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Keith’s Stage 4 Colorectal Cancer Story

Keith’s Stage 4 Colorectal Cancer Story

Shortly after gallbladder removal, Keith developed what felt like gallbladder pain. His wife encouraged him to go to the ER where he received a CT scan that revealed a mass in his colon. After removing the mass and some lymph nodes, a biopsy showed Keith had stage 4 colorectal cancer

As a husband and a father of two boys, Keith discusses the impact his diagnosis has had on his outlook and life and how he stopped working to prioritize time spent with his sons. 

Now on his third line of treatment, Keith discusses cancer support groups, chemotherapy,  treatment side effects, mental health, how he is considering a double lung transplant, the importance of being a patient advocate, and his advice for others on their own cancer journeys.

Keith shares about his colorectal cancer symptoms, treatment and diagnosis
  • Name: Keith H.
  • Diagnosis (DX):
    • Colorectal Cancer
  • Staging:
    • Stage 4
  • Symptoms: 
    • Abdominal pain
  • Age at DX: 41
  • Treatment:
    • Chemo
      • FOLFOX
      • Avastin
      • XELIRI
      • Vectibix 
    • Surgery
      • Tumor removal
      • Liver resection
Keith's colorectal cancer timeline

Don’t give up hope, number one. Absolutely educate yourself on your disease and be an advocate for yourself along with your care team.

Keith H.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Colorectal Cancer Symptoms

Tell us about yourself

I’m Keith. I’m 43 years old. My hobby is that I love to be outside kayaking, hiking, and walking. I’m a Corvette enthusiast who’s working on my car and hanging out with my dogs. Those are usually the 2 that hang out with me while my kids are at school and one might poke his head in. He’s a very large Great Dane. My wife, kids, and I like to travel. We like to do a lot of international travel and domestic as well.

Keith experienced abdominal pain
Keith is on his third line of cancer treatment
Keith discusses his experience with colorectal cancer
When did your symptoms first occur? 

Early in the year 2021, I had my gallbladder removed. Then in May, I started to have abdominal pain again, very similar to when I had gallbladder issues. 

I was coaching Little League baseball the night of May 4th, 2021. As the night progressed, the abdominal pain continued to get a little worse, so much so that my wife forced me to the hospital in the middle of the night. 

Keith began experiencing abdominal pain
Getting emergency surgery 

I went to the emergency room, and they did a quick CT scan and found a mass in my colon. They did a couple of other tests like blood work and stuff, and they said that they were going to be prepping me for emergency surgery because they wanted to get that mass out. 

As they did more digging and research, they also found several lymph nodes that were impacted as well as 4 lesions on my liver at that time. So that’s a whirlwind of how we got started. 

I went through that emergency surgery that night and was in the hospital for about 11 days. A couple of days after my surgery, I became septic so I had a lot of issues health-wise. We weren’t sure how that was going to play out, but I was actually able to make it out of the hospital the day before my wedding anniversary, which was nice. I started chemo shortly thereafter.

Keith received emergency surgery which revealed a mass

I went to the emergency room, and they did a quick CT scan and found a mass in my colon.

Did you have other symptoms besides abdominal pain?

No, nothing. Even what would have been 6 months before that, I did a triathlon. No issues. I’m not necessarily saying I’m the most healthy person in the world, but I definitely didn’t consider myself unhealthy by any stretch of the imagination.

Besides abdominal pain, Keith didn't have other symptoms
Keith didn't consider himself unhealthy before his diagnosis
Keith had recently run a triathlon pre-diagnosis
What did doctors say about your minimal symptoms?

I was told that 41 was very young to be diagnosed with this. They mentioned that they’re seeing more and more of this in younger patients being diagnosed very late stage. Some of the traditional symptoms are rectal bleeding and abdominal discomfort. But for me, I really didn’t have any of that, other than the gallbladder pain that came back. 

I thought it was strange because you shouldn’t have pain in an organ that was removed. I thought initially it was maybe some type of surgery complication that turned out to not be a surgery complication at all. It was a whole other issue.

I was told that 41 was very young to be diagnosed with this. They mentioned that they’re seeing more and more of this in younger patients being diagnosed very late stage.

Doctors said Keith was young to be diagnosed with late stage colorectal cancer

Diagnosis & Treatment

What was your official diagnosis?

I was diagnosed with stage 4 colorectal cancer.

How did you react to your cancer diagnosis?

It was tough. I went to the hospital during COVID times, so nobody else could come with me. I went by myself. I was in the emergency room by myself and had to make a call to my wife that they found a mass. Even at that point, I still really didn’t comprehend or grasp what the situation was. I was thinking, okay, they found something, they got to get it out and then I can go home and move on with life. That wasn’t the case. 

It was very shocking initially and I was almost numb. It wasn’t until after the surgery when I started to recover in the hospital that my situation and the diagnosis became real. 

The more doctors that I spoke to while I was in the hospital didn’t necessarily paint a real great picture of the survivability, how long I would be around, and all those things. Luckily, I have a great oncologist I met several weeks after all that, which helped put things into perspective a little bit, and while obviously still serious, there’s at least hope.

Keith was diagnosed when COVID precautions were in place
Keith was initially shocked by his diagnosis and then numb
Doctors didn't paint a great picture of the survivability of Keith's cancer

I still really didn’t comprehend or grasp what the situation was. I was thinking, okay, they found something, they got to get it out and then I can go home and move on with life. That wasn’t the case.

What cancer treatment options were you given?

After surgery recovery, I met with my oncologist about 4 weeks after my initial diagnosis and surgery. We walked through traditional first-line chemotherapy FOLFOX, which is a pretty aggressive first-line treatment and pretty standard care for most of these patients. We did add Avastin into the mix as well to hit it harder, which is probably the best way to describe it. 

Keith's first chemotherapy was FOLFOX

We talked through side effects and what to expect over these 6 months. The intent was curative intent and to get me to a position where I could be surgical in regards to the liver situation. 

Undergoing liver surgery and chemo

We went through 4 months of FOLFOX before I was able to have my liver surgery. They did a liver resection in October of 2021 and took out about 30% of my liver. The good news is most of the lesions that were in the liver were necrotic. Chemotherapy, knock on wood, had done its job, and then I recovered from that surgery. 

They did ask me to complete 4 additional rounds of clean-up chemo just to make sure there wasn’t anything lingering out there that didn’t show up on scans. I left the hospital in October extremely excited. You get this diagnosis 4 months before and it’s a pretty dark picture, and to be told that we got it all? In my mind, I beat it and we’re moving on with life. We can go back to normal. 

About 2 months after that, a follow-up CT scan showed numerous spots in my lungs. It had hid for a little while and then metastasized further into the lungs which we’re still working on treating today.

Keith had a liver resection

About 2 months after that, a follow-up CT scan showed numerous spots in my lungs. It had hid for a little while and then metastasized further into the lungs which we’re still working on treating today.

Describe your side effects from chemotherapy
Keith had fatigue on chemo
Keith had nausea on chemo
Keith had a blood cot on chemo

Of all the chemo that I’ve been on, that first-line treatment was pretty rough. FOLFOX is not for the faint of heart. I had a lot of fatigue and nausea. At one point, I did have a blood clot that they deemed Avastin probably caused. That was a little scary. I had a blood clot that started in my leg and moved into my lungs. We were able to work through that and get that resolved.

Mental Health

The physical and mental toll of cancer
Keith sought professional help to assist with his anxiety

I did seek out some professional help from a therapist’s standpoint, and that helped me tremendously.

I looked at it as 2 things. There’s the physical piece – there’s a lot of medications and vitamin supplements and things like that I was taking to help. But I think the first year of this was more challenging on the mental side if I’m being honest. It was pretty dark for a while because the first thing most people do is grab their cell phone and computer and start searching for your disease and they want to learn more about it. 

The prognosis for stage 4 colon cancer patients is not really great. I’ve got 2 young boys and my wife, we have a great family. To think about losing all that in a very short window is very humbling. I went through a pretty dark depression phase where I lost hope. This was before treatment really started and things started to actually show some progress. 

»MORE: Cancer and Mental Health 

I did seek out some professional help from a therapist’s standpoint, and that helped me tremendously. Not only to be able to take the feelings that I’m having at different points throughout the day or the week or whatever and work through and process those but to get me centered and present instead of sheltering away.

Breaking the stigma of men expressing their emotions

I think that the traditional model of men don’t cry, keep your feelings in, walk it off, and rub some dirt on it is just culture. My wife and I had a lot of conversations about depression and the diagnosis. It’s great to be able to talk to friends and family, but there’s a note that a professional can bring to those conversations that friends and family can’t. 

Keith discusses breaking the stigma of men expressing their emotions
Keith encourages seeking professional therapy
Keith appreciates the support he's received from friends and family

Friends and family will tell you, “You got this, you’re going to be okay, we’re going to get through all those things,” and it’s all with good intentions. But the professional side will actually take you through how to deal with the dark stuff, how to work through those feelings, how to deal with anxiety, and how to deal with depression so you can actually enjoy life instead of just living secluded and isolated. 

I did find a couple of groups shortly after my diagnosis that really helped me with peer-to-peer, patient-to-patient, sharing stories, hope, avoiding isolation, and being able to talk to people who truly understood what I was going through.

Talking to children about a cancer diagnosis

Honestly, as a father, that was the hardest conversation I’ve ever had. My wife and I talked a lot about this before and what approach we wanted to take. At the time, 2.5 years ago, they would have been 9 and 11. You think 9 and 11-year-olds are pretty young, but kids are smart, especially with technology at their fingertips. They’re able to find the answers if you don’t provide them, so we made the decision that we were going to be age-appropriate, open, and honest with my diagnosis, my condition, and how life is going to look for a while. 

»MORE: How to Talk to Kids About Cancer

I look back on that and I’m really glad we made that decision because I’ve met other folks that are going through similar things that chose a different option. Every family is different and everybody’s decision on how they include their family in these conversations is something very personal. But I’ve also seen a lot of family and friends be torn apart simply because they felt things were hidden from them.

We made the decision that we were going to be age-appropriate, open, and honest with my diagnosis, my condition, and how life is going to look for a while.

Keith talked to his children about his cancer diagnosis

I wanted that to be the voice, I wanted them to feel like they’re a part of this story and what we’re going through, and not dismissed. Even 2.5 years into this, I still double down and think that was the right decision for us. 

Having a support system

As for my parents and in-laws, we needed a lot of help right in the beginning. This was right at the beginning of summer break when all this happened. My kids are extremely active in sports and activities. Being out of the mix for a while, recovering from surgery, we needed a lot of help shuttling kids here and there and just dealing with life. It doesn’t stop just because somebody gets sick. 

We were able to have a lot of conversations and tough conversations, but at the same time, as family does, there’s a lot of hope, positivity, and support that comes with those conversations.

Keith discusses having a cancer support system

Metastasis

Blood work is pretty traditional and then we also used ctDNA testing to monitor residual disease and that’s actually what gave us the smoke alarm…It posted positive.

How long after your diagnosis did you learn your cancer metastasized? 
A Signatera test revealed cancer was present

About 2 months. It would have been January or February 2022 till March or April that I didn’t have residual disease and nothing showed up on the scans. Then we started using a couple of different tools to monitor my disease. Blood work is pretty traditional and then we also used ctDNA testing to monitor residual disease and that’s actually what gave us the smoke alarm. It was a test called Signatera, which is a molecular test for ctDNA. It posted positive. 

How did you react to your cancer recurrence? 

It sparked a flurry of emotions and feelings that it’s back. Because of that positive test, my medical team ordered scans and so forth. At first, nothing showed up, so we were at this weird place where we knew something was there. We know something’s brewing, but we just can’t see it and we don’t know where it is. 

Keith discusses undergoing recurrence
What treatment did you opt for with your recurrence? 

I’m really lucky in regard to the medical team that I have. My oncologist and I walked through different options. We could do nothing and wait to see what pops up and deal with it then. Or, what is not very common, is my oncologist actually offered me to go ahead and start back on treatment again knowing that something’s there, it’s going to show up, we just don’t know when. While chemotherapy is not fun, we opted to go ahead and start treatment to be as aggressive as we possibly could. About a month after that, they did a follow-up CT and then found 14 spots on both sides of my lungs.

Keith underwent chemo after recurrence
A follow-up scan revealed he had 14 spots on his lungs
Not knowing where the recurrence was at first, was chemotherapy the right choice? 

I think if anything, it bought me time to process and plan with my team what approach we wanted to take. The treatment that I started then would have been the treatment that I would have started if we waited regardless. I know there’s no real way of knowing, but in my heart, I believe it probably saved it from popping up in other places as well. While 14 spots in your lungs are not great, it could have been worse. I think that some of those tools that we’ve used put us in a position to get ahead of it to try to treat it the best we could.

Keith believes the chemo was able to prevent cancer from spreading
What chemo were you on post-recurrence? 

I know there’s no real way of knowing, but in my heart, I believe it probably saved it from popping up in other places as well.

My second line treatment was called XELIRI, which is Xeloda Irinotecan, and then we kept Avastin in the mix as well. I was on that cocktail for about a year and a half.

»MORE: Chemotherapy FAQs & Patient Stories

Keith was on XELIRI chemo
Keith kept Avastin in the mix of his chemo treatment
Did you experience side effects on this chemo?

There were side effects, so still some fatigue and some nausea, but the ability to bounce back was so much faster. When I was on my first-line treatment with Folfox, after that infusion, I would be out of commission for 4 or 5 days in a row and miserable. The worst flu possible is the best way to describe it. 

Keith discusses side effects on his current cancer treatment

Then when I moved to the second-line treatment, the day after infusion was pretty rough. Then you started to come out of it pretty quickly and that cycle was every 3 weeks. I actually got an extra week of good feeling into that mix too. While again, no chemo is great, it definitely was good from a quality-of-life perspective.

Staying on a curative path

We had that tougher conversation around curative intent versus palliative care, and I’m still on a curative path. I’m not ready to succumb to this is going to be my life forever. I know that seems kind of silly at times, but I think for me mentally, I need to know that curative is still a path. 

Keith expresses that cancer stability is positive

I’ve also learned I have to accept stability as positive.

Hearing that was obviously frustrating, it was discouraging. But I feel like we were in the right place to get started when we did. As I said, that cocktail worked for about a year and a half. 

What we started to see, and this was just a couple of months ago was that some of those numbers like my Signatera test started to increase, but my scans still showed stability. Again, maybe I’m an oddball, but we’re in this weird situation where we know the chemo that I’m on wasn’t reducing anymore, but it was keeping things stable. I’ve also learned I have to accept stability as positive. 

But we had that conversation around if this drug is no longer shrinking but is holding it stable, is it best to stay on this until it stops working altogether or do we want to go ahead and fast forward a little bit and jump on third-line treatment? The path that we’ve always taken is the most aggressive path and the best probable outcome. We made the decision to go ahead and jump ship and start third-line treatment, which started about a month and a half ago.

What cancer treatment are you on currently?

The third line for me is Vectibix, which is an EGFR inhibitor along with Irinotecan. So one of the old drugs and one of the new drugs and that’s where this lovely rash comes from, is from the Vectibix.

How long will you be on your current treatment? 

The good news is that I have found options post this line of treatment. Exiting standard of care, there are a couple of clinical trials that I’ve already looked into and tentatively been approved for.

Keith is considering a double lung transplant

Until it stops working. I love being the oddball. All the spots in my lungs are very small and they’re all under a centimeter. So for me to get into any clinical trials, I don’t qualify because they’re not big enough to biopsy. I’m in that weird situation of, you almost want it to grow to be able to qualify for trials and things like that. But mentally, I just can’t accept that. I’m just going to continue to beat it down until I can’t beat it down anymore, so it’s indefinite right now. 

The good news is that I have found options post this line of treatment. Exiting standard of care, there are a couple of clinical trials that I’ve already looked into and tentatively been approved for. It’s a pretty aggressive opportunity that’s being tested in an NCI center close to me, it’s a double lung transplant for metastatic cancer patients. That tumor board has already approved me, but I have to exhaust the traditional standard of care, which is the current treatment that I’m on now.

Reflections

There are plenty more options out there as long as you’re willing to do the research and find them and go wherever it takes to get whatever that treatment may be.

The importance of being a patient advocate

I don’t want to take anything away from my team because they are great, but at the same time, there’s a realization that you’re not their only patient. They’re not going to invest 40 hours a week looking into different options for you. 

Keith encourages cancer patients to advocate of themselves

I’ve learned a lot through a couple of advocacy groups that I’m a part of that have really helped me understand the value of second opinions. For me, second, third, fourth, fifth, sixth, and seventh opinions. I’ve traveled quite a bit to get a better understanding of options that are out there and things that are at different cancer centers I can’t get locally. That has helped me open up some doors and continue to build that hope strategy around, there’s something else after this instead of just saying, this is the last standard of care line. This is it. 

There are plenty more options out there as long as you’re willing to do the research and find them and go wherever it takes to get whatever that treatment may be.

Doing your own research to understand your options

I think a big misunderstanding, and it is not the fault of your local oncologists and teams, I think it’s just how the systems are built. You have to be a component of your care and you have to be an advocate of your care. That also comes with education. I had this misunderstanding that I would just go to my oncologist and they would take care of everything and they would prescribe, “Here’s what you need to do to get rid of X, Y, and Z,” and then things would be great. 

I can’t stress enough, exhaust your options in regard to opinions. There are never too many opinions and too many places to visit to get ideas.

Keith encourages people to do their own research

There are limitations to every cancer center that’s out there. Some specialize in the cancer you have and some don’t. For me, knowing that I’m not going to get a list of trials that are across the United States for me to look into. They provide some that they’re familiar with, but ultimately, a lot of that research lies on the patient along with opinions. I can’t stress enough, exhaust your options in regard to opinions. There are never too many opinions and too many places to visit to get ideas.

How often are your scans?

Because I’m still on active treatment, I see my local team every 2 weeks and we complete scans every 3 months. My next scan will probably be at the end of September. That’ll be the first true telltale sign of how this new line is actually working. My hope is it can get me to a point where surgery would be an option from a lung standpoint, but it’s got to do some good work.

Keith sees his team every two weeks
Keith receives cancer scans every 3 months
Keith hopes chemo will improve the spots on his lung

I will say that the positive is that, I just had my third, but after 2 rounds of this, one of the tumor markers in my blood is the second lowest it’s ever been. I’m hoping that correlates in September to good news on a scan, but we’ll see when we get there.

Do you experience scanxiety? 
Keith expects bad news when he gets scans so that he isn't disappointed

Let yourself be surprised when there’s good news and actually enjoy that.

It was a lot worse in the beginning than it is now, but don’t get me wrong, there’s still scanxiety. I think My Chart is a blessing and a curse at times because you have access to those scans as soon as they’re available. Sometimes I see them before my oncologist. When it’s a good scan, that’s great, because then you can high 5 and move on about the day. It’s when it’s not that the panic sets in – do I need to call, when are they going to see it, what’s our next step? 

»MORE: Coping With Scanxiety: Advice From Cancer Patients

How I’ve learned to deal with it is you just have to accept it. That sounds really weird, but you have to accept the situation you’re in. You’re going to get good news and you’re going to get bad news, and more than likely, you’re going to get bad news more than good news. With that mindset, you’re not expecting to go in and everything’s going to be great and the scans are going to be clear.

Don’t set yourself up for something that’s not realistic. It helps a ton. Let yourself be surprised when there’s good news and actually enjoy that. When it’s not, learning how to process that, going back to see a professional that can help with tools and tips and tricks to work through some of those things has helped me post-scan to be able to control some of those things.

Do you still work?

I stopped working after my diagnosis. We were lucky enough to be in a situation where I could step away from work and we could live our lives as normally as we had. I know that is not the situation for a lot of folks, so I don’t take that lightly. 

What it has allowed me to do is spend my time how I want to spend it and prioritize my time differently than I did in the past. I think with a lot of folks, work is always this big rock that you always have to spend time on. Then, you get home and you got kid’s activities and all these different things. It just consumes the day. With me not having to work, I’ve been able to spend time with my kids that I never would have had the ability to do. 

Keith stopped working following his diagnosis
Keith spent the past two summers doing whatever his sons wanted to do
Keith is able to spend his time the way he chooses

One of the things that I’m most grateful for is the last 2 summers, our kids would go to some type of camp or care when I was working. But since I’ve been home, we didn’t have to do that. I was able to stay with the boys both summers and they coined the term Summer of Dad. What they would do is they would take a plain old calendar, and just start filling it with all these activities that they would want to do throughout the summer break. My job was to find ways to get all those things to happen over the course of 65 days or 80 days or whatever it is. 

It has been so much fun and so rewarding to spend that time with my kids. My phone’s not ringing. I don’t have to worry about email. I don’t have to worry about the grind of a traditional job. I’m able to spend my time how I want.

Which cancer support groups do you recommend?
Keith advocates for COLONTOWN cancer group

I would be remiss if I didn’t mention a couple of groups that helped me tremendously through this diagnosis. One of those is colon cancer-specific. It’s a group called ColonTown, a nonprofit organization that focuses on patient and caregiver-led support, education, and being able to, share stories and speak to people who are going through things that you’re actually going through. 

The other group would be Man Up To Cancer. This is an all-cancer type group, but specifically for men. We touched a little bit earlier on that stigma of male mental health, isolation, and those types of things. That group is phenomenal at helping solve that gap and really providing support and help for men specifically to not isolate during these times and how critical it is to not do that. 

Keith recommends Man Up To Cancer cancer group

As a cancer patient being able to find the people who are going through this with you, it’s amazing. The connections you can make with people, whether it be online or in-person, that are going through things. It’s almost a bond that’s stronger than any relationship I’ve had with people I’ve known for years. I don’t know if it’s a trauma response or what it is, but it’s interesting to be able to surround yourself with like-minded people in similar situations. You just feel that weight gets taken off your shoulders to some extent when you can share and know that people get it.

What advice do you have for others on a cancer journey?
Keith encourages cancer patients to not give up hope

Don’t give up hope, number one. Absolutely educate yourself on your disease and be an advocate for yourself along with your care team. Be a part of those conversations. Don’t just let those conversations be done to you and take your life back. 

To say I’m not scared of death is an extreme understatement. I’m actually terrified of that, but can’t control when that’s going to happen. It’s all in science’s hands at this point. What I don’t want to do if I get to that point, is look back and say I’ve wasted the last year, 2 years, 3 years, whatever that is, worrying and not living my life. That will be my biggest regret as a father, a husband, and just as a human. 

Everybody has a stopwatch above their head, and some might be shorter than others, but I’m going to maximize every day I can and I’m going to do whatever I can to enjoy it, whether that be enjoying my own hobbies or spending time with my friends and family. I’m not going to let it take that part of my life away.

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FAQ Support

Living with an Ostomy: Discovering Confidence, Community & Choices

Navigating Life with an Ostomy: Tips from Patients and Medical Experts

Undergoing an ostomy procedure involves major changes. To offer guidance, The Patient Story hosted a live discussion with colorectal cancer patients Amy Hart and Jason Randall, who both have ostomies, along with Dr. Vanessa Wookey, a gastrointestinal oncologist from Fox Chase Cancer Center

From their real-life expertise, they offer practical advice about living with an ostomy, from diet and clothing tips to cleaning and skincare. Plus, Amy and Jason share how they wear an ostomy with body-positive confidence.

Living with an Ostomy full video conversation

https://www.youtube.com/watch?v=9cSK97yVCN8

What is an Ostomy?

An ostomy is a surgical procedure that brings a section of the intestine or urinary system through an opening (stoma) in the abdomen. Waste passes through the stoma into an external pouch or ostomy bag attached to the skin. 

Ostomies allow the bowels or bladder to function after injury, disease, or birth defects. Reasons for getting one include colorectal cancer, Crohn’s disease, bladder issues, and birth abnormalities according to the United Ostomy Associations of America, Inc.

Catherine has an ostomy and shares her experience.

“You can still do everything you could do before. You can swim and go in hot tubs. You can do everything. It’s not limiting like you might think it is. There’s so many different kinds of bags you can use, so figuring out what’s best for you is a process.”

Catherine P.| Explore her Stage 3 Adenocarcinoma Rectal Cancer Story

Seeking Support for Daily Living Tips

Jason, who has had both an ileostomy and colostomy, highly recommends joining an ostomy support community. “It’s really helpful to ask people questions and dive into the more in-depth stuff,” he says.  

Amy, who shares her experiences online, agrees. “Seeing other people, maybe four years down the road, allows you to see what your life could look like after this massive change.”

Dr. Wookey stresses the value of connecting with those living with ostomies day-to-day: “The best thing patients want is someone who can help them figure out some of the troubleshooting.”

Finding the Right Bag System

There are various ostomy pouching systems available. Jason emphasizes trying different products patiently to see what works best. 

“What one person may work well for them, may not work for another person,” he explains. He started with a two-piece system but found a one-piece pouch simpler.

Amy switched her ostomy bag based on a friend’s recommendation. “It worked out great,” she says. Reaching out to manufacturers for samples helps find the optimal ostomy bag.

Jason modeling for On The Rise, a Colon Club magazine

“Any closed system is not a good idea if you have an ileostomy, because you’d be changing it all day long. Whereas with a colostomy, it’s a little more predictable. It’s easier to manage. People tend to go with closed systems for convenience. 

I used to be a 2-piece ostomy person for both my ileostomy and my colostomy. I’ve had about 2 years of colostomy and 3 months of ileostomy. With the colostomy, I’ve gone down to a 1-piece system.”

Jason Randall | Explore Jason’s Stage 4 Colorectal Cancer Story

Diet Tips

According to Dr. Wookey, there’s no singular best ostomy diet. She advises starting with a low-fiber, low-fat diet after surgery and then slowly reintroducing foods. 

Amy adds, “I eat everything. I just introduced it in small quantities and with a lot of liquids.” She stresses thoroughly chewing food to aid digestion.

Jason recommends tuning into your body’s signals if certain foods cause discomfort. He takes supplements to relieve symptoms of obstruction when needed.

Preventing Leaks and Skin Irritation 

To prevent ostomy pouch leaks, Jason uses special rings around the stoma opening for protection. “Getting a pre-cut bag and not cutting it yourself creates a much better seal,” he says.

For skin irritation, Dr. Wookey advises gentle cleaning around the stoma: “Using just water or a gentle soap is really the most you need.” See your doctor for significant redness or wounds.

Ostomy Clothing Tips

“My life as far as using the bathroom is altered but the only part that’s really impacted by that is the part that happens when I close the door and no one’s in there with me.

[As] life does, it takes a really long time for it to re-settle down, but it does settle back down.”

Amy Hart. | Read Amy’s Stage 3B Colorectal Cancer Story

Amy suggests stretchy, high-waisted clothing styles to accommodate ostomy pouches. She also wears bike shorts under dresses for security. 

For men, Jason fuses a belt called Stealth Belt to keep his pouch securely in place during activity. This also helps prevent abdominal hernias.

Life after ostomy surgery involves adjustments. But support groups, finding optimal products, and an adaptable mindset makes thriving with an ostomy completely possible.

Colorectal Cancer Stories


Shannon M., Colon Cancer, Stage 1




Cancer Details:
Found the cancer as a result of her Lynch Syndrome
1st Symptoms: Routine colonoscopy found polyp
Treatment: Partial colectomy

Hugo T., Colon Cancer, Stage 1



Cancer Details: Diagnosed 2 weeks after 5 years remission from testicular cancer
1st Symptoms: Inflamed bowel
Treatment: Subtotal colectomy, immunotherapy

Rachel B., Sigmoid Colon Cancer, Stage 1



Cancer Details: The sigmoid colon (or pelvic colon) is the part of the large intestine that is closest to the rectum
1st Symptoms: Stomach discomfort, nausea, bloating, blood in stool
Treatment: Colectomy

Chris T., Colon Cancer, Stage 2



Cancer Details: Discovered Lynch Syndrome after genetic testing
1st Symptoms: Found the cancer as a result of family history, early colonoscopy
Treatment: Partial colectomy

Shannon C., Colon Cancer, Stage 2A



Cancer Details: Diagnosed at 29, tested positive for Lynch Syndrome
1st Symptoms: Severe pains after eating
Treatment: Partial colectomy
Barbara smiling

Barbara M., Colon Cancer, Stage 3



Cancer Details: Family history wasn’t flagged, should have had colonoscopy earlier
1st Symptoms: Stomach discomfort, difficult to process food
Treatment: Colectomy, Chemo (FOLFOX, CAPOX)

Shelley B., Colon Cancer, Stage 3B



Cancer Details: Had no usual first symptoms, found as a result of routine colonoscopy and endoscopy
1st Symptoms: None
Treatment:Partial colectomy, chemotherapy (FOLFOX)
Lindsay

Lindsay D., Colon Cancer, Stage 4



Cancer Details: Diagnosed at 32, cancer spread to ovary and lung
1st Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)
Lee

Lee J., Colon Cancer, Stage 4, Recurrence



Cancer Details: Recurrence then remission
1st Symptoms: Discovered stage 4 cancer from unrelated CT scan
Treatment: Neoadjuvant chemo (FOLFOX), hemicolectomy (partial colon surgery), adjuvant chemo (FOLFOX), chemo post-recurrence (FOLFIRI), liver surgery

JJ S., Colorectal Cancer, Stage 4



Age at Diagnosis: 27l



1st Symptoms: Abdominal pain, blood in stool



Treatment: Surgery to remove tumor, chemotherapy, clinical trial of Keytruda (pembrolizumab)
Haley P. feature profile

Haley P., Colon Cancer, Stage 3C



Symptoms: Constipation, fatigue, shortness of breath
Treatment: Surgery, chemotherapy
Amanda G. feature profile

Amanda G., Colon Cancer, Stage 2A



Symptoms: Gurgly stomach, blood in stool, chronic constipation
Treatment: Surgery (hemicolectomy), chemotherapy (CAPOX), Zarxio
Jason R., Stage 4 Colorectal Cancer Diagnosis: Colorectal Cancer Symptoms: Abdominal pain, constipation, belly button discharge Treatment: Liver surgery, chemotherapy, radiation
Angelica A., Bowel Cancer, Stage 3

Symptoms: Fatigue, anemia, irregular bowel movements, loss of appetite, heavy periods Treatment: Laparoscopy, chemotherapy, partial hysterectomy
Danielle shares her stage 4 metastatic colon cancer
Danielle A., Stage 3 Colorectal Cancer Diagnosis: Stage 3 Colorectal Cancer Symptoms: Abdominal pain, constipationTreatment: Surgery, Chemo
Keith shares his stage 4 colorectal cancer story
Keith H., Stage 4 Colorectal Cancer Diagnosis: Stage 4 Colorectal Cancer Symptoms: Abdominal painTreatment: Surgery, Chemo
Categories
Cancers Chemotherapy Colon Colorectal ileostomy Patient Stories

Jason’s Stage 4 Colorectal Cancer Story

Jason’s Stage 4 Colorectal Cancer Story

Jason’s cancer journey began in 2005, in the middle of his Navy service. He began experiencing stomach issues and was diagnosed with GERD. 

In 2018, he was seen by his doctor when he developed severe abdominal pain and infrequent bowel movements. A scan revealed 80% of his liver was covered with metastatic disease, which led to a stage 4 colorectal cancer diagnosis

After years of fighting Veterans Affairs to prove his cancer was connected to exposure to cancer-causing chemicals during his Navy service, restitution was granted through the Pact Act – an Act that grants better healthcare and funding to veterans exposed to toxic chemicals. 

Jason shares his cancer journey, his work with COLONTOWN – a colorectal cancer support network, and how he overcame liver surgery and chemo after doctors said it couldn’t be done. 

Just this year, Jason and his wife launched Kohala House of Healing, a cancer retreat in Hawaii. The lush hideaway is designed for those affected by cancer to find hope, healing, and renewed purpose.

At the Patient Story, we feature the real voices of cancer patients to empower and offer hope. Explore more Colorectal Cancer Stories for further inspiration.

Jason Randall shares his stage 4 colorectal cancer story
  • Name: Jason R. 
  • Diagnosis (DX):
  • Staging: 4
  • Symptoms:
    • GERD
    • Abdominal pain
    • Infrequent bowel movements/ constipation
    • Belly button discharge
  • Age at DX: 35
  • Treatment:
    • Surgery
      • Hepatectomy, cholecystectomy, lower anterior resection, lung ablation, port placement, fistulotomy
    • Chemotherapy
      • Oxaliplatin (OX), Irinotecan (IRI), 5FU (FOLF)
    • Radiation
    • 2 Y-90 radioembolizations

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Table Of Contents
  1. Symptoms & Diagnosis
  2. Treatment
  3. Getting an Ostomy
  4. Post-Treatment Tests & Scans
  5. Reflections

Symptoms & Diagnosis

Tell us about yourself

My name is Jason Randall. I live in Eudora, Kansas with my wife and 3 children. We live on a hobby farm. I was in the Navy for 5 years from 2003 to 2008. After that, I went to school. 

Jason with his wife and kids

My wife and I were best friends in high school. After the Navy and college, we reconnected. When I came back from Hawaii for a semester at the University of Kansas, we started dating. My wife has our daughter from a previous relationship, who I’ve adopted.

We’ve lived on this hobby farm for 10 years. I’m a cartographer by profession. Technically, a GIS analyst. We like to fish as a family. We go to the gym and swim quite a bit.

When did you first notice something wasn’t right?

In about 2005, right in the middle of my Navy service, I had some stomach issues that they tested. They came to the conclusion that I had GERD reflux disease, so they put me on omeprazole and Zantac-type medications. It was fine for years after that. 

Receiving a diagnosis

About 2018, I was diagnosed. It blindsided us. I say us as in my family because I always include caregivers. They are often overlooked in this process. 

They saw that about 80% of my liver was covered in what appeared to be metastatic lesions…It started me in this world of advanced-stage colorectal cancer.

Jason and his family were blindsided by his cancer diagnosis
Jason's scans revealed 80% of his liver was covered in metastatic disease

Two weeks before, I had some severe abdominal pain that I’d never had before and 2 weeks before that, I’d noticed that I wasn’t going to the bathroom at a regular frequency. Then it just stopped and I started getting abdominal pain. That’s when I thought something was wrong. I need to go get this checked out. 

My mom had diverticulitis quite a bit over the last couple of decades and they said, “It’s probably that. Let’s get a CT scan just to make sure so we can put you on antibiotics for it.” 

I had that scan on July 16th. They saw that about 80% of my liver was covered in what appeared to be metastatic lesions. That prompted a PET scan on the 17th which confirmed it. My liver, the large majority of it, was covered in metastatic disease. It started me in this world of advanced-stage colorectal cancer.

Was there any connection between your GERD and colorectal cancer?

I brought that up along the way many times after I was diagnosed. The doctors never put them together because they generally think, anything in the upper esophagus or upper GI tract is Barrett’s disease or esophageal cancer instead of colorectal cancer. 

Jason's doctors believe his advanced cancer stage means he began developing cancer 10-15 years prior to his diagnosis

My colon, where we found the tumor was at the sigmoid part of my colon, right before the rectum. So there really wasn’t a tie to it. 

Ironically, after I had surgery to remove 30 cm of my colon, my GERD completely went away. It cued me to ask, what’s going on here? 

If you look at the history all the way back to 2005, I was on ranitidine, which is Zantac. Then when I got out of the military into the Veteran Affairs (VA) system, I was on omeprazole for 10 years. My doctor mentioned that the advanced stage of my disease and the extent of it [means] it had been in me for about 10 to 15 years at a minimum. That squarely placed it right in my military service.

Did the VA take responsibility for your diagnosis after your exposure to cancer-causing chemicals?

Not definitively. Presumptively, yes. I was fighting the VA for about 3 years, trying to tell them that everything lines up with the exposures I had while I was in the Newport News Shipyard. 

After I got out of my basic and my school training, I reported to the USS Eisenhower in 2004, in what they call an RCOH overhaul, where they take an aircraft carrier in the middle of its life and completely redo everything. They take it down to bare steel. They replace the reactor rods. I was in that environment for about 2 years. 

The Pact Act led the VA to take responsibility for Jason's cancer
Jason fought Veteran's Affairs for years before the Pact Act

We had all sorts of chemical and toxic exposures. You can use PPE and try to protect yourself, but you still inhale it once you take the equipment off. I was also within the burn pit zones in the Persian Gulf from 2006 to 2007. 

Finding help through the Pact Act

They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types.

The Pact Act relieved a large financial burden from medical bills

Jon Stewart was one of the biggest promoters of this law called the Pact Act for Toxic Exposures and Burn Pits. It finally connected my service to my cancer diagnosis. 

Because of the way the laws were written before, the burden of proof was on the person having cancer. They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types, like prostate, breast cancer, colorectal cancer, and all sorts of different things. 

The law was really good to help veterans who have been struggling to get this care and to have the military take responsibility for that within their service.

Did you have any other symptoms before your diagnosis?

The only other symptom was, before diagnosis, I had something in my belly button that would appear every 4 to 5 months. By the time I could get in [to the doctor’s office], it would go away. They’d say, come back when you can. By the time I could get scheduled, it would go away. 

It only lasted for a couple of days and it was like a little bit of discharge from my belly button and a little bit of hair follicles. It seemed like there were hair follicles that would come out. It’s hard to explain, but something wasn’t right. 

Jason and his family

It turns out that’s right where my primary tumor was, along the sigmoid colon. It was like, this could be a correlation to that. 

What happens, happens but I wish I could have got in when they could have examined that a little bit better.

Did you have bleeding?

They say the number one symptom of colorectal cancer is no symptoms at all.

You hear a lot of people with colorectal cancer say they had blood in their stool. I think I’ve only had it at one point and it’s because I ended up having an emergency stent placed shortly after diagnosis because of the situation at hand. Even then, it was a couple of times. 

They say the number one symptom of colorectal cancer is no symptoms at all.

How did you react to receiving your cancer diagnosis? 
Like many, Jason was unprepared for a cancer diagnosis

No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it.

It’s very vivid, even though in July, it’ll be 5 years now on this journey. I was diagnosed on July 17th, 2018. It was 2 days after my son’s second birthday, and my wife was pregnant with our third child. 

I remember walking into the doctor’s office after the CT scan. They called about 15 minutes later and said, we need to see you tomorrow first thing. I go in and the doctor casually says, “I don’t know another way to put this, but you’ve got cancer and it spread to your liver.” I said, okay, took a minute, and then as soon as I walked through the doors leaving the place, it was like a rush of holy crap. I’m a dead man.

No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it. I thought I was dead. 

I come from a large breast cancer family. I carry a BRCA1 germline mutation. The women in my family, if they’re a carrier, they’re almost guaranteed to get breast cancer. It’s not as prominent in men. My mom had cancer, and her mother passed from cancer. I have had exposure to this, but it was emotionally devastating. 

»MORE: Patients share how they processed a cancer diagnosis

How did your wife react to your diagnosis?
Jason's wife reacts to his cancer diagnosis

My wife was at the bowling alley with the kids and a friend. When I called her, she completely lost it. It was a bad, very dark time. We ended up coming home that night, my wife and I. We had my parents watch the kids, and we just held each other thinking, how much time do I have? 

With 80% of my liver covered, that’s not a good situation. And I had a fully blocked sigmoid colon so they couldn’t go in and remove the primary tumor. I had to have that stent open me up before I could pass stool. Everything from there was a whirlwind getting into doctors, and getting the stent placed. It was emotionally devastating.

Treatment

What were the next steps in your treatment?

That’s a little more vague to me. I do remember [the doctor] saying, we’re going to have to get you in for a PET scan, which happened the next day to confirm it. After that, I was at my local hospital system near Lawrence. 

Getting a second opinion led to new treatment options

If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.

Luckily, I have a doctor cousin who took me with his training. We called him and asked, “Do you have any advice?” He said, “I want you to go see Dr. Miranda at KU Medical Center,” which is the National Cancer Institute (NCI) here in the Kansas City area. It’s the only one in the Kansas City area. 

He came with me to the appointment. That was a very pivotal moment in this. Going to one of the top centers in the area with that NCI rating, it’s important to have. 

I work in the colorectal cancer support community and advocacy, and I heard the average time for people going from symptoms to starting chemotherapy is above 200 days, which is insane. I got in within 2 weeks. I was diagnosed on July 17th and I had my first chemo on August 1st, about 2 weeks later. I’m very blessed to have that team move that quickly. 

A lot of it is very vague. It was just, go see this doctor, see this, get this scope. If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.

I’m very grateful my oncologist never told me an expiration date. They did say, “You have a terminal prognosis of chemo for life and are inoperable due to your extended disease. You’ll never get off chemo and you’ll never be operated on for a curative intent. Palliative reasons, possibly, but we’ll do everything we can to extend your life.” That was a big pill to swallow

How did you come to terms with a terminal prognosis? 
It was difficult for Jason to come to terms with his prognosis

I don’t know if I ever fully digested it. I never believed I had cancer. It was all very surreal. I thought, is this happening? Did I get phase-shifted into some weird parallel universe? This has to be a bad dream. When am I going to wake up? 

It was a lot to process. Every time I heard it, I would sigh and griff and say, “No, I don’t want to hear this. This is not my fate. I don’t foresee this being me.” It was really hard to swallow, especially every time my oncologist said, “We’ll do everything we can to extend your life, but you will be on this forever.”

»MORE: A colorectal cancer oncologist shares guidance to patients

What treatments were you on?

I was put on what they call FOLFIRINOX. Sometimes they call it FOLFOXIRI. It’s basically how the drug is administered. With colorectal cancer, if you’re not a candidate for immunotherapy, irinotecan, and oxaliplatin are the 2 big drugs [that are given], and 5-FU which has been a standard since the 70s. 

I had what’s called the kitchen sink. It was a combo of those 3 drugs. I started on August 1st and I started with what would have been the first of 30 initial cycles. I did 9 of the FOLFIRINOX, then we paused to do Y-90, which is Yttrium-90. It’s a radioactive isotope of the element yttrium. 

Jason was on irinotecan and oxaliplatin

They go through your hepatic vein and your groin and they send a catheter up into your liver. It’s a liver-directed therapy where they drop millions of radioactive resin beads right into your liver where the tumors generally form based on where the blood flows. I had 2 of those in November and December 2018, then I resumed 11 more treatments of what they call FOLFOX, which is the previous one, minus the irinotecan. They wanted to drop down the irinotecan because of the 2 Y-90. It’s a lot to take on with the radiation.

It’s targeted radiation, so I ended up having 6 of the 5-FU, largely driven by blood numbers – whether my white blood cells were up or my platelets were high enough. My big issue was low platelets, something I still suffer from today, from all those treatments. 

Switching treatments due to lung spots

In September of 2019, I had some lung spots show up so we switched the drug oxaliplatin. A lot of the time, oxaliplatin causes severe neuropathy. Luckily, I never had too bad of that and I ended up taking 20 cycles with that in the mix, which is a lot. Some people dip out after 4. Usually, it’s between 8 and 12 of those. 

Then I started back on the irinotecan drug through a combo called FOLFIRI. We added a biological drug called Vectibix or panitumumab, an epidural growth factor inhibitor that prevents blood vessels from growing. I did 4 more treatments through December 2019, and then I stopped to break for Christmas. 

Getting a second opinion led to new treatment options

Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life.

My story started to change through COLONTOWN, an online colorectal cancer support community. I learned about Dr. Fong who’s a liver specialist and surgical oncologist. He doesn’t do just the liver, he does a lot of stuff in the abdomen area minus the colon itself. 

People kept saying, you need to go see him. I had scans in December at my local center. Even though I had a really good response to chemo, they told me, you’re going to be on chemo for life and inoperable. They were scared that if I did have liver surgery, the liver would grow back. It’s the only organ that does that and the disease would progress with that regrowth. 

City of Hope in California

Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life. It led to a surgery that was 12 hours long in February 2020. 

They removed my entire right side and a right hepatectomy and then a lower anterior resection (LAR). They removed 30 cm of colon and a quarter of my rectum with curative intent and also took my gallbladder. I had 5 ablations on my left side at the time. I had lost 110 pounds prior to that surgery.

What inspired you to get a second opinion?
COLONTOWN is a support network for colon cancer patients

It was the support group COLONTOWN. People kept mentioning it. I was holding out on hope at my current NCI center. I still actually see them to this day, but I was hoping that with that next set of scans, they’d say, we’re going to try. They never did. 

Ultimately it was my wife who said, “You need to go do this. Let’s go out to California. What is the worst they’re going to say? No, and you’re still the same?” I said okay, let’s rule it out. If one of the top people in the world says no, then it’s my fate. Thankfully it wasn’t.

Cancer reoccurrence and COVID caused changes to treatment
Cancer reoccurrence and COVID caused changes to treatment

That’s not where the treatments ended. I stopped chemo after that because I had 30 cycles and 2 liver embolizations and they said my body needed a break. About 6 months later it returned, but not in my liver or colon. It returned in my tailbone in October 2020. 

I started back on the FOLFIRI with the Vectibix for 4 more cycles. On my very last cycle, my 34th chemo, 2 days later I tested positive for COVID. That was a crazy week. COVID delayed my radiation treatment. 

In February and March of 2021, I had 28 full pelvic radiation sessions to the entire pelvic region, which destroyed my rectum. For 3 months, it was pretty rough. I was sitting on the toilet for 3-plus hours a day, not really living life, just stuck. 

Finding hope after his son’s birth

Throughout January and February 2019, I was on a lot of treatments. My son was still in my wife’s belly at the time. I caught him about 2 hours after my eighth round of heavy chemo. That gave me a lot of motivation, wanting to see my kids grow older. 

It’s a very powerful moment in my life. Seeing my son born and being able to catch him. Both my sons were born at this house. My wife did a home birth, bless her soul. I didn’t think it would work out, but it did and it really changed me. It gave me a little bit more hope in October 2018 when that happened. 

Jason's son being born gave him new hope

Then it got dark again. I had surgery in January 2019 because the chemo destroyed my anus and caused a fistula to bore through. It caused a lot of pain. 

»MORE: Parents share how they talked to their kids about cancer

Integrative medicine in cancer care

In early February, I found an integrative medicine doctor through my dentist of all people. I went to see him and he joined my team. That was one of the biggest moments of my cancer experience. Not just diet and exercise, which are important, but he also helped mitigate the side effects, which helped get through it and process it.

Jason stayed hopeful

I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life.

One of the biggest things [he taught me] was the mind-body connection and meditation called Psychosomatic Wellness, which has a lot of science behind it. I wasn’t big into that kind of stuff. I thought, “This is heebie jeebie. This isn’t going to work.” 

About a month into it, I connected to it. I went somewhere. I still don’t know what to call it. Some people may call it universal energy, God, chi, soul. Whatever you want to call it, I went somewhere and connected with something. It really helped me process things. 

I was able to accept life, death, purpose, and what all this means. I was grateful for whatever was to come. I carried that into this second opinion. I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life. What do I have to lose? I went out to California and sure enough, it happened and here I am still.

Jason remained hopeful despite being told he would be on chemo for life

Getting an Ostomy

Describe getting an ostomy bag

Back during the big February 2020 surgery, I had a temporary ileostomy placed which is where the small bowel dumps into a bag with a stoma. That was reversed in May 2020. 

Fast forward to the radiation. In June 2021, I had an abdominal perineal resection (APR). It’s a surgery that’s known as Ken or Barbie butt. Imagine a Ken doll or a Barbie doll. They just have a straight stitch on the backside. They took my anus, my rectum, and in my case, my tailbone and part of my sacrum to get clear margins. It was successful, and it left me with a permanent colostomy bag but it’s been a blessing in disguise. 

Having it removed has been great for me. I don’t sit on the toilet for 3 hours a day. I spend 60-90 seconds messing with bowel function now. I still swim 3 to 4 times a day. I get to play with my kids. I lost 110 pounds and I wasn’t sure if I’d ever gain it back, and now I’m on the other end of it. It’s been so good to me that now I need to lose a few pounds.

Jason swims 3-4 times a day with his colostomy bag
Jason is able to play with his kids with his colostomy bag
Jason lost 110 pounds during his cancer diagnosis, which he gained back in time
What types of ostomy bags are there and which do you use?

There are several types of ostomy:

  • The ostomy that comes off your small bowel and avoids your large intestine.
  • A colostomy, which can be placed along your transverse colon all the way down to your sigmoid. 
  • One-piece open bags which have a little cut-off valve that you can drain as needed.
  • Two-piece drainable bags. 
  • Two-piece closed systems in one-piece closed systems.
There are several types of ostomy bags to choose from
Jason's had success with both colostomy and ileostomy bags

I had a temporary ileostomy. At first, they tend to be more of a liquid output. They’re always on because the way the bowel works is your ileo dumps into your cecum and that’s when your stool starts to form. Before that, it’s all liquid as your small intestine absorbs nutrients. [Ileostomy is] common when people have a large surgery over a colostomy. 

If you’re removing the lower part, you tend to get a stoma. That’s the medical name for the exit point. The stools tend to be more formed, it’s more predictable. I find that [colostomy] systems are a lot easier to use than the ileostomy systems. 

Considerations when choosing an ostomy bag

Any closed system is not a good idea if you have an ileostomy, because you’d be changing it all day long. Whereas with a colostomy, it’s a little more predictable. It’s easier to manage. People tend to go with closed systems for convenience. 

I used to be a 2-piece ostomy person for both my ileostomy and my colostomy. I’ve had about 2 years of colostomy and 3 months of ileostomy. With the colostomy, I’ve gone down to a 1-piece system. 

There’s usually, a flange that adheres to your stomach. Once that gets on, a lot of people use either pastes, barriers, or protective rings to help hold that on to prevent leaking. 

Leaking is the #1 thing that gets people flustered. It’s like crapping your pants and no one wants to crap their pants. It’s one of the big anxiety drivers with an ostomy. Am I going to leak? How am I going to manage this? 

Also when you have a peristomal hernia. The creation of a stoma is a hernia in itself. That can cause more herniations so you want to be very careful with your abdominal wall and building your core back. When you get a herniation, you can feel it. It can lead to blockages. 

With an ileostomy, you have to watch your diet a lot more than with a colostomy. Things tend to get blocked more with the ileostomy. From my experience and hearing from others’ experiences with a colostomy, people can still get it.

Leaking is the #1 thing that gets people flustered…It’s one of the big anxiety drivers with an ostomy.

If you have an ostomy, make sure you have a good hernia belt. I’ve got several. I have several Stealth belts. I also have one called a Stomaplex, which is like a stoma guard for impact. You don’t want things to hit it because it can bleed. Some people also use a Nu-Hope binder. It’s like a taller binder that goes around with a hole in it to support that and push your abdominal wall together so that you don’t herniate as often.

Special belts are recommended to support and prevent hernias
Jason uses Stomaplex to guard his stoma against impact
Jason has several Stealth belts for hernias
Is colostomy irrigation an option for some?

You cannot do it with an ileostomy, but with a colostomy, not many people are aware you can do irrigation. Instead of having to worry about having a bag going throughout the day and finding a frequency, people that are more active tend to go the irrigation route. 

Imagine an enema but for your stoma. It goes all the way up your bowel track and basically gets behind the stool and you force water through it and then drain it over the next 30 minutes to an hour after that. When it drains, your bowel is empty and you can put a stoma cap on it. A lot of people are able to go hiking for 24 to 48 hours at a time [after irrigation].

Has your ostomy experience always been good?
Jason recommends trying different ostomy bags to find what works for you

Go out there and explore, call, get samples if you can, and find the system that works for you.

I’ve had a very good experience with my colostomy and my ileostomy. A lot of people do have struggles though, so if someone’s out there and they’re asking, “Why does this guy have such a good experience?” You’re not alone. 

I struggled the first couple of months with mine before I found a nice rhythm and system. Don’t be afraid to call the 3 big companies – Hollister, Convatec, and Coloplast – and request samples. It can be very good to talk to one of their reps to find out what system works for you.

Having an option between a flat bag and a convex bag can be a game changer. A lot of people get stuck and say, “This is what the hospital gave me. How do I deal with this?” Go out there and explore, call, get samples if you can, and find the system that works for you. Because what works well for me may not work well for you.

Post-Treatment Tests & Scans

A circulation tumor DNA (ctDNA) test helped catch cancer reoccurrence 

In June when I had the APR, I got the colostomy, and my Ken butt, I had about a year’s worth of no evidence of disease (NED). Then I had a reoccurrence in my lung. A spot that had been on CT scans since diagnosis, which they thought was scar tissue, initially never responded to any other thing. After all the chemo I went through, it decided to grow in May 2022. 

A Signatera ctDNA test detected cancer reoccurrence in Jason's tailbone

I didn’t go on treatment because we caught it very early. I’m on a circulating tumor DNA test (ctDNA) called Signatera. Another company, Guardant, has one called the Reveal. It’s the same test, different companies. They sequence the biology of your tumor, specific to the person and no one else. The signature will never pop up in anyone else. 

It can detect circulating tumor DNA in your body. It’s not cancer itself, it’s just junk DNA our body puts off, but it has that signature of your disease and they can detect if you have a reoccurrence. My tailbone reoccurrence was caught by September or October 2020. 

After I went through the radiation, the chemo and more radiation, and the second major surgery, I was about a year clear. Then I had that Signatera test which detected an extremely low amount. 

Is a ctDNA test for everybody? 

It’s still in the testing phase. Not everyone responds the same. Their bodies aren’t as sensitive to the test.

There are also different areas of the body that put off more ctDNA like the liver, whereas the perineal may not. It’s still in flux, but it can be another tool because the normal marker for me was never above. It was always within range and it still is. It’s never varied more than a point, so it was never really a good indicator. The Signatera test has been really important for that. 

COVID delayed a necessary treatment

In May 2022 when I had a spot come back in my lung that grew, COVID struck again. When I went in to get it ablated, I’d had COVID 3 weeks prior. Even though I felt better, my lungs still had some junk in them covering up the spot and they can’t ablate what they can’t see. 

Then in August 2022, I had a biopsy that confirmed it was colorectal cancer in my lung and I had an ablation the same day. I was in at 6 a.m. and I was out by noon, working at 12:30. It was the least invasive. It allowed me to skip treatments by detecting them so early. 

As of Monday, I had a negative Signatera test come back and I had my CT scans showing that I’m 9 months no evidence of disease and I’ve been off chemo for 2.5 years.

COVID delayed Jason's lung ablation
How does it feel to be done with chemo?

Surreal. They told me I’d never get off of it, and here I am. 2.5 years off of chemo.

How often do you have scans?

Right now it’s every 3 months until I hit 2 years. Then it should jump up to every 6 months. In 3 to 5 years, they’ll jump it up to either none at all or every year. 

I plan on setting records. I’m going to be the longest person NED ever. At least that’s the way I’m setting my mind up for it. 

Reflections

Describe the work you’ve done since being diagnosed
Jason and friends standing in support of Man Up To Cancer
Man Up To Cancer encourages men to not isolate after a cancer diagnosis
Jason carries the banner for Man Up To Cancer

I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.

I do a lot of work within the colorectal cancer support space. I’ve worked for COLONTOWN since July 2020, after I had my Dr. Fong surgery. Dr. Kaiser was my colorectal surgeon. 

PALTOWN, which is the nonprofit for COLONTOWN, asked me to be on their leadership cabinet. They were forming a new leadership cabinet, a new model. There are 7 of us. I’ve been there ever since. 

I do a lot of support work. I reach out to a lot of people. I do work for Man Up to Cancer. A primary goal is keeping men from isolating during a diagnosis. 

I also do early-onset colorectal cancer awareness through the Colon Club. Through that group, I was in their 2023 On the Rise magazine. It lays out where we’re at and our story to raise early-onset awareness. It came with a photo shoot. I never thought I’d become a model but here I am.

Jason modeling for On The Rise, a Colon Club magazine
Jason shares his story in On The Rise magazine
Jason poses with his ostomy bag for On The Rise magazine

I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.

The importance of expressing your emotions

Meditation, I went somewhere with it and that was my first foray into the emotional side of [my diagnosis]. I learned to accept that it’s okay to be emotional. And we should be emotional because if you push it down, it does nothing but hurt your mental health. Other people are going through this, and at this point in the game, if you have cancer, who cares? 

Jason encourages cancer patients to express themselves

It’s so much easier said than done, but you need to talk. Tell everyone how you feel. Some people are quieter than others. If you need to join a group and listen to other people do it, you don’t have to be active in those communities. Seeing what other people are going through can help your mental and emotional health more than anything. Some of us happen to be a little more vocal about it, but it helps to get people out of that bubble, that survival mode that we get stuck in. 

A trip to Hawaii led to new revelations 

In 2021, my family was gifted a vacation. During this trip, we realized that we weren’t living. We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival. 

A family trip to Hawaii changed Jason's projectory
Jason was inspired to create a cancer retreat center
Jason and his wife began planning to start a cancer retreat center

It woke something up in us. We asked, what have we been doing? I’m doing all this support work, but we’re just going through the motions. We’re not really living our own lives. 

We came up with the idea of going back to the Big Island of Hawaii. Then we said, we should move back there. 

We came back [home], I looked at my wife and said, “I have this crazy idea. Would you ever move back, get a secondary house and host people to experience what we did?” I was thinking she was going to say, “You’re nuts, Jason. No.” And she said, “Yeah. I think that would be great.” So we started developing this plan. 

I went to school for a semester on Oahu at the University of Hawaii Manoa studying anthropology and geography. It’s a beautiful place. If you’ve never been, I highly suggest going. 

Jason's family realized on a trip to Hawaii that they were in survival mode rather than living to the fullest

We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival.

Connecting with a cancer retreat center

About 6 months into [developing this plan], I was looking for health care on the Big Island or through the VA because I’ll always need to go see doctors. I found this cancer retreat on the north side of Hawaii on the Kohala Crater. We said, “Holy crap. These people are doing what we thought of, except it’s a whole retreat center.” We reached out to them and they agreed to become our mentors. 

Life gets busy with 3 kids and I was still worrying about that lung reoccurrence. Two days before or after my lung ablation, I finally had my VA claim accepted which lifted a huge medical burden off of my back because they’ll cover all my medical expenses. That freed up some resources. 

My wife and I flew out in December to visit them as a patient and a caregiver to see what they had to offer. We really bonded with the couple. We shared our story with them. She was a cancer survivor. Her husband was on chemo for 12 years before she got with her current husband. He was a disabled veteran as well, and we really bonded. 

Jason connected with a cancer retreat center in Hawaii
Jason and his wife are close to accomplishing their dream of owning the cancer retreat center they visited in Hawaii
Jason and his wife have plans of living on-site in Hawaii

We told them our dream and they offered to sell us the place. I went back for 5 weeks in April and March of this year to see what they meant by that, get more details, figure it out, and work on the farm. It’s also a sustainable farm that teaches food as medicine, and it has a temple that aligns with the integrative practices that I was doing, which was so beneficial to me.

After that trip ended, we came back and we now have a purchase agreement with a timeline to make that happen. We’ve got a little more money to raise and we have a timeline to do that. 

My wife and I want to move our family out there, live on-site, and host cancer patients. Ultimately, it would be if we can find enough funding where it’s no cost to other people, but we’ll see how it goes once we get the next steps in place. That’s pretty active right now. We’ve formed an LLC and our nonprofit to make that happen. 

>>>See Kohola House of Healing

What’s helped you stay hopeful throughout your cancer journey? 

It’s hard to think in terms of hope when you are told, you’re not going to have any other options or it’s a grave diagnosis. Sometimes it’s hard to remove yourself from thinking way into the future. You have to just take it day by day. Take every day, even if it’s minute by minute, hour by hour. Do what you can to help yourself get through the day. Join support groups. That’s been such a big, thing. 

The first thing you need to do is never look at Dr. Google. It’ll send you down a rabbit hole of despair. I had my first mental breakdown ever because I was looking at Google and looking at different statistics, then I started thinking about my kids. Avoid that. 

Jason encourages cancer patients to take it day by day

Find your people. Find people that will lift you up and support you. A lot of people lose their support networks, especially once they’re out of treatment. Everyone thinks, I’m cured or thinks, you’re done. You’re never really done. Whether the physical stuff is over and the treatments are over, there’s going to be mental and emotional damage. Don’t dwell on that. Everyone goes through this with a cancer diagnosis. It’s okay to not be okay.

What advice do you have for someone recently diagnosed with cancer?
Jason recommends setting future goals

If I have any advice for anyone starting a diagnosis is, once you get diagnosed, it’s going to be rough at first. But once you get through that initial despair and anxiety, start setting goals. Future goals.

Something my integrative medicine doctor told me and it’s been my mantra ever since, he said, “Jason, set a goal and reach it. And once you reach that goal, set another one. Always keep your eye on the prize.”

Jason's colorectal cancer timeline

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