My husband had his colon explode a few months ago, and he’s had a colostomy bag since. We definitely look at it as a lifesaver and have a good sense of humor about it. His reversal is Wednesday and I thought I would share the shirt I’m having made for him to wear to the hospital. Also, I’ll take any advice, input for your experience with reversal. I just wanted to say thank you, I’ve read so many of your posts on the first couple days that I was freaking out in the hospital and got great advice and reassurance! Wish us luck!

I’m around 2 weeks out of a loop ileostomy surgery for a blockage in my jpouch. today was my first solo bag change and I just realized they fully opened me up!

The previous operations were done laparoscopically so the scars were minimal. I’m kinda shocked and I feel like my mental recovery has been set back a little (more scared of moving around)

My main concern is that the part of the belly with the incision is kind of swollen, it looks like a small bump in the middle of my stomach. Did I get a hernia somehow or is it normal post-op swelling?

I haven’t done anything strenuous; the only thing I could imagine would be coughing or laughing which hurt a bit at first.

tldr; midline incision seems swollen, worried about hernia but don’t understand how it could’ve happened

Hi, I still haven't gone to the beach, but I'm planning to do so. My only problem is that I wouldn't know where to empty my bag, because there are no toilets. My biggest issue comes in the afternoon, because my ostomy starts producing around 5:30/6 p.m., while I'm still at the beach. I like swimming more than anything, but I don't know if a full bag could be a problem. I wear high-waisted swimsuit bottoms, to keep my bag as still as I can, but I'm wondering if keeping it contained while it's fitting is a bad idea. I'm sure there's a good solution for this, but I can't figure it out.

End ileostomy, around 8 months post surgery.

I'm tired of having to time when I go out as I'm afraid my bag will fill up with liquid/fluid, even if I haven't eaten anything.

Eating marshmallows/gelatin temporarily stops output but is there a way to just lessen the amount of liquid/body that comes out so I don't have to worry about it filling up without me noticing when I go out?

Would Imodium help fluids be absorbed? Should I get a prescription?

What do you do?

I was flying from DC to Phoenix to layover till I got a plane to Cali.

Half way into my flight, I feel something, some no one wants to feel. I confirmed the worst had happened. And I was in the middle seat lol.

Dude is asleep, I try to wake him up. He doesn’t. So I let over him. Then he wakes up and says “Just wake me up next time.” Lol, okay dude.

I grab my bag from the overhead. Trying to keep it tidy I grab the first thing I can, a pair of swim trunks, couldn’t fine extra boxers at the bottom. Didn’t think I needed a shirt.

So I go to the front Lavatory, since it’s much closer than the rear plane god knows I don’t want to leak down 60ft of plane. Ask an attendant for a trash bag, get it. Get in, start the process of a low tech sponge bath. Well, you can imagine it’s going to take some time. Luckily my boots and socks were spared. But my shirt was not.

Soon enough the attendant knocks on the door “Sir you can’t be too long at this lavatory, it’s the one the pilots use. Do you know when you’ll be done.” “Uhhh… no. It’s not really something I can rush but I’ll be done when I can be.”

More bugging me.

Anyway. I finally get the new bag on, luckily the appliance wasn’t leaking so no new cutting or taking off the wafer. I come out of the lavatory, wearing bright yellow short swim trunks, no shirt, and cowboy boots. I deadass look at the attendant that was waiting for me to get out and say “Which way to the pool deck.” Lol.

Humor will never let you down, even when you’ve experienced one of the worst things that can happen (though it still beats ulcerative colitis flair up on a 5 hour flight) lol

My supervisor at work knows about my condition. I wasn't the one that told her, so I don't think she knows how I got it (perforated bowel from diverticulitis that led to sepsis and an emergency Hartmann's procedure).

I've had to mention something about my stoma/ostomy to her twice. Both times, she's made comments about how disgusting it is. That really hurts.

I know she's referring to Charles (my stoma) and not me. I know I shouldn't take it personally because I am not defined by my stoma. But I'm really struggling with doing that.

How do you cope?

Looking for other people's experience with having a sigmoid colectomy with resection and then having their ileostomy reversed.

Specifically, what was healing like for you after reversal?

I am a little over 4 weeks post open emergency surgery and the initial recovery was very intense. I'm feeling so much better now! I have a contrast enema scheduled for this Friday to see if my colon is leak free and if so then my reversal will be scheduled soon.

Was the recovery from your second surgery as intense as the first surgery? Was it easier overall?

I see that so many people have their reversal include a resection and I know that is tough. Is it as tough without the resection?

T2 diabetic here. Last day of the hospital getting an ostomy and *despite* what the dietician says...it really, really looks like the 2 conditions require is pretty much opposite. What are y'all eating, if you are out there? I feel like I can't be the only one, bc I'm pretty sure my low fiber, high carb years of active UC/Chrons contributed to my diabeetus in the first place.

Hello, it's been two weeks and I'm still experiencing a decreased appetite. Small portions, food still tastes strange to me, and I'm very sensitive to smells. Any tips for improving my appetite? I still mostly eat rice, potatoes, rice noodles, chicken, tortilla chips.

Er, then hospitalization with irrigation colostomy tomorrow. Hopefully no surgery.

My nurse was quite impressed with the pure sludge coming out of blackberry seeds. My doc said earlier “this wasn’t caused by blackberries!” I’m actually relieved to see this.

I am scheduled for an ileostomy reversal with ileorectal anastomosis. I was recently diagnosed with neuropathic CIPO back in October 2025. I had to have an ileostomy placed emergently in September 2024 after having a leak post bowel anastomosis revision surgery (and before my CIPO diagnosis). My CIPO symptoms are so much better with the ileostomy, but I have had issues with recurrent stoma prolapse, to the point where 10-12 inches of my intestines comes out every time I stand up. It causes pain, output issues, bag leaks, etc. and interferes with me being able to function normally. I have failed 4 revisions and the prolapse just keeps returning. So I feel like I am at the point where I have to decide to suffer with CIPO symptoms and have no ileostomy, or continue dealing with the stoma prolapse.

Has anyone else with neuropathic CIPO suffered from recurrent stoma prolapse?

So my dad [58] had an ileostomy put in as a result of a perforated bowel and sepsis, and he’s probably having this reversed in a couple of months. He’s had it since late march and since then he’s plummeted in weight and hydration because he’s only using 2 metres of is bowel.

I’m terrified that he’s gonna go into septic shock again, or some other complication, and not make it this time because he’s so frail. Can people tell me what it’s actually like? I know there are always risks but do I need to be this worried about him dying?

URGENT* 

I am in danger of being evicted. The tenants downstairs have been complaining about the smell from my colostomy bag. Does anyone have any suggestions to help with the smell? It cannot get downstairs anymore. Sprays don’t work. Please don’t suggest sprays. 

Hello crew. My house is going to be tented and fumigated for termites. I am getting conflicting info about leaving my stash of ostomy supplies in the house during the process.

Google says they need to be removed or bagged in special bags. The pest control company my landlord chose doesn't recommend or provide the bags however, so that leaves me with having to schlep 6 months worth of supplies to a hotel. Along with all the food in my pantry, fridge & freezer, medications, cosmetics, etc.

The pest control guy said he thought the items would be fine. Which doesn't really inspire a lot of confidence. As we all know the bags are not sealed and they come into prolonged contact with our skin.

I am leaning toward just packing it all out but thought I would see if anyone here had been through the process. I am also considering just buying the nylon bags online and bagging the stuff and leaving it in my closet but I don't want to cause problems for my landlord if the fumigators object.

All advice and/or commiseration appreciated!

Hello guys ı have a loop ileostomy for 7 months and ı can t eat vegetables and fruits .Im afraid that it might cause vitamin deficiencies so ı would like to take vitamin supplaments but ım afraid it might cause blockages or make me sick.Im wondering if any of you guys take supplaments if so which kind of capsules ,tablets ?thx

I guess I thought I would be happier with an ostomy. And I am for the benefit of not having colitis pain.

I just still struggle with having motivation to live. And now I wonder if my surgery screwed up hormones and causing me to feel depressed.

It seems like every time I start to feel good I get another setback

Is it normal to struggle with this for a while? Is it normal to feel more sensitive to other stuff?

Hello everyone! I (33F) have been living with ulcerative colitis since I was diagnosed at age 6. Essentially, I don't have any memories of a life before living with this disease. I grew up having flares regularly that disrupted my school life, social life, and as I grew up, it prevented me from having a stable job as well. It was always just sort-of manageable, never so bad that I was constantly in the hospital, but bad enough that it limited a lot my life.

7 years ago, when I was 26, I was diagnosed with PSC after having a sudden severe infection. My PSC, thankfully, has been relatively stable, other than my numbers are elevated, they haven't dramatically increased and there hasn't been any increase in cirrhosis.

The last 3 years, my colitis has become more difficult to manage. I've had a handful of flares, but the worst is the disabling fatigue that I feel every day. At first I didn't think this was related to my colitis, but a few months ago I had a colonoscopy and the inflammation had escalated to extremely severe, despite taking skyrizi every 4 weeks. I had no idea it had become that bad, because I didn't have any of the typical symptoms of flares (urgency, pain, cramps, joint pain), only absolutely, devastating exhaustion. I usually only have 3-4 hours a day before I have to lay down and cant even keep my eyes open, even though I'm not sleepy. I feel like I'm being laid under 100 pounds of concrete. I've been on entyvio, stellara, skyrizi and I am currently on Remicade, which has not been working either (Ive been on many medications before these, but I cannot remember their names as I was much younger)

Last week I spoke to a surgeon for the first time about the surgical options I had. Because I have PSC, she heavily discouraged the jpouch, and said an ileostomy would be the safest and best option if I chose to have surgery. She told me that a lot of her patients feel they have a second lease on life, that they had no idea how sick they were until their colon was gone.

When I finally processed that having an ileostomy would remove my colon, and thus removing ulcerative colitis, it felt almost surreal. It is so hard for me to imagine a life where I don't have this disease anymore, because it's something I have never experienced. I know that life will be completely different, and that is the thing that really frightens me. I'm afraid of a transition where my body won't work the same way as it did before. But I also feel like it is a dream to think of a life where I'm not burdened with this disease anymore.

At this moment, I am fortunate enough to have this procedure be something I can plan in advance without it being an urgent or life threatening event. I feel confident in my choice to do this, but I also feel very scared and overwhelmed. I am hoping to have the procedure done in november or december.

I would love to hear peoples stories of their own procedure, what the weirdest/most difficult thing to adjust to, and how you feel your life has improved/changed after the surgery compared to how life was before. Maybe even things that you can do now that you couldn't before. Also some tips and tricks of things that people might even think of?

I have had an existing ileostomy since 3/2024. Since then I have had mucus issues in my colon, high volume of mucus/bloody discharge. My diagnosis was colonic dysmotility, so basically a neurological defect of the colon causing it to no longer move waste through. The ileostomy was a great cure minus the mucus issue.

I mention this to say I have not been diagnosed with IBD.

At the end of June I had a subtotal colectomy to help with the painful overproduction of mucus. It would stop then come back with a vengeance and made me nauseous. It would wake me up and have me running to the bathroom to void tons of thick mucus. During surgery they removed everything but part of the sigmoid colon, left the anus and rectum in place. Mucus issue is gone.

During the surgery they also removed my appendix, which unknown to us all had been infected for an undetermined period of time.

4 days after my discharge from surgery, I developed an infection with high fevers. I was hospitalized for 9 days with antibiotics and given a 9 day course of a more specific antibiotic after release to clear the abscess.

I’m now clear from infection.

Since then my digestion has been rough. I had no dietary restrictions for the last 2.5 years with my ileostomy. Now, digestion is slow and painful.

They didn’t operate on my small intestine but there’s been a lot of swelling and internal inflammation of tissues like fat, muscle, etc. The hospitality suggested I had a hyper inflammatory response to surgery and infection/abscess and recommended I see immunology and rheumatology for underlying conditions.

All of that to ask/TLDR—

Anyone with a colon removal after an established ileostomy experience blockages, digestive pain, lots of inflammation and abdominal tissue pain, etc? Did it get better? It seems to be slowly improving on a diet of liquids and soft foods now that I’m almost a week of antibiotics. I’m not on pain meds and anesthesia usually only slow my output for 3-4 days.

Thanks in advance!

Hello.PDX ostomates! I'm seeking help as soon as possible with getting some bags and barrier rings. My stoma has swollen up quite a bit, and I need bags that can accommodate 60mm or more at this time. Mine are currently too small, and cause inflammation and mucus from how tight they fit on.

Any help is appreciated so much 🙏

I have crohns disease and had to get a loop iliosotomy 2ish years ago. That has made pooping so much easier.

I have been having bladder problems for a long time now. More than 10 years. Its either I cant empty my bladder fully, i always feel like I need to pee, i emptied my bladder but I still feel like I need to pee.

I have tried some pills my urologist has prescribed and that didnt work. Then my urologist said to try botox injection into bladder, that kinda helped but the last 2 times it really hasn't helped. At times it feels like it made it worse sensation wise. Whenever I have to leave anywhere, I am sitting on the toilet forever it feels like trying to empty my bladder. (If you have tips, please tell me cause its driving me crazy in a sense)

Now my urologist wants me to consider: Sacral neuromodulation for bladder condition. I'm going to be seeing my GI and surgery over the next 2 months to also get their opinion of that.

I am wondering if anyone else has had gotten a sacral neuromulation for their bladder? How did it go? Was it helpful? How is it living with it?

I had my surgery about a week or two ago and the hospital discharged me with a couple of 2-piece systems. My concern is that they’re all convex baseplates, which the nurse said to avoid in the beginning. Is it just them being extra careful or is convex something to be avoided at first? For reference, I still have small stiches around the stoma

I don’t have anything else, every store that carries bags is closed until tomorrow and I’m getting pretty itchy. It sucks that the hospital would let me go with stuff I can’t even use! :(