Connected by Ulcerative Colitis

Erika Hillenmayer: A lot of times, we look fine. We don’t look sick. On some days, we can do everything. And then, on other days, we can’t. We can also hide it very well sometimes.

Everyone is very different when it comes to ulcerative colitis. I know my symptoms can come for months at a time, whereas other people sometimes have a bad day. So, not everyone can understand that.

Also, there’s not a one-size-fits-all when it comes to healing. I know some people would ask, ”Have you tried? Have you tried? Have you tried?” It’s like, ”Yes, yes, yes. I’ve tried everything.” I’ve done everything, and what worked for one person didn’t work for me, and what healed me didn’t heal someone else.

Rasheed Clarke: I wish people understood the severity of ulcerative colitis. I think if people have an idea about the disease at all, it’s that it’s very bathroom-centric. It just means that you go to the bathroom more often than a normal person would, but otherwise, life is pretty much as it is.

But it’s been so much more than that for me, especially because I had pancolitis, so the entire colon was impacted. Those bathroom trips, yes, they’re kind of a hallmark of the disease, but they really get in the way of everything. It’s hard to live a normal life or even a joyful life when you’re constantly worried about that.

I had to have my colon removed as a result of the disease. I don’t think people really make that jump from hearing about the regular symptoms to the idea that you might have to actually have a big part of your digestive system removed. You’re going to have to possibly have multiple surgeries and live with an ostomy, as I did for a little while.

CJ Papuro: One thing I wish people understood about ulcerative colitis is that it is an invisible illness. On the outside, we may appear normal, but on the inside, we could be hurt or experiencing extreme symptoms.

Clarke: I think sometimes other people may get the impression that you’re overreacting to the challenges that you have and that you may not necessarily be deserving of the accommodations you’re asking for. So, I think the biggest challenge is laying out what is required in terms of, say, working from home or taking a pass on social situations.

A lot of times when I have made those requests, I’ve been confronted with thoughts that maybe you’re making too much of it. Why not just come to this event? Can’t you just work from the office and take breaks as you need?

Because we’ve gone through the COVID-19 pandemic, working from home has been more normalized. But I remember when I made some of those requests at work pre-pandemic, I got the sense that management was thinking I was trying to make a plum situation for myself.

So, again, the biggest challenge has been really laying out the fact that accommodations are necessary for me to be at my best.

Papuro: I’d say it’s getting over that initial anxiety. Once you feel a symptom, or that initial anxiety hits you, and you’re just like, all right, what have I got to do?

You might be in the middle of something, or you might not be doing anything, but at that specific moment, you’re trying to formulate a plan in your head so that it doesn’t go left.

Let’s say you get a sense of urgency, and you only have a little bit of time to get to the bathroom. So, you’re looking around to see where the bathroom’s at and stuff like that.

Hillenmayer: To a boss or to a manager or to anyone, you look fine. So, what do you mean you’re not feeling good? They also didn’t understand when I wound up in the hospital and needed 5 weeks off.

No one could get me better. So, there wasn’t anything I could do about that. And it wasn’t my doing. It wasn’t that I was trying to make myself sick. I don’t think there was enough knowledge back then of how it could affect you and your job.

I was a dance teacher, so it was really physically hard sometimes. I would always be in the classroom, and sometimes I had to run. And it’s that fast. I don’t know if everyone realizes how fast you have to react.

If I have a leak, I need you to understand that, yes, I can fix it very fast. I can clean it up, I can fix it, but sometimes I need a few minutes. I think there has to be more knowledge. But at the same time, I had to be more willing to communicate everything that I needed.

I really wish there were garbage pails in every stall everywhere. I feel like that might make someone like myself feel better having an ostomy. But also even when I was sick, if I had to clean myself up, you don’t want to walk out of the public stall with anything. That to me is a major thing.

Papuro: Ulcerative colitis impacted my body image by pretty much stripping my body away from me. Before UC, I was going down the road of bodybuilding. I was around 160 pounds (Ib) before symptoms took a turn for the worst. And then I ended up dropping all the way down to under 120 lb.

In the span of 3 months, I didn’t recognize myself. I had horrible body dysmorphia, and I didn’t like looking at myself in the mirror until I started to work on myself more and just be more empathetic with myself.

Clarke: I’ve never really had a great body image, even before UC. But I think because of the condition, I’ve had so many fluctuations in appearance, in part because of weight loss and weight gain. Medications like prednisone caused my face to get pretty swollen, sort of like a moon face.

I’ve had so many changes in my appearance that I think it’s changed my mindset. I understand that the way I may see myself right now is not necessarily the way that I’m going to see myself forever, or maybe not even for the next few months or few weeks.

I think that being aware of that fluidity has been quite positive for me. I’m aware that positive changes can happen and that sometimes they’re a little bit outside of my control, and sometimes they’re within my control.

Hillenmayer: My body image while sick was fine except for when I had to be on steroids. Obviously, we all know you get the puffy cheeks. We used to joke around because a lot of times I was on steroids around Christmas for some reason, and it was like “Alvin and the Chipmunks.” And for me, especially being a dancer, it wasn’t always fun because it didn’t even look right.

Now, having an ostomy and being healed, I think I was thin for so long, sick. My mental health afterward got a little affected. Sometimes, you’re thin having ulcerative colitis. Once I got healthy, I wasn’t thin anymore, and that threw me.

The whole thing is a mental trip. When people would say, “Oh, you look healthy,” I always knew that meant I put on weight and it was because I was healthy. I was at a normal weight, a healthy weight. I wasn’t underweight anymore. So, it can play a little bit with your mind.

Hillenmayer: I need to feel safe. I have to trust you that if I break a plan, it’s just because I’m not feeling good that day, and I can’t do it. So, feeling safe, feeling loved.

Also, there’s no magic pill. You can’t tell me all the things you’ve read and heard and know because there’s no magic pill that works for everybody.

So, I would say those are the two things. Allow me to just be me.

Papuro: I’d say be an advocate. Look after your fellow IBDers and help out whenever you can. Advocate for yourself, other people, and those around you, even if it’s just educating.

Even if you don’t know it, you can educate yourself and then educate those around you. And that would help build awareness. Also, that just helps build a bigger community. Because through that, that’s how I had people reaching out to me — just by sharing my experiences.

Clarke: It’s a really helpful thing for people just to acknowledge the difficulty that someone is going through. I know it’s kind of human nature to immediately jump to fixes: “How do I make this better? How do I make this go away?”

But just having someone say, “I’m sorry that you’re going through a really difficult time, and that really sucks.” I think that’s really helpful. It just lets people know that what you’re going through is not so hidden, it’s not so masked, it’s understood.

Papuro: I have different levels, depending on the severity. If it’s really bad, I’ll just call it a day. Bed rest, try and rest as much as I can.

In terms of pain, I’ll use supplements like balms, ointments, and CBD, or sometimes I’ll even do cannabis if it’s too much. And then when it’s alright, I like to get massages and stuff like that to help relax my body.

Hillenmayer: For me now, and this has nothing to do with ostomy or ulcerative colitis, I just finally at age 40 have come around to knowing that yoga and meditation are key. I’ve only been doing it seriously for a year, and it’s changed how I feel.

I also take a bath. I make sure that I soak. It can be a plain hot water bath or maybe I’ll put some salt and baking soda and make it a detox bath. But I just soak, I meditate, I try to breathe, which was really hard for me.

And I still escape every once in a while and just have to curl up in a ball and let myself have a pity party for 5 minutes or whatever.

I definitely try to breathe and take a bath, and if I can move my body in some way, I think that’s the best thing.

Clarke: I think depending on the level of the challenge, if my body’s upward, I would say going for a walk is a big benefit. Exercise always quite often helps put me in a better state of mind if I’m having a rough day. If I can’t do anything too active, like running or going to the gym, just going for a walk is a big boost to my mental and physical health.

Depending on the severity of the day, I like to treat myself to a fun drink, whether it’s a smoothie, just a nice latte, or something like that. Not in the alcoholic fun drink category. Just something about having a smoothie makes you feel like you’re doing something good for yourself somehow.

Clarke: Not to sound too full of myself, but I would say the main one is myself. That’s because, from the beginning, when I started showing symptoms, I dove into the internet rabbit holes of learning about the disease and sometimes scared myself more than I really should have.

But just learning about ulcerative colitis, possible treatment options, and what the disease could look like over time really prepared me for the doctor visits. It helped prepare me for talking to specialists and nurses so that I could have more meaningful conversations with them.

And it’s that desire to learn and be well read, to be at least pretty knowledgeable about the disease. I think that’s really carried through to how I approach medical appointments even now.

Aside from myself, my girlfriend. She always checks in to see how I’m doing and to see if there’s anything she can do to help. And I always appreciate that.

Hillenmayer: My gastroenterologist was absolutely amazing. He literally was a huge medical advocate.

Besides that, my family is amazing. My mom and my sister were doing everything and making sure that I got the help that I needed.

Once, I was having a bad day. I’d just had surgery 5 weeks prior. I was crying in the bathroom. My sister came into the room and said, “Hey, this sucks, but here’s what you do. You get 5 minutes of a pity party, and then you get on with it. Every day, if you need to cry it out, have that pity party, and get on with your day.”

I think you need to surround yourself with a really big support system. It’s so hard to do this alone. You really need someone or a bunch of people in your corner. So, I was fortunate to have all of it.

Papuro: You got to be your own biggest advocate. That’s one thing I’ve learned.

My godmother told me when I first got diagnosed that you have to take care of yourself. Nobody else is going to do it for you.

So, whatever you need to do to learn about your body, learn about your disease, do it, and then go from there.

Hillenmayer: I think it’s like every other disease or health issue: Everyone just needs kindness and love. I just wish every month was an awareness month and every day was an awareness day.

If we would all just understand that we’re all going through something, and maybe we could all help each other. It doesn’t matter what disease or what sickness. If we just had more love, I think everything would be helped.

Also, panic and anxiety can come from ulcerative colitis. This is normal.

Clarke: I think that as hard as it is for people living with a disease to maintain hope or optimism for things getting better, it’s really important to try to hold onto that as much as possible. It’s helpful to be aware that there are more treatment options available for the disease than there ever have been. And that’s something to be grateful for.

Papuro: Your life is not over when you get diagnosed with IBD. It might take others longer to figure out what they need to do to get to a point where they can function and live a normal life without experiencing symptoms throughout the whole day. Prioritize self-care. You can’t help take care of others around you if you’re not taking care of yourself.