yes i had to fight but still losing. never found a support group to understamd esp because i have had 30 life saving sirgeries by myself, wkth still no overall diagnosis. internet shamed me to silence & everyone in my life left me 😢

so sorry i spammed this im just so lost and defeated and just cant do it alone anymore 😢

amd yes the respurces are not there. and like every single “ostomy nurse/dietician” i swear they know NOTHING!! most of the time… no like alllllll of the time, i pretty much teach them

oh and btw after my first ileostomy was placed i said same thjng!! i felt like the best id felt in yearsssss!! yes i had sirgical pain and got infections, needed tubes, but i could tell the other stuff was better. atleast for a short bit cause unfortunately if you read my other messages, it never lasted. 😭💔

even mayo clinic said i was okay. when they called to give me the result i was on the operating table at a random hospital because i passed out at the pharmacy went into a coma & they said my gallbladder had died was necrotic as well as surrounding tissue and i had sepsis. which led to my liver failing three days later as well. aftwr that i just neverrrrr got evens a hint better. to sum it up 5yrs ago i coded for the third time, i was aska pos they said colonoscopy looked like wlrst case chrones but again biopsy neg for chrones. i sat in a coma and nobody knew why or what to do. Week in, scans showed evidence i had multiple perforations, & several other dcary things, they opened me up but couldnt find exact locations of the perfprations and why i kept bleeding. they tried to cauterize a few areas they could see but i still kept worsening. they left me cut open for immediate access and i was in coma anyways….. after several days a sirgeon said if we didnt try something this girl will doe and never come back again. thats HEAVY WORDS! so he took a chance on me and i know whag you mean when u said it means a lot flr a sirgeon to take a chance. je romised to be there that i had skmeone to help me navivate it all. i got better after he cleaned some stuff up amd gave me a loop ileostomy. in less than a hear, despite following every instruction wearing support belts, i began getting so sick. minths and months of tests. alwaya showing just enough for everyone tk be concerned but not emough to have them act. so i go ahead and go on my fam camp trip. two days in im found passed out on a trail, air vaced to nearest hosp they said i was too critical sent me back home to seattle, they said yup hou have massive parastomal hernia, an internal hernia and an incisional hernia., turns out what you were concerned for is indeed actually happening. thry operated (my 30th surgery). this whole crazy scenario repeated three more times and now its like they are just done trying and leaving me to suffer til i die pretty much. idk what to do anymore😔💔

even mayo clinic said i was okay. when they called to give me the result i was on the operating table at a random hospital because i passed out at the pharmacy went into a coma & they said my gallbladder had died was necrotic as well as surrounding tissue and i had sepsis. which led to my liver failing three days later as well. aftwr that i just neverrrrr got evens a hint better. to sum it up 5yrs ago i coded for the third time, i was aska pos they said colonoscopy looked like wlrst case chrones but again biopsy neg for chrones. i sat in a coma and nobody knew why or what to do. Week in, scans showed evidence i had multiple perforations, & several other dcary things, they opened me up but couldnt find exact locations of the perfprations and why i kept bleeding. they tried to cauterize a few areas they could see but i still kept worsening. they left me cut open for immediate access and i was in coma anyways….. after several days a sirgeon said if we didnt try something this girl will doe and never come back again. thats HEAVY WORDS! so he took a chance on me and i know whag you mean when u said it means a lot flr a sirgeon to take a chance. je romised to be there that i had skmeone to help me navivate it all. i got better after he cleaned some stuff up amd gave me a loop ileostomy. in less than a hear, despite following every instruction wearing support belts, i began getting so sick. minths and months of tests. alwaya showing just enough for everyone tk be concerned but not emough to have them act. so i go ahead and go on my fam camp trip. two days in im found passed out on a trail, air vaced to nearest hosp they said i was too critical sent me back home to seattle, they said yup hou have massive parastomal hernia, an internal hernia and an incisional hernia., turns out what you were concerned for is indeed actually happening. thry operated (my 30th surgery). they had to reconstruct me a mesh abdomjnal wall as mine was SHOT! beyond repair. i had caths and tubes and couldnt even use my upper body as id just had both shoulders replaced 😢 this whole crazy scenario repeated three more times and now its like they are just done trying and leaving me to suffer til i die pretty much. idk what to do anymore😔💔

the low expectations thjng you said just hit me so hard!!!

yes me ME ME ME!! Advocated alone my whole life. i got sicker and sicker growing up just as you . im on third ileostomy that is now failing and all dra have goven up on me. thry say iv had 30surgerirs to repair bones and dead tissue dead organs, but no matter what i keep re herniating i still cant eat and my intestine twists and horrjble adhesions. i have not modeled, no more damce nothing. everyone in my life has left and i just sont know how much morr i can take. iv gone all ofer the us soing all kinda pf crazy thjngs and treatments 😢 done all the diets etc. tried to get my story out but social media suppresses my content. now my only life art er to ever stay i feel is about to walk cause he cant handle it 😢💔

I know just what you're talking about and just where you're coming from. I had an ileostomy bag just for 4 months but that was enough for me. It was the most repulsive disgusting thing I ever had it was like a parasite hanging off me here I am walking around with my shit in a bag of the outside. You have one advantage over me you get the stool coming out of your colon which is harder and more formed. I got this stool as it just came out of my small intestine like a watery mud and it stunk the holy hell 4 months I wouldn't go to anybody's house because I knew I didn't want to stink that house out and I had an empty the goddamn thing 15 times a day every time I look down it was filling up gurgling making all kinds of crazy noises I can't tell you how many times it leaked I rolled over on my stomach one night and I had liquid shit all over me all over the sheets everywhere. One day I'm driving along and I see my pants a wet spot getting bigger and bigger and bigger and bigger by the time I got home I had shit all over me liquid shit the most horrible smell in the world then the stoma will get itchy and it would burn from all the poop coming in contact with it I had to take the bag off put some cream on it and pray to God nothing was going to come out while the bag was off that happened plenty to empty it out you have to lean over the toilet so the smell goes right up your nose hey I'm driving along the highway and the bag is full ready to burst so I pull over to the breakdown Lane and dump my shit out of my bag in front of every car coming I had no other choice the noises and sounds that came out I couldn't thank God enough when I got the reversalwere unbelievable

Oh my God!! Dana you made me cry because i was you and suffered with UC before my surgery 2 yrs ago. You spoke to me!! I went through all the emotions still am i did get therapy before coming back to work. Had a lot of problems with leakage was scared of getting out. I am touched i am renewed to hear other osyomates stories i cant put in words what this interview has done and will keep going back to it. LeeAnn just stumbled on your u tube and love it. Thank you thank you. I am 58 and there is light at the end of the tunnel. Thank you!!!

Thanks about the disability bathrooms

I'm like you I put supplies in different luggage pieces. My worst fear running out of supplies 😮

You go girl . People forget about in 10 second ...because we would all really just rather think about ourselves than someone else . Lol. . Plus . People react more to your attitude (personal pov )...positive more than negative Think of comedians that make fun of themselves U can lead or u can follow .

So happy for you Raina. Great podcast/interview.

My wife has had her ileostomy for 6-7 months and everything flies right through. Her small intestine hasn't learned anything. I have to give her daily infusions (1000-1500 ml) so her kidney function doesn't bottom out from dehydration. She drinks a variety of things all day long and it's not enough hydration! I believe she has what is known as short gut syndrome but not confirmed. She has tried anti diarrheal pills to prescription powder and it hardly does anything to slow her output. She can't barely maintain her weight and eats twice what I eat in any given day. It's been very hard to deal with and the options are ???

❤❤❤❤Heart of gold

What does air pressure do to a bag and a iliostomy stoma. I have not flown because im scared what will happen.

Absolutely love this!

What a great episode 💕. I was having a day feeling a little less wonderful because of my ostomy (7 weeks) and this just cheered me up. Thanks.

Supplements please! Thanks for the information 💕

So unbelievably proud of my mum💜Thanks for having her on your podcast, love this episode!!x

Pauline sos program, Stephen Cornish says too enlighten you that his hart belongs 2 u if u have the patience to go on one date❤iwillmakeufeelappreciatedalways.

I LIKE THE IDEA OF DOING THE "MIRROR WORK". I STILL HAVE SOME UNEASINESS VIEWING MY OWN STOMA . THANKS FOR YOUR SUPPORT WITH ALL THIS. YOU DO MAKE A DIFFERENCE.

Just catching up on this episode …. Love it! Communication is definitely key to a great relationship 🥰

Me intwresa conocer como se maneja esta limitacion...en este mundo d incomprension

Sera cierto este viaje,x q no veo evidencias ,fotos,videos,cualquiera puede hablar,bla,bla d cierto tema sin evidencias qnlo confirmen....me tome el tiempo d conocer como es el estilo d vida x q en estos dias observe videos y explican como se maneja en lo cotidiano..me entienden lo q yo me cuestiono?y fuera d eso me toca leer los subtitulos q salen volando como su viaje,x q no manejo el ingles.

I’m sorry but it’s not a beautiful bag. I’ve had my ileostomy since I was a child and had 2 kidney transplants and also an amputee. Born with congenital anomalies and my 2nd kidney transplant which happened in 2021 is put right under my ileostomy and all I’ve had is problems. I lose too much fluid and have hyper granulation around the stoma which I have to get burned off by my dermatologist but they grow back. When the bile and stomach acid come out it stings abs burns so bad. I am a prisoner in my own body. I had to quit my job cause of this damn. ileostomy I eat it comes right through me. I’m in the hospital for months to regulate electrolytes and get stuck with iv fluid with bad veins for all my surgeries that I also get a pic line in the neck for labs and medication. Not fun when I go through all this crap just to be healthy to keep the kidney and have no life cause of this bag and ileostomy. Talk about stuff that’s bad abs hard for people like me. What should I do? I lost all faith in my life and nothing works. I’ve seen GI doctors, colorectal surgeons and no one can come up with anything to help me. So not only is my kidney getting compromised because of fluid loss, but I’m also in constant pain from the granulomas. So if you could help me that would be great. Can’t drink pedialyte or Gatorade, too high in potassium with kidney transplant which means more medications that mess up my digestion. So yeah u may be happy with ur bag but I’m in misery cause I had to give up my whole life just for my health and talk about deep depression and having no purpose in life. I lost everything. Everything !!

Bellissima anchio celo ci rende speciali ❤❤❤❤❤❤❤❤❤❤

BEAUTIFUL MESSAGE. THANK YOU

HI LEEANNE, THANKS FOR ALL YOUR ENCOURAGING AND INSPIRING STORIES AND INFO. ONE TIME WHILE TRAVELING I BROUGHT ALL MY SUPPLIES AND EXTRAS, EXCEPT I FORGOT THE CONNECTOR FOR THE OSTOMY BAG TO THE NIGHT BAG. I SO BADLY DID NOT WANT TO SET MY ALARM FOR EVERY TWO HOURS. AFTER CALLING ALL OVER I FOUND A MEDICAL SUPPLY STORE THAT HAD ONE. THEY WERE CLOSING IN 20 MINUTES AND I WAS 25 MINUTES AWAY. THANKFULLY THE LORD WAS WITH ME. AFTER MUCH PLEADING THEY AGREED TO WAIT. MORAL OF THE STORY, MAKE A LIST AND CHECK IT TWICE.

Where are the show notes?

Hi LeeAnn, thank you so much for sharing. Is it okay to share on my channel? I just passed my 3 year anniversary of having my ileostomy and proctocolectomy and couldn’t be happier. I have always been very vocal about my ostomy and am adamant about promoting awareness and advocacy in the African American community. The stigma is on steroids in my community and I am determined to eliminate as much as I can. My channel is very small, but if it helps one then I am satisfied. I have helped others by just being vocal. I get private messages on Facebook from those with questions regarding themselves, or family and for many they are ashamed. It’s maddening to me. I actually lost a good friend to Crohn’s who would’ve benefited from an ostomy. I’m still learning, but I’m just trying to put out accurate information. Thank you again for your service. I hope to make the 2025 Conference in Florida. The UOAA announced the location on their channel last night.

Thank you so much. I don’t feel so alone and I know someone with an illiostomy. It is a man and I feel he does not seem to deal with the same issues. I am currently looking for any info on digestive health and the gut micro biome with an illiostomy. I was on anti biopics for awhile and would like any info you might have.

Thank you for the tips. I’ll be traveling to Ohio from Michigan by automobile in April to view the full solar eclipse. I have a diaper bag and use pre-cuts. (A life saver). I just had my 3 year stoma-versary.

Hiya!! Enjoyed. superb traveling!Leeanne! 🤘

Hello! LeeAnne! Gilles! From Saskatchewan Canada! Read it many times!

I can't express how much I love and appreciate you and your advocacy! I share your ability and accomplishment of loving yourself and your condition! Positivity helped me beat my terrible diagnosis and my appliance and condition is a blessing!!!! Without this being possible, I wouldn't be alive. I love it and everything about it. Some people go back there, I go from up here. Ain't nothing more too it than that. If I can do anything to help you, please tell me.

What is the reason for getting one? Or I guess there could be multiple.

Lets go north and continue the conversation.

I love your podcast and watch every episode. I had UC and had surgery in January 2021. I love Oklastoma my stoma🥰. When is the next convention?

Where will the next conference be held?

I'm manifesting this, after i publish my first cookbook this year, to go on your podcast ❤ i want to share my gifts!

This message is gold ❤

Love your podcast ❤

tthat's excellent ~ ;))

p̳r̳o̳m̳o̳s̳m̳ 😓

Great podcast! I am facing surgery next week to remove my large intestines and rectum due to UC. I will have a permanent ileostomy.

Thank you 😊. Like you, I often forget that I have an ostomy. I love mine and I’ve been fortunate to not have leaks, skin problems, and other issues that often plague other ostomates with challenges. However, I’m very vocal about my ostomy, and discuss it when it’s appropriate to educate and to demonstrate that my ostomy has given me my life back and saved my life. Although nothing is said, I get the feeling that others perceive this as something that I should be ashamed of. The best way to describe it is how when younger having a menstrual period was perceived as shame. This bothers me, so I guess it’s time to go into my shell so that others are allowed to continue their warped fantasy of the “stigma”. I love your podcast 🥰💐.

🥰.

I love your podcast. I suffered with UC as well as MS. I had a total colectomy and proctomolectomy in January. I now have my life back. I absolutely love my ostomy. I’ve named my stoma Oklastoma🥰. Thank you for sharing the great stories of our ostomates.