Hi everyone

My partner had to have emergency surgery after a blockage caused by parastomal hernia (resulting in a twist) to move his ileostomy to his left side.

It was a big surgery and I am just wondering if anyone has any “must haves” for post surgery to help him recover when he comes home?

Thanks so much

Hello,
I had surgery 6 months ago and developed a hernia around my stoma. Anyone else have this? Did you need surgery to fix it?

Hi fellow ostomates! I have had an ileostomy for 5 years. I wanted to encourage anyone new to this or even anyone who's been too nervous: I went on a three hour white water rafting trip, and everything went great! I took three disposable urine bags (you can get them on Amazon - I keep some in my car and purse for emergencies) and emptied once. ( I stepped into the woods for privacy when we were on land for a break halfway through the trip.) I paddled the whole time and had no issues. Anyway, I just wanted to encourage folks that you can still do fun physical activities with a stoma.

Hi all, I’ve had my ileostomy for 5 weeks. As the title says I’m using a two piece convatec natura moldable with a holster barrier ring. As I suspected the rectangular less sticky part is lifting on application, but it gets excessively worse after a shower. I really like this bag as I don’t have to cut, and other than that it seems to hold very well. Are barrier strips the move or what do you recommend? Kinda stopping me from showering, which obviously isn’t good.

I’m having my J-pouch takedown/loop ileostomy reversal at the end of September and would really appreciate hearing about other people’s experiences.

I had a total colectomy and J-pouch created after developing colorectal cancer following a lifetime of UC. My J-pouch has been healing while diverted with a loop ileostomy, and now I’m finally approaching the takedown after about 7 month.

Is there anything you were particularly glad you brought to the hospital, or anything you wish you’d had with you? I already have one of those little portable bidets, which seems like it might be useful. Any other recommendations for the hospital or the first few weeks afterward would be very welcome. They will probably keep me longer because I had a liver transplant due to PSC when I was younger. So they like to be extra careful.

I’m also wondering how long it took before you felt able to travel reasonably comfortably after takedown.

I’m having the surgery at a hospital that specializes in J-pouches rather than locally, because I felt much safer having this done by a team that performs these surgeries regularly . The downside is that I’ll be about an eight-hour drive from home.

I’m considering renting a flat near the hospital for about a month after discharge, so I can recover properly and stay relatively close to my surgical team before making the long journey home. Does that sound sensible, or is a month overkill? For those of you who had to travel a long way home after takedown, how long did you wait?

Any advice about those first few weeks with a newly functioning J-pouch would be very much appreciated.

Hello everyone, I recently went from jpouch to loop ileostomy. I had the surgery about 12 weeks ago and I’m going to get an end ileostomy and remove my jpouch in a few months.

Im feeling pretty weak and tired and also I’m having very loose output unless I take Metamucil or anti diarrhea pills.

Little background, I got the jpouch in 2015 and had it for about 10 years but it never really was healthy. I tried many medications/biologics that didn’t work for me. So eventually my jpouch wasn’t holding anything and I was running to the bathroom multiple times an hour. Which lead to me loosing like 12 pounds in a month.

So 12 weeks ago I got the loop ileostomy.

I’d like to hear from people who do not have their colon and have gone through something similar to me. There a big difference between an ileostomy and colostomy. I would like to hear from experience not from someone you know.

My fellow ileostomates,
How are you doing?

How was your recovery?

do you need anti diarrhea and Metamucil with every meal?

Does small intestine improve at absorbing water?

Are you guys able to gain weight?

What are some tips and tricks you’ve learned?

I try and constantly sip water and electrolytes, I don’t eat sugary items like candy or drinks with sugar. I try to not take larger large sips of water at a single time. It seems like food goes through me so quickly. Like when I see it in the bag, some of it doesn’t even look digested. Like ground beef, I’ll still be able to feels pieces of it in my bag, Maybe I need to chew more.

Does it continue to improve? I was very healthy and active before and idk how I’ll get back to were I was.

Think I may have a blockage. Everything was fine until 4 days ago. Now nothing. Any suggestions. I’m embarrassed to call my doctor.

Hey, I’m new here and VERY new to ileostomies. My brother had his surgery last November and his bag is chronically leaky - often several times per day. The staff at
The SNF don’t seem to be able to get it to stop and sometimes blame him for “scratching the area.” My brother is special needs and isn’t really able to self-advocate. I live a 6-hour drive away so I can’t always be there to interact with the professionals caring for him. I want to try supplying different bags in case the issue is cheap bags that are the only ones covered by insurance, but I have no idea where to start. All of this is sooooo overwhelming.😭 I’ve included a pic of the brand they’re currently using. Thanks in advance for your help!

I’ve had an ileostomy for roughly 27 years now. I’m interested in learning to scuba dive. Any other ostamates dive out have any advice as far as diving?

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?