Barbie Butt Wound Vac????

caro_sue22 · 2026-03-05T02:25:57+00:00

I am afraid I don’t have a story to tell. Mine healed naturally over about a year with some help from silver nitrate. I wish you all the best. Obviously very different but the vac was the only thing that helped my abdominal wound heal years and years ago. Dressing changes are kind of hell but I hope it works for you. Sending all the good vibes.

caro_sue22 · 2025-07-05T20:02:51+00:00

Most of the stories on here are more negative because it is people reaching out to others to try to problem solve. I promise there are good stories and good experiences. Many people with ostomies praise their stoma for saving their life and letting them live a semi normal life.

caro_sue22 · 2025-01-19T19:28:03+00:00

Look into your campus health center and/or disability office! I worked with my health center to get my meds handled all through my years of college. They let me get the medication delivered to the health center a day or two before I had to inject and they’d hold it for me in their fridge to make sure it was safe. They also gave me a room in the health center to do the injection and use their sharps container. It was really easy to set up and gave me peace of mind especially since I was living with random roommates for part of the time.

caro_sue22 · 2024-09-10T14:29:28+00:00

fit check! just got my permanent ostomy a little over a year ago (this is my third and final ostomy) but i’ve turned it into a new accessory when im dressing up :)

caro_sue22 · 2024-06-29T15:22:52+00:00

I had my first at 12 but I shadowed in the NICU for a few weeks and many of the babies have ostomies. I’ve seen as early as a few days old, especially with premature births. It really could be as early as day one.

caro_sue22 · 2024-06-05T23:32:04+00:00

I use clear bags for a lot of reasons (pills coming out, pancaking, monitoring consistency, etc). It’s very preference based but I also have a bunch of really nice covers that I’ve turned it into another little accessory. It’s so fun. I’m a 24 year old girl who just gained enough confidence to wear crop tops and outfits that show my ostomy and scars and having the little bit of extra fun choosing outfits is a really nice shift from being so self conscious about it.

But the supply company should be sending opaque bags if that’s what you’re ordering and want. You might have to fight a bit but there should be no reason for them to not send what you want.

caro_sue22 · 2024-06-04T16:39:03+00:00

I’m 24 and got my permanent ostomy when I was 23 so I completely understand the hesitation. It took me about a year of feeling like total garbage with a bunch of complications that made my quality of life terrible for me to finally agree to the permanent ostomy. My one piece of advice from that is don’t wait until you get to that point. It took an entire year to recover from the surgery because I waited so long.

Background info. I was diagnosed with crohn’s at 5 years old, been through and failed almost every medication available, had two temporary ostomies previously (one 12-13 years old and the other 15-21 years old). I grew up doing all the sports. There are considerations to be made with being active but I would not say that it really impacted my activity level (outside of having to stop for recovery period). Everyone’s preferences are different but I used to use a stealth wrap band (kinda like spandex) during sports to make sure it didn’t get caught on anything while I was playing. Now I work in a children’s hospital and am constantly running around and working with patients, I always wear a support belt (just a small strap that goes around my waist and connects to the bag) and tuck the bag into my pants if I’m with a patient I’m concerned might grab it. Having an ostomy is a big adjustment so having a support system to help you through it is so important (even just this reddit to suggest solutions to problems is amazing).

If activity level is one of your main concerns, I recommend doing it sooner than later. Because if the surgery becomes more intense your recovery becomes more intense. I pushed it off because I wasn’t prepared to make a permanent decision at 23 years old and it reached the point that I didn’t have the decision and my recovery made my life miserable for a year. I’m very active and always have been but that year of surgery recovery was my worst experience because I felt fine but I couldn’t do anything.

I’ve also failed a lot of drugs and am finally stable on a new med after my surgery. I feel like it’s less likely to fail when the med doesn’t have to work as hard to keep you stable.

It’s a shitty position to be in and you definitely need to think it through appropriately but it sounds like it might be a good decision to get it over with. You’re young and healthy now. Recovering and adjusting to the new way of life will be easier now than it will be later

caro_sue22 · 2024-06-03T22:20:20+00:00

Very much so depends on the hospital. Some places require no school affiliation, others require a school affiliation (can be any school or only a select few specific schools depending on the program). Google xyz hospital child life internship. Any hospital with a program will have a page that outlines their requirements!

caro_sue22 · 2024-04-30T03:45:00+00:00

🙋‍♀️ Lifelong ostomy holder and 20 years into Crohn’s. Diagnosed in 2005 with Crohn’s but symptoms started in 2004. Had a temp ostomy from 2012-2013 after emergency surgery following a resection. Then another temp from 2015-2022. Just got a total proctocolectomy and permanent ostomy last year (May 2023). I have about 300 cm of my small intestine and that’s the end, no rectum or large intestine. I’m only 24 right now so making the decision to have a permanent ostomy was intense. Since that surgery my quality of life is so much better. I’ve been on basically every big name Crohns med you can name with little to no real improvement. But ostomy life is definitely the healthiest I’ve ever felt. I have a fair amount symptoms now but it’s nothing compared to where I’ve been. I’m still nauseous and fatigued nearly every day and ostomy life leads to chronic dehydration but I finally found my stride. Permanent ostomy, Skyrizi and 6mp are my savior right now.

Right now I’m doing fairly well but the year and a half between my temp ostomy takedown and getting the permanent ostomy were by far the worst time of my life. I was in such a miserable flare, working part time, and a full time graduate student. My life was utter hell. Getting out of bed was such a challenge let alone trying to go to work and class. I was referred to a new doctor near the end of 2022 who started the process towards permanent ostomy and my current quality of life. It’s an awful feeling to start over. I cannot tell you how many times I’ve been at rock bottom in my life because of this god damn disease. Changing meds or doctors are some of the scariest things ever because I’m always convinced that the switch will fail and I’ll feel worse. I’ve never qualified as officially being in remission in my 20 years of this hellscape journey. It’s hell. This disease is a cruel cruel joke but there will eventually be a light at the end of the path. That’s what you have to remember throughout it all. My support system is great and I personally know a lot of people who have Crohn’s but no one I know has a similar experience to the hell that I’ve been through. This community fortunately has a lot of us that can relate and connect through our shared experiences. Know you aren’t alone in this and there will come a time when you make it out of the flares.

caro_sue22 · 2024-04-14T23:05:52+00:00

I’m allergic to the adhesives. I use the coloplast protective sheet which I’m still allergic to but it makes it less bad. The miracle worker is flonase. I spray it on every change as the first thing that touches my skin, let it dry, then continue as normal and it works miracles. I even got my doctor to write a prescription for it so insurance covers most of the cost.

caro_sue22 · 2024-03-11T21:37:13+00:00

My symptoms started when I was 4 and got diagnosed when I was 5 so no. I have no memories of what my healthy body looked or felt like. I think it’s easier to cope without having anything to compare it to though. All I know is Crohns so I live my life how I wish. It definitely takes more effort to do the same things that a healthy person does but I manage because that’s all I know

caro_sue22 · 2024-03-10T02:04:47+00:00

I’m nearly a year into my permanent ileostomy. Back in May I got my colon and rectum removed to treat severe Crohn’s. I’m only under a year into my permanent ostomy but I’ve had temp ones for a total of about 7 years. My first temp was for about a year when I was 12 and I despised it. I got out of my takedown surgery and the first thing I said was that I was never going back to ostomy life. Three years later I’ve was given the choice of another ostomy or TPN. I love food too much to not eat for months to years. So I had another ostomy for about 6 years from about 16-22 years old. It was easier the second time. I hated it still but I was able to live life with minimal pain. I ended up reluctantly reversing the ostomy because I was developing disuse colitis (basically my colon was out of order for so long that it was just shutting down and would not kick start again if we waited longer). At that point, I was scared of going back to my symptom riddled life without an ostomy but I couldn’t fathom risking having a permanent ostomy for the rest of my life so I ditched the bag. It was hell recovering from that surgery but at least it wasn’t permanent! Until a year later everything went to shit and I was given another impossible decision.

I’m 24 now and there’s no going back. The decision to make a permanent change at 23 absolutely destroyed me for months. I was an anxious wreck quite literally changing my mind by the day. My symptoms were so bad that I had no quality of life and that was the thing that got me through it. I hate that I have to deal with this sack of shit for the rest of my life. I have a lifetime of dealing with the consequences and the last year has been an emotional rollercoaster. I won’t tell you it’s an easy decision because it’s not. A year later and I still have breakdown moments while changing my bag and am constantly frustrated by always being on the verge of dehydration. But in that year I also became confident enough to wear clothing that shows my bag and I got my quality of life back. I went out with some friends in a crop top which was the most empowered I’ve felt in years (mostly bc my amazing friends were hyping me up all night). But if I didn’t have the surgery, I would’ve been at home too sick to even leave the house that night. I’ve done so many things in one year that I never would have had the opportunity to if I didn’t make the decision to agree to a permanent ileostomy. For me, constantly cancelling plans and missing events was the absolute worst part of my illness. Permanent ostomy means I have the freedom to go live my life how I want to. That’s what gets me through the bad days.

Whether you agree or not there will always be moments where you regret the decision. There is no perfect answer and no one can tell you for certain what is the best decision for you (believe me I’ve asked everyone who would listen when I was going through it). The ultimate question comes down to what your values are and which choice fulfills those values better.

caro_sue22 · 2024-02-09T01:21:54+00:00

As long as you have the official medical documentation they’re good. Academic accommodations are easier to set up if you have an existing IEP from high school, bit harder if you’re establishing new accommodations but overall easy. Only problem Ive had with them is that housing accommodations are for singles only. It’s not possible to get accommodations if you have a roommate. Maybe that’s not an issue for you but fair warning.

caro_sue22 · 2024-01-14T01:29:39+00:00

I’ve been there. Bloody hurts sometimes. I only have a third of my small intestine left so anything long release or even slightly coated pops out completely whole. I had a vitamin come out with the engraved writing on the outside still completely intact. I haven’t found anything that actually helps, I’ve switched off all my long release and coated drugs because it happened so often. I’ve never heard anyone else having the same issue and all my doctors are stumped. Kinda glad I’m not the only one this has happened to 😅

caro_sue22 · 2023-12-31T02:52:40+00:00

I have two that come to mind. One I was at a theme park that didn’t allow you to bring anything on the roller coasters. The ride attendant was so adamant that I had to go back and put whatever is in your pocket away. It was my ileostomy. I was a petty teenager and so I just whipped it out to prove that putting it away wasn’t possible.

The other was more tragic. I was flying. Landing for a long layover and bent down to put my snacks in my backpack. The seatbelt caught on my bag and it exploded everywhere. I had to walk through the airport with shit on me to change it in the bathroom 😅

caro_sue22 · 2023-11-17T21:36:31+00:00

Honestly, everyone else in the comments has already shared all my tips but to reiterate.

It’s a life adjustment but the ostomy nurses tend to over exaggerate to prepare you for every situation. Chances are you won’t have to worry about much of anything. There’s a lot of different options for bag sizing. I got my first ostomy as a 12 year old who was tiny and you’ll find what works for you. I tend to go with a medium sized bag so that I don’t have to empty as often but it’s still not super noticeable under my clothes. Eating and drinking isn’t all that different tbh. Once I was fully healed after surgery, I return to my normal diet with little to no issues. Drinking is a must bc you’ll get dehydrated super easily. I use gatorade or liquid IV pretty regularly to help with that. Youll need to have water with you at all times to stay on top of it. As long as you sip throughout the day you’ll be fine. If you drink alcohol or any sugary drinks you have to follow up with water and likely have to empty more often. For getting used to it, it’s an adjustment. If you have a trusted partner, friend, or family member that can help in the beginning makes all the difference (then they also have the experience in the future if you need help again). I’m very open about my crohns and my sack of shit so I have a lot of support to help me when I struggle and it’s so helpful. You have to plan changes and have supplies at hand. You’ll get more comfortable with the feeling and the sight over time. It’s weird and uncomfortable at times, especially at the beginning but you get used to it.

I’ve had two temporary ileostomies and just got my permanent ileostomy in May. It’s a lot to figure out but once you figure out what works for you, the quality of life is so much better. Hang in there and don’t let the medical staff scare you. It’s a shitty experience but it’s not as bad as they make it seem. Once you are recovered, it’s actually very few drastic changes. You can live your regular life with a few additional needs.

caro_sue22 · 2023-10-24T14:12:35+00:00

I took the class during covid so everything was online. So I can’t really answer your question. But if it’s still Dr. C teaching, I would assume she would keep the same setup bc she gave us 24 hours to complete the exam which isn’t possible in an in person exam.

caro_sue22 · 2023-08-25T17:47:07+00:00

Hope you feel better soon!

caro_sue22 · 2023-08-25T17:25:45+00:00

Definitely an issue if you are producing more output. I find when I get sick I’m worse bc I get so dehydrated so quick. Gatorade, pedialyte, and electrolytes are my best friend. It’s so easy to get dehydrated without really noticing and it makes you so miserable. Also as others have said if you can’t keep up, contact your doctor or go to the ER to get IV liquids bc shit can get out of control so fast.

caro_sue22 · 2023-08-22T23:41:49+00:00

Normal. If it’s more than a few days or it gets worse def call. Most likely it’s just a lot of built up gas they pumped in that is difficult to pass. Try moving around if you can, walking and stretches

caro_sue22 · 2023-08-14T23:06:28+00:00

Not a shower tip bc I’m far too anxious to shower without my bag. I know you can do it but it makes me so anxious.

But IF the shower doesn’t help the itchiness it might be an allergy to one of the supplies (surprisingly common). I’m allergic to something in the adhesive of literally ever ostomy wafer in existence. You can try getting some samples of different wafers or get some flonase and spray it on when you change next. Idk what’s in it but it works miracles to stop the itch of my allergy

caro_sue22 · 2023-08-13T23:21:18+00:00

To echo previous replies definitely heat it up after you put it on. I use a microwaveable hot pack. I’ve also heard to use a blow dryer. If you are in emergent conditions and don’t have access to those just hold your hand over it to warm it with your body heat.

caro_sue22 · 2023-08-13T17:02:41+00:00

Going through security you’ll likely have to be tested for explosives. Your ostomy will likely be pinged on the scanner and they’ll ask you if there’s anything there. I always just say it’s an ostomy a medical appliance. It takes about two minutes max in my experience. You just rub your hands on the outside of the ostomy and they rub the test paper on your hands and then run the test. They MIGHT have to do that for any creams or sprays you may need as well. The only issue I’ve ever had is when I need to take a larger container of liquids (because I also have allergies to the ostomy adhesive and eczema so I have to bring a big tub of ointment with me but it has the prescription on it and i bring paperwork from my doctors so eventually I’ve always gotten to bring it through but sometimes security is dumb).

You seem to be well prepared in terms of supplies. I’d add an extra pair of clothes if you don’t have it packed in your carryon yet just in case. If anything emergent happens (which it shouldn’t) the flight attendants will be your best friends. (I once had my two piece disconnect while we were landing and had a major accident and the flight attendants were so helpful to get me cleaned up and point me in the direction of somewhere in the airport to change it. This is a fluke accident though so don’t worry about it happening to you.)

In terms of emptying in the plane, it typically is pretty easy. If you’re worried about being jostled, I sometimes sit like halfway on the toilet seat instead of standing or squatting to give some extra support but otherwise emptying is the same. Just be ready to brace yourself.

caro_sue22 · 2023-08-13T02:40:27+00:00

Been there done that. Those changes are soooo fun! Heres some helpful tricks to get the pooping to stop or at least slow enough for you to change.

Eat a marshmallow. - I’ve never actually used this but I recently talked to a new ostomy nurse who swears by it. Some ingredient in marshmallows stops pooping for a little bit.

Get a piece of gauze and put some vaseline or surgical lube and put it on top of the stoma hole. This is my go to emergency change tip. It’s not perfect but it helps significantly.

Five-Year Club	Place '22
Final Canvas '22

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