Remission Realities: Managing Ulcerative Colitis Blues
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[00:00:00] so I just recorded that last episode about managing expectations with ulcerative colitis, and I forgot to share the story that inspired this whole episode. So now you're getting a bonus episode because I didn't feel like taking that one down and editing the story in and then republishing.
That's ridiculous. So welcome to a bonus episode of What The Poop.
Welcome to What The Poop, the podcast where we flush out the realities of living with ulcerative colitis. I'm your host Terry Holland, and after more than three decades of navigating the ups and downs of ulcerative colitis, I'm here to share my experiences. Insights and a little bit of humor to help you through your journey.
In this podcast, we are dishing the scoop on what it really means to live with ulcerative colitis. We'll share stories, tips, and the latest info to help you navigate your journey, whether you're newly diagnosed. Or you've been battling uc for years. This is your space to find community, laugh at the absurdities, and learn [00:01:00] from others who get it.
No topic is off limits, and no question is too awkward. So if you're ready to break the silence and take control over your ulcerative colitis, join me on what the poop, because living with uc doesn't have to be a solo journey.
I am in clinical remission, and I have been in remission now for a while, a year and a half, maybe two years now. It's hard to say, but there were some blips along the way, and last spring I had. Such an amazing conversation with my incredible gastroenterologist who I am very, very grateful to have.
And if you don't have a good gastroenterologist, I'm telling you it makes a world of difference. If you can find another one, by all means do it. This doctor has been a game changer in my life, and I'll talk more about him in later episodes, but something he said to me last spring, change my perspective entirely.
I was having a little [00:02:00] blip. Not quite a flareup. It felt like the start of a flareup. And I went into full blown panic mode thinking, oh my God, the biologics aren't working anymore. The Entyvio is failing. I'm gonna have to start another biologic medication. And for those of you on biologics, I, I don't know if this is.
Everywhere, but here in Canada, before they will approve funding for another biologic, you have to do a round of prednisone in between. Because the prednisone makes the biologics more effective because it will get the disease back down. , It lowers the inflammation very quickly, and then the biologic can do its job.
Reminder, I am not a doctor. I'm not a pharmaceutical person. Pharmacologist I pharmacist, oh my God. What? What are the words? What are words today? So anyway, so I'm speaking in human terms. These might not be accurate medical explanations. Alright, that aside, so. I was dreading having to go on [00:03:00] another round of prednisone, and I was thinking the worst that I'm gonna have to start all over at the very beginning.
And so I emailed my doctor's office and he has this great system where you can email, he has a nurse who responds and she relays the information to him and then they will do whatever's necessary next. So he scheduled a call with me for just a few days later, I think, I think it was maybe two days, two, three days after I had.
Sent the original email. And so we got on this call, I explained to him what was happening, how quickly my symptoms came on. Here's where it's gonna get a little TMI, but that's what we do here. We talk about everything on this show. I was bleeding a lot and I explained this to him. He said, well, blood doesn't necessarily mean a flare up.
And I was like, yeah, but it's also not normal. To bleed, right? So he said, let's investigate. I'm going to send forward some blood work I want you to do and I'd like you to take a stool sample. So I went to the [00:04:00] lab, I did my blood work, I picked up the stool sample kit. I always have to psych myself up to take these samples and you gotta get the timing right because if you take it, but you can't take it back to the lab right away, that's a problem.
It can spoil the sample. Or if, you know, you can refrigerate it, but it can still, I dunno, there's timing involved. And let's be honest, none of us wanna have to take more than one sample ever. So I always try to get it right and I need to psych myself up to do this horrific job. So. Days went by. I hadn't done the sample yet, but my blood work came back and my symptoms started to subside.
My blood work came back and everything looked normal. All the inflammation markers were good. Everything's looking good. The blood work looks like a healthy, normal person. So I thought, well, he's probably not gonna see anything in the stool sample and the symptoms are already calming back down. It's probably nothing.
So I did not take the sample. Then I had my [00:05:00] follow-up call with him. This was about two weeks after the original phone call. We had the follow-up call. He figured all the blood work, everything would be back by then. And he said, okay, Terry, I'm looking at your blood work. It looks good. How are you feeling?
And I said. I am actually feeling fine now 'cause by this point I felt totally normal. Everything was back to normal and he said, you're fine. I said, I'm fine. And he said, okay, that's great news. I don't see your stool sample. Did you do a sample? I said, no, I didn't get to it. And then I already started feeling better and I saw my blood work.
I saw it was normal, so I thought nothing's gonna show up there. Either. And he said, okay, so this is a good thing. You're feeling better. That's the important thing. And I said, yeah, but I think I'm crazy now because did I just overreact? Like I saw a lot of blood. It was there. I was bleeding for days and then just gone, how is that possible?[00:06:00]
And he said, okay, Terry. He said, if you were a normal, healthy person. You had those symptoms, you'd probably waited out for a week or so before going to your GP and saying that something was wrong. And I said, well, to be honest, if I was a normal, healthy person and I saw that much blood in the toilet, I would probably go to emergency.
And he said, okay, fair enough. But let's say you did that. You went to emergency saying that you're bleeding from your rectum. They would run some tests there, they'd run some blood work, they'd take a stool sample, they'd send you home. And he said, and then you would wait for a follow up for referral to someone like me who would probably take about six months or so to see you because I wouldn't be in their system yet.
And he said by that point, you'd be totally fine. We would maybe do a colonoscopy to check and we would see there's nothing wrong and you'd go about your life. And I said, okay, this isn't helping. I still feel like I'm crazy [00:07:00] then for thinking something was wrong and he said no. The difference is though, is you are not a normal, healthy person.
You have ulcerative colitis and so you did exactly what you're supposed to do. You saw what could have been the start of a flare up. You emailed the office. We got on top of it, we ran tests. It was already, whatever it was, was already gone before. The blood work came back or before the blood work was done, he's like, likely this was just a gastrointestinal virus or a bacteria.
This was some kind of infection, most likely that cleared itself up and you're fine. And I said, yeah, but does an infection make you bleed like that? He said, well. They can, but you have to remember, you don't have a normal colon. Your colon has a lot of scar tissue. It's prone to inflammation. So it might have gotten a little inflamed, a little irritated.
You had some bleeding, now you're okay. And that's what matters. And I said, so next time, should I [00:08:00] just wait a bit and kind of see? And he said, no, absolutely not. Next time you're gonna do exactly what you did. You'll email the office so that we're on top of it right away, just in case. And he totally put my mind at ease and I no longer felt like I was crazy.
And then he said, we need to be realistic with expectations because even though you are in remission. You are still going to have little blips. You're still gonna get some cramping, some abdominal issues, upset stomachs, things like that. Because he said You have had this disease for a long time. Your colon isn't going to function the way a normal healthy person's colon functions.
And that's what put my mind at ease. I mean, not only did I no longer feel like I was this crazy, overreacting person, but I also felt like now I knew what to expect, [00:09:00] that I will still get cramping. I will still get an upset stomach once in a while,
nowhere near the same level as a flare up, but it's going to happen. And to know that that is part of remission and that it's okay.
For any of you listening, I hope this also gives you some peace of mind of what to expect with this disease.
And also what to expect in remission because it's not going to be perfect every day. All right. Thanks for joining me today. Hope you enjoyed this little bonus edition of What the Poop, and I'll be back with you soon. No promises because I'm terrible at being consistent with this show. But I will, I will work on getting better.
But until next time, , take care of your gut. Bye for now.
