r/Ileostomy

I had total colectomy 20 months ago and my bloodwork has been off on several things. I went back last week and some labs are a bit better except for ferritin but now my doctor says I have metabolic acidosis which he thinks is from the loss of my colon and high output so he’s sending me to a kidney specialist to make sure it’s nothing else then he will prescribe a weekly pill for bicarb deficiency. Anyone else here been told they have metabolic acidosis?

Hi everyone,

I’ve had ulcerative colitis for nearly a decade and now live with a J-pouch after surgery. Over the years, I’ve gone through a lot of ups and downs—medications, flares, surgery decisions, recovery, and everything that comes with life after UC.

I’m considering starting a podcast focused on IBD and J-pouch life, but I want to make sure it would actually be useful to the community before putting energy into it.

If you think something like this would be helpful, I’d really appreciate your input:
What topics would you actually want to hear about?
Would you prefer patient stories, medical expert interviews, or a mix?
Are there gaps in information you feel like no one really talks about?
Would post-surgery life (like J-pouch adjustment, diet, bathroom frequency, mental health, etc.) be useful to cover?
Or is there already enough content out there?

My goal wouldn’t be to give medical advice, but more to share real experiences, practical tips, and conversations that make the journey feel less isolating.

Appreciate any thoughts—good, bad, or honest feedback.

Hello! My mother just recently got an ileostomy at the beginning on April. Since getting the ileostomy she has been dealing with a lot of leakage (high output). Previous to this she had some rapid weight loss so she has looser skin on her waist and we think it’s contributing a lot.
Does anyone have any advice to deal with the ostomy bag with looser skin, and any product recommendations to try? So far we’ve mostly used the hollister brand that we initially got from wound care.
Thank you guys for your time

I’m 9 days post ileostomy reversal. FINALLY was released from hospital yesterday. It’s not been a fun ride so far….expected. Read lots of comments on here of others experiences so I wasn’t caught off guard. (Thank you!) Need help with nutrition. What did you eat? I’m struggling with nausea and pretty decent stomach pain (I know that’s normal, but it’s keeping me from eating). What has been the easiest food/nutrition source for you? Pre ostomy, I sometimes struggled with dairy, high fat and high fiber foods. Any advice is welcome. Don’t want to end up back at the hospital due to nutritional deficiency and dehydration. No celiac’s, no chrons, no colitis. Thank you for any help you can provide. 💜

Hi! I have a high output ileostomy (empty roughly 10-12 times a day and at least once each night) since 2011, and recently had a gallbladder attack and need to have it removed. I’m anxious about how this will impact my already high output. Has anyone had their gallbladder removed with an ileostomy? How did it effect your output? Do you have any management tips?! Thank you for any and all info!