About IBD Podcast Episode 120 - Don’t Google Your Symptoms With CJ Papuro

About IBD Podcast Episode 120 – Don’t Google Your Symptoms With CJ Papuro

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There aren’t as many men who are vocal in the inflammatory bowel disease (IBD) space as there are women. Crohn’s disease and ulcerative colitis affect men as often as they do women, but fewer men seem comfortable being public about their disease.

That’s why Carlos “CJ” Cabrera, who also goes by CJ Papuro, entered the IBD community after his diagnosis of ulcerative colitis. He gives an overview of how difficult it was to be diagnosed as a US veteran using the Veterans Health Administration, his struggles with finding his way with nutrition, the ways in which IBD has affected him as a man, and his advice for other men.

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Concepts discussed on this episode include:

Find CJ Papuro at:

Find Amber J Tresca at:

Credits:

[MUSIC: IBD Dance Party]

Amber Tresca (00:05):

I’m Amber Tresca and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.

Welcome to Episode 120.

One of the things that we sometimes say about IBD is that Crohn’s disease and ulcerative colitis affect men and women in the same numbers. But that doesn’t mean that these diseases affect everyone’s lives in the same way. It’s no surprise that there are more women active in the patient advocacy community than there are men. This show is a perfect example. It is far easier for me to book women for an interview than it is to book men.

Amber Tresca (00:44):

Another thing I see in the IBD space is that women are often the ones asking questions for the men in their life about medications, surgery and quality of life issues. It’s clear that we have some challenges to address in order to better help men living with IBD. That’s why I asked Carlos CJ Cabrera, who also goes by CJ Papuro, to explain how living with ulcerative colitis has affected him, why he began sharing his journey with IBD and mental health and how he not only found a community where he felt welcome, but became an ambassador to help others.

Amber Tresca:

CJ, thank you so much for coming on About IBD.

CJ Papuro (01:28):

Thank you for having me.

Amber Tresca (01:29):

Would you please introduce yourself and let us know what your diagnosis is and what your role is in the IBD community?

CJ Papuro (01:37):

Yes. My name is Carlos Cabrera, I go by CJ Papuro. I have ulcerative colitis and my role in the IBD community is an advocate and I’m a host ambassador for Color of Crohn’s & Chronic Illness.

Amber Tresca (01:51):

I wonder if we could start by you telling me a little bit about how you were diagnosed with IBD.

CJ Papuro (01:57):

Yes. I’d want to say that my stomach problems began in 2016 a week before getting out of the military. I ended up in the ER with a lacerated spleen grade two, no physical blow or trauma. So everybody and their moms was confused at the doctors when I walked in there and they gave me the CAT scan and they’re asking me, “Are you sure there was no physical blow or trauma?” I was like, “Yes, all we did was drive up to Big Bear, ate, went to a bar and then came back.” After that, I ended up getting out maybe two weeks later, I continued living my life as a normal vet trying to go to college. Around that time, I wanted to gain some weight as well so I started weight lifting, got into school. And not too long later, maybe a few months later after being in school and lifting consistently, I started to get blood in stool. And as a guy, I just thought it had to do with a rough bathroom session. And then I had diarrhea as well and I just chalked it up to the protein poops.

CJ Papuro (03:14):

I just kept going with it because I saw results in the fitness and I disregarded the stuff that was going on in the bathroom. But I ended up having it more consistently. It ended up getting a little bit worse and worse each time. And then eventually, it led up to me just filling the toilet bowl completely up with blood. That was very alarming for me. I knew something was seriously wrong with me. Then I told my parents and they told me, “You’ve got to go to the doctors 100%.” And one of my barriers for me to going to the doctors was finances. I didn’t have insurance. I was still trying to get set up with the VA or the Veteran’s Affairs Hospital. And they sent me to a private doctor and that private doctor said it could possibly be hemorrhoids from all the heavy lifting and they put me on a whole wheat, high fiber diet. And if we know IBD, that is not good for us. So eventually, that just ended up making my symptoms worse, still filling up the toilet bowl with blood.

CJ Papuro (04:30):

Ended up in the ER a couple times as well. And then after the ER, that’s when I knew that I really needed to get set up with the VA because those ER visits, they were just slapping me with a $500 bill, a $700 bill for one visit. And me over here not working, that just made me not want to go to the ER or the doctor anymore than I already was. So when I finally got set up with the VA fast forward 2018, I’m still going to school and it’s around, I’d say, March time and I finally got my date for my colonoscopy, and all my symptoms disappeared completely. Yes. They disappeared completely and I was just-

Amber Tresca (05:29):

Did you do something? Or they just stopped?

CJ Papuro (05:32):

It just stopped-

Amber Tresca (05:33):

Inexplicably.

CJ Papuro (05:33):

Inexplicably just stopped.

Amber Tresca (05:35):

That’s wild.

CJ Papuro (05:35):

And me being the young naive person I was, I was like, “Oh, I’m cured.” But no. No, no, the thing was that I had that, “Oh, I’m cured,” once already and I ended up in the ER, so I ended up calling the doctor and I was like, “Hey, my symptoms disappeared on me and it’s been a couple days and they haven’t appeared.” I’m like, “Should I still get this colonoscopy?” And the nurse told me, “If you’re not having any symptoms you don’t have to get it, but we recommend you do.” And me being the guy that I am, all I was listening for was the no.

Amber Tresca (06:13):

The “no.”

CJ Papuro (06:15):

And then I said, “Okay, thank you,” and then I hung up. Fast forward, I’m in the ER again-

Amber Tresca (06:20):

Oh, no.

CJ Papuro (06:21):

A month later. And then I’m just like, “Yeah, I can’t. I’ve got to get a colonoscopy.” And by then, I already had the prep, I already went through the class with the VA and I was already set up with the VA.

Amber Tresca (06:32):

Yeah.

CJ Papuro (06:32):

Because it took a total about six months to get set up with the VA.

Amber Tresca (06:36):

Oh my gosh.

CJ Papuro (06:38):

And I had to bounce in between two departments of primary care. And then finally, when I got that diagnosis in April 2018, all my doctor did was he gave me a pamphlet to the Crohn’s and Colitis Foundation and said if I had any questions to ask him and he told me some things not to eat and what to avoid. And that was about it.

[MUSIC: About IBD Transition]

Amber Tresca (07:02):

Almost every diagnosis story I’ve ever heard is pretty wild, but yours is one of the wildest. So it started with your spleen, but it sounds like you still don’t know what happened there? What was that about?

CJ Papuro (07:15):

It’s a mystery to everyone and me and the doctors as well. I stayed in the hospital for a week, I didn’t have to get surgery or anything, it just healed up completely on its own.

Amber Tresca (07:26):

It seems like based on the timeline here that it might be related.

CJ Papuro (07:32):

It ended up setting me up for my future though. Because of that, I was able to link the two together because they’re both in my guts and I was able to get VA benefits for my ulcerative colitis.

Amber Tresca (07:47):

Did your doctors ever give you any advice about diet or tell you things that you should or shouldn’t be eating?

CJ Papuro (07:52):

One thing he did tell me too, I asked him a question. I asked him because I knew it was inflammatory bowel disease and I asked him if diet had to do a part of it. And he said no.

Amber Tresca (08:23):

What has your relationship with your diet been like? And how has that changed since you were diagnosed?

CJ Papuro (08:29):

I thought I was doing everything good and healthy, working out, eating, trying to gain weight, going to school. But I guess my body was never meant to handle dairy because when I was going through my bulking phase, I tried to do it the normal way, eating six meals, five meals a day. But back then, I couldn’t really do that. That was just too much food for me. So my friend put me onto drinking mass gainers. I would drink mass gainers, they’re about 1,200 some calories, 1,300 per shake, along with 12 ounces of whole milk.

Amber Tresca (09:12):

Oh.

CJ Papuro (09:12):

And I would do about two of those shakes a day on top of food. So I found out that mass gainers have maltodextrin in it and maltodextrin is a type of sweetener I guess or sugar. And taking a lot of maltodextrin can actually change your microbiome. And that’s what I feel I did. I changed my microbiome with that. But on top of that, I already had my stressors from the military play an effect into that. I guess that’s what happened with the spleen. And then I ended up continuing that with the bulking cycle and then to throw on top of that school, another stressor.

Amber Tresca (09:58):

Right.

CJ Papuro (10:00):

So a whole bunch of different stressors, environmental factors just sped up my IBD. I know I don’t really have anybody in my family officially diagnosed with IBD, but I know they have GI problems. And my mom last year on Mother’s Day, we were in the ER for mild colitis. And then-

Amber Tresca (10:22):

They diagnosed her with mild colitis?

CJ Papuro (10:24):

At the ER. But-

Amber Tresca (10:25):

Okay, what does that mean?

CJ Papuro (10:27):

That’s what I’m saying. And then I was like, “No, I want a colonoscopy,” and then they were telling me we’re going to have to wait because she is older. And I was just like, “Yeah, you’re right. I don’t want to make her get a colonoscopy now if she’s bleeding and then that could cause a whole other complication.” So they made her wait a month or two. And then when she finally got it, they just said hemorrhoids.

Amber Tresca (10:52):

Oh, okay.

CJ Papuro (10:53):

Yeah.

Amber Tresca (10:53):

All right. Well I hope it’s true.

CJ Papuro (10:54):

I hope it’s hemorrhoids, I hope it’s hemorrhoids.

Amber Tresca (10:54):

I hope that’s the end of it.

CJ Papuro (10:58):

Yeah.

Amber Tresca (10:59):

So tell me about this lapse in coverage that you had. You were leaving the military, is that because you had finished your time? Okay.

CJ Papuro (11:10):

Yes.

Amber Tresca (11:11):

And what’s the deal there? Why did that take so long for that to all get settled for you to be able to get coverage?

CJ Papuro (11:19):

Oh, man. The VA’s a nightmare.

Amber Tresca (11:24):

I knew that was going to be part of it, but it just seems to me does everybody go through that you have this lapse?

CJ Papuro (11:30):

Yes.

Amber Tresca (11:30):

Oh my gosh.

CJ Papuro (11:31):

Yes. Everybody who goes to the VA know it’s just a headache. Every day, just going through loops, talking on the phone, getting passed around and then waiting, a whole lot of waiting too. I feel like in total, when I put my packet in to when I finally got accepted, probably three months.

Amber Tresca (11:58):

Wow, that’s so wild. And it just so happened that you were getting really sick during that time.

CJ Papuro (12:02):

Yes.

Amber Tresca (12:02):

Yeah. So you were falling between the cracks there. At some point, you decided that you were going to start posting about your journey and being more open about your journey. Was there something that happened that made you start doing that?

CJ Papuro (12:18):

Yeah. So around 2018, possibly August timeframe, I transferred to a four year university called George Mason after I got my associate’s degree at Nova. During then, my symptoms were picking up. I did have sense of urgency a lot, was going to the bathroom a lot, but I was pushing through it. And then the whole new stress of going to a new school, figuring everything out, I’d parked off campus so I’d have to walk around 30 minutes to get to my classes. It was in the summer. I ended up catching two different infections. I caught a sinus infection and I caught bronchitis. And with both of those, I was still in class a little bit. I remember being in class with just this big pressure in my forehead, my sinus is just clogged up and I’m just like this trying to just study and pay attention. And then my UC starts to pick up, I’m getting sense of urgency, so I ended up going to the bathroom a few times in class. But after that day, I was like, “I can’t do this.”

Amber Tresca (13:37):

Yeah.

CJ Papuro (13:37):

I can’t focus on school, be in the bathroom because I’m just missing it. I don’t feel good. I ended up dropping out on the last day of tuition refunds. I spent a good time bedrest, from my bed to my bathroom. I went from 160, 150 to 120, barely eating, used the bathroom anywhere from 25 to 30 times a day, extreme fatigue, blood, mucus. It was just not a good time. My mental was down.

Amber Tresca (14:10):

Yeah.

CJ Papuro (14:11):

I basically isolated myself from everybody. Nobody really knew what was going on with me. They were just praying during the time. I remember when one day I was just tired of feeling the way I was feeling. I was just sad. I was alone. As a guy, I legit cried every day. It was pretty sad. And it came to the point where I was just like I need to tell everybody what’s going on because I feel like I had a big break from social media, I haven’t talked to nobody. The only people that knew what was going on was the people in household and the people who knew that I told that I was diagnosed. So then I decided to go on social media. I joined a couple support groups back in the day. Right when I was diagnosed, I joined ulcerative colitis support group, inflammatory bowel disease, Crohn’s disease, and I would just watch people just talk on there. They would talk so openly about their problems and it made me think, I was like, “If they could do it, I could do it too.”

CJ Papuro (15:17):

So when I was hurting, probably one of my lowest times, I was just like, ” I just need some support.” So then I just draft up a whole thing talking about what I was going through. And then I posted it on Instagram, Facebook and Snapchat and the amount of support I received on all three of those platforms, and I posted it on the support group, and the support I just received on all of them was just overwhelming positively. It made me feel good. It made me feel seen. It made me feel unalone. It jump started my advocating career, I’m not going to lie to you. It made me feel so good that I felt like I got a weight off my chest. I wasn’t hiding anything anymore. I wasn’t trying to hide anything. I was just being me at that point. So after I did that and everybody hit me up, even people, I didn’t know, random IBDers telling me about their stories and that’s how I connected with some people there. Yeah.

[MUSIC: IBD Transition]

Amber Tresca (16:35):

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Amber Tresca (17:36):

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[MUSIC: IBD Transition]

Amber Tresca

Do you have any advice for other men living with IBD, especially people who maybe aren’t so comfortable talking about things openly?

CJ Papuro (18:49):

Okay. So I’d say that every guy is different, but at the end of the day, we all go through things, we all have emotions and it’s okay to feel things. Guys from a very young age, we’re taught to not really express our emotions, to bottle it up and to not even worry about it, just keep pushing. And that’s not good because at the end of the day, all those things that you’re bottling up, they will resurface. And sometimes they’ll resurface in a negative way. One thing we could do to help guys become more open and maybe more vulnerable is hosting maybe guy only groups and making sure they’re actually filled and people talking and stuff, bringing other guys who are vulnerable into those groups so that they could talk so that they could show everybody that it’s okay. At the end of the day, we are all going through the same thing and the only way to get it off our chest is to talk about it.

Amber Tresca (19:57):

What do men need to understand about how IBD affects them differently?

CJ Papuro (20:02):

I’d say it’s tough. It’s tough. This disease will break you down physically and mentally, it’s broken me down couple times I’m not going to lie to you. This disease has had me feeling less than a man, had me questioning my future almost to the point where it was just like can I even be the man that I want to be because of this disease is bringing up all these difficulties? Will it allow me to live a normal life? Will it allow me to live a life where I could provide for a family, have a job, just a normal life? And that’s something that we all have to go through in our disease. But I know that as soon as we figure out our own disease in a part and how to manage it, we can get past those questions that we ask ourselves.

Amber Tresca (21:00):

Have you been dealing with any other health problems along with your ulcerative colitis?

CJ Papuro (21:04):

Yes, ma’am. I got diagnosed with rheumatoid arthritis in 2021 along with osteoarthritis maybe a month later or two.

Amber Tresca (21:13):

What was that process like? How did you know that something was off? And then how did you go about getting diagnosed?

CJ Papuro (21:20):

The thing with the rheumatoid arthritis, I guess that came from a hand injury. I think 2020 messed up my right hand. I have risen bone in my hand and then I had bone erosion in my wrist. All the VA did was told me to wrap it and ice it. I was in extreme pain.

Amber Tresca (21:44):

Yeah.

CJ Papuro (21:45):

My hand was inflamed.

Amber Tresca (21:47):

Yeah.

CJ Papuro (21:47):

And all they told me to do was ice it and wrap it. And then in a week, it would be okay. No.

Amber Tresca (21:52):

No.

CJ Papuro (21:54):

I was one handed for maybe a couple months.

Amber Tresca (21:59):

Oh my gosh.

CJ Papuro (21:59):

It was a really, really hard time for me, really hard time physically and mentally one, because I couldn’t do anything because I’m not left-handed, two, mentally because it was just really bringing me down that I couldn’t do anything. All I was doing was just sitting and wasting time. I just felt like a waste of space.

Amber Tresca (22:18):

Yeah.

CJ Papuro (22:19):

And then maybe six months later, they did a checkup and they saw that there was rheumatoid arthritis. But then not too long after, I remember my back started hurting, a sharp pain in my lower right back, constant pain, constant pain. First day, I was like, “All right, constant pain. Did I pull something working out? I don’t know. I haven’t really been working out. So I don’t know what’s going on.” The next day, okay, this is not cool. Two days in a row. Then the third day I was like, “No, I give myself a three day rule.” If I feel pain for three days, I automatically have to go to the doctor. So I told the doctor, they pulled me in for I think an x-ray and then they saw I had mild joint space narrowing, which is away in three spots in my spine.

Amber Tresca (23:12):

Oh my gosh. What did that feel like? That must be devastating.

CJ Papuro (23:17):

I’m not going to lie to you, it destroyed me. It destroyed me one, because I am a physical person.

Amber Tresca (23:23):

Yeah.

CJ Papuro (23:24):

Fitness is what I’m about. And me not being able to do anything with my hands and then now me having a degenerative disease in my spine meaning that it will get worse.

Amber Tresca (23:39):

Yeah.

CJ Papuro (23:39):

I just have to maintain it. That played a big part in my mental. I was depressed for a little bit. I had to figure out how to move around it, but I feel like it wasn’t until I started my new drug that the RA symptoms started to go down and OA pain started to go down as well. And I started to get back to normal.

Amber Tresca (24:06):

Did you know that ulcerative colitis can also be associated with all these other things? Or was that a surprise when you started experiencing these problems with your joints and your bones?

CJ Papuro (24:17):

No, I knew doing research for my ulcerative colitis. I would always experience joint pain. Even before my RA, my knuckles would become inflamed.

Amber Tresca (24:30):

Yeah.

CJ Papuro (24:31):

My knees would become inflamed, my feet would become inflamed after exercising, running, just using them. They’d just become inflamed.

Amber Tresca (24:39):

Did you Google it to see what you’d find?

CJ Papuro (24:43):

Yes. Don’t Google your symptoms, gents. Before RA, one thing that the doctors told me that they saw on the slide was they thought they saw something called complex regional pain syndrome which is another chronic pain disease in my wrist where it makes it so that the pain is equivalent or more to the original injury. And that messed me up mentally too.

Amber Tresca (25:20):

Yeah. Yeah. CJ, tell me about Color of Crohn’s and Chronic Illness and your relationship and about what they do in the IBD community.

CJ Papuro (25:28):

Yes. My relationship with Color of Crohn’s and Chronic Illness, or COCCI, started in 2020. We interviewed an ambassador for them and their lead ambassador then asked us to become ambassadors. And I joined right away because why not join an organization that is fighting for equity in IBD for people of color?

Amber Tresca (25:59):

And how has that impacted your journey?

CJ Papuro (26:01):

Man, Color of Crohn’s and Chronic Illness has been holding it down for me, I’m not going to lie. They have impacted my journey in such a positive way. I really don’t know where I would be right now if I had never joined the organization, I’ve met so many vibrant, wonderful people. I’ve heard so many amazing stories. They’ve given me so many wonderful opportunities as well working with pharmaceutical companies, research councils, patient councils, clinical trials as well. And then just participating in community events like COCCI Goes to College and speaking at a couple of colleges.

Amber Tresca (26:46):

And where can people find COCCI?

CJ Papuro (26:48):

They can find them on Facebook at Color of Crohn’s and Chronic Illness and on Instagram at Color of CCI and then at their website at cocci.org or C-O-C-C.org.

[MUSIC: IBD Transition]

Amber Tresca (27:25):

But CJ, do you have any funny or embarrassing stories about your life with IBD that you can share?

CJ Papuro (27:30):

Yes, I think I got one. It’s funny. This was I think around my first few infusions at the VA. So I think this is my first infusion, oh my gosh. So I’m in the infusion clinic and I’m waiting to get the IV put in. And next to me, there’s this older lady and I guess she has rolling veins.

Amber Tresca (28:00):

Yeah.

CJ Papuro (28:01):

So all I am hearing is them trying to stick her and they’re all like, “It’s not going in, her veins are rolling. And all I hear her is just moaning, I’m like, “Oh my God.” I’m just like, “Okay, all right, cool. I’m young so that’s not going to happen to me hopefully.” But then they put in the IV, I’m like, “All right, cool, bet.” I’m sitting there waiting because they have to wait maybe 30 minutes before they can actually give it to me or something like that. So I was waiting and then they finally started it and boom, my sense of urgency hits.

Amber Tresca (28:36):

Oh.

CJ Papuro (28:37):

I look at the nurse and I stand up, I was like, “I’ve got to go now.” I instantly got up. I just went boom, I’ve got to go now. And then she’s like, “No, no, no, sit down,” they’re trying to sit me down. But I got up and then I fell. I don’t know why, I’m woozy. So I’m over here holding onto the IV stick and I’m walking to the bathroom, they’re trying to take me down and I’m like, “No, I need to go to the bathroom.” And they’re trying to take me to the ground and they’re just like, “Just go on yourself.” I’m like, “The bathroom’s right there. I’m not going on myself.” So then they finally let me go. And I’m like, “Just let me use the bathroom.” They’re like, “Okay,” so they let me go. I made it to the bathroom, I ended up using it, but they literally tried to take me down to the floor so that I would go on myself and the bathroom is right there.

Amber Tresca (29:27):

What?

CJ Papuro (29:29):

Yes. Yes, just because I was woozy. I think I almost fainted down from how quick I got up.

Amber Tresca (29:37):

Yeah.

CJ Papuro (29:37):

But yeah, they was just trying to get me to the ground and worried that since I was woozy and lightheaded that I was going to pass out or something.

Amber Tresca (29:45):

Yeah, they didn’t want you to fall. They were like, “You’re not falling on my watch.”

CJ Papuro (29:49):

Yeah. But I just thought it was funny how I was just so determined hanging onto the thing just walking like this to the bathroom.

Amber Tresca (30:00):

You’re like, “No, I need to get there.” Oh my gosh.

CJ Papuro (30:04):

Yeah.

Amber Tresca (30:04):

CJ, thank you so much for sharing all of your journey with me, I really appreciate it, and for everything that you have been doing for the community, your voice is so impactful and so important. And I want everyone to be able to find you. So I wonder if we could go through some of your social media channels.

CJ Papuro (30:21):

Yes. Yes. So I am on Instagram @papuro, P-A-P-U-R-O. And I have quite several Instagrams if you’re into different kinds of content.

Amber Tresca (30:35):

Yeah.

CJ Papuro (30:36):

So I have a gaming Instagram which is @chill.ghost. And then I have a cannabis one which is @papurosmokes, P-A-P-U-R-O smokes. And then YouTube, if you guys are into YouTube, I have a YouTube, which is Papuro. I just cover cannabis content, IBD related content. And that’s pretty much it.

Amber Tresca (31:07):

Perfect. We’ll get all of that in the show notes so that everyone can follow you. And it’s been really great to see your content, to see how you approach all these different aspects of living with IBD. And so I appreciate your being in the community. I’m so glad that you’re finding it a space that is helpful to you as well as you navigate all of these difficult things in your journey. And so thank you for coming on about IBD and sharing everything with us.

CJ Papuro (31:37):

I appreciate you having me.

Amber Tresca (31:44):

Hey, super listener, thanks to CJ Papuro for sharing his story and for the work he’s doing in the IBD and the Color of Crohn’s and Chronic Illness communities. His point about being an example to others is so valid. The more we amplify one another’s voices, the further our message will reach. To that end, share this episode with someone you know who needs to hear it. Links to a written transcript, everyone’s social media handles and more information on the topics we discussed is in the show notes and on my episode 120 page on aboutibd.com. You can follow me, Amber Tresca, across all social media as About IBD. Thanks for listening. And remember until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio. 

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