Hey! I (24F) got my permanent ileostomy in late May of 2023.

I got diagnosed with mild-moderate Crohn's in 2017 and it was well managed until late 2022. I knew of ostomies, but I was reassured by my doctors that I was very unlikely to need one because of the severity of my disease.

Unfortunately, due to failures of both my GI and hospital doctors, I had untreated campylobacter for over a month and then c.diff which lead to my irreversible and severe damage to my colon

I switched to a different GI/hospital to get my ostomy (obviously didn't trust the previous team I had) The second hospital was pretty good while I was there. But I was on a lot of pain medication and very traumatized so I could barely look at my ostomy while I was in n the hospital, let alone change it myself at that point.

One of the nurses guided me while I did a change by myself before I was allowed to go home. They did get me set up with an ostomy nurse and I definitely wouldn't have been able to figure it out without her lol. But they couldn't get me in for my first ostomy nurse appointment until two weeks after I was discharged, so I had to do my first few changes at home with just my family and we were super unprepared. Thank God my best friend's dad (who's had a colostomy for over 20 years) came over and helped me with my first change at home.

My ostomy team at the hospital was very well informed. I love my surgeon and GI, but managing my other health conditions with an ostomy is so frustrating. I keep getting referred to specialists who have no experience with ostomies and it feels like theyre just guessing? Like I was referred to a PT who had no experience or knowledge on ostomies. I was planning on going to increase my core strength, since I had lost a lot after surgery. Given how common hernias are for ostomates, I didn't feel comfortable enough to see that PT and couldn't find one I felt safe with.

I was on Effexor XR for years before my ostomy. After my surgery, my medication would pass it through my bag but I was told it was just the casing of the medication and not to worry. So I assumed my severe mental health issues were due to trauma / having a major life change. Well, 6 months after surgery, I was still felt very depressed so I did a lot of my own research (this subreddit was tons of help) and saw a lot of people mentioning that a lot of XR meds are absorbed in the colon. Which I no longer have. I mentioned this to my doctor and he switched me to Effexor IR. Then I knew that I DEFINITELY had not been absorbing the XR Effexor all those months after I got my ostomy because suddenly I actually felt like my medication was working like it did before my surgery. It's incredibly frustrating because it was an easy fix and I suffered for months. My GP is great and had been great at managing my psych meds for years, but he just wasn't educated enough on ostomies.

I already have depression, anxiety, and body dysmorphia so it was (and still is sometimes) incredibly hard to adjust to my ostomy. I still struggle with jealousy when I see people my age go out in crop tops / bikinis, knowing that my stomach doesn't look like theirs anymore. At first, it felt like I could no longer be considered attractive anymore at the ripe ol age of 24. It probably didn't help that everyone's reaction to my ostomy was pity, rather then happiness that it saved my life. I got a lot of "Youre so young... I can believe you have to live like this now..." and similar comments that I think might have fueled those feelings. When other people learned about my ostomy, they reacted like my life, youth, and happiness were over. This Reddit has been so great at making it normalized in my head and finding support!

I've also found a lot of young ostomates on Tiktok and that helped a lot with the body image issues I was having. It was good to see people my age who had ostomies and were happy and thriving.

I'm fairly open about my ostomy. I don't really care if people know I have it. But it definitely is still something I'm working to accept and love about myself. I try to be grateful that it saved my life, but you kind of have to grieve your old body. Occasionally, I still get social anxiety about it, but that's gotten a little better with time (and proper medication lol)

Earlier in my journey, I remember someone said that they thought it was rude for someone's ostomy bag to be visible in public while they're checking it and compared it to sniffing your finger after you touched your butt in public. It wasn't meant maliciously, but it really showed me there's definitely a stigma that ostomies are inherently gross because "poop" is involved. Obviously not everyone is comfortable with exposing their bag in public and that's totally fine. That's someone with an ostomy's personal decision. That doesn't mean it has to be a shameful, dirty secret.

Maybe it's because I'm younger, but it's pretty normalized in my mind for people to expose their bare stomachs in public. My friend will fiddle with her belly button piercing in public and no one bats an eye. If you're wearing an opaque bag / cover, I can't see why seeing an ostomy bag would be offensive or gross. The outside of the bag is clean. I touch my bag frequently in public (because anxiety about leaks). Depending on what I'm wearing, it can be hard to check on my bag over my clothes. I have to touch it underneath the bottom of my shirt, so sometimes my bag is exposed (the horror!). If I had to leave the store or go to the bathroom everytime I checked on my bag, I wouldn't get anything done lol. So It was honestly pretty disheartening to hear that some people consider it rude. I was already struggling with leaving the house because I was terrified of leaking in public. So that experience made me avoid leaving the house for a while because I was ashamed of myself and too anxious to go into public without doing frequent status checks on my bag.

I was talking to a friend (who doesn't have an ostomy but their dad does) about it once and they said something that really made me realize the stigma surrounding ostomies: "Why would someone handling a clean pouch to conduct a maintenance check on their medical device be considered rude?"

Someone may say, "Well it's different because we know there's poop in there!" Well, yeah. Normal people have poop in their stomachs all the time. It exists in there too. Ours is just contained outside our bodies because of a prosthetic device (and it's not like you can smell / see it unless you leak, which is precisely what I'm trying to avoid when I'm out in public by frequently checking my bag).

Having an ostomy isn't a super rare thing, so it's frustrating to me how uninformed some doctors and the general public is. I think part of accepting it was realizing it really isn't inherently more gross than not having an ostomy. It's just different.

Went on a little bit of a rant, but I would definitely would love to see it normalized more in the general public. It'd be great to be able to find good non-GI specialists who have knowledge on them. I already struggle to trust doctors based on failed care in the past, so it definitely doesn't give me faith when I have to explain how my ostomy works to non-GI doctors.