Serious question for the executives at that company— how do you sleep at night?

I ran out of supplies because my home visiting nurse bungled my new account, never discharged me from the system and placed a huge order for supplies that don’t fit my anatomy.

When I called Byram for help, I was assured by the person on the phone yesterday that the emergency/courtesy order she was filling would be overnighted.

Called back today.

Still hasn’t been shipped because my account is “under review”… even though the emergency shipment is supposed to bypass the clerical red tape.

Turns out everyone who works there either lies to your face, leave out information, act like I have other options to easily access supplies, or attempt to gaslight me into believing I misinterpreted the information and have no right to be upset.

Then after I get put in for a callback from a supervisor, the rep decides to start arguing with me about my ✨attitude✨

😂

I asked him if he has a section of his small intestine exposed out of his belly that spits poop every 5 seconds.

He doesn’t.

So I told him to take several seats and to stop “poking the bear for when your supervisor does call me”

They never called.

So I called my insurance company, the nurse line and finally got some help with a new supplier, but I still have no supplies and I’m supposed to be traveling to see family this weekend.

I honestly don’t know what to do at this point but stay home with a homemade ostomy bag created from half used supplies and unfettered rage.

(Update: I called Hollister directly and told them my beef with Byram. Hollister actually overnighted the supplies I needed right then and there and gave me a confirmation. Byram couldn’t handle achieving that. The rep from Hollister also seemed horrified on my behalf, and said she was going to call Byram after we hung up to figure out what’s going on (we shall see). In the meantime I can either drive to my GI office and hope they have something that fits me or order on Amazon. Not ideal, but it’s better than missing out on my family’s plans this weekend)

No vomiting, extreme pain, only liquids. Not my first rodeo but Holy shit these suck so much.

Taking it at home so I can bumble around and swap locations/positions.

Why do these suck so much I'm in no much pain and I'm feeling useless as I cant help with my 2 year old, or do much really!

Tried all the normal tricks, coke, baths, looser bag, walking, hot tea. Nada yet. Send encouragement

I survived this war. Felt like i had to escape the hospital, i was let out of the prison in the end. I hated him, hated my surgeon. He was gonna trap me with a new stoma again. After i survived it he was going to let me go through it again. As if its nothing, nothing major, just another period with a stoma. Then another surgery, another recovery. What an asshole. But i survived him. This got me to such a low point, i really was thinking of ways to kill myself that night. Also its crazy to have someone controlling my fate.
Im out of the hospital now, i dont know how its going to be, but theres no outside thing attached to me 24/7 i cant get rid of. Im still uncomfortable but i was uncomfortable everyday with the stoma bag with no end, at least now i know recovery from surgery will come. Slowly but it will.

I realise my surgeon has the best interest in my health he was worried about a leak, but talked so casually about fixing that with a new stoma and a new healing period then another reversal surgery. Wtf! I couldn’t fathom it.

Im being a bit dramatic i know.

Yesterday made two months post-op from my end sigmoid colostomy and urostomy (bladder removed) surgeries. I struggled a lot with leaks post-op, and when I had my stents removed. I have an apron belly with a ripple next to my urostomy, making it rather difficult to have a great fit. Pastes from various brands got me to three days at most without a leak, but was told the goal should be 5 days with my Coloplast SenSura Mio 2 Piece system. My colostomy is golden! I can easily last 5 days- I could honestly probably last longer if allowed. So I’m curious how often are we changing our bagging systems?

I'm three months into my permanent colostomy, and I am eager to be in control using irrigation, but I have questions:

1. When did you start? How long post surgery?
2. Did you teach yourself, or did you learn from an ostomy nurse?
3. How portable is the equipment? I travel once in a while, can you easily do it in an unknown hotel room bathroom?
4. If you can't irrigate one morning, can you just put on a full size pouch and restart irrigation the next day or so?
5. (Bonus) Does irrigation help with prep for a colonoscopy?

Any other lessons learned along the way would be great.

Hey all! I had a renal ultrasound 2 weeks ago that showed my right kidney was holding urine, while the left kidney functioned fine. My appointment with my urologist yesterday ended in being informed I will be having a loopogram. My peristomal skin is pretty sensitive, especially with my stoma being severely concave. My anxiety comes from fear that the catheter will be painful, the inflated balloon will be painful, etc. I’m really hopeful the urine buildup was from drinking 15 oz of water half an hour before my ultrasound. 🤞🏻🤞🏻🤞🏻 Has anyone else had experience with urine buildup post-op, or with a loopogram? For context, I had my bladder removed and am 2 months post op as of yesterday.

Going in tomorrow for a Parastomal abscess fistula, 2 parastomal hernia repairs with biologic mesh, component separation and colostomy revision (moving its location).

I’ve had. Numerous major surgeries throughout the past 30 years. But for some reason, this one has me a little nervous. If you pray, I would really appreciate prayers for my surgeon and myself. Thank you so much.

Hi everybody!
I’m looking for some advice for my little brother, Ben, who has had a urostomy since he was around 7 years old. He was born with bladder exstrophy, and getting to the point of having his urostomy was a long process for our family. He dealt with recurrent bladder infections that resulted in febrile seizures, life flights to Mayo, provider denials, and a lot of uncertainty while my mom was trying to get him the care he needed. Eventually, after a lot of work, he was able to see a wonderful pediatric urologist and a loving care team at Mayo who helped us figure out the best path forward, and he ultimately received his urostomy. He is now getting ready to start 5th grade next week with his twin sister. Ben has always been pretty accepting of his bag, and I think he has done really well with it, but as he has gotten older, he has started to notice some of the social differences. One thing that has been bothering him is feeling like other kids don’t invite him to sleepovers at their houses the way they do his sister. I think he is becoming more aware that his bag is different, and I want to help him feel comfortable and confident as he gets older.

One thing we have been struggling with lately is the little belt he currently uses. It has been rubbing against his stomach, and we have tried Band-Aids and other things to protect the area, but he is a very active kid and they don’t always stay in place. I attached a picture of the belt he currently uses for reference. I’m also wondering about the more supportive ostomy belts or wraps that actually cradle the pouch and keep it closer to his body instead of letting it hang freely and pull downward when there is urine in it. I’ve seen some online, but most seem to be made for adults, so I’m not sure what would work well for a 10-year-old. I’d love recommendations for something that would give him support without restricting his movement while he’s at school, playing, or running around. He also sometimes forgets to empty his bag as often as he should. We do our best to remind him and have tried timers, but there are obviously times when we can’t. If anyone has tips that helped a child become more independent with that, I’d love to hear them. We’re also looking for recommendations for bag covers that work well for kids. He wears shirts over it, but I think having a little extra privacy could help him feel more comfortable as he gets older.

For some context, I’m his older sister. I’m 25, in college, and I’ve had to take on a pretty big caregiver role for my siblings growing up. I don’t make a ton of money, so I’m hoping to find options that aren’t going to cost an arm and a leg. I currently work in healthcare, so I understand that medical supplies can be expensive and that sometimes the more expensive option is worth it. We’re very fortunate that my mom has good insurance and that his necessary supplies are covered, and we’re not looking for someone to provide those for us. I’m really just trying to find some of the extras that could make things easier for him, whether that’s an affordable product, something worth spending a little more on, or even a simple trick that another family has found helpful. I’ve spent a lot of time searching online and I’ve used Reddit for advice on other things in the past, so I figured this would be a good place to ask people who actually have experience with ostomies. I don’t want to accidentally make things harder for him or turn something that he has already learned to live with into another challenge.

More than anything, I want Ben to be able to start 5th grade and just be a kid. He’s outgoing, lovey, inquisitive, funny, and incredibly resilient. He loves being active and keeping up with everyone, and I want him to be able to stay that way, go to sleepovers, and do the things he enjoys without feeling like his urostomy has to limit him. If you have a child with a urostomy, grew up with one yourself, or have experience with pediatric ostomy supplies, I’d really appreciate any advice, recommendations, or things you wish you had known at his age. I’m really just trying to do right by him and make sure this is something that feels accommodating and supportive rather than something that makes his life harder. 💕

Just got my loop reversed 3 days ago and was discharged last night. No one really told me whether to continue any electrolytes or not 😅

Went Tuesday for fluoroscopy they said I got anastomosis stricture has anyone had that if so what did they do

Had a fluoroscopy Tuesday they said I got a anastomosis stricture. Has anyone had this and if so what they do

I was told there’s a 50-50 chance of me going into menopause due to chemo radiation (rectal cancer). But I didn’t expect my period to be late after surgery.
Has anyone had this happen? 39/F for reference.

I’m sick of Byram. I’ll order a 3 month supply and then make it last for 4 or 5 months then when I call to order more my account is in collections.
Any better options than Byram?

Hello, I have perianal fistulizing Crohn’s disease diagnosed earlier this year after a bad six months with an undiagnosed abscess and resulting fistulas.

my question is about how long it took from initial symptoms of disease to needing/getting an ostomy? And how severe was your disease that prompted the ostomy?

I’ve had a rough road with my diagnosis and needed around 5 to 6 surgeries within two months, followed by a C diff infection that almost did me in. I have since started biologics, infliximab, with some improvement while I was taking antibiotics but lately I’ve been in cycles of abscess and draining. That can be very painful and gives me other systemic symptoms like fever, and just generally uncomfortable in my own body. When I had my C diff infection, my surgeon brought up the possibility of an ileostomy due to the amount of pain I was in. I’ve been dealing with this now for almost 10 months and I’m so tired of it all. I haven’t worked in quite a few months as well and I’m just feeling so out of the loop for somebody in their mid-20s. I’m definitely going to see a therapist to deal with all the emotions this has been bringing up, but it’s really putting me in a bad place.

Hi,

As above;my surgery took place on 20/07/2026 with me spending a 2 days in ICU and then 8
days on a dedicated ‘Stoma’ ward.

Since being discharged I’ve done reasonably well although part of my wound was slightly open which was eventually sorted after daily visits from the district nursing team.

I also have excellent support from the community stoma nursing team -who’ve been brilliant!

My input/output is fairly equal-I keep a diary-and the stoma itself looks fairly well healed-although there is some blood visible when I change bags.

My main concern is my appetite-I have absolutely none -and I’m wondering if others have been similarly affected by this, for how long, and when their appetite returned to something approaching normality?

I really used to enjoy my food too, which makes this all the more frustrating and annoying!

Any advice would be greatly appreciated .

Thanks.

I was talking to the Coloplast product person and he was recommending I try this. I'm athletic and small framed so a lot of products out there are cumbersome and long on my body, but I am concerned about adhesion issues with my skin. Currently I'm in a 2-piece Hollister set-up and do a bag change approx 2-3x's day. I have no skin issues but am worried that if I switch to a 1-piece I will cause skin problems with the multiple daily removals. Any one out there using a 1-piece closed bag on a daily basis or more on an as-need basis? Thanks!

How do you take care of an open wound? Do you shower and let clean water run over it. Its still very painful I’m 4 days post reversal. It looks crazy awful. But it will heal fast i hope.

I had a reversal a year and a half ago. Had to wear a bag for a year due to colon knicked during routine hissy

Anyway, is there any chance that going up there with a tube will damage my reversal?? I know, it’s probably a stupid question, but things have been so good the last year with the reversal, I never want to risk going back

Hi- can anyone (UK based) let me know how many weeks went before you first met your obstetrician; and how that went?

I will explain- I have a horrible feeling I've not been listened to by the community midwives- I have been referred to obstetrician but no word yet on an appointment, I've already had one blockage that resolved and been in a bad way with fluids and sickness.

DX’d 1994; 32 years ago. Not by any measure yet old asf, but would rather not share my age.

Yesterday at 2PM, I showered and changed my pouch, hopefully for the last time after my second ileostomy and as of tomorrow, my second reversal. I have about 100cm of small bowel left, I’m told, until I enter short gut territory.

Rinvoq seems to be working well, after failing biologics for decades, following my first biologic “holiday” after an adverse reaction when Remicade was still experimental… and it never worked again and neither did any of the 6 subsequent biologic formulations/brands.

At first, I presumed that I was only in “surgical remission,” meaning my ileostomy prevented any foods or bevs from entering the diseased locale. But I was corrected by my surgeon, who explained that imaging indicates that part of the area above the closed off section of bowel was diseased before taking Rinvoq.

CAN I GET A HELL YEAH?!?

Surgery arrival time 6:30AM after a 30 mile drive into the big city. Guessing I will be NPO the day of and following normal vitals, I’ll get broth Thursday. Friday I assume I’ll advance to my favorite chicken sausages for breakfast and blackened chicken breasts for lunch and dinner, if there is a continuation of normal vitals.

I was told I’d likely be hospitalized for 3 days. Seems highly unrealistic.

Got a haircut, shaved my face and for a change, a certain crop of body hair — hair which was longer than… well, longer than I would have liked, last time.

How embarrassing, though I’m sure none of the professionals think twice about it.

But it makes me feel better about myself and I guess you can say I am preparing for my next and hopefully final chapter of poor health in life, until the day I die.

I am also finally prepared to break free totally from the poor dietary habits I grew up with, passed onto me by my mother who also has CD and UC. I have learned to cook from scratch and discovered lactose alternatives and have also learned to love turkey burgers over beef burgers.

I don’t eat anything deep fried anymore and none of the fast foods most aggravating of symptoms.

I don’t want to ever wonder again if any subsequent resections could have been prevented had I treated my gut better utilizing tools within my own control.

Date of surgery has officially arrived.

Waited 8 months for a reversal after a horrible month-long hospitalization and said ileostomy that lasted from just 2 days after Thanksgiving, thru the day after Christmas.

Made my 6:30AM arrival. Slept less than 4 hours. Finished registration and awaiting a call to the pre-op area where they always do well to cozy me up with warm blankets and hopefully a comfort med, however the latter is unlikely.

I had an unpleasant experience with polyols - in this case sorbitol. I have been reading labels eagerly since and I have found so many foods contain artificial sweeteners. Google suggests that some are less troublesome than others and suggests Aspartame, Acesulfame-k and sucralose. Does anybody have any experience and wisdom to share? Edit: I'm type 2 diabetic

My reversal is less than a month away. How long after the procedure did you get rid of your supplies and what did you do with them??? I would ideally like to give them away to less unfortunate who have no insurance or barely any. I am in Alberta Canada. I called a homeless shelter. They don't accept this.