You Might Be WRONG If You Think THIS |
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- čas přidán 17. 02. 2024
- I have been getting a lot of comments with assumptions about ostomies recently, and I am here to share the truth about my stoma!
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ibd #crohnsdisease #ostomy
We're taking care of my disabled MIL who got a colostomy due to colon cancer . Doctors and nurses have not been much help, we've even had to walk nurses through changing her bag when she's in the hospital. You have saved us!!! We've learned so much from you and we're able to take better care of her. Thank you so much!!!
I'm so sorry they aren't helping more! Unfortunately ostomy care education is lacking with nurses (and I'm not sure exists with doctors)! I'm so glad I could help!!
@@LetsTalkIBD We know they're understaffed and overwhelmed. We don't blame them at all. But it's still frustrating when there is so much to deal with and not much to turn to for help. We are so very grateful for your informative videos!! Keep up the good work! You're making a world of difference!
Other than ostomy nurses or those working in a general surgeons office I don’t think nurses or doctors know much about ostomies.
A PA screwed up my bag when I was in the hospital and when I asked the nurse she for help she had no idea what to do. Also it was super disappointing but the hospital didn’t offer convex wafers which was what I needed
@@A---ti3zz, I've always been curious why people become helpless in the hospital. I mean how do you manage at home?
@@bcayehow was I helpless? I wasn’t planning on being in the hospital and didn’t have extra supplies with me. I was trying to get stuff to do a bag change and the nurse had no clue
Also people are ill and/or injured in the hospital so maybe they need help.
Pretty disgusting for a respiratory therapist to sit there judging patients. Perhaps you should rethink your career.
You’re a jerk. I’m curious how you apply sunscreen inside your nose. Your nose is stuck so high up in the air you have to be getting sunburns
Everything I know about my ostomy care, I learned from you. Not a single session while in the hospital after my emergency surgery. I had to figure things out myself - and then I found your channel! Thank you so much for educating me!
I'm so sorry they were not more helpful in the hospital!!
Most nurses and doctors don't know anything about ostomies.@@LetsTalkIBD
You are a remarkable and intelligent young woman. You’ve helped so many stoma people.
My doctor said most people give up on life with stomas. Told me I've got 5-10 years with a colostomy to live. 8 years in, sober for over 2 years. Actually helps in my car camping with a tent and 2 dogs. Thank you for the video
You should fire your doctor. They sound like a moron and probably should rethink their career choice.
I don’t think most doctors or nurses have a clue when it comes to ostomies…gotta talk to a general surgeon or ostomy nurse. My pcp used to look like he was going to puke when he would see my bag and no it wasn’t dirty or anything…he was just dumb.
Your doctor’s opinion is not helpful. Needs to go back to med school and study bedside manners!
I'm glad you're proving your doctor wrong! I met an ostomate who got here at 25 and she's now 80. She says there is so much more acceptance now than before and that has helped her a lot. Proud of you for your sobriety 🎉
What a terrible doctor I’m begging for one I’m so desperate
My uncle had been living 30+ years
I used to have ulcerative colitis. Two months ago, I had my surgery. You have helped so much. Your honesty and ability to talk about anything has been a huge help and support. Thank you.
Thanks for all the work you do educating people about ostomies! I'll be celebrating my 20 year stomaversary later this year!
Exactly.
I know klinfelters and turners..
Turners is something i live with
I just want to Thank You again, Maggie! I'm on day 12, in the hospital still, with my new ostomy and you are a God send! I HAD Stage 4 colon cancer + the radiation is why I needed the stoma. Was diagnosed the day before Thanksgiving 2022. As far as they can tell, they're pretty sure the cancer is gone...waiting for 1 test result still but I have complete Faith I'm cancer free now. Which I still don't understand because I thought I had a death sentence. I'm just so grateful. I'm in pain + miserable...but happy + relieved. You have become my new bestie here on CZcams. Thank You for your honesty, sharing your experiences + making this channel. You are beautiful + Im sending love + light to you ✌️💙
Sending you light & love on your journey.🙏🏾
My grandmother had a bowel obstruction at age 93. As a result she ended up with a stoma. I use to change her bag. She was too old & frail. The CNA’s at the care facility would neglect her colostomy bag & not change it
when it was full. I would
drop by after work every night before heading home to make sure she was clean. It wasn’t pleasant but I considered myself privileged to care for her during end of life.
I'm 61 years old. I've had my ileostomy since September 2020 because of ulcerative colitis. Having my stoma has given me my life back. Love your channel. I've been watching you since I started this journey. You've been a great help!
My colostomy allowed me to heal from a colon cancer surgery that went ‘bad’… I got peritonitis. My stoma helped me heal from that problem. Yep, close to ‘death’s door’, I know that experience with the peritonitis. My stoma helped me live…putting it bluntly.
Well done, Maggie!
Thanks Maggie. I am not a stoma person nor know anyone who is. I just enjoy learning and seeing your videos. Cheers
New temporary, hopefully, ostomy. I have been lurking here about a year. Thank you so much for your information and positivity. You have made a difference for the better for me.
Hi, I had a stoma for 7 months 1.5 years ago. All back to normal now, I hope it will be the same for you! It was really helpful to listen to Margie's channel...
Thank you so much for the positive wishes. It is great to hear your success story!
Thank you Maggie for your transparency whilst educating people about ostomies and IBDs. I feel like even after having an ostomy going on 5 years now, there is always something to learn about managing my ostomy. I appreciate you and your channel very much Maggie!! Thank you 🤗
I have my ileostomy a and I am currently using Hollister bags I have developed an allergy to the adhesive that Hollister uses, I have been in constant communications with my Ostomy Nurse. As Friday 15 Feb 2024 my ostomy nurse has casted a mold of my stoma to send to Nu-Hope so that I can try those products. My ostomy was also done under emergency surgery and it has saved my life. I am steal dealing with having an ostomy due to my initial surgery my surgeon told me he could fix me and gave me a 90% chance of not having it well all went sideways and here I am today. You have been a god send seeing how comfortable you are and seeing that Im not alone in this journey. Thanks for doing what you do.
Mornings with Maggie! This 68-year-old newbie reads your new vlogs first thing each morning. I am learning so much. I have a beautiful and intelligent (like you) daughter your age. Thank you so much! Hugs! ❤
I love how you use this as a great opportunity to teach us! So glad your doing this ❤❤
I've been reading some of the comments on this video. I think it is lovely that you are helping so many people with the information you share in your videos and that you show people that they can live a full life with an ostomy. Well done for being brave enough to 'bare it all' in order to help others :)
I had colorectal cancer in 2018 and had a temporary ileostomy,had a reversal,then developed a fistula and that made me end up with a permanent colostomy. Then developed another fistula as well as an abscess in my pelvic area so I got to have my Barbie butt surgery this last September. Still healing. Still looking at more surgeries All of this is from radiation damage. But I’m thankful I’m still no evidence of disease. I enjoy watching you telling your experiences.
Youve got this !❤
It's mind blowing how similar our stories are, got sick at 17 but I had a real bad time for a decade ish and had surgery in my late 20s in a life n death situation as well! I had my period very irregularly and my weight was always something I've had to try n keep it on which has been a big old pain in the butt no pun intended lol! So I never had kids between the weight thing and irregular periods and then at 39 I found out I was post menopausal so kids just weren't in the book for me, I do have lots of nieces n nephews that I adore so don't feel like I'm missing out too badly but would have happy to have the choice but not in the cards so..... thank you Maggie not only do you keep me/us informed on new products n everything but you always make me smile! Hugs from the cold assed north!!!!!
I have intestinal problems that could progress to an ostomy. You make me a little less anxious showing that its not the end of the world.
My ileostomy saved my life and is the best thing that could have happened to me. Don't worry about it. It's way better than what you have now.
Thank you so much for this. I suffer from LARS due to bowel cancer surgery. I am booked in for an ostomy later this year.
You preached today ❤. I’ve heard em all lol. I actually give M9 to friends and family because I discovered that a few drops in the toilet works just as well for non-ostomates. Nurses at my local hospital have it on their desk up front and I once asked why? The nurse told me that those who smoke put it in spray bottles and use it to spray in the air around them before returning inside. She said that it works well.
Great explanation! I swear you should give a Ted Talk.
I was born 3 mm months early and had intestinal disease twice. It caused a narrowing in my bowels, but I was too small for an ostomy. I am thankful that I did not have too many issues as I got older, so I did not ever get one. Love your content!
150,000 followers! 🎉 Congrats!
My Dad had an illiostomy before passing with lung cancer. My youngest Brother has an Illiostomy as an emergency, for 4 years. His case has been quite unusual and he still experiences complications. Thanks for sharing your experience. It helps us all to be sensitive to, and supportive of loved ones
I had a temporary ileostomy - I had an infection from diverticulitis and had a portion of my colon removed. During healing I had the ileostomy which I was able to have reversed about 4 month after surgery. I know it can be a very scary situation for many people - but it is manageable whether permanent or temp. Thanks for the great info you provide!
Thanks for your videos..I’ve had my ileostomy for 11 years now ..after suffering from Crohn’s disease for 30 years..and though I was nervous at first, it gave me my life back too. It’s amazing how we..and our bodies..can adapt to change..supportive family..friends and partners make all the difference..gave me my life back❤
So I'm just sharing because I thought you might find it interesting although it's odd. We got our second French bulldog puppy and he had severe diarrhea, which led to rectal prolapse. At first he would strain and strain, prolapse would happen, but by the time I got him to the vet it would correct and they would tell me everything looks fine. Didn't seem right to me because I was seeing it at its worst but naturally you assume they know best. Finally after months of this he prolapsed badly, it was not correcting, I was freaking out bc now inches were hanging out, it was bloody and smelled awful, he wouldn't be still (which made me terrified he'd hurt himself) so I called my vet (the same one who'd been playing everything down for month n months) and they said sorry, there's no surgeon here, go to emergency vet. So I rush there with this poor puppy wrapped in a towel on my lap and they have me waiting until I started to cry and said please help me, I can't keep him still! Finally a kind vet tech said he would take him and get him stabilized. Now, when I got called in they were not very kind at first asking why did I let it get to this point, why didn't I see a specialist? I had to explain I'd taken him to my reg vet many times and was mostly brushed off. First they tried to essentially stitch his rectum to hold it in (didn't work even a little. We took him home and he just strained and strained until it came out again)... second time I rush to ER vet now they are concerned about necrotic tissue and say they'll have to remove part of his colon. After that surgery we finally bring him home again but he's constantly dripping blood and mucus, always straining... it was awful so we brought him back. After tons more expensive tests the vet found lots of strictures and said he could go in yet again to repair them but there was no guarentee. Did that, vet said he repaired almost all but there was one stricture he couldn't reach without breaking the dogs pelvis so we would just have to hope it was good enough. It wasn't. Trying not to make this more of a novel but we tried everything until the vet said at this point if he were a human he would need a colonostomy bag which is unfortunately not an option for dogs. We had to put him to sleep.
Now obviously I'm not comparing you to a dog lol but watching your videos I was struck by similarities and how much more I understood some of what happened to that puppy (which I'm sure is NOT your goal, but hey, I found it fascinating and no one made me understand the way you have and its nice to finally really grasp it and also super interesting that those similarities exist between pets and humans right??) Pretty amazing. And I don't know I just thought I'd share that thats probably the weirdest reason anyone became interested in your channel lol. Thanks!
Thanks for letting people know how much you this improve’s there live’s , l have had one for 28 years. I would not be here with out it. When I first got it no one talk about it , l felt so alone. Thanks for all your help. Love ❤️
My hubby just turned 45 and a month later was in the hospital for emergency surgery. Stage 4 colon cancer. I appreciate you and your channel, you are teaching me SO MUCH and that is helping me help HIM! Thank you ❤
It's crazy to me that there are still people who think someone can be too young for a chronic illness. Unfortunately I've had to experience it myself and I think it's a little ignorant to say to someone's face.
It's seriously ignorant, and very frustrating!
As far as I'm aware, there aren't any diseases that children _can't_ get. Childhood alzheimers exists (and is absolutely tragic). There are babies born with cancer. Progeria is a thing.
Just because something is rare in a particular age group, doesn't mean that it _never_ happens - there are always outliers!
I had a heck of a time getting diagnosed with a particular autoimmune disorder because it most commonly affects people who are 50+, and I was only 18.
But man... the absolute gall of people who tell you to your face that you can't have a particular disease because you're too young - it's utterly boggling.
Do they think that we're just making it up, or what? Truly baffling.
I’ve had mine without major issues since I was 21, due to UC. Some partial blockages. Also have two children.
I've got the "flat stoma", had it operated on in 2019 and 2yrs later its flat again, now have to dilate it every few days to keep it open plus need to watch what I eat, no nuts, skins or currants as they may not pass through.very informative channel,keep it up.
Aww man! That must be frustrating!! I hope you are feeling alright!
I’ve been watching you since your college days and now I have a boyfriend with a stoma it is cool to have previous knowledge of them because of you
You make the information you impart easily digested! I too had life saving emergency surgery. Mine was a colostomy. I was 74, and it was because of extensive diverticuloses that got infected and became 'itis'. Here it is a year and a half later and as a lot of ostomates say: This has given me my life....'back'. Your approach is incredibly honest and helpful to a lot of your fellows. I hope you enjoy a long, and happy life.
I've had a MACE/appendicostomy since I was 3. I have Spina Bifida. I had to have multiple revisions as a small child and mine use to hurt me terribly. I'm in my 20's now and I'm just use to it at this point.
Hi Maggie, I have had "Lucy" for almost 4 years now. I have learned so much from watching your channel. Keep up the good work. By the way I just finished reading the Winter Garden. What a great book !
I decided to read that one before The Women! I'm struggling to get into it but I'm going to stick with it! I know hers always picks up!
You are a breath of fresh air and sunshine. Keep up the videos as you are truly an inspiration to so many. I am watching simply to understand and educate myself but your spirit shines through every video and is a lesson to anyone struggling with any issue. Bravo!!!!
Been watching for years, and I’m gonna be so prepared if I ever get a ostomy/stoma. I come for all of your content IBS related or not ❤ love you!!!
Thank You Maggie, I've been following your videos for about two years, came across your content in 2022 after my bladder was removed and wound up getting a urostomy,the nurse's in the hosp.really didn't teach me anything involving my tranfer to a bag, except how to put it on and take it off,and keeping it clean fre bacteria.Maggie you tought me everything I needed to know.I want to thank you again for all of the valuable information you gave us.take care and God Bless.🙏
I am so thankful you have made so many amazing videos. My mother had emergency surgery performed a little over a year ago for a perforated bowel and severe infection in her body, and ended up with an ostomy and your videos are so helpful! She is still learning all the ropes and how to deal with leaks etc, but as a family we will do our best to help her conquer any and all challenges she faces ☺️.
Thank you so much for your videos! I have had my ileostomy for 3 years due to colon cancer. Your tips are so helpful and still learn from your channel. You are right, it is scary to see younger people with colon cancer. Good job on videos! So informative
Your videos are so informative! I didn’t know much about any of this before I found your channel, and your info is very easy to understand! It’s a bit of a relief, as I’m going through some abdominal issues and fighting the battle of doctors and appointments. It’s a relief to know I’m not alone in the pain and struggle of the GI world right now.
Thank you. Your positivity is inspiring ❤
My close friend had chrones, they started taking his intestines out when he was 14 after a local corporation was dumping toxic waste into the locals well water. They got him hooked on opiates at the same time. Around the age of 40 his Dr's told him he was out of options and would need a bag. He killed himself not very long afterwards. I don't blame him, he had been through so much medical hell already.
I wonder if he would have felt any different if he had seen your channel.
Sounds like me, but I’m begging for an osteomy
@@nikkimclay5474hang in there Nikki. I begged for mine as well. I had a Gastroenterologist that seemed only interested in trying new medications that did not work. After landing in the hospital for the 6th time in 2 months, he accused me of drinking. I knew that I needed to ditch him, but was too sick to fight. A Nurse came in later and I asked if there were any good Gastroenterologist that she would recommend. She gave me the name of a Resident that was working under my Surgeon. He brought in the Surgeon the following day and within a month I received my permanent ileostomy and barbie butt at one time. I haven’t looked back. For me, (I can’t speak for others) seeing a Surgeon is what helped me after 10 years of suffering.
A friend of mine had Crohn's. He was so scared of needing a bag he delayed and delayed. It must have gotten so bad he finally went in for the surgery.... They found stage 4 bowel cancer. It didn't end well.
Personally severe endometriosis here. Went very very close to waking up from surgery with a bag but somehow they were able to remove the diseased tissue without affecting its function. However, it's over 10 years later and surgery is on the cards again and this time my anatomy looks a mess on the ultrasound. I know I'm unlikely to get through so easily this time and it terrifies me. I struggle dealing with any kind of faecal matter, even cleaning up after the dog I end up heaving.
One of your most useful vids. Thank you so much, Beauty!
Really enjoy your videos, you keep it real. I have a nephrostomy, have had it for over a year. It is/was supposed to be temporary. I’m still waiting to have my ureter reconstructed. Cheers
You have help me more than all of my Drs including 2 surgeons.. Going into my 3rd week colostomy & I was not doing good,netvous,living alone & felt hopeless.. Thank you so much.Waiting on my products to be deliverd for flanges & bags ...I get worried about products having very little money but somehow I'll get thru it too.. Love Light,Peace..GodBless❤
Not sure why you came up in my feed but I think I was looking for Perianal biopsy procedures. I was hooked when I heard Philly. Born and raised in Philadelphia Fishtown then Olde Richmond. I think your videos are probably helping thousands of people. I started binge watching last week when I was down with a kicker head cold. Keep helping people with your videos you are doing an amazing job.
I know ileostomy. My uncle has Crohn’s. He got to 90 lbs at 18. He was a skeleton. His stoma saved his life. He is now 60.
Thank you so much for your videos. I have had UC for over a decade, and am sick of failing meds. Seriously considering surgery. I only get 30 mins with my specialist every few months, and it's not enough time to understand the ins and outs of it all. You have helped me so much to understand what I may be in for 🙏
Thank you! Living with a permanent ostomy. I am so excited to try the close I am the same as you constant leaks. All my output is liquid and I’m getting very dehydrated.. thanks for not letting me feel so alone.
You have such a beautiful spirit!! ❤
Good girl, sharing and caring to share your story so others can learn and thrive!!!
i don’t have an ostomy but am really interested in being educated in this subject. thank you so much for sharing your journey.
Thank you for sharing with us and take care. Very informative.
This was fascinating! Thank you for this video!
Thanks for always sharing your knowledge snd give us soo much information you have been so much help
I have Spina Bifida and it’s looking like I will have to get a colostomy in the near future. I’m also young to have a stoma which is so scary, because I know it’s a decision I’ll live with for the rest of my life, but these videos are insanely helpful with the fear and anxiety I have about it!
Thank you for your interesting videos on this subject ❤
In August 1968, I had our 2nd baby. Exactly one month later we buried him😢
He was born with Herschsprungs disease (in his case, no nerves to his bowel) Had Steven lived, he would have had a stoma for the rest of his life. My brother had a stoma in his 60s, and one of his sons has had a stoma quite a few years now, with no option for a reversal. Both needed a stoma for different reasons. Our son born after Steven, at 29 years old, had an emergency major operation and surgeons successfully prevented the need for a stoma.
Another fantastic video. Thank you.
I got my colonoscopy in November. My surgeon said it can be reversed where hopping in April.
Well done❤❤❤❤ thank you! You’re a brilliant Beauty!
Important video AND your earrings are super cute!
Sorry that you have to go through this ❤ You handle it well it seems and have a great husband
I suffer from endometriosis, and I've heard several cases of women suffering from this desease which end with and stoma, too, because they have their intestines affected. Me myself had a nephrostomy for four months, because endo affected my ureter. Luckily it was temporary, but it's important to raise awareness.
I have heard of this as well! Apologies I didn't mention! I hope you are doing alright!
@@LetsTalkIBD thank you! Fortunately I'm fine now, getting checked every six months to be sure my ureter isn't blocked again. Congratulations for your channel, very educational! Greetings from Argentina
Yes that’s me but they won’t give me a bag just resect bowel & gave me chronic severe pain, opiates & no life, they say a bag won’t stop the pain but the pain is where they stapled it back together on both sides !
I have a sci with loss of use and control of my bowels. I got a stoma 6 yrs ago for the Bowles and a stoma for the other.
Thank you for sharing your story.
Do stomas cause pain? I’m dealing with gastroparesis and am 77lbs and dropping. It’s getting scary and I’ll be having a Gtube again which is so depressing to me. My illness has no cure so there’s a lot of surgeries I have to go through. I was diagnosed in 2020 if I can remember. Thank you for sharing this video because it has given me hope with my situation. I have IBSC so I’m constipated all the time. I get lucky if I can have have a bowel movement once a week…again if I’m lucky! I had a colonoscopy and woke up during it so I kept trying to get off the table🙈. I just found your page and I love learning about stomas and ostomys
I was 16 when I was diagnosed with ulcerative colitis and 19 when I had my. Ileostomy surgery, also emergency like you
Great video Maggie!! Your videos have been a big big help!!
My wife has an ileostomy (her 2nd one) and has recently developed a bad rash (fungal) around the border and slightly under the bandaid area of the appliance. She was wondering the best way to dry the area around the mount and the back of the bag to help prevent the fungal issues?
( She is currently taking medication for the fungal problem with powder to help the irritation.)
If she wants to prevent moisture, an ostomy shower guard can be really helpful! It is a clear piece of plastic that has adhesive on all four sides. For drying, I love this cover from C & S pouch covers! Its made from towel material. I have had mine for nearly a decade and it works as great as the day I got it! www.amazon.com/Ostomy-Covers-Cx72750-Opening-Overall/dp/B00PRJ1YYU
@@LetsTalkIBD Thank you so very much Maggie!!! We will check those out. 👍
You are such a wonderful person and you make so nice and useful videos. Thank you very much from India ( Delhi).
But i would like to know you had Crohn's or you had Ulcerative Colitis. As Crohn's mostly affects the small intestine , namely terminal ileum and early part of colon. Rectum is generally spared so a J or S pouch may be possible. I had UC and developed adenocarcinoma. Had Total colectomy with J pouch and Ileostomy ( 6 months back). I am ok but not gaining weight at all. I will have reversal after 3 months
I had a ostomy last March , best thing ever. Stoma is the way to go
Hey Maggie! I am having a proctocolectomy on the 21st and have some question. I have heard from 2 different creators that when their loop stomas were converted to end stomas they saw improvement in dehydration, had less instances of high output days, and were able to start gaining weight, had more energy, etc. I know you never had a loop stoma but wonder if you might speak to insight on how your body responded to your diseased colon being gone and maybe see if anyone watching may have had a loop stoma at one time and can comment about that aspect. I am so hopeful!!!
I was 74 pounds and no period...after ileostomy i also ate like crazy all the time!
Maggie, please tell-what deodorant drops do you put into the bag?
Mostly ppl say that those don’t work so please tell us which ones you use.
Thank you!
If you don’t mind me saying, I use Hollister M-9 that works well for me. Product # 7717 my insurance pays for one large 8oz bottle per month.
Good information mam Thanks I am from Gujarat porbandar My younger sister is also this problem from last 15 years india
I know it's not the same, but my boyfriend has 3 severe pilonidal cysts in his butt crack and chronic constipation, which doesn't help. He had surgery to fix it 3 years ago but they popped back up and got pretty infected. He had a second surgery about 7 months ago and he's been having a hard time with the recovery. He's scheduled for a third surgery next month because it doesn't seem to be healing. He's been off of work. He had to pause his schooling.
If you are comfortable with it, I would love to know about you recovery process and maybe some of the things that helped you. The things people don't think about. How to "sit"? How to sleep? How to walk? What did you do during that time?
We take out butts and guts for granted and we don't talk honestly about them enough.
I love your content! Have a lovely day! ❤
Question: probably a crazy one. How well do the various types of wafers adhere when you get hot and sweaty? And how what do you use product wise if they dont? (I dont have an ostomy but am a 50 y/o female with hot flashes and i cant imagine trying to get anything to stick anywhere for very lonh)
The bags are actually pretty good and there are a lot of things to make them last longer. The area has to be dry to get it to stick but can get wet afterwards. I used to shower right before putting my new bag on
Thanks for all of the information. I am considering an ileostomy. My colon was removed due to a neurological condition the killed the nerves and motility of my colon. Unfortunately the surgery did not remove all of the nerve damaged colon and motility is still a struggle. Wondered if insurance covers any of the ostomy supplies?
It depends on your insurance. I have Medicare+Blue due to being on Social Security Disability (due to MS). I start the year with a $25.00 per month co-pay, but once my deductible is met I am covered fully for the necessities.
I got my stoma and ileostomy when my bladder removal (due to cancer) had complications. Now, my output is huge and i have tons of problems with my skin because of the adhesive used. My skin reacts to it like an allergy. It gives me horrific rash type reaction and pain. I still havent been able to leave the hospital yet because of it.
If you are seeing a WOCN or stoma nurse, ask about using Flonase (like the nasal spray)! It has a steroid so you should ask about it before starting it, but that helped me a ton with my allergy-like skin irritation! Also Marathon (a skin barrier) is awesome!
@@LetsTalkIBD thank you! I will definitely ask about this!
I have a conduit i sometimes worry about how bad the pee smells it makes me feel good about not being in bed all day
I had had UC for over 25 years when I got my colon cancer in 2022. Then the entire colon was removed and I had a stoma. The doctors recommended a pelvic reservoir but I felt free for the first time in my life and a pelvic reservoir would take me back to a life on the toilet. I am now 39 years old and when I got my ostomy I was able to do things for the first time without thinking about where the toilet was as my UC was extremely active all the time. Like constantly having relapses. A liver disease accelerates and creates cancer in my body and now 2.5 weeks ago they operated on a rectal amputation. Now I'm faced with the choice of whether to keep my stoma or let them operate on a Kocks reservoir, which for those of you who don't know is like a stoma bag in the stomach that you empty with a tube. I don't know what to do but I asked the stoma nurse why is no one talking about keeping the stoma. She answered because unfortunately the doctors don't think that anyone wants to live with a stoma and therefore they recommend other options such as a pelvic reservoir or a Kocks reservoir. The stoma allowed me to live for the first time in my life. And it also saved my life.
R U using Hollister ostomies or is it a different brand I remember you mentioning using Hollister ones
Hi Nagy. I have illyostomy too So do you have a small hole on oposide right in line with your bag??
I had a colostomy bag due to diverticulitis
You go girl
My daughter got hers at 6.5 years old due to neurogenic bowels/tight tone in her rectum so mace wouldn’t work due to still needing rectal stimulation
What is the best deodorant you have tried. I just made a first order of Coloplast brava. I've heard the m9 works best. I'm worried about blue leak stains but willing to try anything. I lost 100% of my sense of smell and hubby doesn't have the best nose lol. Do you already have a video on those?
M-9 works great for me. I am very careful of spillage, but it does clean up well for me whenever it happens.
@@Quesviewsofthenews i might try some next month to see what I think. I just ordered some Devrom. Its chewables that are supposed to work from the inside. The reviews seem promising at least
@@chascatt I’ve never taken Devrom, but after having lap band surgery in early 2004 weight loss surgery patients swore by it. Although M-9 is odorless it is 2000x better than Poo pourie.
I have a rather large hernia above the stoma (I have a sigmoid colostomy after removal of rectum) - is there any benefit from using a hernia belt? If so, which brand is best - I see coloplast has one that I could get,
I definitely ask your doctor prior to starting with a hernia belt just to ensure its safe! There is also another one from Nu-Hope!
Hello sister God bless you 🥺
Yer the best, thank you
Where does the mucus go. It would build up?
I'm dealing with that right now.
So was I. They gave me 6 hours to live
I have a temporary Eliostomy so I am waiting for my reversal
Some days I feel a sunburn kind of pain in the area of the bag I’m wondering if it is the adhesive of the flange ?
But then sometimes that feeling is in a different area of my stomach by my incision. Is it maybe just the nerves healing or is it the Eliostomy bag ?
It’s almost like a pulling feeling but when I take my bag off there isn’t any redness where this discomfort is coming from ?
Thank u
I can barely eat vomit up blood accidents etc
Just wonder what regular meditation are you taking for your condition, thanks !
Right now just Humira for Crohn's!
@@LetsTalkIBD thank you kindly for the prompt reply. Just one more question if you don't mind, did you have to take prednisone or tacrolimus for the inflammation?
I have a strange question, just out of curiosity. Passing gas, with an anus one tries to control that in public due to noise it can make. With an ostomy, does that not happen (no noise when gas passes) or does it, but with it not being controllable?
Hi, I have an ileostomy too. Yes we pass gas, loudly in some instances 😂. I cover with my hand to try to muffle the sound because there is no controlling it. I try to avoid foods that produce gas. My stoma that I’ve named Oklastoma likes to get noisy around strangers 🙄. Another thing is that filters are useless and my bag will blow up like a balloon once filled with air and must be burped. Burping is opening the bottom to release the air.
Yes to everything above 🤣 my stoma can get VERY loud!
Thank you for answering! I always wondered how that worked! 🤣🤣
Don’t know about anyone else, but when it happened to me, it kinda tickled or felt fluttering before blowing the bag out. Hard to really describe.
@@exit1983 mine will do that too sometimes giving me fair warning. I’ve also figured out that if I am talking for a length of time that air will build and escape…..(LOUDLY) lol.
My output can be stinky 😂
Ur right