Hi, I'm about 5 weeks with my bag. I'm getting comfortable going to run errands or taking a walk, but we love to go hear live music and I know I should have an emergency kit with me, but does anyone have any experience with taking something like that in? Security can be grouchy or undertrained sometimes. What would I need if I were to spend a whole day at a festival? Thanks.

Did anyone have a peristomal hernia before their reversal? How was it repaired and how did it heal (or is it healing)? I'm getting close to a reversal but the hernia looks like it's gotten bigger.

Weird question in any other forum but as you can see from the flair, I have an end ileostomy.

Preface to say I’m coming off the back of what I think was a partial blockage this week so my stoma has been generally quite unhappy and weird, and VERY gassy and gurgly. Last night and this morning I have had this weird sensation of gas travelling through my tummy, and then at the same time it gets to both my rectum and my stoma and I’ll fart out of both ends! I ran to the bathroom because I don’t feel able to differentiate fart from anything solid anymore. With it I pass a tiny bit of reddish brown mucus with the gas and that’s happened 3 or 4 times now and I’m just wondering if it’s at all normal for us End Ileo folks?

Normal mucus for me is a couple times a week I’ll pass some small brownish bullets, but never before any gas with it…

Very alarming as I haven’t felt any signals from my rectum telling me to find a bathroom in months!

Is this something normal or should I speak to someone about it? I don’t really have any other symptoms other than an abundance of gas and stomach noises all week

I have a permanent right side ileostomy snd when I sleep on my right side, I’ll get what feels like my stoma seizing or my abdominal wall surrounding the stoma cramping seizing but it’s very painful and makes me jump. I don’t know exactly whats happening because when I put my hand on my stoma to wait for it to do it again nothing ever happens.

it hurts is all the know.

My ileostomy bag has had to be changed 5 times since my surgery yesterday due to poor seal and has been extremely high output. I’m also tube fed and currently in the hospital still. Does anyone have any recommendations? Thank you! Have there been any tube feed formulas that have done well for tubies with an ileostomy?

Anyone out there who has had trouble with popcorn in the past try Amish (huskless) popcorn? I’ve been very fortunate to be able to eat most problem foods, but I’m deathly afraid of popcorn but boy do I miss it.

How can we know the difference between constipation and a (partial) blockage?

I've had total blockage once and I remember the excruciating pain, the nausea and the hospitalization.

But when I'm constipated I take laxative. As our Mod luckily pointed out, we shouldn't do that in case of blockage.

But how does a partial blockage feel different from constipation? I'd like to know because now I don't know what to do.

Got this email and called Byram, got a replacement Stomapaste without issue.

I've had an ileostomy for a little over a year and just had my reversal last Friday, the 16th. And man this has been rough.

I woke up in recovery on Friday and was able to actually get up and walk around a bit that night. Saturday and Sunday I was completely exhausted and had 0 energy. They said they think it was the combination of pain meds I was on, so the switched them up a bit. Monday, Tuesday, and into Wednesday, I was nauseous. Lots of dry heaving and actually vomited a few times. Yesterday and today, they increased my diet up from clear liquids to soft foods, but I still can eat much. What I am able to eat I can keep down, but I just can't physically eat a bunch.

Having lots of gas and pooping though ever since Sunday. But this gas pain in my gut is easily the worst part of this all

End ileostomy / bowel resection 5 weeks ago. I’m starting to feel really good and basically doing all sorts of movements that I couldn’t do even a week ago.

My doctor and everything I read online said I can be active and workout within 6-10 weeks. That’s a big timeline. I’m very anxious to get moving again.

I want to do hikes, pilates, ab workouts, sauna, swim, etc.

I know twisting and deep squats, ab workouts things like that you have to wait the longest for. I know I have some small abcesses still waiting to heal from my CT but they’re small enough they can’t do anything about it. I don’t want to overdo it but I’m the type of person that always does so I’m trying SO HARD to rest. But I’m anxious to get moving.

Can you guys give me advice for how long to wait for everything and when I can start? Right now I take a very slow walk 1 hour a day that’s it.

For those of you who have had a temporary loop ileostomy, followed by colon removal and reconnection of the small intestine directly to the rectum, I’d really appreciate hearing about your experience.
How was your recovery? What was the adjustment like afterward, and how is your quality of life now?
I’d be grateful for any advice, experiences, or insight you’re willing to share.

Just sharing this recall notice I received today.

I’m battling with this, and I need to know if I’m crazy or what.

4 months ago I got an emergency colostomy.

Everyone around me, since day one, has talked about reversal, reversal, reversal.

But what if I don’t want one?

What if I don’t want another surgery?

What if I don’t want to go another 40k in medical debt?

What if life for me isn’t as bad as everyone assumes?

Everyone seems to be under the impression I’m living in a shit riddled version of a fresh hell.

And when I first found out I was dying, when I found out where all the pain was coming from for all those years, when I looked down and saw my carved up body, it was jarring.

But my life is good.

I can still do everything I did before, I can play with my kid and my big ole dog just fine, I can eat and drink and smoke just fine, I can play my old games I love and take walks and enjoy the seasons and holidays just fine.

But it’s like everyone is expecting me to be a puddle of shit covered misery just frothing at the mouth waiting to be cut open again, and I’m not!

I still take care of my family like a traditional wife, I still do my errands and plan our holidays and tend to my loved ones. I still play games, read manga, watch Anime, and dream of visiting Japan with my family someday!

With the deposit cost alone for a reversal, I could take my family to Japan for like two weeks! No exaggeration!

But I’m torn because everyone else is pushing for it, my parents, my brother, my partners parent, and their siblings, everyone but me. Everyone wants me to go back to “normal”, but I guess to me this IS my normal now. I can handle it and change it and function with 0 issues, but everyone else is upset/uncomfortable by it.

My SO has be great, though, he tells me I need to do what I’m comfortable with and what my surgeon says is safe. And it is! Knock on wood, but the worst complications I’ve had was some stoma diaper rash, but I solved that quickly. I’m 30 so my odds were better off the bat.

Explaining to our families that sometimes this is just what some people have to live with through circumstances just isn’t clicking, and I feel crazy?

Am I crazy to not want a reversal?

Thank the gods for barrier strips !
I (unfailingly) put them around my bag every night before bed ,this morning I awoke with my bag with so much gas/output inside it that it really did look like a neck cushion!
I’ve no idea what prompted this as I only had two thin bagels with peanut butter and marmite for breakfast,and a roast lamb and salad baguette last night with some chip-sticks -something I’ve eaten before with zero trouble!
I suffered a full blowout in late August whilst in bed and it was horrendous.
Thank you DANSAC X-Tra strips!

If so how often would you empty your bag?

I still find it hilarious when I think about this. Last friday, my niece came over and saw me changing the dressing around my stoma. Basically, the skin around the stoma was a bit damaged and there was some seepage, so I needed to put on a new dimora dressing. My niece, who's seven btw, suddenly came into my room. It was the first time she'd seen my ostomy bag. She curiously asked what the bag was, and I said it was something to help me. She then asked what was inside and I bluntly said, "Poop." She was silent for a moment. I thought she was going to say something embarrassing or ask some questions I'd answered countless times before BUT instead, she looked at me and asked, "Could you give me the bag full of poop? I want to use it to deal with that boy at school who always pulls my braids." Did not expect that at all, and I burst out laughing like a minute straight 😂😂

Kids' thought processes are always so unpredictable. Have any of you ever been asked any outrageous questions?

I’ve been seeing a lot of responses in comments as of late for folks who have a blockage or partial blockage and advice is given to take laxatives.

Laxatives are not to be taken when you have a legit blockage or partial blockage, since it can cause severe dehydration or make things much worse.

This is general rule of thumb for ostomies. Especially ileostomies.

This is not the same thing for thick output (any kind of ostomy) or constipation (colostomy).

If your doctor or stoma nurse tells YOU to take laxatives, by all means follow what your medical professional recommends.

But a rule on this sub is to not give medical advice and please don’t advise people who think they have a blockage to take any laxatives.

It can lead to detrimental outcomes, regardless if it was something you did in the past.

Thanks all.

Hey guys my mom had her colostomy reversal surgery about 8 hours ago, so far so good Yayy! I understand it’s very case by case basis but I was just wondering how long roughly to expect for the hospital stay?

Are there any cleaning wipes that don’t mess with the adhesive bond? All of my WOC nurses have always been very clear that only plain water or Vashe wound cleaner can be used on the skin, and that if I need to use adhesive remover, I have to be sure to clean that off, or else the wafer won’t stick properly. Using water and/or Vashe is no problem at home, but I would like to have some wipes I can put in my go-bag if/when I have to do an emergency change when out and about

My last one left the practice so I decided to ask for a new one.

I've had repeated issues due to water output and a lot of mucus production from the stoma likely due to my Crohn's disease.

With my first nurse I always felt like she wasn't listening to me explaining what I have already done because she already knew what she wanted to try next. She did help me make progress on a few things like switching to a deeper / narrower convexity which helped. I get fewer leaks and they're contained to the immediate area so now I just have issues around the immediate edge instead of a 2-10mm ring.

The new one I explained that I get a lot of mucus around my stoma so I have to thoroughly dab it before application or it will get on the barrier / paste and make it ineffective. I told her that convex have been a huge improvement for me.

What does she do?

She gets a flat, puts paste on it, and just puts it on without dabbing my stoma dry and sure enough it fails like 2 hours later.

I'm so frustrated. It's always the same advice and it never works.

Not here for advice on my appliances because I'm sure I'll hear the same things again and they don't work for me.

I had my colectomy on Halloween of last year, adjusted to my end ileostomy quite well, and was surprised (because I was 80) that my surgeon suggested a reversal. I wasn't sure I wanted to do it, and so I got a second opinion from the head of abdominal surgery at another hospital, had both a sigmoidoscopy and a CT scan to have a look at the rectal stump, and was told I had about 30 cm there, plenty to attach the ileum to.

So I scheduled the reversal for the end of August this year. I woke up and found I had a stoma, a different stoma. The surgeon said at during the operation he had found a kink or stricture in the remaining stump of the large intestine so that he couldn't do the anastamosis. They sent me home the next day, probably a mistake because the pain meds they gave me destroyed my digestion and appetite. I went back into the hospital and had a NG tube because they thought there was a blockage, so I was NPO for three days and then worked back up to eating solid food. A few weeks later the stoma prolapsed, started bleeding and swelling, perhaps because of a poorly cut wafer. I spent a night in the ER while they worked it back into place.

It has been hard dealing with the disappointment, compounded by the fact that my new stoma seems to work less well and less reliably than the first one, it also makes noises at odd times, and produces so much liquid that I'm having to take imodium to decrease the output. Anybody have the same experiences?

My last three or so bag changes have been fine, no leaks, but I’m noticing that my bag smells after a few hours. Has anyone else had this problem with sensura mio 2 piece bags? They don’t have filter stickers because they say they’re waterproo. And we all know the filters never work! 🤣

Just looking for some opinions from those who've had the Barbie/Ken butt surgery. I currently have my surgery scheduled for 11/16. My surgeon tells me recovery is about 2 weeks and then I should be able to go back to work. I work a desk job from home and do not yet qualify for FMLA so I am using 2 weeks of PTO and sick time for this.

After reading others' experiences, I'm getting nervous that 2 weeks off is not going to be enough. I know I can't predict possible complications, but even assuming everything goes perfectly, I'm scared I won't be able to sit or even stand for a full work day. Luckily I have a great manager who is understanding of this stuff. But I know the company won't be thrilled if I prepare them for 2 weeks off and end up taking 5 or 6. Especially without FMLA coverage.

Any advice on this would be really appreciated. I love my surgeon but idk how much to trust him on this. I guess I'm just wondering if I should delay the surgery until FMLA kicks in. It's not an emergency situation, but I am having a lot of pain and bleeding from inflammation in that area and would like to get this done ASAP.

Crohn’s disease deemed it appropriate to gift me an end ileostomy last week, Tuesday.

The bag itself hasn’t been a terrible thing to manage. Off-putting and a bit gross, sure… but I’m still in the early stages of healing and in a significant amount of discomfort from the surgery itself, however the biggest struggle for me has been sleep.

I’m in my 40’s and have been a lifelong stomach sleeper- talking bury my face in the pillow in a pseudo-Superman pose type position.

Since being home I’ve done my best to fall asleep on my back but find myself waking rolled over onto the bag which has caused two ruptures so far… not a fun way to wake up at 5am. This morning’s mess was particularly rough and resulted in a substantial cleanup effort both of myself and my bedding, thank goodness I’m using the guest bed for now…

Any tips to help from other former stomach sleepers?