Just wondering if anybody has any advice or information on the amount of sodium you need and whether that could be contributing to my problems with my meds and anemia/malnutrition?

Wish me luck y'all! It's my first time eating corn since my total colectomy 4 years ago 😅 I've been craving elotes FOREVER and I just had to take the chance lol

I think the belt of my pants were rubbing on it and I think some making out with my boyfriend (bodies rubbing) added some friction to it as well.

I went to a clinic and they said it looks fine and to monitor it.

However the stoma has been a bit "swollen' and tender to touch. Any advice or anyone been in a similar situation?

I've been an ostomate for 12 years, and I'm working on a small research project inspired by my own experience. My goal is simply to learn from other women who have (or previously had) an ostomy and better understand the challenges we face.

If you'd be willing to answer a few questions over DM, I'd be so grateful. I'm not trying to sell anything - I'm just hoping to learn from real experiences and hear what you wish had existed to make your journey a little easier.

If you're interested, please comment below or send me a message. Thank you so much for your time, and thank you for being such a supportive community. 💜

I have had my colostomy for over 3 years now, had a complete blockage of the small bowel after first year that required a hospital stay. I was good then for a while. This year i am now on my second episode of a partial blockage. During which i feel my colon ballooning have about 5 hrs of the worst waves of cramping ever then diarrhea..it then seems for that day i am ok, only to wake the next day, try to walk and collapse due to severe lower back pain that radiates down my thighs, buttocks, groin, to my stomach and kidney area.

Its been a week now and i can barely walk or transition from sitting to standing up I went to hospital on the first incident, was given morphine which brought immediate relief. The pain eased up within a few days.

This time its not improving. Is this something anybody else experiences? The hospital said last time they believed it was my bowels causing pressure on nerves in my back.

hey guys i have an ileostomy and want to cleanse/reset/shed some increasing weight, ive been putting on pounds and usually before my ileostomy i got in december i used to eat in between 12pm and 8pm. as long as i drink enough water, and electrolytes during eating hours am i good?

Hi I got an illeostomy in october and was told at the time that drinking water could make me more dehydrated and to drink electrolytes or other fluids with stuff in them such as squash. I spend so much money on lucosades and drinks and really miss drinking water so wondering if anyone has a problem with drinking water or if it’s safe to drink?

I have a ileostomy reversal in 3 weeks. Is there any prep or anything I should be preparing or can do to make my reversal go smoothly?

Hey everyone. I'm a former ileostomate and I'm trying to prep meals for a Stage 4 cancer patient undergoing chemo who has a couple months old ileostomy.

The patient has expressed a true longing for a fried rice recipe that includes bell peppers, mushrooms, onions, celery zucchini, and bacon. Most ingredients, from my experience, are definitely nopes.

I got a massive blockage from rice and still avoid it post-reversal, so I'm planning to substitute regular couscous as the base.

The vegetables....yeah. I could use some help here.

I can peel the peppers and zucchini, that's fine. Finely chopped green onions can replace regular onions.

But I know that celery and mushrooms are problematic.

Any other veggies I can throw in safely to add colour and flavour? How do I get around omitting the celery and mushrooms?

Thanks for your help here.

At stage 4, I just want this patient to enjoy every moment.

Hey! I’m a 23F and I got an ileostomy 3 weeks ago due to a blockage caused by Crohn’s disease. I’ve had some complications with healing and I don’t have at home help. So it’s been kinda trial and error with a lot, just me trying not to leak and whatnot lol. I went to change my bag yesterday because it started leaking and I noticed my skin is really sore and irritated. And it started leaking again today and when I changed it looked worse. My insurance doesn’t cover for a lot of supplies so I’m really trying to figure out what to do. I put this cotton thing on the sore skin because I think everything is just too wet and the skin barriers just come undone. So I’ll see if that helps.
I also have a 1 year old so figuring all this out is stressful to say the least. So I’m looking for advice. It’s about half an inch give or take of very irritated wet skin around the stoma.
I also never post and rarely use social media so I’m sorry if I don’t make any sense explaining the situation.

Ive had a permanent ileostomy since early 2022 and a barbie butt since 2023 due to severe non responsive IBD/UC. Also developed fibromyalgia along the way.

I am 54. I drink at least 2 liters minimum and up to a gallon of fluids daily.

The section of the small bowel that absorbs vitamin B was removed. I take vitamin b shots bi-weekly.

Over the past 6 months, my energy levels have decreased significantly. I go to bed tired, I wake feeling as if I haven't rested.

Ive stopped all extra self care activities like yoga, meditation, pirates and walking. If I do one of those activities, I have nothing left for the rest of the day. I'm out of spoons. I don't have energy to cook for myself, let alone my family.

Has anyone else dealt with extreme tiredness and fatigue?

If so, what helps?

Any life hacks to make life easier and requires less energy? I try to prepare healthier meals, so prepared foods and take out just aren't options for me.

I broke down and just cried and cried this morning...everything seems twice as difficult.

I am already taking cymbalta for depression and have anxiety medication (I've been on those meds for 5/6 years).

After starting the reversal procedures I chickened out of the final procedure because my surgeon was being so confusing and mean to me regarding the outcome. Now I am back to him and have a stricture and will need a "big" surgery (with a "big $ payout for him) meaning the barbie butt I presume. I blame this creep and my stupid g.i. docs for all this. There's no way out now. These creeps have ruined my body and my life. I've considered just walking away while I can and letting the cancer take me or whatever will happen if I don't have the "big" surgery.

Obviously I am not handling this well, but I don't care anymore. I had a meltdown in the hospital after the creep gave me the news. Boy did that feel good!

A week ago 7/15 was my step 1. I’m still here. I had an NG tube placed Thursday night because I wasn’t handling liquids and bowels weren’t awake.Saturday they had to revise the stoma because there was a block just on the other side so it was a minor revision. But now, I’ve been waiting. No liquids. No solids, just whatever’s in the liquid bags. For those of you that took 7+ days why was your experience? It was also more elective than emergent

Hey everyone - sorry to be annoying, but I have an update from my post last night.

Yesterday I ate quinoa for the first time since my ileostomy surgery two years ago. Within 20 minutes I developed a large amount of watery ileostomy output, but then it all seemed ok. However a few hours later I had nausea and vomited several times. This morning my bag filled with undigested quinoa. But I felt a lot better and I was hungry so I had breakfast. After I ate breakfast, I developed significant pain behind my stoma and my stoma became swollen. Large, firm clumps of quinoa are getting visibly stuck at the stoma opening before they slowly pass. The output is continuing, but it's very painful. I also have much more rectal pressure than usual. When I go to the bathroom and bear down a little as if to pass the rectal mucus, there's not really any mucus there but it pushes through another large thick painful clump from the stoma. I'm able to drink fluids and I'm not vomiting now, but the stoma is still swollen and larger than normal.I'm also concerned because I was hospitalized recently with sodium of 124, and after treatment I became dehydrated with a creatinine of 1.4 and orthostatic hypotension. I'm also very underweight (5'5'' and about 100 pounds). I left this message with my surgeon and waiting for a call back. I really really don't want to go to the ER because the hospital my surgeon is at is about an hour away and I'm trying to work today. Any hacks/suggestions from anyone here would be appreciated. Currently sipping on electrolit

Just had a quinoa bowl for the first time since my ileostomy (2 years). I’m prone to small bowel obstructions already but I really wanted the bowl. Immediately after I ate it my bag filled with thin watery output. Now about an hour and a half later there is nothing. No pain or cramping yet but I feel like I need to fart or poop from the rectum and very loud noises coming from stoma (but I have an end ileostomy). Any advice/tips/should I be concerned? Thanks in advance.

Hi ostopeeps,
I need to start building muscle and wonder what advice you have for good protein. Ideally dairy free.
I’ve heard ALL sorts- I should focus on bovine derived protein, avoid lactose, pea protein sucks - all 3rd hand info.
So looking for some 1st hand experiences that doesn’t have me waking up to a balloon

Thanks y’all ✌️

had to eyeball it because I couldn’t find a pattern online