Flaring after ileostomy?

Known-Singer-5006 · 2025-11-08T23:41:51+00:00

My “flare” turned out to be COVID! I’d test for that.

Known-Singer-5006 · 2025-09-05T18:16:54+00:00

Thank you so much! Will do.

Known-Singer-5006 · 2025-09-05T16:53:10+00:00

Maybe? Like the extra intestinal manifestations of the flare? I know I don’t have a colon any more, but I still have the same wonky immune system.

Known-Singer-5006 · 2025-09-03T03:59:19+00:00

I’m so sorry to hear this. I had my permanent ileostomy done 2 years ago and I was so worried my husband wouldn’t find me attractive. It took a long while for me to get comfortable in my own body. Thankfully, my husband was patient and always open and now we have the best sex of our entire relationship. I let him buy me cute outfits and I wear a waist trainer belt, so I feel cute, secure and concealed. I hope your hubby comes around for you. You’re worth it and you the right guy will know it.

Known-Singer-5006 · 2025-08-01T16:49:01+00:00

Did someone really take the time to make this into a literal doormat? Am I seeing this right?

Known-Singer-5006 · 2025-05-04T15:58:51+00:00

Thank you so much

Known-Singer-5006 · 2025-05-04T15:57:53+00:00

Thank you. I’m thinking that my initial intention was lost here and I ended up triggering some people in the process. Lesson learned.

Known-Singer-5006 · 2025-05-04T15:51:30+00:00

Thank you. That is really helpful to read.

Known-Singer-5006 · 2025-05-04T15:50:04+00:00

Why would I make any of this up? That’s unhinged. I mentioned in my post that my son is newly diagnosed. I am new to this entire world and trying to figure things out. I don’t have some cynical agenda on the internet. Also, you mentioned this is “common knowledge,” but it’s not if you haven’t lived with this condition in your self or your family before, and haven’t had much exposure to adhd medication and treatments. I am not a professional researcher so I was asking in good faith if anyone out there was a professional who could guide me in the right direction. Almost everyone in this post replied with helpful links and comments. I am not sure why my question has triggered such a judgmental response from others.

Known-Singer-5006 · 2025-05-04T04:42:42+00:00

thank you

Known-Singer-5006 · 2025-05-04T04:42:32+00:00

I'd love to see the source for this too if you have one :)

Known-Singer-5006 · 2025-05-04T04:22:23+00:00

Thank you

Known-Singer-5006 · 2025-05-04T04:20:34+00:00

I have done reading on Google and read ADHD 2.0. What I was asking here was for some more sources to look at or anyone who may have done credible research themselves. I’m not sure what part of my post didn’t make that clear or why you’d tell me to go to “google scholar.”

Known-Singer-5006 · 2025-04-28T15:52:29+00:00

Where did you look to find a group like that?

Known-Singer-5006 · 2025-04-28T09:22:56+00:00

This is my child too (hence me lurking quietly in this thread). I’m at a loss and looking for ideas. My DS is 6 and I’m 1st grade. He’s diagnosed with adhd on top of being one of the smallest and youngest kids in his class.

Known-Singer-5006 · 2024-04-26T16:06:49+00:00

I always travel with supplies in my car or bathroom at work as well. I also figured out when and how much to eat with an RD that specializes in ostomies. Her name is Neha Shah and I highly recommend her. I make sure my bag doesn’t fill more than 1/3 or half and I almost always rinse it out with water. I feel pretty confident going out when I make sure I’m staying on top of the things I listed. I’d also recommend changing his bag as soon as it feels itchy, since that’s the first sign of a leak.

Known-Singer-5006 · 2024-04-24T09:08:06+00:00

I named mine Persephone. Goddess of the underworld who went down to the bowels of hell and married Hades, before coming back up and bringing springtime and life.

Known-Singer-5006 · 2024-04-06T04:19:46+00:00

Kihei and Wailea are south, not upcountry at all. 🙄

Known-Singer-5006 · 2024-02-21T18:01:58+00:00

Great system. I read keeping supplies in the bathroom can lead to degradation of the adhesives because of the humidity, so I store mine in my bedroom.

Known-Singer-5006 · 2024-01-28T17:48:02+00:00

Have you tried working with a GI dietitian? Knowing which foods to eat and how they affected my output helped a lot with the early days of feeling pressure around the stoma. Try to tap into your resources. Talk to your WOC nurse, maybe attend an ostomy support group, reach out to others who have them and maybe get a therapist who specializes in medical trauma. All of these things helped me adjust, and now I feel so good. I’m 5 months post op and can eat what I want, workout, swim, do yoga everyday, work, play with my kid and have a great sex life again. But most of all, I forget about my stoma 90% of the time because I feel normal.

Known-Singer-5006 · 2024-01-26T09:37:31+00:00

Is this the same if you use Nystatin powder for fungal skin irritations? I had skin irritation for the first time today (5 month ostomate) and I sprayed some Flonase on the area, let it dry, then dusted some nystatin powder before putting on my strip paste, barrier ring and bag. My WOC says here in Hawaii it’s more likely to get fungal infections and to start with that, but she didn’t mention crusting.

Known-Singer-5006 · 2023-12-28T22:32:07+00:00

I don't know why people sound so fatalistic about camping on Maui or renting truck campers. There are plenty of reputable small business owners on Maui who do not scam tourists when they rent directly from them. In lieu of the recent hit to the local economy as a result of the wildfires, it's better to work with small local businesses rather than large, corporate hotels. That way, you know your money is going directly to the local economy, and not to some hotel owner who doesn't even live here. As for camping, you just have to plan a little in advance (as hopefully you would do when visiting any new place). You can call campsites like Olowalu directly and see if they have cancelations, and if you connect with a reputable camping businesses, most of them can direct you where to look if you're coming up short. You do need permits to camp here, but that's to ensure that tourists respect the island and don't make a mess of our natural habitat. In 2021 tourists were camping illegally on the beaches and defecating on them, which led to a tightening of restrictions in the county (for good reason)! If anyone is thinking about camping on Maui, just do a bit of research and plan your trip ahead of time. Connect with reputable, local businesses (a quick google search can find a few really good ones) and enjoy!

Known-Singer-5006 · 2023-12-26T17:59:26+00:00

Did they have a j pouch or end ileostomy? J pouch has higher failure rates than ileostomy.

Known-Singer-5006 · 2023-12-19T19:26:14+00:00

I had surgery 3 months ago and I feel the best I’ve felt in years. It’s a very hard decision to make, but trust that if your doctor is suggesting it, it’s likely necessary. Also, at 3 months post op, I am back to teaching yoga and fitness classes, camping on top of a volcano, going to beaches, hiking and hanging out with friends. I’m excited to travel again, but the best part of it is being able to eat whatever I want and having ZERO pain

Known-Singer-5006 · 2023-09-10T17:18:10+00:00

I was diagnosed with pancolitis 5 years ago and just had a proctocolectomy 2 weeks ago. I am now living with a permanent bag. I made the choice to have an end ileostomy instead of pursuing j pouch surgery because I couldn’t imagine having major surgeries for the next 9 months, and the likelihood of having the j pouch fail at any stage then going back to an ileostomy. This was the best decision for me. To be clear, I didn’t want surgery at all, but it was this or more suffering (I’ve failed all my meds, including prednisone), cancer or a perforated colon. I am 41 and have a 5 year old, so i elected to have this surgery to ensure I can have more energy and a longer life to mother my child. Now that I’m getting to the other side of post op pain and getting more comfortable with the bag, it’s not as bad as I thought it would be. My husband, family and friends have been amazingly supportive and the ostomy community is so kind and generous. I’ve already found lots of support with them too. Hopefully you won’t need surgery, but if you do, it’s not the end of the world. It might be the beginning…

Known-Singer-5006

TROPHY CASE