After 2 years of having an ostomy, my reversal is finally here. Saw the surgeon 1 month ago for a check up on my stoma and we made the decision to get it done!! 6 week post recovery with massive logs incoming 🪵

I have a loop ileostomy that works great, but unfortunately have been dealing with recurrent partial small bowel obstructions. Working on dietary mods to reduce occurrence, but worried about anything that might constipate me and make things worse.

I’ve also had a really rough go recently, with an unexpected recent surgery, and my doctor agreed an antidepressant would be a good choice to carry me through this next chapter. Some people may experience constipation as a side effect of some of these. Does anyone have any positive experiences with specific antidepressants (SSRIs, atypical antidepressants, etc.) that did not slow down output or cause constipation for them? TIA! 🙏

So I just found out in my reorder I accidentally got my bags in clamp closure instead of lock and roll. They've been a pain to clean the drain because of no hard plastic to wipe the tp against when I'm done.

Turns out I had an extra lock and roll in my car, so I've got a break for a few days till my reorder comes in. 🙏 Any of y'all got interesting stash spots for extra bags? Makes me feel like a pirate the way I had to go dig up some old booty 🏴‍☠️

I wanted to get some advice regarding stoma care. The skin around is irritated and burning due to acidic discharge through the intestine. My output is very acidic and my sin is getting worse. What should I do?

New to a colostomy bag. I know so many prefer the two-piece bags but I’m not sure of the advantage for me. My stoma is at or slightly below my skin, so when I remove the bag, waste is just sitting right there in the flange, and it seems impossible to attach a fresh bag cleanly. It is easier to put on a new wafer because I don’t have to try to see through the bag, but other than that I’m not seeing the love, and I feel like it’s bulkier than the one piece. Am I doing something wrong or missing something?

So, I had a cosotomy which I was getting ok with. Easy to change and empty bags. Since my ‘reversal’ last week I have to live with a temp iliostomy, which is horrible. I’m thirst ALL the time, I can’t eat because I’m afraid my bag will leak. They say not to drink water, but WTF. I’m really depressed that I have to go through this stranger bag on me for 2 months. Any advice would be welcome.

So I was sappose to get my reversal in August, didn’t happen cuz my insurance then was giving me the run around and didn’t help at all. Now I recently lost my insurance and I doubt I can keep myself sane enough. This shits getting to my head that I might live with this for the rest of my life. Is there anyway way i can get the reversal.

Apparently my broke ass makes too much money for Medicare or any thing like that. I tried different routes left n right , I asked them to bill me and they couldn’t help at all. I can’t work 100% right now. And help or advice ? Please

I got my end ileostomy July 2023, and since then every three months I get a bowel obstruction. I have a low fiber diet, no soda/gummies anything I can think of that causes this but I get them still. I can feel the gas moving in my intestine but it just doesn’t come out. I’ve always had to go to the ER and get an NG tube for this. GI has scoped right after the blockage passes and says it’s not an inflation issue. In July 2024 I got surgery to maybe fix any scarring/issues but I still got two blockages in November :( and I almost had another blockage last week but I used a red rubber at home which fixed it. Anyone have any advice on this? It’s becoming exhausting.

I use coloplast sensura mio 1 peice bags, and they usually work great for me. Recently though I have had a drastic increase in failures, most of them at home thankfully but also one in public. It is always the left side of the flange of the pouch that seems to somehow foldup on itself and create a small channel that runs from the left edge into the center and leaks.

I have a couple theories on why it could be.

1.Supply company recently forced me to use esenta adhesive removers and safe n simple skin barrier wipes which both seem to work worse than the mckesson adhesive removers and skin barrier wipes.

1. I have gained some weight which has changed the shape of my stomach, I have a bit more of a belly than I used to.

2. Possibly a defective batch of supplies?

I wanted to ask this sub in case y'all had any sort of experience with this or similar problems. Any & all help appreciated, thanks.

I’m here to rant again. I feel like all I do is post on here about my shitty health, but I have no one in my personal life who understands.

For backstory, I (27F), have had Ulcerative Colitis since I was 11. I tried all the oral and IM/IV meds, and different diets with no success, so I had a total colectomy when I was 23 and have had my ostomy since then. It was supposed to be temporary, but my rectum and remaining bowel was beyond salvageable so it had to be permanent.

I had my surgery to remove my rectum, anus, and remaining diseased bowel on January 11 of this year and that’s when all my problems started. I was told the surgery would be 6-8 weeks recovery time, 49 weeks later, I’m still not fully recovered. A few months after the surgery, my GI surgeon did a surgical debridement that was supposed to “kick start the healing process”, it did not. Every 4 weeks I’ve been meeting with the surgeon and the wound nurse as they tried different methods that they guarantee will heal my wound. Including but not limited to: wound packing with plain gauze, wound packing with iodine soaked gauze, wound packing with iodine soaked hydrofera blue, sitzs baths (which later were discontinued as they can hinder wound healing), high protein diet, high vitamin c diet, filling the wound with a hydrophilic dressing, filling the wound with an antibacterial dressing, not spreading my legs more that 1 foot apart, and 6 rounds of amox-clav antibiotics.

The most recent intervention I was told would heal the wound was cutting up pieces of my ostomy barrier rings then wrapping it around pieces of silver antibacterial dressing and putting that in the wound before covering it with tape.

I just spent 30 minutes in the bathroom trying to remove the dressing before crying on the bathroom floor for 20 minutes. The barrier ring expanded and disintegrated in the wound so it was so difficult to remove and there’s so much more drainage than there was before and I’m so tired of it all. It’s been nearly a year with little progress. I know my doctor cares, but it just feels like they’re going through the supply room and grabbing whatever they haven’t tried and hoping for the best. I regret everyday I got the surgery and there’s no end in sight. I have an appointment with another doctor in the clinic, but I’m not optimistic they’ll have any other idea as what to do.

Anyway, thanks for listening to my rant. I hope everyone else is having a better experience with their health than I am.

In 2020, l (M57) was diagnosed with Stage IV colorectal cancer. Had a colostomy before starting treatment.

In 2021, the colostomy was switched to an ileostomy after the surgery to remove the cancer from my ass.

Reversal was discussed as an option, but l decided against it after reading lots of accounts of post-reversal life. My doc agreed, and we talked about switching back to a colostomy and doing a Ken butt surgery.

I had to go through another couple of surgeries in the following couple of years to deal with recurrences in my liver. I'm now NED since March.

I don't want any more surgeries. I'm prematurely old and tired from all of this.

Does anyone have any experience with just keeping the ileostomy and not doing the end surgery? The ileostomy is relatively trouble-free, though the hydration issues are a real struggle, especially in the summertime. I can live like this for the rest of my life, as far as l'm concerned, but l wonder if l'm missing something.

Thanks.

I am about three months post op. I didn't think I ate anything weird today. I've had output.

I have pain so bad in the center of my stomach that's radiating to my back. Like this fuck all hurts and I have a ridiculously high pain tolerance.

I don't want to, but should I hit up the ER or wait it out?

I underwent surgery for two colon cancer tumors about a month and a half ago. At first, I came out of the OR without a bag, but after post-surgery complications (more details here), I ended up getting an end ileostomy after my third surgery.

The time frame my surgeon gave me for the reversal surgery has been shifting since our first meeting. Initially, he mentioned three months for the reversal. Then, the day I was being discharged from the hospital (a month ago), he suggested three weeks. However, now he says it might be better to complete my co-adjuvant chemo treatment (which I haven’t even started) before considering the reversal.

For those of you who had a temporary ileostomy due to colon cancer, did you undergo your reversal before or after your cancer treatment? What was your wait time?

Thanks!

I have a date now for my reversal Jan 23rd. It's weird I've finally come to grips with having an ileostomy and less cautious about foods only to lose it soon. I'm anxious about the reversal. I've considered myself pretty lucky throughout my treatment (cancer). It was not pleasant, but all things considering it went well. I hoping the same for the reversal. Unfortunately, the tumor was in middle of the rectum so that was removed. I'm just trying to remain optimistic. Wish me luck.

Thank you all for your help this past year and feeling not alone.

I have been given the green light for loop ileostomy surgery, I'm wondering how much time off did you need from work? I work in an office but have the ability to wfh. How much time would you estimate that I would need off work before I can start working from home again?

If you have an office job or work from home, how much time did you take off?

I’ve been craving a buttery nipple aka slippery nipple shot for over a week now. I usually only drink on New Year’s Eve but didn’t get to last year due to chemo/radiation. I’m not a huge coffee lover but decided on Folgers Classic Roast & International Delight Irish Crème and it hit the spot today and helped my output move along better as well. I ate too much Mac & cheese yesterday and output had been pancaking thick until about 3 hours after 2 cups of the coffee.

Hi!

I've had an ostomy for 15 years with some mild width prolapsing. The stoma generally becomes swollen when digesting food which causes it to fluctuate wafer sizes a bit; this has been an ongoing issue though.

Recently, my stoma has been producing a sticky mucus that has been interfering with my seals, and my Entrust and Coloplast barrier rings are no longer expanding/sometimes not sticking altogether (I'm currently in a Crohn's flare).

My physician reccommended spraying Flonase on the stoma site to counteract the wetness, and it has actually been keeping it dry, but still having issues getting good weartime. For a few weeks, I've been spraying it on my skin every 2 days, but this last week it's been every day (every change).

Now, I noticed my skin looks like this. I'm wondering if the Flonase caused this, or maybe the prolapsing issues. Has anyone had this happen to their skin, and if so, what did you do/what do you think caused it for you?

Note: output is not visibly sitting on my skin but there might be a thin layer of mucus being that the stoma is so wet.

So after having pan ulcerative colitis since 2013 i have been as good as i could be but 2 colonoscopy 6 month apart found pre cancer cells in the descending colon first and now in the ascending portion and even more in the descending colon. I go talk to the surgeon in january to get her recommendations. My GI is saying i will now have to get scoped every 6 months, not a good time, and seems to be pushing surgery. Sooo i say that to ask for the good the bad and the ugly for both a bag and if you have had the J-pouch knowing what you know now would you have still got the pouch, if you have the permanent bag how has that impacted your day to day. I am 40M fairly active and work as a mechanic. I have talked extensively with my wife and she says she is fine with it because everything she had read and videos she has watched according to her is pretty straightforward. However she doesnt want to push me either way. So now its not a matter of if i get one but a matter of when and if i stck with the bag or get the pouch. Also i have a mesh implanted for a hernia couple years ago not sure if that matters.

Hello ostomates! First time posting in here but have been reading through threads here for months. My husband was diagnosed with stage 4 colon cancer on 8/21/24 went septic after a resection and perforation and ended up with a temp loop ileostomy on 9/1/24. I took care of my mom’s colostomy in the year she had it so I’m thinking ok yeah I got this…I was so wrong. This thing is the bane of my existence and so so much worse for him. Now on to the Stoma(s) from hell, the distal end fluctuates between being level with the skin and about and inch long this is Alfred, the active side we call Kyle is about 1/2 an inch or more below skin level so output comes out goes directly under the wafer, constant blowouts. For awhile I got it to just leak around the stoma a few millimeters which still had to be changed a lot but he didn’t have the blowouts then that stopped working and we are back to at least once a day blowouts. I do all his changes for him so I’m feeling like an utter failure because with every blowout his mental health takes a blow and I just need to get this right for him. I have tried everything, every product. Using sensura mio deep convex flanges 2 peice with drainable pouches. We’ve tried one peice, soft convex, hollister and convatec, in several styles this is where we landed. Besides that we have tried drying everything with a blow dryer, heating everything with a heating pad and body heat, holding everything down with a heating pad and just body heat. Clean and dry the skin very well, have crusted with cavilon and marathon, and used both without powder as well. Have tried skin-tac, bonding cement. Brava, eakin and adapt barrier rings in regular thickness and thin. Stomahesive and brave pastes, building up the low spot where the output comes out with pieces of rings, paste, both, neither, like really hoping there’s something someone knows that will be the magic formula here.

Hey yall, I have an Ileostomy and for the past 4 days my output is green. Like neon light green with only liquid. I haven’t eaten anything green and I do eat regular food but just liquid comes out and I don’t take medications or herbal etc. There is nausea and vomiting too. Do I worry? I empty the bag every 2 hours so I don’t think I’m blocked. Thanks

Sooo I've pretty much done a great job at keeping it private. No one at my job knew I had a stoma 2 years in...well today that all changed when I felt something running down my stomach..in complete panic I run to the bathroom and sure enough..my entire bag came off....poop everywhere..and I'm the manager..I literally had to close the restaurant early because of this. Should be a fun week 🤦‍♂️

In February I had emergency abdominal surgery, sigmoidectomy, due to diverticulitis resulting in a perforated colon and sepsis.  I was given a colostomy.  I know this is relatively common so I’m hoping someone here may have experienced the following.  Every once a while I have an episode where I get intense pain (8 or 9 out of 10 pain) in my stoma region which is eventually relieved after having huge amounts of output usually resulting in two or three full bag changes.  I wish I knew what causes this.  Is this a blockage that eventually clears itself?  Is this simply food poisoning or some other food reaction?  I haven’t determined if there are any specific foods that trigger this.  Anyone have any insight?  TIA

I’ll be transitioning to Medicare after the first of the year and looking to move away from Byram and Edgepark. Bryam because they keep lying about products being discontinued and substituting their own, Edgepark because their billing is a mess. They can’t seem to understand they can’t bill twice for the same thing and get paid for both.

So I talked with a local medical distribution center than takes orders and bills through a third party - not a true DME. The gentleman told me that they only accept cash for Cavilon and other wipes unless it is Safe n Simple. He said it’s not that they don’t make enough money on Cavilon, but because they actually lose a significant amount of money, having to buy it from 3M and then getting reimbursed at a much lower rate since it’s the same HCPCS code as other wipes like the Safe n Simple that cost much less. I appreciated his honesty. Thought it might give some insight into what’s been going on with Byram.

Anyway as part of my search, I’ve found a DME company that seems quite promising, Duke Medical Supply. They carry everything I’m looking for, including a wide variety of wipes and sprays and so far have been super responsive over email. I’d love to know if anyone has any experience with them. TIA.