A question for the Ulcerative Colitis Community

If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?

Answers from the Community

“The Journey of Getting Healthy” would be the book title, and the chapter I’m on is “Sometimes It’s a Slow Process.”

I think the title would be, “Living With Ulcerative Colitis.”And the chapter I’d be in would be, “The Raging Battle Continues.”

If my experience of my condition was a book, I think the title, while I don’t have something specific in mind, I think it would involve something about a journey and courage, but then also making some kind of pun, even something about the book that is out for children called “Everybody Poops.” I think something funny like that because I do use a lot of humor to describe what I’m going through and cope with it, I guess. My current chapter, I think, would be talking about this getting back to normal life after being in remission and what that looks like, because it’s a new normal, so I think that it’ll probably just be “New Normal.”

I think the book title would be, “Chasing My Cure” or “There is No Cure” or “The Cure is a Lie” or “The Cure Myth” or something like that. And I think the chapter that I’m currently on…Definitely the subsection would be “No Colon, Still Rolling,” but I think the true chapter title would be “Here We Go Again,” because I am, in a lot of ways, right back where I started six years ago, only with less bowel this time going through the exact same surgeries.

If my experience was a book, I would call it, “Where’s the Toilet?” And the current chapter that I’m in would be, “I Need a Colonoscopy Badly.”

This is such a great question. Oh man. I thought about this actually randomly. The name of my book would be “All the Things I Cannot Eat and All the Places I Have Gone.” Basically kind of detailing my life, right? All the things I cannot eat and all the places that I have used the restroom. I’ve used the restroom in a Saudi Arabian desert outside of an international airport. I have used the worst restroom, the most dirtiest restrooms, out of pure necessity. So I definitely, that would be the name of my book, “All the Things I Cannot Eat and All the Places I Have Gone.” As for the chapter that I’m currently on, it’s fear. I would say “A Time of Fear and Uncertainty” would be the name of that chapter. Because I’m pregnant right now, the flood of hormones have made it so that my condition is manageable right now, aka I’m not having diarrhea every day. It’s very common for people who are pregnant that they go into a temporary remission. But unfortunately, when you come out of pregnancy, postpartum times, a lot of people’s conditions flare up. And I anticipate that that’s what may happen to me. And so it’s a combination of knowing what will happen after I give birth, as well as how it will affect my son and his life because I can no longer just run to the bathroom. I really, I can’t. It won’t be a possibility. I have this little person that I’m in charge of. And so I’m definitely very fearful and uncertain about the future right now.

If I had to pick the title, I’d probably have something very generic, “Living with UC” or something. Where I am now, it would be, I guess, over the hump kind of. I’m in a pretty good place.

So I would probably say, I’m thinking the book title would be, “Let’s Talk About Some Sht.” I know that’s not super appropriate, but I think it would be beneficial to have a more positive spin on it. And then I guess the chapter now would be “How Not to Die”, or something to that extent, like living in a shtty situation or something that’s probably vulgar, and not super polite because I think at the end of the day, I think all of this is a weird experience, to say the least with a lot of medication and a lot of colonoscopies, and a lot of weird things that are pretty much taboo in U.S. society. So I think playing off that theme would really be beneficial, and to include a positive component where it’s like, yes, this is what it is, and I’m not taking from anybody’s experiences. And I don’t want to try and silver line anything, but at the same point, I personally have to find the humor in these experiences, because it’s an awful disease. It’s a ridiculous disease, but it’s not going to eventually… I mean, it may eventually kill me, but currently I’m not dead. So just being a little bit more positive and bringing some kind of humor into it so that it’s people who know it’s not the end of the world, and it doesn’t have to be the end of the world if you don’t want it to be. So I think, as vulgar as that is, I think that’s probably what I would say as the chapter, “Living Through Some Sh*t” or something to that extent.

Right now the title of my book would be “In Search of Remission,” and the chapter title would be “Limbo,” because I’m not in my worst stage of the flare. I’m on Humira, and I am feeling a little bit better, but not enough to go do normal life, so I’m just in limbo seeing which way it will go, if I’m going to get worse or if I’m going to get back to normal.

I think the title of the book would be “Wait, That’s Not Normal,” just mostly because at the time that I started having symptoms, I didn’t know that that wasn’t normal. And it wasn’t until I got some very confused looks from my doctor at that first doctor’s visit that I quickly realized that the symptoms I was experiencing were really not normal at all. And I would say the chapter I’m currently in would be called, “Oh, Wait, That’s Also Not Normal,” because I’m currently dealing with being diagnosed with endometriosis. And, again, I also didn’t really realize that the symptoms I was having weren’t normal, and I’m starting to realize that they’re not. So that’s probably what I would title it.

It’s a complicated question. The title of the book would be “The Unexpected Disastrous Gift,” and the chapter that I’m currently experiencing right now would be maybe … I don’t know. “Living with the Aftermath,” maybe, because things aren’t quite as intense as they were in the beginning, but it’s an ongoing thing to deal with so.

“The Long Journey” would be the title of the book, because even before I started going to the doctor, I know I definitely had ulcerative colitis, I was just embarrassed to go. This has been going on probably since I was in my early 20s and I’m 35 now. I was diagnosed only five years ago. The chapter that I’m in right now. This took a lot of thought and I still don’t know. I might say “Uncertainty.” My last colonoscopy, I didn’t have any signs of ulcerative colitis and that was back in May. Now I’ve gone to the bathroom already four times today, undigested food, there’s mucus. So I think I’m starting a flare. The chapter is “Uncertainty” because I don’t know what’s going to happen. I don’t know if I’m going to get a lot worse again or if I’m going to start feeling better and this is just my body detoxing from gluten and things like that or is that not what it is? So it’s the uncertainty.

I think the title of my book would be “You See Me Rolling with the Punches.” So that’s actually part of my team for our take steps with the Crohn’s and Colitis foundation walk. ‘If you see me rolling,’ but then add in ‘with the punches,’ because all about this journey is that you can’t predict how long it’s going to work for you, you can’t predict day to day how you’re going to feel, and how if your disease is going to be active, or if it’s not going to be active, who you’re going to be around if people are going to notice. And I would say that the type I’m currently in is hopefully one of the earlier chapters. I think the scariest thing with ulcerative colitis is there’s kind of this overhanging, especially with disability that I have, this overhanging idea that I’m eventually going to get colon cancer, and that colon cancer, if not detected very early on, can be completely fatal. And I just… I think that’s one thing that I kind of struggle with and I want to live a long life and it’s hard to imagine what that looks like when I’m, one, fighting this disease that I’m going to have forever, two, I’m taking a medication that I’m pretty sure, we don’t know how long people can be on this kind of medication and if it will come, you become unresponsive to the medication. You know what other options are there. So I’m hoping that I’m at still the early chapters of my journey and that hopefully towards the middle and the end of this journey, we find a cure and I can be able to live a life where I don’t have to have these questions in my head of if I have to go to the bathroom, is there going to be one close enough? If I’m in the middle of a meeting and they’re going to have to stop the meeting and get up and use the restroom. Those are things that have actually happened. And I’d love to get a quote in this book, where I can talk about the millions questions that I have in my mind or feelings and anxieties that I have, that the rest of my book can be about what I’ve learned from my ulcerative colitis journey and how my life is so much better than when I had my disease and up to get to that point, about whether or not that actually happens, is to be determined.

The title of my book would probably be “Climbing Your Way Up Through The Darkness.” And the chapter that I would currently be in would be “Managing Your Health in Stressful World Times.”

The title of my book would probably be called “A Sh*tty Situation” and the current chapter would be “A New Day.”

I would say “The Tough Journey” because it’s a very difficult and challenging journey. It’s not just something you take a pill for and it’s cured. It’s a whole journey from finding the medication that works to adjusting treatment options to recovery from surgery. And the chapter I’m currently in is “There’s Hope at the End of the Long Dark Tunnel.”