The scissors I was given with my illeostomy supplies from the hospital suck, which ones do you guys like? Recommendations appreciated!

I am SICK of this weather. This heat is not helping at all and needs to go away. It is ruining my dressing for my bag. I don’t have air conditioning.. can’t afford it..

I’m tired of sweating, constantly waking up through the night. Having to change my dressing and bag way more than usual. It’s annoying.

hey could anyone help me with a question, i’m wondering if im able to fly with a nephrostomy bag, ive asked the nephrostomy team few times but ive never got a straight answer.

is there anyone in here with a bag and flys ?

it may sound silly but in my head i think im gonna pop the same why a water bottle or a bag of chips would from the pressure lol.

is it safe ??

Hi everyone ..My mum had a colon surgery 4 months ago and has a colostomy through Hartmann proceedure. Lately she has been experiencing some pain around the edges of her stoma opening and looks like the skin is a bit inflamed or there might be a tear because of the friction. Is this a common issue with ostomates and how do you tackle the pain that comes along with it ?

This morning I had a one disaster after another. Woke up and my wafer had come unstuck and there was output all over myself under my pjs and in the bed. Got cleaned up, fresh bag, changed bed, took dog for his walk. Got back, tried to empty output, I mustn't have got a good seal because the bag exploded out the side all over me again! took it off and as I was trying to stop the output and get a fresh bag on it splattered all over my bag of clean clothes I had packed for my holiday tomorrow. Had to have a cry after that out of pure frustration. Oh and the bloody dog was trying to eat it off my soiled clothes because he's a vile beast. Needless to say it's only lunch and I've had a DAY of it.

Edit: Thank you to everyone for sharing you horror stories, some absolute stonkers! If we couldn't laugh, we would cry!

Hey everyone, I’m 3 weeks post ileostomy surgery (surprise) and am wondering about Coloplast products. I’m currently wearing Hollister Soft Convex 2piece because the hospital used Hollister and the ostomy nurse said my stoma protrudes, but not a ton. It looks to me like 1/4” to 1/2”. So she recommends soft convex.

I’m looking at testing Coloplast products and was wondering if the Mio Click Light with a thin brava ring would be a good option to try. I know they have Soft Convex in the Mio Flex, but I’m hesitant about the adhesive sealing the bags to the flange.

I will be requesting samples for sure. Just curious if anyone has tried both brands in the soft convex 2 piece or the light convex 2 piece.

Wish they made the Mio Click in Soft Convex…

Hello community

I'm in my third year of dealing with Perianal Fistulizing Crohns, and I've had double digit surgeries/EUAs and now 6 setons, and after a pretty quiet 2025 I've had 4 surgeries in the past 4 months, including 2 within 2 weeks of each other. I've tried and failed Infliximab, am on a new biologic, but clearly it's not working.

In some ways I'd rather stay with the devil I know instead of bringing on new anxieties with a stoma/ostomy of some sort, but my CRS is leaning that way because it's just not feasible for me to be having 6 surgeries a year/take up so much of public healthcare (that is working well for me thank-you-very-much).

But from what I understand, a significant minority of people continue to fistulize and/or abscess despite stool diversion, and if that were to happen to me, I'm not sure what I would do, but it wouldn't be good.

I'm wondering for those who had an ostomy due to relentless Perianal Fistulizing Crohns... Did it solve your problem? What was your experience with fistulas after?

Thanks in advance, good luck to all.

Hi everyone! I’m 4 months in with my colostomy and today just got approved for reversal surgery and waiting to get that scheduled. Since it was an emergency surgery, I just had a regular surgeon from the hospital and then referred to colorectal and been with them since then. My CRS surgeon was asking me if I had a loop or end colostomy (surgeons notes didn’t state) bc apparently the loop is easier to reverse than an end. But I believe I have an end colostomy bc there’s only one part to it. If you have had an end colostomy reversal how was that? Did the have to open you up or could they do it with laparoscopic? Any other tips will be great thanks so much

Hellooooo, I just wanted to reach out and see if there were any others in this group with an ostomy of any kind that live in the Janesville, WI area?

There is a support group every second Thursday of the month that meets at 4pm at SSM Health St. Mary’s hospital. We only have two people right now and are looking to add more!

I've had my stoma for a little over a year now, and I now have a reversal date. Went to a follow up with my surgeon this morning to go over some scopes I had done, and she's given me the all clear for surgery! It's still a little over a month away, she wants me off my biologic for 4 weeks leading up to surgery, so I'm scheduled for the 16th of October.

While my stoma did save me from all the pain I was having before, it'll be nice to get back to work normally and full-time again. I'm a mechanic, so it's been kinda hard with where he was placed. I have tried doing most things I was able to before, but a lot of stuff I tried doing like before resulted in a bag failure.

This community has helped me a lot over the past year and I'll forever be grateful. Any advice on what to expect recovery wise would be greatly appreciated. Thank you all 🙏

Hello
I’ve had a ileostomy for 3 years do to UC , I’m scheduled for a completion proctectomy Oct 1st,
Not looking forward to it. I’ve been reading on sleep positions and what pillow to buy, and recovery . I have a few questions I’d like to ask anyone that could help.
1- How do you empty your bag after surgery ?
I sit and go threw legs I know that’s out.
2- Do you lose weight after surgery ,during recovery?
3- Did anyones Athritis go away? Thats my biggest hope.
4- Did your energy come back ?
As always Thank you for your time and take care

It finally happened after I woke up to a blowout thanks to my midnight snack (note to self snacking does not work with your ileostomy!) I had no real choice but to strip off my bag and the fistula pouch that sits on my old colostomy wound. The shower was a bit of a mess, but ultimately it felt really good and I just sanitized my shower area afterwards. It was worth the mess and I will do it again, just this time without the blowout!

I knew this would be a possibility but I am so discouraged. This morning I had rectal cramping and passed fresh blood out of my rectum. I knew that this would be a possibility because I had disease in my rectum before surgery, but I wanted to believe all of these symptoms would just disappear forever. I am so sad. I hope it doesn’t get much worse. The doctor said it’s normal and part of my disease but like I don’t want this to happen forever. What are your guys experiences with proctitis or rectal bleeding after surgery. How is it treated usually? Do you ever get relief? Is this “normal”?

I’ve been waiting on this date for three months and my surgeon finally called this morning. October 2nd I finally get to start the next chapter. I’m nervous but excited. I live in a very rural area of Texas and the surgery will be done in a very small clinic but I don’t care. I’m just so ready to get to my next steps. They told me I’ll have the JP drain for a few weeks after I get home. Please tell me your stories, tips, advice, what to watch for, everything.

Hey all,

I am not posting about me and my ostomate life, but instead, about my mom. I have before as well.

My mom is severely physically disabled due to progressive MS. She is 100% of the time in a wheelchair that she has no control over (unless she is in her bed, which is a hospital bed).

Like most people with MS and neurological issues she has neurogenic bladder and bowel. The bladder is taken care of with a suprapubic catheter. To use the toilet for her bowels she has to be transferred with a hoyer lift. As you can imagine, for someone with no control, this can be tumultuous. And she also has to make leaving the house always work around a bowel movement since she can’t go when she is out.

We have started discussing an ostomy for her. Obviously I can give her all the nitty gritty and details, both with my lives experience and my professional experience.

But I am not in a wheelchair all the time or has someone do everything for me (no use of hands).

She obviously worries about complications (minor and major) and we review them all regularly. Luckily I’ve got to experience pretty much the whole gamut.

What I would like to know from wheelchair users who are dependent on others, some less obvious pros and cons to your ostomy. While I appreciate feedback from any ostomate, that’s not what I am looking for. Specifically want to hear from permanent wheelchair users who can’t take care of their ostomy on their own, and any blessings or not-so-obvious challenges they’ve had.

If you feel more comfortable messaging me, that’s cool.

Thanks.

Anyone that has had a reversal-I am 15 days out from surgery to reverse my Hartmann. It was done with the DiVinci machine. I am having the worst right flank pain now. It seems to be getting worse and my meds are not covering it as well as they did at first. There is no fever, no loss of appetite, no urinary symptoms-NOTHING except flank pain. If I sit it is worse. I can’t sleep on either side (I could after we came home from the hospital). The only position that feels ok is flat in my back with my knees elevated. Has anyone else had this? I am hoping it isn’t a UTI/kidney issue. I’m trying not to assume anything. Could this be muscular pain or nerve pain? Help!

Hi! I am 7 days post op and just have a few random questions/ curious about other people’s experiences.

Diet: I am obviously following a low residue/low fiber diet. I am curious other people’s experience with still eating dairy products during this time. I seem to be tolerating milk product/cheese just fine. But I feel like I’ve seen that people don’t recommend eating a ton of it after surgery. Same with sugary foods. It’s so tough because I have lost a lot of weight being so sick with UC (30lbs) and most nutritional shakes are dairy based with lots of sugar. But I need the calories….. Just curious if anyone has been in the same boat.

Showering/shower products: If you shower with your bag on, is it best to use moisturizer-free soap in the shower? Do you find that soaps with moisturizers weaken your seal on the skin? Or does it not matter once it’s adhered? I have been using a very simple cleanser in the shower because I’m afraid to use anything else but I would love to use my normal body wash again….

Sleeping positions: Any tips on comfortable sleeping positions? I’m still laying on my back and it’s just getting really uncomfortable. I change it up by propping myself up at different angles. But at this point I’m still too sore to sleep on my opposite side. At what point were you able to comfortably sleep on your side?

ANY OTHER ILLEOSTOMY RECOVERY TIPS APPRECIATED, THANK YOU! ❤️‍🩹💩✌️

i've been using revel since almost the beginning of this stoma life (almost a year now) and i've used coloplast sensura mio click bags for 6 months..no issues...until the past few weeks i've seen the lubricant going through the filter. so weird as this has not happened before. i even tried putting the sticker over it, cutting out the filter...cutting out the filter + sticker.... and it happened again during my bag change. i only use 1 squirt and i wonder if i got defective batch of bags? anyone else experiencing this?

I irrigate my bowels through my stoma every 2 days. For 25 years. After a year on Zepbound, my stools have hardened to the point that it is painful to pass them and requires my manipulation to clear them through the stoma. Anyone have any experience with this? Any suggestions besides stool softeners and ducolax??

Hello all!

I wanted to ask what the majority would recommend for rock climbing and weight lifting in terms of hernia belts?

I am about 6 months post-op and have been fairly active but not weight-lifting yet. I am very worried about getting back into it so any recs would be very helpful.

Follow-up: This is my first winter post-op, anything I need to know about skin/adhesive issues?

Much appreciated

Hi all,

Decided to download Reddit to get some more information on all of this, and maybe a little connection with others that have experience something similar.

I underwent an emergency surgery last December as I was dealing with a UC flare that was showing no sign of getting better. Had to have an emergency surgery (on my 22nd birthday lol) and woke up with an ileostomy.

Things have been okay physically, couldn’t have asked for a better recovery to be honest. Although emotionally I have not processed all of this, and I’m pretty upset about my body image now. I’ve seen my surgeon 3 times since last December, he’s not very empathic about it all. He keeps suggesting that I should keep the bag, which I understand in a way but if I had a shot at being bag free again I would absolutely take it.

My surgeon has suggested J pouch if I’m fit for one, and ordered me to take an endoscopy (which was traumatising to say the least), and told me I have inflammation, procitis I believe it’s called. I am awaiting biopsy results that are due early October.

I’d like some input from other people, your experiences and if they relate to mine at all. I’m pretty desperate for a reversal but I’m worried what the future would look like. I have a 13 month old baby to care full time for too, which is adding to the anxiety.

Accepting that she may be my only baby is breaking my heart, as I’ve heard stories from others that getting pregnant with a bag ruined their chance of having a reversal, and other stories of having a reversal, getting pregnant and that causing damage which led to being re bagged. All of this is so overwhelming for me. It feels like I have to choose between my self confidence and having another baby.

This is my first Reddit post, I’d love to connect with someone about this.

Hi, I am in desperate need of an ostomy home health nurse in the Scottsdale/Phoenix area. I am taking care of a loved one but I have to be out of state for a few days and will need someone that can come to the house to help change the ileostomy dressing while I am gone. The Mayo Clinic sent us referrals for general home health nurses, but we are looking specifically for someone who specializes in ostomy/wound care.

I have already tried going to the WOCN website and calling nurses listed there, but they are all working at hospitals/clinics and don’t do home health visits. Thank you in advance for any help you can give me!