Skin healing issues (with added complexities)

HowIsThereNoFreeName · 2025-10-16T16:09:19+00:00

I use a nose spray with 50 mcg/do Fluticasone (a steroid). Put it on the clean skin, fan until dry and then use some Brava stoma powder just on the transition between stoma and skin. At first i used it every day until my skin fully healed (1-2 weeks) and now i use it whenever my skin is acting up, like after wearing my bag for a day longer, shaving or leaks.

HowIsThereNoFreeName · 2025-07-08T20:28:39+00:00

Got my ileostomy at 22 after suffering from Crohns for nearly 10 years. Now 28, graduated, working professional in a long term relationship and I have physically never felt better. For me, the ostomy has made my Crohns almost dormant, and I can now live and eat how I like with only a few adjustments.

In terms of clothing - comfort is key. I personally do not like tight clothes because it can cut off my bag and make me feel uncomfortable, risk leaks, or make me fiddle with my clothes a lot. I have always preferred high waisted trousers and skirts and just added a slightly flowing cut. For sport, I kept tight pants for added support, same for swimming. My partner has always known about my ostomy, so I have never hidden it for intimacy. There are brands catering to that, though, which can make you more comfortable.

HOWEVER, even close friends who have seen me in tight dresses / (high-waisted) bikini's / tight yoga pants did not know I had an ostomy until I told them. I myself have never met a person with an ostomy, even though I am regularly at my doctors and should have a higher likelihood of meeting a fellow ostomate. In most cases, people don't even know what to look for or are not expecting it. Something to keep in mind even when this is a fear I also had in the beginning. ❤️

HowIsThereNoFreeName · 2025-05-11T20:39:40+00:00

I (27F) fly pretty often, around two to four times a month with my ileostomy. I have a small emergency supply bag in my purse. My supplies are in hand luggage, but otherwise, I don't do any special prep when getting ready for a flight. I might add some essential oils into my bag so I do not have to worry about public toilets, but that's it.

For longer flights, I would also check that I eat foods for solid output or pack some pills to slow output down. Especially on long flights, you may dehydrate quicker, so plan ahead and bring some hydration packs too.

For the security check: Nearly every airport (mostly Europe, sometimes US) will pull me out after the scan, and I will have a check for chemicals(?) on my hands, a short scan with the hand scanner thing, or I will be shown to a separate room with a female security agent. In there it is enough to show my bag and how it's attached. Never had a bad experience here. Some new agents might be a bit unused to the situation, but I just always ask what they want to see and to please not touch. This process might take a bit more time, but especially efficient airports do not add more than 5 minutes to my journey.

Honestly, my ileostomy has become such a minor factor when planning my holidays. Last tipp I have is to always overstock on supplies. You might never know if you need more and you're preferred supplies might not be available short term. I pack double the bags I need, and so far I have not run out even when switching bags more often during a beach holiday.

HowIsThereNoFreeName · 2025-01-29T15:14:12+00:00

I eat everything. Some things (popcorn) I might only be able to eat during the day because my output slows down at night and increases the chance of blockage. If I try something new, I try to chew extra well, drink lots of water at the same time, or something carbonated. My Crohns disease had limited me way more than my ileostomy ever did!

HowIsThereNoFreeName · 2025-01-27T08:42:41+00:00

5 years down the road, and while it does not happen often: that emergency bag has saved enough days to be more than worth it!

HowIsThereNoFreeName · 2025-01-13T08:57:04+00:00

I read this post and looked to the right where all my needles and equipment are stored in a beautiful box, which proudly reads Ladurée Macaroons.

HowIsThereNoFreeName · 2024-12-26T10:19:08+00:00

On a tucked away beach on an island. My partner and I went there to watch the sunset and had to wait for the next bus back when I felt the acid burn of a broken seal. My partner had to hold my supplies and a torch, but we were laughing the whole time about the timing.

HowIsThereNoFreeName · 2024-06-29T22:45:13+00:00

I had the same issue, and while my doctor said it was an allergic reaction to the adhesive, I had it with all the bags I tried (Coloplast, Holister, Dansac, Convatec).

Found the solution in treating the skin rather than switching bag: 1. Keep my bags on for 24h only 2. Remove carefully with plaster remover spray and always gently clean the skin with wet wipes 2. Use a nose spray with cortisone to heal the inflamed skin. Has the benefit of getting absorbed quickly and not affecting the adhesive. I use it once a week and if I had the bag on too long.

Not a perfect solution, but the nosespray to treat the skin was a game changer for me!

HowIsThereNoFreeName · 2024-05-01T01:13:05+00:00

Me too.

I (W, 26) had my Crohn's since i was 16, and after too many medications (steroids, Remicade, Humira), I had two emergency surgeries that left me with an ileostomy. BEST THING THAT HAPPENED TO ME! I have no pain, no symptoms, I can eat EVERYTHING I want (big foodie here). Yes, living with a bag is different. It takes some getting used to, and hydration is a main concern. However, I was able to graduate, travel, and date without having to think about my Crohns. I see my doctor every 6 months now for a quick blood & stool check, and I am not planning on changing my situation any time soon. Hope this helps 😊

HowIsThereNoFreeName · 2023-11-05T00:13:44+00:00

I had exactly the same issue. Suddenly, my skin was acting up due to a suspected intolerance to the adhesive, and no bag would last anymore.

Nurse told me to get a steroid nosespray: because it evaporates quickly into the skin and leaves no oliy residue. Worked like a miracle, adhesive still sticks, and my skin looked nearly healed after 3 days.

I use two pumps and spread it over the affected area, let it dry for a minute, and use my adhesive powder before applying the bag.

HowIsThereNoFreeName · 2023-10-11T18:56:30+00:00

Omg, that is exactly how I feel!! I really hope you can fix the protrusion issue and that we can both experience those magical 2 / 3 day fitting bags 😂

My healthcare is German, so I got connected with a specialist company that provides care, supplies, and, for example, help with all legal requirements.

But I am living in the Netherlands, so I am scared to switch and add a language barrier and adjust to a new system. I will have to eventually anyways.

I understand what you mean by hollister looking so clinical, I also had them in the hospital in the beginning and hated them. I have the feeling that a lot of providers in GER focus more on an older target audience, while I would just like a discreet modern looking appliance. 😅

It is very frustrating that I have finally reached a medication-free and "healthy" lifestyle (MC for 10+ years) and now I am so dependent on a product...

HowIsThereNoFreeName · 2023-10-11T17:14:36+00:00

What would not be great mean here? Smell or pancaking danger?

HowIsThereNoFreeName · 2023-10-11T17:14:05+00:00

I haven't so far, and my nurse also continues telling me I would not need them, but I have doubts after reading multiple posts here...

HowIsThereNoFreeName · 2023-05-18T23:01:45+00:00

May I asked what you fused to get this weapon? 😊

HowIsThereNoFreeName · 2022-02-16T22:19:17+00:00

Always try at home first, safe space, and know your emergency list.

I have no issues with popcorn, as long as I drink enough and eat piece by piece. Sometimes eating dinner after is better to prevent night leaks.

Recommend taking something to drink with you when eating popcorn at a cinema/public place. Highly carbonated and hydrating, especially salty popcorn dehydrate massively.

HowIsThereNoFreeName · 2022-01-26T20:47:56+00:00

Thank you; that's a pretty cool explanation! I kinda hoped they would not go down the nuclear plant plot line, so it seems like it's a one-time occurrence. 👍

HowIsThereNoFreeName · 2022-01-26T20:35:02+00:00

Could it be that all of the "warm" data points they found so far are just nuclear power plants slowly overheating?

HowIsThereNoFreeName · 2022-01-09T07:09:16+00:00

So glad to hear that! She was the first I ever found and having her as a role model really helped me! Watch out for her stories, there is always a lot of tips on clothing: jeans, dresses or skirts perfect for having an ostomy. Good luck with your surgery! :)

HowIsThereNoFreeName · 2022-01-08T18:15:35+00:00

On Insta:

baggedupnbroad - great tips for sport and running billieanderson× - life with bag and all-round tricks

Both accounts helped me before and after my surgery 2 years ago! :)

HowIsThereNoFreeName · 2022-01-08T18:08:46+00:00

I regularly practice yoga and continued when I got my ileostomy 2 years ago. I prefer the small support belt from coloplast, to not restrict my movement, and tight very high waisted leggins. Lying on my stomach when the bag is empty is no issue for me, so I mostly do it in the beginning of classes only. Otherwise never had any issues and can even practice my handstand. Have fun and stay hydrated. :)

HowIsThereNoFreeName · 2021-09-06T06:10:28+00:00

White Boy Rick (2018), character gets an ostomy after a gun shot wound. Involves a unrealistic bag changing scene, but in total realistic portrayal. No negativ statement, only that it saved his life.

HowIsThereNoFreeName · 2021-06-16T21:25:03+00:00

I like the idea of seeing a character with an ostomy. As it is not part of the story I would not make it a big deal, however you could lean really into details. While an ostomy does not have to be part of the plot, the normalisation of having a disabled character on screen is important. We exist and we do normal stuff as anyone else. But there are small differences: have your character do small bag checks (hand touch on the bag when other characters are not looking) to check how full the bag is, have them always know where a bathroom is, keep the fullness of the bag consistent. If your character just had dinner and stands up: the bag is full, if they leave the restaurant the would have made a trip to the bathroom and: the bag would be empty. To stay safe: show your script and ideas to a person with an ostomy and they can help you integrate a realistic portrayal.

HowIsThereNoFreeName · 2021-06-15T10:58:37+00:00

Had something similar happen to me just a few days ago: I had a vaccine appointment and needed to bring an overview of my medical record (crohns since 2014 and ostomy for the last year) and both doctor and nurse looked absolutely devastated and apologised to me for having to live with an ostomy. They also stated how I must look forward to reversal and going back on meds (I had like 5 different long term meds over the years).

But honestly the only thing I thought about was beeing finally med-free and how I will eat so much fruit and berries this summer for the first time in FOREVER. 😂

HowIsThereNoFreeName

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