me to get a room cleared and assigned on the appropriate floor and then to be transported up there. As a result, it was after 8pm before I finally got to see my mom again.

Tomorrow will include a visit by an ostomy nurse to check things over. Hopefully we’ll also be able to change my ostomy bag. The hospital used a two piece and I just hate two piece bags. They are so much harder with so much more tough plastic. I just don’t find the comfortable to wear. I was smart enough though to bring enough of my own supplies for a couple of bag changes.

I doubt I’ll be going home tomorrow, so the only question then is does the weekend push my discharge date to Monday or will I be discharged over the weekend.

One last piece of fun. In our family when you have a lengthy hospital stay or surgery, you get a stuffed animal. Here’s my new one.

Thursday’s Surgery

Edit: I wrote the below section last night. I had my pre admissions testing this morning and discovered the clinic lost my COVID test from Monday. As such, I had to have another one today. Yuck.

I have more details now on Thursday’s surgery. If all goes well, there will be no new incision. They will instead free my small intestine from where it exits my abdomen, resect the intestine down to where the fistula is, and then using the same stoma location, attach the new section of intestine to the abdomen. All that means I’ll have the same stoma location, but a new piece of intestine will be the stoma. The location part is great, as it’s a location that works fairly well. The new intestine part of the surgery means I’m in for an annoying 6-8 weeks as things heal. I’ll be back to measuring my stoma every time I have to change my bag. I’ll be more prone to leaks. Hopefully the same bag system I use now will be appropriate for the new stoma. It probably will, but there’s no guarantee.

Surgery itself shouldn’t be too long. The surgical resident I talked to today said I’ll spend more time in pre and post op than I will actually in surgery. Unsurprisingly, I do have to do a bowel prep. This time it’s a combination of magnesium citrate, dulcolax, antibiotics, and potassium. For a good chunk of tomorrow, I’m taking something every hour or two. At least my pre op testing appointment is early enough in the morning that I’ll be well home before I have to start prep. I’m on a liquid diet tomorrow to make the prep easier. It won’t be a particularly pleasant day, but I expected that. Anytime there is surgery done on the bowels, or where there’s a risk of injuring the bowels, doctors prescribe a bowel prep to completely empty the bowels of stool.

I should only be in the hospital a couple days. We’ll just have to wait and see how long it takes for my intestine to wake up and work as it should again. I’m hopeful that if surgery goes as it should that I won’t have a ton of pain. The biggest thing that could derail surgery is how much scar tissue I have. I’ve had two previous open abdominal surgeries so scar tissue is a potential problem. Scar tissue tends to make things stick together and that sticking could make it difficult to pull my intestine out of my current stoma location. If scar tissue were to make things tricky, then if would likely become yet another open surgery and a longer hospital stay.

This will be my third intestinal surgery in under two years. By comparison, this should be an easy surgery. I’m really not worried about this one. Even if it becomes an open surgery, I’ve been there before. I have the scars to prove it.

Two Years

Today is my “cancerversary.” Two years ago today, it was confirmed that I had stage iv colon cancer. By the point the final biopsy results came in, everyone was all but sure it was stage iv colon cancer. I honestly don’t think I’ll ever forget that week I spent in the hospital. It began on a Friday morning, when I woke up about 6am to go to the bathroom, only to find blood in my stool. My parents were already up and my dad working (he worked from home). My mom had had surgery #7 on her ankle only two days before and was still off work. My dad had a phone call that morning he couldn’t skip, so I drove my mom and I to the nearby ER – an ER unconnected to the main hospital. After all, you don’t go to the ER alone.

I drove my dad’s Jeep Grand Cherokee because its backseat could accommodate my mom’s wheelchair and we arrived about 7am. It was quiet, so it didn’t take long to be taken by to an ER room. My mom asked what they would do and I’ll never forget the nurse’s response. He told me they would likely do some blood work to make sure I wasn’t going to bleed out then send me home to follow up with a gastrointestinal doctor. What neither I, nor the nurse, knew is that the results of my pelvic ultrasound the day before strongly recommended a CT scan.

Even when an ER is quiet, running blood work and waiting for scan results takes time. I remember feeling pretty good overall and texting with a friend while in my little cubicle. About 8am, I got a phone call from my primary care doctor wanting to schedule that CT scan. I told her I was already in the ER and they were going to do it and she wished me luck. It took quite some time for the CT scan results to come in. We later learned that the doctor was on the phone with the GI department at the main hospital downtown. The doctor had called them because the CT scan revealed a spot on my liver the size of a walnut that hadn’t been on a CT scan done two months earlier. The group of doctors decided to admit me to the hospital to run tests and find out what was going on, rather than leave me to wait for my already scheduled GI appointment two weeks later. That was my first time in an ambulance – that I remember anyway. My mom then called my dad and together they figured out how to get my mom home from the ER and together get to the hospital downtown. That’s a funny story for another day.

I spent Saturday night trying desperately to get cleaned out well enough for a colonoscopy. It was a nightmare and that’s putting it mildly. The colonoscopy finally happened Sunday evening and the doctor couldn’t get very far. I was pretty out of it following the colonoscopy and didn’t ask much, but when the doctor told my parents they were able to ask questions. Although it was a presentation the doctor hadn’t seen before, he was pretty sure it was cancer. As my dad tells it, the doctor was visibly upset. During the colonoscopy, the doctor took several biopsies that would hopefully give us the answer.

On Monday, I had an MRI to get a better look at the liver spot. Prior to that MRI, I had no idea I was claustrophobic. Now I know, and for every MRI I get a Valium ahead of time. On Tuesday the biopsies came back as suspicious but inconclusive. As a result, they biopsied the liver spot that same day. Wednesday was a day of nervous waiting. Thursday afternoon the liver biopsy came back positive for colon cancer and by extension, stage IV. That was June 28th, 2018. The following day I had my port placed before being discharged.

I’ve thought a lot about that week in the two years since. I wrote at the time that I was grateful that none of my doctors tiptoed around the elephant in the room. Even before the final confirmation on the 28th, I was seeing an oncologist and a surgeon. The liver biopsy was simply a confirmation of what everyone knew. At the time, and now still, I was grateful that my doctors were frank about what was going on. It really set the tone for my future discussions with those doctors, especially as we all discovered that I did nothing the easy way. I really came to like my oncologist when I moved from Wisconsin to Florida and would recommend him to anyone.

I find I’m much more grateful for the milestones now than I was before my cancer diagnosis. This last Christmas meant so much more to me. It didn’t pass me by like so many others had before. I spent the Christmas before feeling like garbage and ultimately opened my Christmas presents while in the hospital. Next week will be my 3rd birthday since diagnosis and I will turn 35. Once upon a time, that round birthday might have bothered me, especially as I’m still single with nothing on the horizon. But now? Now I’m grateful to be here. My life isn’t perfect and cancer plus Lynch Syndrome have certainly left their problems behind. But two years after a stage iv cancer diagnosis, I’m still here and largely doing what I want.

Surgery, Again

I recently moved to Florida from Wisconsin and had to find a whole new set of doctors. In Wisconsin, I had a surgeon I saw for issues with my ileostomy. Interestingly enough, it is not gastrointestinal that deals with ostomies, even once they’re created and working well. No, for any GI issues once you have a stoma, it’s back to a colorectal surgeon. In my case, I hadn’t expected to need a colorectal surgeon in Florida. My stoma was working well. I expected to need an ostomy nurse to help with pouching issues from time, but that wasn’t a big deal. Unfortunately, I needed to find one.

Last fall, not long after I had surgery and received my new stoma, I developed what I now know was a fistula. It was pretty small and just the occasional bubble came out. My surgeon’s PA at the time didn’t think it was a big deal and at the time, my stoma wasn’t being active and so she couldn’t see it in action. Fast forward to the last few months and that hole has been more and more active. I have more and more stool coming out through that hole. In general terms, a fistula is an abnormal hole between two body parts. Mine is from my small intestine through my skin and comes out where my stoma meets my skin. I saw an awesome ostomy nurse last week, who has been an ostomy nurse for more than 30 years and she confirmed that what I have is a fistula. Unlike the last time I saw someone about it, the fistula was very active and she captured several good photographs. I then saw a local colorectal surgeon today and the pictures were good enough that I didn’t even have to take my bag off for him to get a look at my stoma.

The outcome of today’s appointment is that I need surgery to fix the fistula.We’re aiming for laparoscopic and outpatient surgery, but that may not be possible. I’m hoping it is, but we just don’t know. The surgery itself is considered a stoma revision. It will undoubtedly include pre-surgery bowel prep. Bowel prep really isn’t fun, but hopefully it’s just magnesium citrate. I handle that better than something like colonoscopy prep (they both have the same purpose – to completely clean out your bowels). I will approach the surgery as if it will be inpatient and bring a bag of hospital supplies – things like a robe, dvds, personal stuff. I’ve got the hospital bag routine down pat and I’ll just prepare like I’m going to be admitted.

I am tired of all my complications. Some days I feel like my life the last two years has just been one complication after another. Aside from this current complication, my ovarian fragment will also have to be addressed in the coming years. I’m on medication for it now, but the medication isn’t a long term solution. So in addition to my new surgery, I have what will be a fourth surgery on the not so distant horizon. I’ve already managed 8+ months without a hospital admission (and that may go up depending on when I actually have surgery), but now I’d like to go a year.

Life’s Complications

Life is just full of complications. I’ve certainly had my own bunch of complications.Until the last few years, they were relegated to things like moving, finding new friends, a bout of depression, and ADD. Then a few years ago I was diagnosed with bipolar disorder. Thanks to some amazing people in my life, I found my equilibrium again. Two years later, I was diagnosed with stage iv colon cancer and discovered a whole new realm of complications and trials. The two year anniversary of my first hospital stay is tomorrow. It was during that week long stay that I was diagnosed. Including that first admission, I’ve had ten hospital admissions in the last two years. I spent 12 days in rehab after my first surgery because my surgeon stretched the femoral nerve going to my right leg. I’ve had a chest tube and two liver drains. I’ve had two major surgeries and a third to come in a few years. That first surgery unexpectedly left me with a colostomy. My second surgery purposefully left me with an ileostomy. I have a risky surgery yet to come to remove a piece of ovary accidentally left behind after my second surgery. And now I have a new complication.

I have what’s called a stomal fistula. In general terms, a fistula is an abnormal connection between two body parts or between an organ and the skin. As a general rule, fistulas aren’t a good thing and aren’t fun to deal with. Some are more serious than others. Mine is from my small intestine out to the skin where my stoma meets the skin. So instead of one hole with stool coming out, I have two. It makes changing my bag a little more challenging. It makes keeping my skin there healthy a challenge. I saw an ostomy nurse last week and she confirmed for me that it is a fistula and she gave me some tips on dealing with bag changes. She also recommended seeing a colorectal surgeon about it. It remains to be seen how serious it is. I’ll be making some phone calls tomorrow to see if I can see a colorectal surgeon anytime soon. I have to see a colorectal surgeon because they are the ones who manage ostomies. So hopefully I will soon find out just how big a complication I have on my hands.

It helps me to know this life was never meant to be easy. It was meant to be a time of testing and of trial. The Plan of Salvation helps us understand the role of trials in our lives. We agreed to come to earth, be given a physical body, and be tested to see if we would still follow our Heavenly Father with our memories of before forgotten. If we followed Heavenly Father and do as He asked, we would be able to live with Him again and even become like Him. We would be able to live with our family in Heaven forever. Being on earth means we all agreed to that plan. We agreed to be tested, believing that whatever happened to us on earth would be worth the reward of living with our Heavenly Father and our Savior Jesus Christ again.

The fall of Adam and Eve means we’re living in a fallen state and subject to the problems inherent in mortality. Without the fall of Adam and Even though, we couldn’t have children and create families. The fall of Adam and Eve means we can feel true joy, but it also means we can feel sorrow. Without sorrow, we would never know true joy. The combination of the Fall and mortality means we are subject to sorrow and sickness and infirmities. Another part of the Plan of Salvation included giving each of us the ability to make our own choices. Sometimes our choices hurt others, but God will not interfere in the choices of anyone.

And so life is full of complications. But each of us has our own trials and struggles to deal with. Some of those struggles are a direct result of our own decision making. Some are a result of another’s choices. And some are just a part of living in a fallen world. They aren’t anyone’s fault; they just happen. The Plan of Salvation is the answer to why bad things happen to good people. It is the answer as to why I was diagnosed with stage IV colon cancer at age 32.

When A Loved One Has Cancer

At some point in your life, you’re probably going to have a friend or family member diagnosed with cancer (if not yourself). How do you deal with it? Here are some examples from my own life, along with some things you probably shouldn’t do.

The week I was diagnosed I was in the hospital from Friday morning to the following Friday morning. My parents spent the days with me (and a night at one point), but we had two golden retrievers at the time (and as of this writing, still do). There were things to take care of at home. My friends from my ward would come visit me in the evening, allowing my parents to feel comfortable going home knowing I wouldn’t be alone. One week between diagnosis and surgery, Family Home Evening was in my backyard. Following surgery, I ended up in a rehab facility. One Sunday while I was there, members of my ward came to sing to me. There must have been a dozen or more people there. It meant the world to me. When chemotherapy and the cold of a Wisconsin winter kept me home from church and weekly activities, my ward encouraged people to come visit – and they did. Throughout treatment, I had visitors again and again. I had chemotherapy every two weeks and for most of my cycles, two of my close friends came to visit.

So what can you do when someone you care about is diagnosed with cancer? Here are some ideas.

  • Continue being their friend. Most of us diagnosed with cancer can tell you stories of friends who dropped away when they were diagnosed with cancer. I had friends, good friends, who completely dropped out of my life. On the other hand, I got closer to people I hadn’t been before.
  • Meet them where they are. Treatment for cancer isn’t easy. It’s physically and emotionally tiring. Maybe they don’t have the energy to go out to the movies anymore. Instead, try watching a movie in one of your homes. But keep inviting us to do stuff. Let us decide our limits.
  • Instead of asking if there is anything you can do, pick something you can help with. Maybe that’s picking up groceries or watching their kids or finding a way to help with housekeeping chores. The number of things that need doing can be overwhelming, especially when you consider the overwhelming amount of medical information that accompanies a cancer diagnosis. For me, the best thing people could do for me was to come visit. Visitors were my window to the outside world.
  • If you can’t think of what to say, tell them you love them. Tell them that you don’t know what to say.
  • Make sure they know you are there and you’re not going anywhere. Fighting cancer isn’t something you do alone.

Here are some things not to do.

  • Don’t drop them as a friend. Even with a major trial on the way, they are still who you knew. And cancer isn’t contagious.
  • Don’t tell them everything is going to be fine. While my faith tells me that all will be made right in the eternity to come, that doesn’t mean everything in this life is going to be fine. And even if things turn out okay, that doesn’t address the difficult times in the middle.
  • Don’t start telling stories about how chemotherapy is so bad and won’t work or how so and so killed their cancer just by juicing. We’ve done our research and we’ve chosen to trust modern medicine instead of quackery.
  • Please, for goodness sake, don’t ever tell someone they got the “good kind” of cancer. There is no good cancer.

To Tell or Not to Tell

After a cancer diagnosis, it’s not always easy to decide first who to tell and then how much to tell them. Some want to keep it private and only tell a few select people. Others may decide to keep the information given to a bare minimum. In my case, I’d had a fairly active social life before I got sick and my absence and subsequent hospital stay were noticeable. In fact, I was texting a friend from my ER bed to pass the time. Two years earlier I had been diagnosed with bipolar disorder and I learned that I did better when I had my “tribe” of friends and family. So when I was diagnosed with cancer, I was open from the beginning about what was happening to me. When I was diagnosed, I spent a week in the hospital undergoing tests. Even if I had wanted to keep my diagnosis a secret, it would have been difficult. A week long stint in the hospital is hard to hide or explain away.

I also knew I needed friends and family to get through what was to come. Breast cancer runs in the family, so the effects of chemotherapy in general were not an unknown. Then as I got more information from my doctors in the hospital, I really understood I was in for a fight. Those around me couldn’t do it for me, but they could be there for me. They could help me feel less alone. They could pick me up when I was down. But they could only do that if they knew.

The biggest reason, at least in the beginning, that I was so open about my diagnosis was that talking about it made it real to me. A cancer diagnosis, especially at such a late stage and at such a young age, can be very surreal. I was a week from my 33rd birthday and suddenly I had both a surgeon and an oncologist talking about surgery and chemotherapy. I wasn’t yet 33 and I was about to fight for my life. That’s not supposed to happen at 32. Colon cancer isn’t supposed to happen to a 32 year old. But it was, and I couldn’t go back in time to keep it from happening. So I had to move forward and move beyond the surreal nature of the situation. Talking about it helped me make that transition.

So from the very beginning, I was open with everyone about my diagnosis and treatment. I started a CaringBridge website (here). CaringBridge also allowed me to keep friends and family updated all at once. That even included friends of my parents as well. While there were certainly friends I kept up to date personally, having a CaringBridge website made giving medical updates easier. There have also been nights in the months since that I’ll go back and read it and read the comments people have made. It reminds me both of how far I’ve come and how many people are rooting for me.

I talk about it now because I want people to know it can happen to anyone. It happened to me because I have a genetic mutation in the MLH1 gene, which is one of the genes tied to Lynch Syndrome. But it’s happening to more and more young people as time moves on. I’m sure the statistics have changed in the two years since my oncologist first mentioned them, but at the time he told me that 1 in 10 new cases of colon cancer involved a patient under the age of 50. Right now, colonoscopies are recommended for those over 50, though there are those moving for that age to be lowered. Even in the over 50 population, not enough people get a colonoscopy. I know the prep for a colonoscopy isn’t fun. I’ve had one. Yes, there are easier tests that look for colon cancer, but if it spots anything, you’ll need a colonoscopy anyway. And only a colonoscopy can remove polyps before they ever become cancerous.

I talk about it now because I want people to talk about it. Talking about poop isn’t a cool thing. It’s thought of as private, but it can save your life. Colon cancer and Lynch Syndrome left me with a permanent ileostomy bag. I poop into a bag and will for the rest of my life. But you know what? The ability to poop into a bag saved my life. It comes with its own challenges. But I’ve learned that as human beings, we can get used to anything if we approach it with an open mind. So I’m going to keep talking about it until everyone listens.

Living With An Ileostomy, Part 2

Going back to my own story, the first six weeks with my colostomy were a nightmare. I ended up in rehab thanks to complications from surgery. While in rehab, I ended up back in the hospital with a pleural effusion. Two weeks after leaving the hospital, I landed back in the hospital to have a liver abscess drained. Through that entire time, it didn’t matter who changed my ostomy bag, I had leaks and bag explosions often. My mom was the one who learned to change the bag, and whether it was her who changed the bag or one of the nurses, I had leaks constantly. That was until my hospital stay to drain my liver abscess. The hospital’s ostomy nurse suggested a different bag to try, along with an ostomy bag. After that, leaks were a thing of the past and I was getting several days out of each bag change. After that, life got a lot better. I got through chemo with a colostomy bag. Eventually, I learned to change the bag with help, and then finally on my own.

Then I had a check in with my surgeon and suddenly I had a decision to make. By that point, my diagnosis of Lynch Syndrome had been confirmed. I knew I was at high risk of a second, unrelated colon cancer within the next ten years. I would need a colonoscopy every year for the rest of my life. During the discussion with my surgeon, I learned I was not a candidate for a “j-pouch.” A j-pouch is an internal pouch made surgically that connects the end of the small intestine to the rectum so that an ostomy bag isn’t needed. I wasn’t an candidate because of the size and placement of my original tumor. If I opted to remove my colon, I would have a permanent ileostomy. He also warned me that likely wouldn’t be happy with a straight reconnection of my colon. My tumor had been quite large (softball size) and close enough to my rectum that I would likely spend far more time in the bathroom than I wanted. I had several months to make my decision. With several months to think and pray about it, I ultimately concluded that it was in my best interest to remove the rest of my colon (along with other body parts, but that’s a topic for another post).

The first six to eight weeks after my ileostomy surgery were somewhat difficult. The difference this time was that I expected it. I was also used to changing the bag and leaks didn’t phase me. As it turns out, I had a leak just last night. Leaks now are annoying, but not the end of the world. I had expected to need a different type of bag than my colostomy bag, but as it turned out, the best bag system for my ileostomy was the same one I had used for my colostomy. When I had a colostomy, I only had to change my bag once a week. Now that I have an ileostomy, I have to change it every four days. This is largely a result of the consistency of the stool. Since it is more liquid, it is better able to get under the seal of the bag. Stool is very acidic on skin and keeping the skin around the stoma healthy is paramount. Broken skin is very painful and can keep the bag from sticking. Below I’ve included the things I use to change my bag.

In general terms, I first cut the hole in the new bag using a template from earlier changes. After putting on gloves, I use the adhesive remover wipes to remove the pouching system itself and any adhesive that is left behind. Without the remover wipes (or some other type of adhesive remover), you can easily damage the skin. Also, any adhesive left behind can keep you from getting a good seal and can lead to leaks. I make sure I use either a wet wash cloth or a wet paper towel to clean around my stoma. I don’t want any adhesive or adhesive remover left behind. I then change my gloves. I use two pairs of gloves so I don’t get stool on my skin under the new bag. I then use the stoma powder just around my stoma and then use the barrier wipes to get that powder wet. I do it again in a process called “crusting.” It both allows the skin underneath to heal and protect it from further breakdown. Next, I take out the Eakin ring and mold it to the shape of my stoma. It’s very sticky and easily moldable. Finally, I put on the new bag. On those days when I want extra confidence in my bag, I will use the extender stips around the bag. I don’t find them absolutely necessary, but they do give me the confidence that I have the new bag secure. I change my bag while laying on what amounts to a diaper change pad. I learned to change it lying down due to problems with my leg after my first surgery. I only have to wait 12-24 hours before getting it wet to allow the adhesive to fully adhere. I do it laying on the pad because the pad is easily washable if my ileostomy spurts while I’m changing it. I learned early on that eating a couple marshmallows about 30 minutes before the change can stop up my system long enough to change the bag. An ostomy has a mind of its own, but marshmallows for me help nudge it to my whims.These days, nearly 2 years after my colostomy, it only takes about 15 minutes to change it, and then I don’t have to worry about it for another four days. It’s now simply part of my routine.

Living With An Ileostomy, part 1

I wasn’t originally supposed to have an ostomy bag. When I had my first surgery, the initial plan had been to cut out the cancerous portion of my colon and reattach everything. However, I had a devil of a time with the bowel prep meant to clean out my colon prior to surgery. With that, my chances of waking up from surgery with a colostomy increased significantly. What no one knew until surgery began was that my tumor had grown in the three weeks since diagnosis and reattachment was no longer a wise idea. By that point, my tumor was blocking my colon in two different places and my surgeon was concerned about the possibility of what he called drop metastases. Drop metastases are little bits of cancer that break off from the main tumor and are too small to see. My surgeon wanted to wait until after chemotherapy to be sure any potential drop metastases had been killed before reattaching my colon.

A colostomy is where the surgeon takes part of the colon, or large intestine, and surgically brings it out through a hole in the abdomen. The portion of intestine brought to the surface is called a stoma. With a colostomy, stool is thick, or sometimes even formed. The colon itself is about 5 feet long, and the more colon the surgeon is able to leave intact, the thicker and more formed the stool will be. This is because one of the jobs of the colon is to remove liquid from the waste our intestines produce. An ileostomy is where the end of the small intestine, or the ileum, is surgically brought out through a hole in the abdomen. Stool that exits the body via an ileostomy is much more liquid than in a colostomy because there’s no colon to remove the excess water and return it back into the body. Dehydration is a much bigger problem with an ileostomy than a colostomy because instead of returning liquid to the body, it exits via the ileostomy.

The first weeks with an ostomy of any kind can be difficult. The stoma is constantly changing shape as it heals. The topography around the stoma is changing too as swelling goes down. There is also a lot of trial and error in finding the right pouching system and other products. An ostomy nurse is an excellent resource in finding the right products to try. Colostomy/ileostomy bags come as either one piece or two piece and as closed or drainable. You can do nearly everything with a colostomy or ileostomy that you did before. You can hike, shower, go swimming, and so many other things. There are some dietary changes most people make, as the small intestine isn’t quite up to the task of digesting some foods. The most common problem foods are seeds, nuts, and raw fruits and vegetables. Without those changes, intestinal blockages are much more likely.

Part 2 to come tomorrow

Survivorship

It is only in the last 15 years or so that the medical community has paid attention to “survivorship.” As cancer treatments get better, more and more people are living beyond cancer. As a result, more and more people are dealing with the long term physical, emotional, and mental effects of having had cancer. Cancer, especially late stage cancer, fundamentally changes who you are; you can’t go back to who you were before your diagnosis. Cancer doesn’t stop impacting your life just because you’ve finished treatment or your doctor says you have no evidence of disease. For me, cancer changed how I looked at the world. It especially changed how I saw God and His relationship to me. It changed my relationship with the Savior as well. I’m sorry to say that I’m not sure I’d have made those changes without my cancer diagnosis, but here we are. Cancer has also changed my relationships with the members of my family.

Fundamentally, survivorship is about what comes next after cancer. It’s about what long term side effects survivors can expect. The medical community is only starting to discover that many of the treatments used to fight cancer have significant long term side effects. Many of those side effects were unknown because cancer survivors weren’t living long enough for those side effects to present. Doctors are only recently educating survivors on some of those side effects, but it’s important that primary care doctors are educated too. Once a patient has been cancer free for x number of years, their care is transferred back to their primary care doctor, who may or may not be aware that cancer treatments can have long term side effects. By long term side effects, I am talking ten years, or even more, from the end of treatment. Despite the many advances in cancer treatment, much of it is still extremely destructive.

Cancer treatment also leaves its own mental and emotional scars. One such scar is something known as “chemo brain.” Chemo brain is categorized by cognitive difficulties both during after chemotherapy. I was lucky enough not to experience chemo brain. For some people, chemo brain can be debilitating.

Even after cancer treatment is over and one is considered cancer free, there can still be that feeling of “doom.” It’s difficult not to think that every new ache or pain is cancer returning. Suddenly, it’s difficult to differentiate between a normal sign of aging or benign problem and an early (or late) symptom of cancer. It can make you feel paranoid and like you’re overreacting. It’s a difficult balance to find, between being vigilant and overreacting. Myself, I’ve been out of active cancer treatment since March 1, 2019 and I still struggle at times to find that balance.

The last thing I want to mention is making the transition from active treatment to surveillance. Emotionally, it can be a difficult transition to make. It certainly has been for me. In illustration, take my course of treatment. From my official diagnosis on June 28, 2018 until I finished chemotherapy on February 24, 2019, I saw one of my doctors about every two weeks. During my recovery from surgery, I saw someone in my surgeon’s office twice. The first was for staple removal and the second was a check in. While I was actively on chemo, I saw my oncologist every two weeks. I would arrive at the clinic for blood work, after which I would see my doctor and he would confirm whether my blood counts were high enough for chemotherapy that day. It was like that like clock work. Then his office wanted to know if I got sick because that could delay chemo, or worse, land me in the hospital. From June 2018 – November 2019, I had ten separate hospitalizations. So during treatment, you’re under near constant supervision. Then one day, your doctor declares you cancer free and you move to surveillance mode. Suddenly you go from seeing your doctor every two weeks to seeing your doctor every 12 weeks. You had your oncologist and oncology nurses to help you navigate your new medical world, but there’s no one there to help you navigate your new post cancer world. It can leave you feeling adrift. It can be a scary thing, and it was for me. It’s something I still struggle with from time to time. But like so many other things in the cancer world, you learn to live with it. You remember how to put one foot in front of the other and just keep going. Cancer treatment isn’t for the faint of heart. Neither is surviving cancer.