Ileoscopy + Scope Results... We're Still Trying to Figure Out What's Wrong | Let's Talk IBD

[00:00:10][panting] >> Good morning, guys. It's Maggie. I do have Nova here on the floor walking around. We are back today this morning because What's Mommy having done today?

[00:00:24]I'm having pictures taken of my tummy.

[00:00:28]Right? Just to see that everything's healthy and that Mommy is is doing good.

[00:00:33]So, that's what we're doing today. I have my scope at 1:00 this afternoon.

[00:00:38]It's 11:10. So, we have to leave like a little bit before noon. I know.

[00:00:43]Okay, how about I get you your milk so we are all good [laughter] and not not mad at Mommy for standing here holding the cup that should have milk in it. I know you see the cup. We've been using these uh these gross Me Me cups. They're actually pretty good. Let me fill it up. I'm doing it as fast as I can, okay? Here we go.

[00:01:03]Okay? Got it?

[00:01:05]All better?

[00:01:06]Okay, so yes, scope this afternoon. I'm getting all the stuff together for Novi because Zach, my husband, and Nova, my daughter, are coming along with. I know, super fun.

[00:01:18]Little party at the uh the hospital here. So, I'm just getting a lot of Nova stuff ready just so Zach is set with her and good to go. I usually bring this little bag here and put snacks and some milk and some water and toys and whatnot. Extra outfit just in case. Um yeah, so we've also been using these bottles, the NUK bottles. I don't know if I like them. What do you think? I had to cut the straw just to get it to flow for her.

[00:01:48]So, I'll fill this up with You want a little bit of apple juice? Little bit of apple juice and water? Yeah, we'll do that. We'll do that before we leave. So, let me set that there and then the other thing, my snack cups. These things are great if you have Do you want one now?

[00:02:07]These are great for toddlers to put their hands in. I'll link some of this stuff in my description. You want one?

[00:02:14]Yeah, they're pretty good. I know, Mommy wishes she could eat some of this cuz I'm starving.

[00:02:19]I am a little bit shaky. I wound up if you saw the previous vlog to this one I I ended it this morning because it was my prep for scope vlog where I took the Miralax and I've been monitoring my ostomy output to make sure it's clear enough for the scope. We're there. It's clear enough. It's like a neon yellowy green.

[00:02:39]I know, you really wanted to know that.

[00:02:41]Um but that's where I'm at with my ostomy output, so I think I'm all good.

[00:02:45]At this point, I cannot eat or drink anything else because they said 2 hours prior to the procedure, stop drinking. So, that's what we've done.

[00:02:54]Um I I did lose a lot of ostomy output this morning. I emptied probably I don't know, seven or eight times, so I I feel a little icky and I'm just really looking forward to getting [snorts] this done and being able to eat again. Of course, hoping that everything is clear.

[00:03:11]Ugh, [sighs] please please just be good.

[00:03:14]I mean, sometimes when you have symptoms, you kind of want something to show up, but in my case, I don't think my symptoms are related to Crohn's.

[00:03:22]Um so, let's not have Crohn's on top of it, you know, I don't want any inflammation being seen today. Okay, so we got to gather some toys. Who do you want to bring? You want to bring Nemo and Dory? That's been her favorite toy set recently. She really likes them.

[00:03:37]It's couple of bath toys, but whatevs. I've also got some pouchies for her. She loves this butternut squash pouch and then she's been starting to like applesauce, so getting all this. Oh, and your squishy.

[00:03:51]Look, Mommy has your squishy. This is great.

[00:03:55]In the car at night, look at this. Ooh.

[00:03:58]And you can brighten it and turn it off by squishing it. She really likes that.

[00:04:02]I don't know, I'm just trying to think of anything and everything. It actually looks like it's going to rain today. I'm hoping it holds off so Zack and Nova can walk around outside of the hospital. I keep saying hospital, it's not really a hospital. It's where I got my IV fluids.

[00:04:18]They have a whole clinic for that.

[00:04:20]There's many, many doctors' offices. Um they do day procedures, but there's no overnight care. So, it's sort of a hospital. It's pretty large, but it's just for daytime stuff. Um I don't know how you would describe that. A clinic, maybe.

[00:04:36]But, I'm hoping the rain holds off so they can walk.

[00:04:40]Being outside is the best thing for her when she's bored, so keep our fingers crossed. But, I'm going to keep getting ready, right? We got to get you dressed. We need to get Oh, >> Can I steal my backpack?

[00:04:51]>> Mommy's asking me supplies are in there, just in case. I do have extra bags in here, too.

[00:04:56]Just in case, cuz you never know.

[00:04:58]They're putting the scope through the the stoma. Yeah.

[00:05:04]They don't actually have to remove my whole system, which is cool. They just unclip the bag, put the scope through, and then they'll put the bag on when they're done. Um but I have extras just in case. Okay.

[00:05:15]Let me keep getting ready. We're on our way now, and we already had an adventure.

[00:05:21]Novie just threw up a lot.

[00:05:25]So, yeah. I don't know what's going on with that. We're going to have to clean out the car seat and change her outfit once we get there. I cleaned her up as much as I could while we're still going, cuz we don't want to be late, but at the same time, we don't want her sitting in that, so cleaned it off her skin as best I could. Oh my gosh.

[00:05:45]>> She's not having a good day.

[00:05:46]>> She's not having a good day. Um we're okay though. We're we're still heading on our way.

[00:05:53]I checked Leroy one last time. Just like I feel like the color changed back a little bit, but I don't think it'll be a problem. They'll be able to I think irrigate a little bit if they feel like the the camera quality is not good enough. I don't know. You know what I'm trying to say. I'm just a little like oh, she threw up.

[00:06:15]Now it's Now I got to think about that and take care of that before we walk in. It'll be fine. I just I hope that was it. I hope she doesn't I'm now I'm worried.

[00:06:27]>> It's okay.

[00:06:28]>> I know.

[00:06:28]>> Again, it could have been she drank her milk too fast.

[00:06:31]>> I know.

[00:06:31]>> When I drink my milk too quick, it gives me an upset stomach as well.

[00:06:34]>> I know. She was just she fell asleep and then she woke up and kind of And then I looked back at her and she started puking. So uh I hope she's okay while I'm out and I can't help.

[00:06:48]>> I'm here. I'll help.

[00:06:49]>> I know. I just if she's like that's a lot to handle.

[00:06:53]>> It's okay.

[00:06:55]>> Okay.

[00:06:56]Well, anyways, um Zach ate some breakfast here. He had >> Two plums, two tangerines, or clementines.

[00:07:04]>> And kept offering them to me and I was like I I don't want them. [laughter] But I can't. Um I did bring a ton of snacks, which I showed you for Novie, but I also have some veggie sticks for me. Like the the chip, not like the not veggie >> Veggie >> veggie cutter. Yeah. Veggie chips.

[00:07:23]>> So they're veggie sticks or they're chips?

[00:07:25]>> But they're sticks.

[00:07:27]They're in stick form. They're crunchy.

[00:07:29]>> Veggie chips then or sticks?

[00:07:31]>> Veggie chip sticks.

[00:07:34]>> Chip stick veggie stick.

[00:07:35]>> Yes.

[00:07:37]Shark bait. Mwahaha.

[00:07:39]>> [laughter] >> So I have those. I thought like a salty snack would taste good afterwards. And then I have um some Element with me, too, just so I can hydrate afterwards.

[00:07:49]Again, I'm going to ask for them to finish that bag of fluids off on me.

[00:07:52]Don't let it go to waste.

[00:07:55]Uh maybe if they walk away, I'll open up the clip. Don't do that. Don't do that.

[00:08:00]Let them handle your IVs.

[00:08:03]But, it's tempting.

[00:08:04]>> [laughter] >> Um so, we should be there in what? Like half an hour or less?

[00:08:09]>> Half hour.

[00:08:09]>> Okay.

[00:08:10]>> Not that far.

[00:08:12]>> We'll see how it goes.

[00:08:26]Okay, so we're going down to the ground floor. First time being there.

[00:08:30]This is your first scope here.

[00:08:32]Yeah. I don't think I've ever been to Philly.

[00:08:34]>> The first thing I did after checking in was get a bracelet that identifies me, have my name and all that information.

[00:08:40]They also gave me a questionnaire just like, "When did you last eat, drink?"

[00:08:44]All that fun stuff. And a little cup for urine just to see if I was pregnant.

[00:08:49]Spoiler alert, I'm not.

[00:08:51]I was a little disappointed, you'll hear later. Um but, Zach just kind of chatted with me in the waiting room, kept me kind of calm cuz I do get a little nervous even though I know what to expect. I get a little bit shaky.

[00:09:02]Finally was called back, had me put on a gown. Looking back, they had me take off my underwear, which makes no sense cuz they're not going up my backside. And also, they had me put the gown open to the back, which also didn't really make sense. But, doesn't matter. It was not a big deal. They can navigate a gown when I'm, you know, unconscious. Um after I did that, I was just kind of waiting around to get my IV. The nurses were super great. They were keeping me comfortable, gave me a blanket. And eventually, they did come in and place the IV. It wound up being perfect, no pain. I mean, very little pain.

[00:09:36]Um and then I was just kind of waiting around to be brought back and that didn't take long either. This was a very fast process.

[00:09:43]I was getting a little nervous. I was saying to the camera, you know, we got this. We'll be good. Everything's fine.

[00:09:49]>> [laughter] >> Uh, and then I was brought back and it was very quick, very quick process. And here I am awake afterwards. I don't even look like I was put under anesthesia.

[00:10:00]So, um, I was pretty stable. The nurse helped me get up out of bed for the first time, made sure that I was good to put my clothes on and all that. So, don't worry.

[00:10:08]I felt pretty with it at this point. I I was like, wow, not bad. All I wanted was some french fries from Wendy's though.

[00:10:16]So, I was like, let me get my stuff together and get this show on the road.

[00:10:20]I was also given pictures of my results which I will show you shortly. And here I am walking out. I was so excited to just see Zach and see my baby and [clears throat] get the heck out of there, go home, be comfortable.

[00:10:32]Um, took a little bit to get to the to our car cuz it was just It's a little bit of a difficult place to navigate cuz there's a few elevators and it was fine though. We were totally good. We are out. We're out. We're free.

[00:10:46]Breaking free.

[00:10:47]Um, okay, so the scope went great. I am just ever so slightly groggy. I feel pretty much back to normal. That was so fast and painless. And I was a little like once I got back to the OR, I was a little overwhelmed cuz it was much more OR-y. It wasn't It wasn't an OR, but it was much more OR-y looking than Presbyterian.

[00:11:12]Like where I would normally get scopes done. Um, but they were lovely. I fell asleep right away. It felt like 2 seconds and I woke up again. And of course, as I predicted and as my doctor predicted, my intestines are beautiful.

[00:11:28]>> Which is great news.

[00:11:29]>> They did do some biopsies, but there was nothing to be seen. I do have pictures, so maybe I'll show them right here, so you guys can see what my intestines look like.

[00:11:41]There was what she what the nurse said was a little bit of like reflective from the camera's light. Um so that's what you're seeing the little spots from. I thought it was maybe some output stuck in there. But no, the intestines look beautiful and they're clear. So when my doctor came in afterwards and told me that, I said, "Okay, so like why do you think I'm having all these problems with my ostomy output?" And I brought up the SIBO again. I did inform him of that, and he said, "Okay, so what we can do is a course of Xifaxan. This is a GI specific antibiotic, so it's not absorbed systemically, but it can help get rid of the bad bacteria and I think the good bacteria in my belly. Um and that helps a lot of people.

[00:12:29]Unfortunately with Xifaxan, some insurances cover it no problem. A lot don't. And one guy, he said it cost $1,100. The guy was like, "I'm not doing that."

[00:12:42]>> All right.

[00:12:42]>> I said, "Rather than just going for Xifaxan without knowing if this is a problem, can we test me? Can we see if this is even worth it?"

[00:12:54]And so he is going to set up the SIBO testing, the hydrogen and methane testing.

[00:13:00]The neat thing about it, it's done at home. They send me a package and I do it at home and then I guess we ship it in.

[00:13:06]And hopefully we get some answers when it comes to that. That would be fantastic.

[00:13:15]>> So he's going to start working on that, and then we can see if the Xifaxan is even needed. He said there can be a cost with this test, but it's more like a couple hundred [clears throat] dollars, which is better than >> $1,100.

[00:13:28]>> $1,100 for an antibiotic I might not even need if this is something else. He said this could also be IBSD and it could be really hard to tell somebody they have irritable bowel syndrome when they've also got IBD and an ostomy and all these other things going on. It's hard to diagnose that because you already have GI [clears throat] stuff. And I told him I think that IBS is just a slap-on term when nobody knows what's going on. And he was like, "Yeah, it could feel that way because you know, that's what they diagnose you with when all the tests come back normal. So, it's a functional disorder.

[00:14:13]Anyways, that's the plan. So, I don't know when that testing will happen. I asked what I can do in the meantime. I did tell him I got IV fluids once and it was cheaper and closer to home than to come to where I just had this done. And he was like, "You can try that again." He said, "Don't let yourself feel bad and like get really dehydrated, especially in the heat."

[00:14:39]I told him, you know, I've kind of maxed out the Imodium loperamide dosage and it's not doing a whole lot. I'm still emptying a few times overnight.

[00:14:50]Um >> What about you mentioned the fluids you got?

[00:14:53]>> Oh, so I know I've been telling you guys like I was going to let them know, "Hey, give me all the fluids." Which I did tell them. They didn't do it.

[00:15:00]>> Oh, really?

[00:15:01]>> They disconnected me.

[00:15:02]>> When you went to the one place >> That's what I just said. I told him about that.

[00:15:06]>> And that's why you liked it.

[00:15:07]>> He was like, "Oh, wow, it's cheaper and closer? Like, go do that." Cuz I told him I told him, you know, it's the same exact thing you guys would give me here, normal saline, and the nurse that works there also works in a GI suite at this hospital system. So, I'm pretty comfortable continuing with that even though it's not a hospital, it's not an IV clinic run through a hospital system.

[00:15:32]You know, what I'm saying?

[00:15:34]Ew.

[00:15:36]Sorry.

[00:15:38]So, I did tell him that um there really there really isn't a ton of answers for me right now. I know that there are other medications to do for uh ostomy output. There's a few things.

[00:15:51]So, Lomotil, I have been on Lomotil in the past.

[00:15:55]That made me kind of sleepy, so I didn't love it. I also don't know in terms of trying to conceive if that's safe. So, and I did I told my doctor our plans. I was like it was to knock this out. I was a little disappointed my pregnancy test was negative. I was like, that'd be a great reason to get this canceled and the only reason I would accept I'm not. Um but I know I was >> I was hoping for that news, too.

[00:16:20]>> I know. So, that was the funny thing.

[00:16:24]They did my pregnancy test and the machine didn't accept it, so there was a delay. They had to run it again. I'm like, >> [clears throat] >> but no, it was okay.

[00:16:34]Um the nurse came in and was like, "Yeah, it's negative." And she's like, "You were kind of hoping it wasn't negative, huh?" I'm like, "A little." But then again, I didn't want to do the clean out for nothing.

[00:16:46]So, you know, it is what it is. Um so, anyways, Lomotil, there's also tincture of opium. I have never been on that. I have had friends that have been on that and they found it really effective.

[00:16:58]>> Tincture of opium?

[00:17:00]>> Yep, slows down your bowels. I always get really nasally after these cuz they they put oxygen on and I feel like that I'm I get irritated by it.

[00:17:11]Um there are also medications like injectable medications for short bowel syndrome that help to slow the bowels a bit.

[00:17:22]And somebody had mentioned that in a comment, and I was grateful that they said that. Um I don't have short bowel syndrome. I have nearly my full small intestine. I am extremely lucky in terms of Crohn's disease. I had a small portion of my ileum removed, not even enough to impact my deep my B12 levels.

[00:17:41]Like my B12 levels have been fantastic ever since I got my ostomy and my ileum part of my ileum removed.

[00:17:51]So, um I don't have short bowel. I don't know if they use these medications on people without short bowel syndrome.

[00:17:59]I I don't know. I haven't met a ton of people that have had like just high output. And I also told my doctor, this makes no sense. This why I think this is something new, like SIBO, after being on antibiotics for the last few years for my sinuses and multiple UTIs cuz of my kidney.

[00:18:22]Um And just different procedures I've had, you know, they give you doses of antibiotics. I think they gave me antibiotics today. I saw them on the computer, you know, hit start antibiotics right as they were putting me to sleep.

[00:18:35]So, I've had so many doses of it, and I think it screws with my GI system. There was a point after ostomy surgery for about 10 years where I don't think I had a single dose of antibiotics. I just I was doing well.

[00:18:54]We were doing great. And so, it makes sense for this to be the issue, but I told him, I never used to have issues with dehydration. I never took electrolytes.

[00:19:04]Um I from the time, you know, 16 years old into college, I never I didn't know what electrolytes were. Like, I it wasn't a commercially available Yeah, I mean, they were commercially available. There's Gatorade and Powerade, but nowadays you see so many different ones. There's Liquid I.V. and DripDrop and Nuun and H2ORS and Nuun. There's so many different ones. I think Ultima.

[00:19:32]Now it's so much more popular.

[00:19:35]I don't know. I just now I feel like I rely on them, but I never needed them earlier. So, something has changed.

[00:19:43]And this is the only conclusion. And I I did tell my GI, like, no, I had never been diagnosed with SIBO. He did ask. I said, "No, never been diagnosed, never been on Xifaxan."

[00:19:54]I worked with a nutritionist who hypothesized that this could be an issue. She treated it like she would as a nutritionist, and I saw improvement.

[00:20:03]I've been doing those things again, and I haven't seen a ton of improvement.

[00:20:11]So, I'm glad that we're doing the testing to finally get answers. And then I'm really going to feel crazy if they come back to normal. Okay, that was not safe.

[00:20:22]Look, I just passed this on the shoulder.

[00:20:26]>> Well, I'm getting off here.

[00:20:29]>> Um so, that's that's great that we're getting the testing done. It's going to be disappointing if we don't come back with a positive test.

[00:20:40]Like, it's telling me there's some sort of bacteria problem.

[00:20:47]I just I want an answer so that way I know, "Okay, that's the problem. We can get this >> solution.

[00:20:53]>> Yeah, we can get this specialized antibiotic, and maybe after that start some hardcore probiotics to keep things in balance, and try to avoid more antibiotics at all costs. I don't like them. I you know, It's great while you're on them. You feel pretty good and your ostomy output regulates and then as soon as you're off, you start to notice uh So, that is how my scope went guys. Um as you can tell I feel like I'm pretty I'm pretty with it. They give you some pretty Yeah, they give you pretty light drugs and I have zero pain.

[00:21:31]I know that people though who've got like I heard I was over hearing other people that were getting scopes and they were saying don't strain. Don't got that problem. We don't have an anus to strain with.

[00:21:42]So, I feel a little fortunate. I mean it did take a lot of work to get here, a lot of pain.

[00:21:49]But uh that's that's my experience with my ileoscopy.

[00:21:54]And it was pretty it was a pretty straightforward procedure and I have a really great doctor who I feel comfortable asking a lot of questions and I I feel like I asked him a lot afterwards.

[00:22:06]I was chatting his ear off. We were talking a mile a minute there. Plus the nurse Yeah, I like him too. I think he is potentially my favorite GI that I've ever had. I think he is. He's just chill and that's what I need. I need somebody who's going to laugh with me cuz then I feel comfortable asking all the questions that I need to ask, like serious questions.

[00:22:27]All right guys, I'm going to let you go cuz we're on our way to Wendy's.

[00:22:30]>> Actually almost there. 2 minutes. It's the next three lights. Well, I feel bad scoops is fully out.

[00:22:36]>> Already?

[00:22:37]>> She's been.

[00:22:38]>> Oh my >> No, she hasn't napped today. She's horrible. Oh, there's a piece of debris.

[00:22:43]>> Ooh, that's like half a car there.

[00:22:45]>> Yeah.

[00:22:46]>> Anyways, um >> Sorry.

[00:22:48]Debris. I know it's debris.

[00:22:49]>> I know it was a tough day for Novi, but she didn't throw up anymore.

[00:22:53]>> Do you think you want me to run in and get something or you can just so we can leave her in the car running like I this is it's so much for her. She Well, we were sitting in the little rain garden area, the courtyard. She was just zoning out staring and just >> Cuz she didn't sleep on the way here like we had >> Well, she threw up.

[00:23:13]>> Cuz she threw up.

[00:23:14]>> Yeah, I think we one of us just runs in and the other sits in the car.

[00:23:18]>> Sounds good.

[00:23:19]>> Sorry, this is too This is too much for her.

[00:23:22]Genuinely.

[00:23:23]>> But it's over for the next few years. We don't have to do this again.

[00:23:26]>> Well, next time she'll be a little bit older and maybe she'll jog alongside. I mean, she doesn't need to be in the stroller.

[00:23:31]>> Cuz she probably won't be taking naps anymore.

[00:23:34]>> Sad.

[00:23:35]>> But maybe we'll have other little babies taking naps.

[00:23:40]>> [laughter] >> I need strollers.

[00:23:42]>> I Oh, I've seen that. I keep getting ads from like Walmart of the quadruple stroller.

[00:23:48]I'm like, oh.

[00:23:50]All right, guys.

[00:23:51]Chatting too much. Oh, we're at Wendy's.

[00:23:53]All right. I'll see you in the next.

[00:23:55]Bye, guys.

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