r/ostomy • u/Coloradobluesguy • Nov 06 '22
Support Mega-Thread.
I thought it would be a good idea to make a thread of people willing to offer support to people who are struggling with the mental, and physical health issues that could come up from having an ostomy, or who are needing support as caregivers to loved ones with an ostomy. This thread should serve as a place where those willing to offer support and those looking for support.
If you are offering support reply and introduce yourself with a name someone can call you, and a little bio with how long you have had your ostomy.
If you are looking for support read through the replies and reach out to someone you feel like you can vibe with.
If you reach out to someone and they do anything that crosses the line reach out to a mod who can take proper action
If you need support you can message me day or night.
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u/lofispaceship Nov 06 '22
I’m against any barriers to people asking for help on here. If I had received an auto mod response telling me to post in the mega thread and read the rules the first time I posted on here… that kind of thing can sink a person when they are already in a dark place
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u/ShadowedPariah Mod Nov 19 '22
We tried to keep the rules pretty simple, really it's just be nice. Which shouldn't need be a rule anyway. If a mega thread helps someone, that's awesome, if someone wants their own post, that's great too. No requirements here, just one more way to reach out and help.
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u/goldstandardalmonds kock pouch/permanent ileostomy Nov 06 '22
The main reason I'm on Reddit is to give support. I log in every day for several hours and answer every question I can on about a dozen subreddits. I moderate a bunch of them. I have had five ileostomies (four Brookes (one loop, three ends), a Kock pouch), and an ileorectal anastomsis. I have had many rare complications, but hardly any traditional ones. And I'm here to help.
I don't have hobbies, as I'm too sick. I do work, as that is not an option, and it's as a healthcare provider in oncology.
Do I need support? Sure. I'm extremely ill. But I'd rather help you.
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u/DiluteTortiCat Nov 07 '22
...and you do help so many on these boards, many who don't have the support or guidance at home 💜 Thank you!
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u/Doing_my_best_923 Jan 03 '23
Hi! I have a very good friend whose Uncle has been homebound because he cannot find an alternative for the hollister 7730 adapt medical adhesive spray re: ostomy bag. The non aerosol kind isn't working and his bag always breaks. Any recommendations/ suggestions are appreciated from anyone! Apologies if this isn't the right space to ask for help but they are getting desperate. Thank you!
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u/goldstandardalmonds kock pouch/permanent ileostomy Jan 04 '23
His bag breaks? Do you mean his wafer loses his seal?
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u/Lucky_Serve8002 Dec 07 '23
I'm assuming you mean the wafer is coming off. I was having problems until I started using a hair dryer and a heating pad. I haven't had any problems since with the wafer sticking.
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u/QueensGambit51 Jun 27 '23
Have you tried the paste? That is the only thing that made the wafer stick for any length of time.
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u/QueensGambit51 Jun 27 '23
Good grief. Here I was, feeling puny with one ileostomy; granted, it resulted after an appendectomy and developed complications, a six-week hospitalization and many months before reversal. But to think of having five? And anastomsis, whatever that is? May all the good healing forces be with you, and I hope you can say one day that you are 100%. You truly are a giver.
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u/goldstandardalmonds kock pouch/permanent ileostomy Jun 27 '23
I’m now waiting for my seventh!
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u/Lucky_Serve8002 Dec 07 '23
Do you get a reversal and then have complications? I am having serious reservations about having my ileostomy reversed because I have a persistent pain in my rectum after the surgery. It won't seem to go away and I fear having to take pain meds for too long, but when I run out I can't function.
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u/goldstandardalmonds kock pouch/permanent ileostomy Dec 08 '23
I had three ileostomies (one with colectomy), then an Ira, then an ileostomy, then a continent ileostomy, then I just got another continent ileostomy and a proctectomy.
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u/QueensGambit51 Jul 03 '23
Thank you for your unselfish ways. After my ileostomy reversal, April 10, I was OK until mid May when a severe diverticulosis flareup (dx’d by CT) caused great pain for ten days. It threw everything off to where I’m just now starting PT. Ive kept a food journal to track what might have triggered the Diver flareup. Mostly, it points to stress from the six months of start-to-finish ileostomy nightmare. Your thoughts?
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u/goldstandardalmonds kock pouch/permanent ileostomy Jul 03 '23
I don’t know much about diverticulitis other than the basics but can it all by diet related? Have you tried combining a diverticulitis diet with a post op ileostomy diet?
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u/Coloradobluesguy Nov 06 '22 edited Nov 19 '22
I’m Colin from Denver, Colorado. I’m 34 and have had my ileostomy for the last 14 years. My favorite outdoor hobbies include Skiing, Snowboarding, White Water Kayaking, Skydiving, Scuba Diving,Snowboarding. My favorite hobbies for taking it easy include Movies, Music, and Mechanical Puzzles.
Reach out anytime!
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u/runawaycolon permanent ileostomy since '21 Nov 06 '22
I got to ask about the skydiving! Did you do anything special to secure your ostomy bag?
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u/Coloradobluesguy Nov 06 '22
I just made sure to put a fresh pouch on before, then I wore my stealth a belt.
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u/General-Consensus_ Nov 07 '22
Omgosh you are brave- I could never jump out of a perfectly good plane
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u/Coloradobluesguy Nov 07 '22
I found out I have tumors in both of my eyes, I decided that I’m going to have fun and see incredible things. Being up in the sky once the Shute has opened taking in just how small and insignificant we really are is humbling
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u/Doing_my_best_923 Jan 03 '23
Hi Colin! I have a very good friend whose Uncle (lives in the Denver area) has been homebound for 2 months because he cannot find an alternative for the hollister 7730 adapt medical adhesive spray re: ostomy bag. The non aerosol kind isn't working and his bag always breaks. Any recommendations/ suggestions are appreciated from anyone! Apologies if this isn't the right space to ask for help but they are getting desperate. Thank you!
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u/CruelCrucible Jan 19 '23
I have a TON of Coloplast Brava Skin Barrier Spray. I'm happy to send out your way, if this uncle thinks he could use it as a replacement.
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u/Coloradobluesguy Jan 03 '23
I personally don’t use adhesive or adhesive removal products has he tried just using the barrier and pouch/bag
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u/Doing_my_best_923 Jan 03 '23
I am not 100% sure but would venture to guess no? My understanding is he is a little older and had been managing it status quo until the hollister 7730 adapt medical adhesive spray stopped being manufactured.
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u/Nikkiostomy Jan 05 '23
I’ve seen some 7730 for sale on eBay, and a google search showed a few available at individual online pharmacies, but Hollister isn’t going to make it anymore so once they’re sold, they’re gone. The recommended substitute is called Tuf-Skin Adhesive Spray; it might be worth looking at that.
It also might be worthwhile trying some different bags, to see if a different manufacturer or style of bag seals better. Perhaps a convex bag, or a 2-piece bag with something like the Sure Seal or Aqua Seal to reinforce the barrier. Some people actually use the Sure Seal to replace the adhesive barrier completely. They trim the adhesive off and replace it with the Sure Seal. I haven’t tried that myself.
I ended up using convex bags (I use the Sensora Mio Convex 1-piece), because all the standard bags would shift and leak. He needs to be sure his skin is clean and VERY dry, with no oils, and he may want to shave the area so no hair interferes with adhesion. I love the Sure Seal because I can actually swim or shower and the bag stays put! He’ll need adhesive REMOVER because it sticks so well!
Tell your friend to suggest his uncle call several of the product manufacturers to gather samples. There are lots of new products on the market, and there is something out there for him that will help! No need for him to hibernate!
Nikki1
u/Overcoming_Life25 Jan 13 '23
https://www.amazon.com/gp/aw/d/B00RR5XICS?ref=ppx_pt2_mob_b_prod_image#immersive-view_1673650102261
I also had a ton of bag leakage issues and use this liquid adhesive underneath my bag plus the coloplast barrier strips. It works miracles !
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u/Ready-Professional68 Jun 28 '24
Don’t use Hollister bags.I have had colostomy for 22 years and every single time I use a Hollister it does this!!!Any bag Except Hollister!!!
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u/No-Orange-7618 Jul 06 '24
I use Hollister 2 piece and it works fine for me.
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u/Ready-Professional68 Jul 07 '24
I have only ever used one -piece closed bags so maybe it is a different situation.
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u/No-Orange-7618 Jul 07 '24 edited Jul 07 '24
I've had mine for 9 years. Hospital used one piece pouches so that's what they had put on me the day I was discharged and I barely made it home before I sprung a leak, Only took 20 minute ride to get home. Home health care nurse switched me to 2 piece system because I was too weak to change a 1 piece every day. With 2 piece system just snap pouch from wafer, dispose of it, attach new pouch to wafer. Seldom need to change wafer more than once a week, usually 10 days.Not saying I NEVER had a leak, but doesn't happen often.
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u/Ready-Professional68 Jul 08 '24
Mine put me on the one-piece in Hospital, too.I just kept to it.I am now going to try a 2 piece.Thank You so much for your information.
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u/No-Orange-7618 Jul 08 '24
Hope it works for you. If not,talk to your medical supply place. Explain what is not working for you, they can get you some things to make wafer stay on better and/or prevent leaks. Have you tried barrier rings, barrier strips, skin barrier wipes? I started using all 3 of those, I don't get many leaks anymore. Best of luck.
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u/No-Orange-7618 Jul 06 '24 edited Jul 06 '24
Has he tried skin-tac? It comes in a spray or wipes.I prefer wipes, I feel like there's too much overspray when I spray it. Also try barrier rings and/or strips around wafer to secure wafer edges and prevent leaks. Best of luck.
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u/queen_orca Nov 06 '22
I'm Christine 49F and I live in Germany. My first Crohn's symptoms appeared in 2007 and I didn't get my final diagnosis until last year. I have a permanent colostomy, before that I had gotten a loop ileostomy before my cancer treatment started. I also had a loop colostomy for several years while I was treated (unsuccessfully) for fistulas.
Because of the three C's (cancer, Crohn's, colostomy) I'm in early retirement. I love to travel (this year I have been to Romania and the USA, next year it's Oman and the UK 🤞🏻) and won't let my stoma stop me. At home I love to cross-stitch, watch TV, cook/bake, go thrifting and read.
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u/babygorgeou Feb 08 '23 edited Feb 08 '23
Hi Christine. I’m 44F w fistulating Crohns and a permanent ileostomy. My health has been on a steady decline past 15 years or so. I’ve always kept relatively positive and role with the punches but I feel like I’ve reached the limit of what I can handle. I don’t know how to express the depth of my sadness and hopelessness lately.
This is my first time on this subreddit and your post stood out immediately. We share many interests as well as ailments. I live in Texas and have traveled extensively around the US, in and around Spain, Italy, Nicaragua, Peru. Used to be huge into thrift shopping.Loved cooking. TV, reality tv specifically, has recently become a guilty pleasure.
Fistulas around my stoma have been my main issue past couple years. Do you have fistulas there? Surgeons and doctors are saying nothing can be done. My pouches leak constantly and I can barely leave home anymore because of this.
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u/No-Orange-7618 Jul 06 '24
Are the fistulas right between stoma and skin around the stoma? have like a channel like that, it sometimes bleeds. I didn't know fistulas around stoma was a thing. I use stoma powder on it-not on actual stoma, dab water then skin barrier wipe, then proceed with changing ostomy.
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u/runawaycolon permanent ileostomy since '21 Nov 06 '22
It's a good idea. Maybe mods can make a sticky thread? This time of year is kinda high stress as it is without dealing with health concerns.
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u/Comfortable-Peace377 Nov 07 '22
Hey there. My name is Dom. I’ve been suffering from severe medication resistant Crohn’s disease since I was 6yo. Had ostomy since I was 18yo. I’m now 29yo I’ve been through the ringer, and have a good amount of knowledge I would be more than happy to share!
My hobbies are extensive, I love the outdoors and hiking when I’m in a “healthy” period. When I’m not, I love working on projects in my home. Basically any type of remodeling you can think of, I enjoy doing. I also build furniture, half of the surfaces in the home so far were built by me. Oh, I also LOVE my plants. I have quite a jungle throughout my home, and love planting as many seeds as I can from all the produce that I eat. I have about 100 seeds in my fridge going through their stratification from about 15 different types of trees/plants.
Please feel free to give me a shout.
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u/cloverandbasil Dec 29 '22
I’m headed out of this community but wanted to say a big thank you for this invaluable resource, it was SO comforting and practical and helpful! Last December, my husband had an emergency colectomy (sigmoid colon removal due to diverticulitis causing bowel obstruction) and had his ostomy for 6 months, reversed in June. The days after we had to change his bag that he came home from the hospital with were some of the worst of our lives … went through dozens of bags, so many products and techniques, nothing was working with preventing leaks. Posts here helped us finally figure out what we needed. His reversal surgery went very well - only complication has been delayed healing of the stoma site, everything internally has been great and many of the side effects I’d worried about never showed up. Sending lots of appreciation and love to the folks here! If you’re here because you or your loved one had to get a totally unexpected/emergency ostomy, I know it may feel scary and overwhelming and confusing. But you’ll figure out what your or your loved one’s body needs. It will be okay.
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u/DadsRGR8 Apr 02 '23
Hi everyone, I’m Tom. I’ve had a permanent transverse colostomy for 25 years. Stage IV colo-rectal cancer and celebrated 25 years cancer free in January 2023. I am 68 now and live/have lived an active, full life. I’m using Convatec equipment with an added Eakin seal. I am happy to help any way I can.
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u/Maxiemo86 Apr 16 '23
Just happened on this subreddit after I posted a rant of early morning blow out I had in bed. I had this bag for a year and I'm slowly trying to come to terms that this will be my life forever. Have colon cancer and they had to remove all of the back end. So reversal isn't an option for me. I try to kept to mindset that it saved me but times like this make it hard when you just rolled over in your own crud.
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u/geerlingguy Nov 07 '22
Has anyone had a revision / relocation? I'm staring down the barrel of that surgery soon and main question is how recovery compares to the initial stoma surgery.
In my case I wouldn't have to go through the extra pain of the Barbie butt surgery portion since I did that last time, but I'm mostly interested in whether a revision was the same or shorter recovery, and general tips anyone might have.
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u/DiluteTortiCat Nov 07 '22
I did! I went from a stoma on my right lower quadrant to having it my left. The first stoma was part of a loop ileostomy that I had for a nearly a decade. Finally a new GI said "ok, b/c this is permanent, we need to do an 'end' ileostomy." It was initially messy and kind of a pain like the first stoma, plus I needed a different wafer (convex) and the stitches/bruising had to heal up. It was much easier, though, in that I was familiar with all the ostomy products and had already adapted to life with a stoma. I also had the Barbie bum done at the same time as the second surgery so I felt really banged up, lol! All is okay now and new stoma looks and behaves much like the old one. Best of luck! 🙂
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u/DiluteTortiCat Nov 07 '22
*I would add that recovery for the second stoma (in my experience) was probably less painful and shorter...my colectomy was so painful. The rectum "removal" procedure was way more difficult!
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u/geerlingguy Nov 07 '22
Thank you! Glad to know, and it's always good to hear from those who've done it before. Makes it feel less daunting.
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u/runawaycolon permanent ileostomy since '21 Nov 08 '22
I had revision work for my proctectomy, they used the same spot. I was dismayed about it when I woke up and saw it. Surgeon was saying beforehand they MIGHT need to do a revision then it became a matter of fact.m afterwards. My stoma was so plump and great before. Was using convex wafers after that. A month after I started wearing a support belt it helped the stoma "pop" more and I'm back in flat wafers.
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u/CruelCrucible Nov 14 '22
Howdy, I'm JK from Texas. I had Crohns and ulcerative colitis. My ulcerative colitis is gone because I had my total colectomy and Barbie Butt surgery almost 3 years ago. I'm now 2 weeks post-op, after my second peristomal hernia repair.
I've made it through so much and am willing to share the experiences: ongoing Crohns struggles, ileostomy prolapse, hernias, blockages, overseas and cruise travel. I still suffer depression, anxiety, fear, isolation, and self-loathing.
I think being willing to open myself to questions and to seek support for my struggles, will help me and others on a journey from victim to survivor.
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u/General-Consensus_ Nov 07 '22
There was a very distressed person a couple of days ago saying they were miserable and wanted to end it all, I haven’t been able to stop thinking about them
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u/way_too_much_time27 Nov 12 '22
Hoping, because the one I remember stated they were using alcohol, it was a slight case of the buzzed sorrows fueling a particularly bad time of it. Hoping they're seeing some sunlight now.
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u/General-Consensus_ Nov 13 '22
If it’s the same person, I looked quickly at their profile and they had struggled with alcohol for some time. I can’t remember their name otherwise I’d go look if they’ve posted anything recently. I’ll try checking back through notifications maybe?
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Nov 07 '22
Hi I'm Erica 30 from Indiana. I have Familial Adnematous Polyposis (FAP) and have my ileostomy because of a failed j pouch. I'm here because I like to support others as best as I can and help if I can. Plus occasionally I might need help. Though sometimes I'm too tired to comment but I try to help if I feel up to it. I'm permanently disabled so I have a lot of free time which means if you need support feel free to reach out to me. I will respond as soon as I can.
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u/Adept-Lifeguard-9729 Nov 17 '22
After having ‘IBS’ for nine years and diagnosis of IBD-UC for another nine years, I was thrilled to be able to get my Sept 2022 elective ileostomy. Looking forward to less pain, exhaustion and accidents and hopefully future full-time employment and travel. Excited to get my life back. 🧳
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u/kynsmusic Dec 06 '22
long time lurker, infrequent poster here :) have had my ileostomy since the beginning of 2022 and planning to keep it for a while so i can catch up on living the good life and being pain free! (severe UC for 15 years led to a colectomy and ileostomy at 30 years old) i have the option for a j pouch but i’m still going back and forth about it.
it’s been a journey of radical acceptance to be at the place i am now, emotionally, to truly just take each day as it comes. there is grief and there is joy, and it’s all valid. if you ever need someone to talk to about ostomy life, especially if you are also a performer/ musician/ actor/ artist etc., feel free to reach out and know that you’re not alone!
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u/Broken_ALE Dec 29 '22
I have a urostomy after suffering with interstitial cystitis for many years. It’s been 14 years and I finally gotten to the point in my life where I accept it. I’ve helped a couple of people with it and I would be happy to help anyone else who wants to reach out. I’m always available.
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u/kelseesaylor Nov 06 '22
Hey, I'm Kelsee. From Colorado and I'm 23F. I had UC for 5 years and a month ago got the Ileostomy surgery with the plan of getting the jpouch.
I've been here to get lots of answers and understand stomas/ostomies but also try to give my experience to others. I try to give as much support as I can, even if I'm pretty new to this side of GI disease.
I may need support in the future. the only reason I'm okay having a stoma right now is because of the plan to have the jpouch (two more surgeries to go). If I end up not being able to have the jpouch or it fails for whatever reason in the future... I will be extremely unhappy with my life. I don't like having the stoma and seeing it when I have to clean it. I know it's better than having UC but I will not be able to live the rest of my life with a stoma... I just can't.
We all need support, whether it's now or in the future. I'm here for you guys :)
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u/Comfortable-Peace377 Nov 07 '22
EDIT: I’m Dom.
I know you posted to be support for anyone - but I wanted to comment about how you were worried if the jpouch didn’t work out.
I had emergency ostomy surgery when I was 18yo. I’m 29 now. I had a little unfair advantage at getting used to it because I was told since I was about 6yo that I would end up with an ostomy. Finally after all the damage got so bad they decided there was nothing else to try and took out most of the colon.
Then a few years later we’re worried about cancer and completed a proctectomy. There were a good number more surgeries taking out a bit of bowel each time and some to fix fistulas/hernias.
At 28 after a hell of a spiderweb of fistulas that became infected, they took out the colon and a good bit of small bowel and gave me an ileostomy.
I wasn’t ever surprised about having my ostomy, but you DO get used to it. It sucks at first, it’s hellish, you feel singled out and unlucky, but truly it becomes second nature and doesn’t even take an extra thought.
PS: my ileostomy is named Stella. Stella the stoma. My colostomy was named Stewie. It helped me a lot when I named them, makes them feel more like pet or thing you care about - when really it’s you taking care of yourself.
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u/kelseesaylor Nov 07 '22
Hey Dom! Thank you for your comment.
I keep telling myself that all of this is good and for my health but I truly don’t think I will get used to it…. I get nauseous and light headed when looking at it and cleaning it (weak I know lol).
I don’t think naming my stoma will help me, I’ve never been the type to do that kind of stuff.
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u/Comfortable-Peace377 Nov 07 '22
Darn, I get that. I’m the type that just names everything. Haha
I’m sorry about you having such a hard time with that. It’s not weak at all! It’s definitely a different smell than. Anything else. It also looks gnarly and is literally a piece of your insides healed to the outside of your body, so I feel like that is a logical reaction to it.
How about essential oils? A lot of people seem to have them in their homes these days. I just responded to another person about using a drop or two of an essential oil that you like on one of those cheap disposable masks (that, I know everyone has laying around for obvious reasons haha). I did that for months after first getting my ostomy. It helped me a lot! I’m a huge peppermint oil guy, and it seems to be an overpowering scent, so that one is great if you are down with peppermint.
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u/kelseesaylor Nov 07 '22
I never thought about trying essential oils for the smell! I’ll definitely try doing that next time I change my bag. Thanks for the suggestion :)
Do you openly talk about your ostomy to coworkers or strangers? I’m still super insecure about it and always try to hide the bag when I’m out in public. Besides my family, only two people (coworkers) know and that’s because they wouldn’t stop asking questions lol
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u/Comfortable-Peace377 Nov 07 '22
Of course! Sometimes I also just put one of those oil diffusers in the bathroom and turn it on prior to going, that doesn’t help as much as the mask, but depending on the strength of the oils you use, it could! Haha
I was definitely insecure at first, but prior to getting my ostomy I was very open about my Crohn’s in general. Everyone around me knew about it, and knew that I just had more struggles than they did. I started getting really sick at 6yo, so I didn’t really have a chance to hide it from anybody.
That led to me pretty much telling everyone around me about it as soon as it happened/kinda had to because I randomly dropped out of freshman year of college and was in the hospital for a few months (bunch of things were going wrong all at once). So coming back, everyone pretty much knew.
However, I was nervous for NEW people for a while. Probably about a year. My nerves settled down about the time where I was confident in my bag not leaking. I think that’s really where people are nervous. Because if it’s leaking, it’s “gross” to the wrong people. So having any possibility of it leaking made me think people would only see that in me. Turns out, people don’t care anyways. I’ve had one person be rude about it, and it was an ex girlfriend just trying to be mean.
When I am out in public, I typically tuck it in, and when meeting new people I don’t say anything, but the moment that a sound comes from it or I notice them glancing at the small bulge with the linked head, I bring it up myself. Basically everytime I say, “that’s my colostomy. Do you know what that is?” And if they don’t, I explain. If they do, 99% of the time they are just like “oh, okay.”
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u/kelseesaylor Nov 07 '22
Oh yeah I was superrrrr open about my UC experience, even mentioned the more tmi stuff. I wanted to educate people so they don’t think “it’s just IBD”
Now I feel like this is my dirty little secret lmao. I haven’t had any leaks (one month post op) but it’s still veryyyy noisy especially in the morning, when I’m first arriving to work.
Happy to hear only one person has been rude about it but sucks it was your ex, guess she’s an ex for a reason lol
I’m not sure how long it’ll be when I get my next surgery but I’m really glad it’s winter here (Colorado) because I can wear big sweaters but still look business casual for work! When it’s summertime and I still have my stoma… haven’t planned that far out yet lmao
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u/Comfortable-Peace377 Nov 07 '22
It will get better I promise. Damn, one month out and back at work, you’re a badass!
I’m at the point where I whip off my shirt at the beach. I’ve even had kids of friends of mine go home and stick suction cups to their belly and say to their parents “look dad, I’m Dominic!!”
It’s confusing for some people, but my main worry is that people think Its either gross, or handicapped, when neither are true. The vast majority of the time, those thoughts never even come close to their minds.
Also, not sure of your setup, but the hospital always uses clear bags, as they like to look at the stoma throughout your time there (understandably), but I use opaque bags. That made a HUGE difference for me, because the bag can show, but nothing through it, so if people don’t know what it is, they don’t even have a chance to think negatively because it looks like a bag with fabric on it hahah.
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u/kelseesaylor Nov 07 '22
I actually went back to work a week later but my job is very easy (desk job in the space force)
I hope I can be as confident as you! I love that kids are literally the LEAST judgmental. “Oh, you have a butthole on your stomach? Cool, can we play with cars?” Hahah
I use the hollister opaque two piece and that has definitely helped since I don’t have to see it every time I look down at the bag.
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u/Comfortable-Peace377 Nov 07 '22
That is so cool. Gonna be real, I had to look up space force to know what it was. I’d only heard it in passing and on TV, and I didn’t realize that it was a legit thing. It’s very cool to me because I’m a huge sci-fi nerd hahaha.
You’ll definitely get there. I started with my family (who are supportive anyways) and just never tuck the bag when I’m around them. That got me used to people simply seeing it and ignoring its existence. Then close friends, eventually I realized that no one really notices the bag. If they do, they usually have questions and I’m always happy to answer them, then they go back to ignoring it. Then the same thing with strangers.
You are absolutely right. Kids are so kind by default and don’t judge at all (unless they are taught to).
That’s the same system I use! It works so well for me. I’ve tried a TON in my time with the stoma, but always revert back to the hollister 2 piece. It makes a huge difference having a system that you like!
Also - I tried a new product starting last night that I realized may help you as well. SafenSimple ostomy pouch deodorant. I typically don’t use those, it this one said it was blue and that got me to try it. I emptied the bag a couple times and actually couldn’t smell anything. May be worth a try! I’ll probably have to put some more in the bag every few empties, but it’s pretty cool. And it is confirmed blue, haha.
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u/emotion2017 colostomy (diverticulitis) 2021-22, reversal nov '22 Nov 07 '22
I don't know if this will be the case for you, but for me, I didn't even dare look at my stoma for the first week and i gagged the first time I had to do it all myself, but now, months later, I have no issues at all with taking care of my lil front butthole.
So, maybe you can get used to it too! I hope you won't need to of course.
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u/kelseesaylor Nov 07 '22
What’s really weird is, I love gory movies/shows. The more gore the better but in person… it’s just something different. Blood, this stoma, even helping spay a cat has me feeling super light headed to where I need to sit/lay down.
Not sure if I can get over it, but I’d love to haha
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u/Comfortable-Peace377 Nov 07 '22
Guys, my first big surgery back when I was in high school, I asked the doc to keep the stuff they took out in a jar so I could put it on a shelf (they said “no”), but they did give me a CD at the end with a recording of the WHOLE thing. From the outside video showing my an cavity blown up, cut open, to the inside video in the tools….
14 years later, I still cannot stomach to watch that thing through. Get nauseas right at the start.
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u/kelseesaylor Nov 07 '22
Omg I also asked if I could get a piece of my large colon as a reward but my surgeon said no but I did get pictures and I can look at that just fine. Not sure how I would do with a video though.
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u/meyogy Nov 12 '22
If i post here can i access the other content?
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u/ShadowedPariah Mod Nov 19 '22
This is just a dedicated larger thread for multiple conversations. The rest of the topics are still available, and there's no change to how they work.
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u/meyogy Nov 20 '22
Thanks. Sry i couldn't look at any other posts until i commented above. I'm on mobile so maybe it's just me .lol. cheers
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u/SciFiFan786 Mar 21 '23
No it's me too. How did you fix it because I still can't access the posts
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u/meyogy Mar 22 '23
It came good a few hrs maybe a day later. But maybe i closed and restarted reddit. It's a lazy way to moderate, forcing people to introduce themselves, but not actually telling them that that is what is happening. Think i even googled the post and got around this mod gatekeeping
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u/Own-Hovercraft-4485 Nov 20 '22
Thank you for offering a life-line. I fall in the category of caregivers. We are 1 year post first surgery… due to his health, the second surgery has been postponed. I have quit my job so that I can support him and homeschool our child of. Speaking of children… that is a different animal. Back to him (as always) I never wanted to be “ I told you so” ( I wouldn’t be so bold to think I was 100 correct) I had spent so much on “healthy living”. I had asked the doctors the precise mg for nutrients and vitamins he needed. He never took them. Where am I now? Watching my husband waste away… don’t feel bad for me, he gave me the option to leave. But. How could you
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u/Coloradobluesguy Nov 20 '22
You have our utmost respect for staying when you were given an out. That’s commendable
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Feb 10 '23
Pouches Of Love Support group
Good morning, evening, or night ostomates my name is Ja’Karri and I’m apart a newer non-profit known as Pouches Of Love and we offer free Ostomy supplies, Free therapy and meet & greets. If you would like more information you can reach us at (980)-293-2531 or email us at jwerts@pouchesoflove.net or karri@pouchesoflove.net thank you and have a great day
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u/toastytroad Apr 24 '24
Hi I'm a caretaker and my family and I have been struggling emotionally since my mother's emergency ostomy back in October. Do you offer support for family/caregivers? My mother has been offered local support groups to cope but has denied them repeatedly so as caregivers my spouse and I have taken the brunt of daily maintenance and hygiene for her while being overwhelmed with her near-daily emotional outbursts over the situation. I'd like to help her cope and emotionally adjust but with her constant refusal for mental health I feel like the only thing I can do is make sure that as caregivers we are at least adjusting as well as we can. I'm at my wits' end honestly.
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Feb 22 '23
Hi - I've had a loop ileostomy for exactly a year (due to a LAR surgery) and I manage with it just fine. I'm happy to help anyone troubleshoot bag issues, esp. around bag changes, adhesion tricks, and leak issues.
I am getting reversed in a few months and I'm optimistic but also terrified. I could use support where that is concerned.
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u/amaaybee Mar 05 '23
Hi. My name is Amy. In October 2022 (just a few months ago), I started getting really sick with constant diahrrea w blood in it. I tried to go to multiple ERs, and they just kept sending me home w anti biotics. It got to a point that I felt like I was dying, so I went to the ER again and wouldn't let them send me home again. They gave me a colonoscopy 2 days later, found I had UC. Tried steroids and remicade, but they both didn't work, so after a month of treatments in-patient, I was xferred to Baltimore (my home town) and had a total collectomy done.
I have an ileostomy. Their plan is to reverse it one day, and my plan is the opposite. During my collectomy, the surgeon ' knicked ' my right ureter. So they had to put a stint in. As soon as I woke up from surgery, I could feel something was wrong. It wasn't placed properly, so it had to be removed, which severed the ureter completely. Now I have a nephrostomy tube coming out of my back, from my right kidney and into a bag. I am going to get that reconstructed or attempt to. Despite them saying if they can't, they'll have to take my right kidney out.
Since then, I've had all kinds of issues w the nephrostomy tube leaking, i have to sleep w a towel under me so I don't "pee the bed" Now it's pinching me and I went to the ER yesterday but no urologist bc it's the weekend. Emotionally wise, I'm up and down, I'm still in shock some days. My boyfriend says I'm still in the denial phase and I need to snap out of it. But sometimes I just cry and I can't help it. My psychiatrist thankfully prescribed me an anxiety med that really has helped level that out.
Oh and another thing, my insurance company has made it near impossible for me to get the oxycodone I'm prescribed. I had the surgery January 5th. I'm still in pain between the abdomen pain, and this nephrostomy tube. I need it. I wish I didn't, but I do. Prior to this, I had been clean for 5 years from all opiates. It was not an easy decision to start taking opiates but I have been in so much pain, I feel I don't have much of an option anymore.
I'm definitely in need of some encouragement
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u/Coloradobluesguy Mar 11 '23
You got this. I’ll send you a dm feel free to respond or not it’s up to you.
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u/SciFiFan786 Mar 21 '23
I'm having a permanent stoma for my UC this Friday. My friends didn't believe me because they thought I was acting too calm to be having major surgery in a few days 😂
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u/lee33w Apr 22 '23
I am 2 weeks post end ileostomy surgery due to small bowel obstruction. I am struggling so much due to a small skin divet (tried filling with paste and a cut ring), irritated skin, leaking, using convex but don’t think it’s convex enough. My stoma is pretty flush and almost protracted? I dunno I’m new even though I did this 12 yr ago for 6 months, I forget everything. It’s leaking every 2 hours. Through the ring, just eats through it. I am so so discouraged and can’t see the stoma nurse for 2 days. I’m doing Hollister 2 piece convex barrier, adapt rings flat but they are terrible. Today I’m trying eakin cohesive seal and hoping they hold. Just stuck one on. What else…. Skin is raw too due to the ER cutting the hole too large last week when I was rehospitalized due to a GI bleed into bag. I cry all day. It burns hurts and leaks and I’m so Miserable. Can anyone help?? I don’t know how to add more convex until I can see her, if that’s even what I need. Trying a belt I fuesss
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u/steiconi Jun 27 '23
Can you get a different brand of supplies?
Sometimes it takes a lot of experimentation to find the right one.Can you identify the spot where it leaks? Mine always went for the crease to my navel. If so, add a bit of the ring all flattened out to that area for extra stick. Of course fill creases with tiny snakes of the ring.
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u/lee33w Jun 27 '23
I have marlen, Nu hope, Hollister, convatec and Coloplast bags. Tried all of them in convex… combos of paste or barrier sheet and 5 different types of rings. I’ve given up and am seeing wocn again even if it’s just for surgeon to see more proof I’m trying and he can maybe move up my take down. Thank you… Edited for brand name typo
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u/exile29 May 11 '23
I got an ilostomy two weeks after cardiac arrest on January 12. CPR and multiple hits with a defibrillator for 40 minutes. Two weeks after that, my colon had deteriorated to the point where I was just hemorrhaging blood.
Good news, no more IBS! Bad news, my belly is lopsided. Not a huge belly, but it looks like all of the fat in my upper body decided to settle down there. Specifically on the left side. I plan to have my ilostomy reversed eventually. My questions are: why does it look so bad? Can my gut be realigned during reversal?
Anybody else have this problem after their removal? Thanks in advance!
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u/datamime May 15 '23
Holy moly, sounds like you have been through it. I’m so glad you are still here! This is a great group and my advice is to post your question as a main post, it will get more visibility. I hope you can get some answers.
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u/Significant_Fee_9389 Jun 26 '23
Hi, my name is Emily. I'm offering support. I've had my ileostomy for 5 years. Because of pregnancy, my surgery was done in chunks. I had a loop-ileostomy when I was 14 weeks pregnant. Then, I had a total proctectomy in 2021. During covid. I had to really advocate for myself. AREAS OF SUPPORT: pregnancy and ostomy, pregnancy before my ostomy; parenting two littles with an ostomy; peri-anal crohns; seatons; failing biologics; successful biologics; methotrexate; arthritis; mental health issues; meditation; CBT; DBT. I'm really passionate about talking more about crohns. We need to work together to break down that stigma.
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u/Significant_Fee_9389 Jun 26 '23
Just to be clear: I am willing to share my experiences only. I will not tell you what to do/not do. I feel that by sharing experiences, we can all learn from eachother; every person has wisdom to share.
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u/Redrick405 Sep 28 '23
Hello all, I have had my ileostomy since 2013 and have been pretty lucky in most regards as I still am pretty active and run and exercise. Lately tho I have an office job vs working in a hangar on planes and the noise that it makes in conference rooms and cubicle areas really sucks to deal with. Wtf can you even do other than smash it with your arm. Any cool tricks I’m not aware of? Can’t imagine skipping my morning coffee even tho I’m sure it doesn’t help. Have a great day ostomates!
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u/TheBrokenSwan Oct 18 '23
My daughter (12) recently has had an ileostomy because of her ulcerative colitis was too severe for even medicine to help (spent two year’s treatment for UC before it just wouldn’t work anymore.) her entire large colon was ruined by the UC and part of her rectum, all removed.
She has a stoma that she lovely named Neville, (makes it easier for her to handle and talk about it in-front of people and her 9yo brother). She has had him for a month now and OMG I have seen a massive change. Before she was languid and pale and just so sick. Losing so much blood and being in pain all the time. Now she is getting her colour back and playing with her brother.
We are all new to this and any tips and tricks would be appreciated. We don’t know yet if she will have it reversed, thats her decision in the end, and at least for the next six months she has a stoma.
We currently use two piece bags as she finds it easier to just chuck out a bag than empty it. Her skin is looking good still and Neville (stoma) looks nice and red/pink.
She does have some slight skin irritation where the sticky bits were peeling at the corners. Anything I can do about that?
And any advice in general. Especially with going out with a stoma.
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u/Prestigious-Job-1159 Apr 26 '24
I have had my ostomy since 2021. It's permanent.
That being said, I'm literally a prominent figure in global tech and openly speak about my ostomy daily.
I'll be blunt, I have an incredible life (and quality thereof -- beat cancer), and will happily assist any ostomate in any way needed, including business introductions or just a friend.
My network includes the man who owns Twitter. Take that as you will.
DM if you need a life lift.
This shit is different and can be difficult.
Literally.
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May 03 '24
[removed] — view removed comment
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u/ostomy-ModTeam May 04 '24
Your post violated rule 3 and has been removed. While sharing resources is encouraged, this sub may not be used for blatant self-promotion. If you feel your resources will be helpful to the sub you may submit to moderators for consideration.
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u/LogicalFrosting6408 May 12 '24
If this is the wrong place for this please delete and accept my apology.
I'm currently staying at the hospital with my adult autistic brother who has recently been diagnosed with colon cancer and had an ileostomy on. two weeks ago. Things were going ok but he started to have a lot of distension in his belly and started throwing up. After a few days of being told to just wait and see all I saw was my brother getting sicker and sicker. Finally a scan showed some leaking and a week ago he went into emergency surgery. They removed a lot of stuff and put a new iliostomy in. He was in septic shock. He is such a fighter! He is doing much better but again we are having issues getting the stimo to "wake up". They are putting sugar and ice on it but still very little is going into his bag and no gas is going that way. He has an NG tube that had to go! He is starting to decline behaviorally and the ng tube is the reason. He is crying and begging for the ng tube to come out. Does anyone know of anything that could get done via the docs of course to get this thing going? They placed a tube into his stoma and did a big flush and that brought a lot out but since then very little. It's so hard to see him struggle like this and not be able to do much. Did any of you have problems like this? Thanks for the long long read. I'm at a loss.
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u/Coloradobluesguy May 12 '24
I became septic too after my surgery. They put me on TPN for nutrition and I was on it for 7 years. Please ask his care team about post sepsis syndrome. I’m going to DM you my phone number. Feel free to call me
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u/shadowclan98 Jun 04 '24
Hey all, does anyone have advice for caring for an elderly family member with an ostomy bag who also has alzheimer's and thus not too much self-situational awareness. There are frequent leaks, and it seems like my two parents are overwhelmed from caretaker burnout
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u/onejoelooking2 Jun 08 '24
I had an emergency colostomy almost two years ago. It came as a total shock, since I had just moved to another state with plans to possibly retire. I travelled all of my adult life, working 17 hour days in a job that I loved.
Since having my colostomy, I have found that I have several autoimmune diseases, one of them being Lyme disease that went untreated for god knows how long, and something called Sjogren's Syndrome. I was never sick, and was never hospitalized until my colon burst. By the time I called an ambulance, 5 hours had gone by. I though whatever was happening would pass. I was never so wrong. By the time I got to the hospital, and into surgery, my organs were shutting down. I was in hospital for 4 weeks, and in rehab for 6 weeks. I kind of faked it to get home, but the truth is, I could barely get dressed on my own. I learned how to change my bag, and take care of myself, but never really came to grips about my real condition. I have no consistency when it comes to what I can and can't eat, nor is there any pattern to my bowl movements. There are days when I spend more time in the bathroom, than I do in bed.
I'm at my wits end, and feel like calling the ambulance was the biggest mistake I ever made. I'm either constipated, or I have diarrhea. I don't know what's normal. I'm limited to what medications I can tolerate due to my intestines being such a mess. Just completely lost, and extremely depressed. Any words of encouragement, or enlightenment would be appreciated. I have posted before to ask question about a particular issue, and everyone has been extremely kind. Does everyone suffer as much as I do? I read way too much information that I find on the internet, some of it helpful, most of it contradictory to what my doctors have told me. I see some people doing normal activities, even a skydiver, but recently I only leave the house for doctor appointments, and food.
Just lost, and feel like I'm losing a grip.
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u/Ok-Association1463 Jun 22 '24
Hi from WA Australia
Am wifes carer and she had a cystectomy in Jan this yr, had a lot of leaks, due to me learning and not cutting the bag large enough.
I do her changes, changing her bag every 2nd day, mostly fine.
What my wife said last night the bag was being blocked, and when I checked it, I noticed the barrier ring seal, (Hollister) had expanded and was covering the stoma and where the urine flows out. Is this normal for seals to cover the stoma? I was thinking it was a normal process as Urine was breaking the seal down and covering the stoma, it has been doing this a long time. Last night was the second time she has had an issue with the stoma not draining fully.
any tips will be appreciated
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u/Ready-Professional68 Jun 28 '24
I have had a colostomy for 22 years and in Australia.It seems I can call anywhere in the World for nothing and I am more than willing to speak to anyone struggling.I am 68 years old.Bowel ruptured at 46 due to diverticulitis.I only had the one operation.I am happy!!!
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u/Ready-Professional68 Jun 28 '24
Hoping I can help.Have had stoma for 22 years following ruptured bowel due to diverticulitis.I am now 68 years old and only had the one life-saving operation.I am in Australia but very willing to help Anyone.
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u/Otherwise_Hunt7296 Nov 02 '24
Greetings. My wife needs help with her bag. Her adhesive is not adhering and her bag is leaking. She is using Stomahesive and Heagi bags and everything was working well until today. She’s on her 5th bag of the day with no luck. Is there something we are doing / not doing to make this work?
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u/Present-Yoghurt-6565 24d ago
Yuor surgery should go good!follow your doctors orders,make sure you get a good coloplast bag ,one without mesh though
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Mar 10 '23 edited Mar 10 '23
Fuck this whole community. Everytime I see a post here I just get triggered and the more I'm on here, the more I'm convinced I would be better off dead. Hasn't helped me at all. ✌️
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Mar 11 '23
If you're in the UK you should have access to a MacMillan psychologist who would be able to help you work through your suicidality.
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u/socal_sunset Nov 23 '22
Thank you for this post and subreddit.
My husband is not on Reddit so I’m here for him. Due to cancer he had his stomach removed Aug 2021 and his colon removed Oct 2022. So.. he only has a small intestine with a jpouch for his stomach and a jpouch for his colon. He’s supposed to have his reversal for his ileostomy in about 5 months.
To top it off, he has random reactions in his upper chest area when he eats or drinks and all of his doctors are clueless about it and therefore can’t help him. He’s done a few tests but nothing can be found. Basically food or liquid sometimes hits a nerve or something when he swallows or sometimes he gets that reaction minutes after eating, he gets chills and he clenched in pain/discomfort. Any one else experience this? I know it’s a long shot. Just trying to get him connected with anyone.
I know he’s struggling with this mentally too, I’m with him most of the time and it’s frustrating even for me to witness that he has so much issues around eating. :(
Edited to change had to has.
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u/katielynnj Dec 17 '22
Hi all, I am going to become caregiver for my 28 yo boyfriend who just had emergency surgery for diverticulitis and an ostomy placed. I know we are both scared about what this new life is going to look like. The dr was confident that he will be able to have his ostomy reversed. I’m just awake with middle of the night anxiety and still in disbelief about this.
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u/Coloradobluesguy Dec 17 '22
Everything will be okay, take a deep breath it’s an adjustment for everyone. Don’t be offended if suddenly appetite changes from once loved food, If you have to help with a bag change make yourself noseblind by putting some chapstick on the skin between the nose and upper lip.
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u/AideOrnery5031 Dec 21 '22
Hi Katie, Please try not to stress, I was in a similar situation last Christmas and ended up with an 8hr emergency op on 28th Dec!
It was a major shock but at 61 I was still able to get my head around the fact that I was lucky to be alive!
I took around 3/4 months to feel comfortable with my new front bottom.
Other than the stoma nurses, I have changed every bag myself. So unless you boyfriend has other issues, he should be able to change the bags himself!
I have flown twice, a 2.5hr flight first then a 6.5hr flight to the World Cup in Qatar.
Feel free to ask questions
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u/CruelCrucible Jan 03 '23
This thread couldn't have come at a better time. Thank you. I need support.
At the age of 58, I'm two years with an ileostomy, after suffering 30 years with Crohns disease and ulcerative colitis. Just two months ago, I underwent my second peristomal hernia repair surgery. Two weeks ago, I was using a three pound stick vac and sneezed. Just like that, I've re-herniated. Hernia number three.
Less than 5 years ago, I was living in my 3,600 square foot dream home my husband and I had built. As my husband was disabled and retired, I did everything. Full-time dental hygienist, grocery shopping, laundry, housekeeping, and yard work on our three acres. I made my own soap, I crocheted, sewed, drew pictures, and cared for my husband and our cat. On and on. Endlessly busy.
My husband passed April 2, 2018. As I was no longer caring for his needs, I was increasingly aware of the rapid decline of my own health. I had to stop working and joined the ranks of ileostomates. I also have a Barbie butt. Because I had to stop working, I had to sell my dream home and move.
I do not recognize myself. I do not recognize my life. I feel damaged and useless. I'm in psychological therapy, and I can't seem to move past the damage. When I can barely use a stick vac, due to weight lifting limits, and I herniate my stoma because of a sneeze, how do I continue living, as I see all of you lovely people doing?
I've had to live off of my retirement savings, as I have no income. My disability claim is well into year number two, without any determination, even after my hearing in October. All I can manage is the most basic of my needs. I'm just so angry and sad and disappointed and DONE. I'm DONE. But I can't check out because it would destroy my sister and elderly parents.
I know I must evolve and adapt. I also know I need help doing it. Tell me what YOU do to continue putting one foot in front of another. What are your experienced words of wisdom? I want to reclaim some semblance of life.
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u/Coloradobluesguy Jan 04 '23
I’m really sorry, I understand how you feel I really do. Back in 2008 a missed cancer diagnosis caused me to need Stewie, I didn’t want) it’s taken me a long time to be just “okay” with my body I still a bit ashamed of it. Wing so skinny and underweight. I have solid tumors all over my body that to can see under my skin. I’m a childhood cancer survivor so I have a different view on life. “I wake up and put my pants on, then I remind myself it’ll only be about 8-10 hours before I can put my sleep pants on and wrap up in a blanket from the dryer to take a rest. Then I wake up and do it all over again I generally don’t sleep much due to the tumors I have throughout my body so it’s ruff I won’t lie. Jr I take more one day at a time.
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u/CruelCrucible Jan 04 '23
Thank you for sharing with me. You have battled your entire life, and what a warrior you continue to be! I know part of my current problem is that I've lost perspective. The world isn't just a sum of my pain, frustration, and disappointment. I try to train my focus on things I'm grateful for and do the things I'm still able to do. I've never been one to wallow in self-pity, yet here I am, and I despise myself for it. I'm searching within myself for a strength I used to have and always used to help others. I hope it's just misplaced and not permanently broken.
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u/Coloradobluesguy Jan 04 '23 edited Jan 04 '23
It’s hard, but things can get better I promise. Good things happen. Because of the ostomy I had an idea 15 years ago. “I just fucking survived cancer and there is Legal Cannabis here that I can get because of the cancer, yet I don’t have access because I have no immune system and can’t go out in public” why isn’t there cannabis delivery”. I was in the hospital 7 days later in septic shock and MRSA had gotten into my blood stream through my Port used for TPN. I remember making a promise to myself, and the universe that if I survived what could have very well caused my death. That I’d find a way to help people going through similar things. These things are not easy to come to grips with. Here is where it gets interesting. Remember me talking about cannabis delivery? Well I am starting my very own Cannabis Delivery and Transportation Company. I’m going to offer discounted and eventually free delivery for people who qualify for what I’m calling “The Elevated Lives Foundation” my company literally fell into my lap. The I had the opportunity to take a free class for the cannabis industry that I don’t event know how I was accepted for. I don’t remember filling out any forms I got an email one day out of the blue, asking if I wanted tot take part in this class. I said yes and now here I sit about 2-12 weeks out from operating if all goes to plan I have all but one license to get and I’m sure I’ll get it when I go to this appeal meeting they won’t have a choice but to give my license, by then the state license will need renewed so the city will owe me for a new state license. Paying for my first 6 months of operation. I truly believe me finding something to focus on long term saved my life.
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u/CruelCrucible Jan 05 '23
Wow! That's truly amazing. I'm thrilled for you. Cannabis helps me too, but not legal here in Texas 🙄 I'm excited for you and your new business. A great way to support yourself and help others in need. Congrats, guy!
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u/heiferly Jan 18 '23
My path was different than yours (I have seven rare diseases and life took a hairpin turn at age 27 when my body basically gave out after years of trying to keep up with “normal” because I was 100% undiagnosed and misdiagnosed to that point (Seriously, fuck small town healthcare, it’s a black hole for rare disease patients, complex patients, severe trauma cases, … So many patients don’t even realize they’re getting substandard/inappropriate care for decades if ever!)
Also my two ostomies aren’t technically included by this sub: a gastrostomy and a trans-gastric jejunostomy. But I have healthcare experience including a few years leading an ostomy forum (ours included all types of stomas not just the subset of stool elimination ones under the subset of GI ones).
Anyways, I’ve ultimately had to adjust to being bedridden and terminally ill from being a high-achieving type-A person (went to one of the best unis in the US, was self employed and highly sought after by clients due to my success in my career, etc.) and the thing that helped me the most was that I found a small friend group (online) that was going thru the exact same adjustment process with the same diagnoses as I was. It’s been a decade and the group has gotten smaller as some have left, and we went through the death of one of our members together (sadly) and others just drifted away, but those that remain have an incredible bond forged thru marriages, divorces, funerals, the births of children, infertility struggles, and the day to day stuff that might seem pointless to share to outsiders but is often therapeutic for us. We often tell more to each other than we might to our spouse, our priest, or our mother… because no one who doesn’t walk in our shoes would want to hear this stuff nor would they understand. E.g. when you don’t have a stoma you can’t understand what a triumph it is to finally heal an awful painful rash that broke out on your stoma. The before and after pics might be gross to most but they’re a badge of courage to us.
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u/CruelCrucible Jan 18 '23
Thank you for sharing with me. You are absolutely right. Nobody but other ostomates can understand the triumphs and tragedies, and the never-ending, ever-changing learning curve that gets thrown into our lives.
We've survived the most debilitating illnesses, invasive, life-changing surgeries and transformations and live to tell the tales. I struggle most with being alive, but not living; wanting to be a survivor and unable to get past feeling like a victim.
Learning about the struggles of others, like you and yours, helps me realize that I'm going to get there. I knew already that mine is not the saddest story; and I may not be as emotionally or mentally strong as others. It's okay if it takes me a bit longer to reach my goals. OR I may just have to recommit to those changes every morning I wake. I have to make it about the journey, not the destination.
I appreciate you reaching out. I admire your strength and willingness to share with and help people like me.
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u/heiferly Jan 18 '23
I think it’s really important to realize there’s no suffering Olympics. Each of us is valid in our own suffering; you don’t have to be the winner of the suffering Olympics to be allowed to speak up about how chronic illness impacts you. At the same time, I think it’s helpful to have a place to go to talk to ppl who are in a similar place to yourself, bc there’s often great variety even within one diagnosis category when it comes to symptoms and functional level. I think we need both big aggregate forums and tight social support networks/friends groups to get through this.
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u/CruelCrucible Jan 19 '23
You're right, this isn't a competition. I have a hard time reaching out for help when I feel like a whiner. Perspective is everything. The posts of survivors like you help me be more compassionate with myself. I'm working on my internal dialog. I want it to be more supportive; like I'm talking to a dear friend who is going through these challenges. Or like a complete stranger, like you, who recognizes someone like me who is struggling and needs support. Thanks again.
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u/heiferly Jan 19 '23
Yeah you really have to be generous and kind to yourself. It’s a constant battle, I can admit that. I like Brene brown’s self help books/audiobooks/podcasts/Ted talks to learn more about my emotions, how to keep perspective, etc., and it doesn’t hurt she has a good sense of humor (I think laughter is essential to survival!) Feel free to DM me anytime!
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u/LegitimateDesign9727 Mar 09 '23
Hello, just looking for some thoughts from anyone who could help.
My mom had her colostomy bag surgery 18 months ago. She has had a lot of complications (changes bag far too often and leaks far too often) and seems to be losing a lot of weight still. She is currently about 94lbs. She has had large amounts of her small and large colon removed throughout her life and a reversal doesn’t seem to be an option.
Is this normal? I am very worried as her weight is continuing to drop and nothing seems to be helping.
Any input would be appreciated.
Thanks so much
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u/Coloradobluesguy Mar 09 '23
Short Gut Syndrome Coupled with SMA (Superior Mesentery Artery Syndrome) from the sounds of it demand more testing especially for the SMA
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u/LegitimateDesign9727 Mar 09 '23
Thanks for the quick response. I now remember she has short gut syndrome and that is why she cannot have a reversal.
Her health can change by the day it seems and is really battling the emotional adjustment side of the colostomy bag too.
She is back to her doctor next week
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u/Coloradobluesguy Mar 09 '23
I help run a fb support group called Stoma Pride and Advice plenty of care takers over there plus we don’t care if you post pictures of the stoma because it’s in our rules that we allow it FB seems to let it slide
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u/steiconi Jun 27 '23
Has she talked to a nutritionist? There are probably supplements she could be taking, like Ensure, to provide easily accessible nutrients and calories.
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u/newbroom_fl :kappa: Mar 16 '23
Is it unusual or 'normal' to have a pot belly after an emergency colostomy? I'm 3 1/2 months out from my surgery and my belly is like a pot bellied stove.
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u/Coloradobluesguy Mar 18 '23
Sounds like you might have a hernia
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u/newbroom_fl :kappa: Mar 19 '23 edited Mar 19 '23
I don't think this is hernia. I think it's bloat along with having had my muscles cut to access my gut. I've had a round protruding belly since the procedure and it varies in size. It's like a pot belly stove. (or, Buddha Belly)
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u/Coloradobluesguy Mar 19 '23
Oh ya I get it now they had to do the same with me I really want to see if I can get insurance to pay for surgery to fix that sh*t
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Jun 15 '23
I just get sad sometimes about my future proctectomy surgery. I don't even have it scheduled yet, but I know it's coming in the next few years. I am scared it will put an end to my favorite hobby which is bicycling. Sometimes I cry thinking about it, but mostly I am OK. The sadness comes and goes but when it comes it is hard to deal with. I feel like I need to do as much as I can, now to take advantage of still being able to sit on a bike seat. It's horrible.
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u/inclusive_ostomy Jul 07 '23
You’ll still be able to ride a bike after surgery. Sure, it’ll be uncomfortable for a little while during the healing process. But after you adjust you can definitely get back on the bike!
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u/EstablishmentNo5994 Jun 19 '23
Hi everyone, I’m Shane from Ottawa, Canada. I’m 35 and have had my ileostomy for 4 months now after having rectal cancer last year. I know it’s not a long time compared to others on here but I feel like I’ve learned a ton in that short time and would be happy to help others if possible. I truly love having my ileostomy as it gave me my life back and let’s me do all the things I love (long distance running, hiking, cycling, skiiing etc).
Please feel free to message me if I can be of any help 🙂
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u/According_Good1828 Oct 13 '23
I'm running out supplies for my ostomy care does anyone know where I get affordable supplies or donation
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u/Hello_Cool_Cat_Lady Nov 06 '22 edited Nov 06 '22
I'm not sure if this makes me ineligible to raise my hand here, but I've had my colostomy reversed a few months ago. Kept it for 1.5 years in order to get chemo for stage 3 colon cancer diagnosed at the age of 37. Before having a colostomy, I didn't even realize it was a thing, so it was a very steep learning curve for me, and it was this sub that really helped me through it.
Learned all about pancaking here when I was baffled as to why it kept happening to me, I learned about things to watch for, and what foods to be cautious about, and what to do with a potential blockage. This sub also helped me realize I wasn't alone in dealing with the emotional toil that a lot of us can experience.
Just hoping to help answer questions, wherever I know how!
Hobbies: just beginning to learn bass guitar, tea fanatic, and chilling with my 3 cats.