I Was Young to Be Diagnosed | Question-a-Day May | Let's Talk IBD

Added: 2026-05-12

[00:00:00]Hey guys, it's question a day May where every day May I'm going to be answering a new question. I'm Maggie. I have Crohn's disease. I live with a permanent ostomy. I'm a wife. I'm a mom and I'm going to be answering anything and everything. So, it is May 12th. It's quite early in the morning. I'm the only one awake. You can probably tell by my lovely hairstyle and my makeup from last night. Um today we're going to be answering the question of what age was I diagnosed with Crohn's disease? I thought I'd give a little bit more background to the story of how it kind of happened cuz it took a really long time.

[00:00:31]>> [laughter] >> I was 11 when I was diagnosed, but my symptoms definitely started like 4 years prior. I was maybe I want to say like second grade, maybe around 7 or 8 years old when I started having trouble in the bathroom. And it was more so like constipation. I was having a lot of trouble going to the bathroom to where, you know, I'd be I'd be crying in there cuz I was in pain.

[00:00:57]Um and I don't think that we put lot of stock into that like she just needs to drink more water, you know, she's she's a little dehydrated.

[00:01:06]She's yeah.

[00:01:08]Um but my symptoms started to increase slowly.

[00:01:12]And I think at first we didn't really notice that there was a problem until they really picked up and it started to show on my growth charts. I was very average size. I was about midway between, you know, my shorter friends and my taller friends. I was like the halfway point.

[00:01:33]Um I looked like any other healthy kid.

[00:01:37]But then I started getting abdominal pain and I didn't want to eat as much and my dad was really struggling to get me eat and I know he was so stressed about it. Um and then I started falling off on the growth charts. My dad would bring it up every appointment to my pediatrician and it was always, you know, have her drink more milk. She needs to eat more.

[00:01:57]And of course that didn't do anything.

[00:02:00]And then I started having blood in my stool. And that obviously set off the alarm bells. So my pediatrician actually my mom at the time she she was a nurse. Um and she said I think she has dumping syndrome. Which is actually a completely different disorder. That it is a real thing but it is not related to Crohn's disease necessarily.

[00:02:23]Um but she was referring to Crohn's disease. She just didn't know the name of it. Like she knew the name but she would just call it dumping syndrome cuz more so the fact that a lot of Crohn's people do spend a bit of time in the bathroom.

[00:02:37]>> [laughter] >> Um but dumping syndrome is actually when your stomach like it dumps all the food out too quickly and it's like a hypoglycemic thing going on. Anyways, so she kind of called what it was. I we knew we know now that she meant Crohn's disease or like an IBD.

[00:02:54]Um but she had brought that up many times when I was having all this trouble in the bathroom. Um so my pediatrician finally said okay I think we need to refer her to a pediatric GI to get more testing because I think she might have Crohn's. And this was the first time we heard the word Crohn's disease. And I know that my dad he didn't know exactly all that Crohn's entailed but he had known somebody growing up that he went to school with who had Crohn's disease was out of school for many many months.

[00:03:26]Um and I guess he had found out later that he got a colectomy and wound up with an ostomy. So that was my dad's only experience with Crohn's. And my mom had not worked in that field. She did a lot of I think she was hospice. I think she was home care.

[00:03:41]I think she did stuff like that. I think it was more home care that she did.

[00:03:44]Um so that was like the experience. It was pretty limited. And if you know the story about my mom, she was involved at times with the disease care, but all couldn't always be. Uh my dad was he had me. Like I lived with my dad. Um okay, so then got to the pediatric GI and I had I remember I had no idea what any of this was. I just knew I didn't really feel too great. Uh and I remember that first appointment with the GI and her saying I need to have all these tests done and I need to be put under sedation and it scared the heck out of me.

[00:04:25]I was terrified and that was kind of the beginning of all of it.

[00:04:32]So I wound up getting a colonoscopy, an endoscopy, a barium swallow.

[00:04:40]Trying to think what else. Lots of blood work, of course. And on the scopes is where they really found, you know, oh yeah, she's got Crohn's. I had it from my throat, basically, you know, all the way through. It I was covered in it. My stomach, my small intestine, they were just it was so inflamed.

[00:04:58]So of course, that's why I didn't want to eat, had all this belly pain.

[00:05:01]Lots of blood in my stool. It's terrible. So started me on mercaptopurine and that was kind of the takeoff of my Crohn's um journey, I don't know. The and the mercaptopurine just did not work for me.

[00:05:17]She was a terrible GI.

[00:05:18]>> [laughter] >> I mentioned in a previous question a day video. Um but yeah, it it ultimately led to me getting an ostomy cuz things just got so bad.

[00:05:28]But that's how I was diagnosed. It took 4 years of just going to the pediatrician saying, "There seems to be something wrong." And it just slowly building up over time and then finally I got the diagnosis. Um it is a young age to be diagnosed. There are two other people in my family that have IBD. My mom mom, mom's mom, uh had ulcerative colitis, but she was diagnosed many years later in life and they thought it was medication induced. I don't know what medication she was on, but that's what I had always heard. And then my mom's cousin was diagnosed with Crohn's disease at the age of 30 or somewhere around that point and I don't believe I I don't know her like I don't speak to her I you know, not in a negative way, but I just I don't have a relationship with her.

[00:06:19]I don't know how her Crohn's is. I got the vibe that it wasn't quite like mine.

[00:06:24]Like I don't know if she's had a lot of surgery. Um I was definitely like a young age to get diagnosed, but I wound up working at the hospital that I was treated at and had all my surgeries at.

[00:06:37]And there were very young babies that were diagnosed with Crohn's and it's very early onset IBD VEOIBD.

[00:06:47]And it's awful and those cases, from what I saw, were definitely so severe so quickly.

[00:06:53]Um but yeah, it just that's that was my story of diagnosis.

[00:06:59]11 was my official diagnosis once we got me in for the scopes.

[00:07:03]And >> [laughter] >> I just think about poor little Maggie just no experience. I was a healthy kid.

[00:07:10]I had asthma. Like but, you know, I was okay. Nebulizer every now and then and then an inhaler, which was nothing to me. Um I had no experience with the medical world and it was so scary. The the needles and the the enemas, that was the worst part, honestly. I would have taken a needle or shot or anything like that over all of the enemas because my my rectum was always the really diseased part. I remember my mom doing my very first enema for my scope and it was just the most traumatic thing.

[00:07:43]We're in the bathroom of the hospital.

[00:07:46]And it was awful.

[00:07:50]So anyways, here we are years later. Got rid of that so I I don't have to do enemas anymore.

[00:07:55]Got that out of the way.

[00:07:56]>> [laughter] >> Um that's my story. That's how I was diagnosed and what age I was diagnosed at.