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Meet a Girls With Guts: Amanda

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My name is Amanda. I'm from Sacramento, California. I have ulcerative colitis, a J pouch, and a temporary ileostomy. So the theme of my, my story about having ulcerative colitis is really, there is no cure. The cure is a myth. The cure is a lie. It does not exist. With ulcerative colitis, I was diagnosed at 19. And I know I was told, "Oh, like this is a mild disease" - "You’ll just take this medication and then you'll be totally fine." We’re gonna, you know, scope you every once in a while to kind of monitor you But like here are these pills and these suppositories and like you'll be fine. I was not fine. I continued to flare. I failed every single medication of the pyramid that was available to me at that time. And then the next thing on the table was surgery. And so I was referred to the IBD Center at UCSF. And they said, well, you can wait two months for this new drug to come out, that I don't think was covered by my insurance and that was Entyvio at the time or you can you know, have these three surgeries and get a J-pouch. And since ulcerative colitis only affects the colon like you'll be essentially cured. And I thought, now I’m 22, this is great! Essentially cured? Like where do I sign? I kept kinda going over in my head you know the surgeon said, ‘well, you didn't just get sick overnight you were sick for years So it's probably going to take you years to start feeling better, especially after three surgeries in one year. And then things got a lot better. And it kind of was like I was essentially cured for a while. Like obviously my diet was different. I had a lot of trouble with vegetables. I had intermittent abdominal pain. But I'm definitely a person that tries to just brush things off and go like, oh, I'm fine. Like, you know, this isn't a big deal. If you just drink some water and go to sleep, you'll probably feel better in the morning. And that worked for 5.5 years until one night, it didn't. And I was in horrible, horrible abdominal pain and ended up in the hospital with a bowel obstruction. Unfortunately, my small bowel upstream of this voluminous necrotic tissue, it was just so dilated and she couldn’t put it back together so I ended up with a temporary end ileostomy, which is great because, you know, if somebody asks me how I'm doing I’m like, well, I'm still in two pieces. Like I didn't make it out in in one piece but, you know, that's expected in this case. So I'm looking forward to my takedown where they're going to re-anastomosed — basically put the plumbing back together and take down my ileostomy, so that I can actually use my J-pouch again. I was really upset when I woke up with the ileostomy because I was thinking, you know, here I am, it's been almost six years at this point. And I never thought I would have to have an ostomy again. And I have had so much trouble with it before. And I was like, all right, well, now I'm a nurse. I have all these resources at my disposal. Like this is gonna be fine. I can hack this. It's muscle memory. It was not muscle memory. And I made a single mistake that I did when I had a new ileostomy six years ago, only it was worse this time because I was convinced that, "Oh, maybe my allergies have gone away." Let me just let me just try the products that you know I like but couldn't use before. And I started to think like, what's the point? Like I went through all of this as a young adult and I was told that like, you know, I'm “functionally cured.” Like what's the point? Is this just going to be my life now? And accepting that has been the hardest thing I think is that at any moment after this take down, I could be in excruciating abdominal pain and end up right back where I was in the hospital and I have no control over that. Absolutely none. I think that’s the thing that's been the hardest to accept that this is a chronic illness. And I like to pretend that, you know, as a nurse I will never have to be a patient and I can always be just nurse Amanda. And I hate being patient Amanda. But what I’ve been working on right now is trying to figure out how nurse Amanda can help patient Amanda. Because patient Amanda gets really scared.

Video Details

Duration: 4 minutes and 44 seconds
Language: English
License: Dotsub - Standard License
Genre: None
Views: 1
Posted by: ibdgirls on Apr 21, 2021

We wanted to ask IBD/ostomy patients, "If you could tell one story about living with your condition, what would it be?" These were the results!

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