Dealing with Loose Ostomy Output (When It's Already Happening) | Let's Talk IBD

[@LetsTalkIBD]

𝙎𝙩𝙪𝙙𝙮 𝙙𝙚𝙩𝙖𝙞𝙡𝙨: csuci.qualtrics.com/jfe/form/SV_8vjY6aSQXWhoI3s We're looking for participants who: (a) Are 18 or older, (b) Have been diagnosed with Crohn's disease, (c) Own a smartphone, and (d) Live in the United States. The study involves using a mobile app for 15 minutes daily over two months to track your symptoms. In return, you'll receive six months of free access to a chronic illness tracking app.

[@ireneferrante2313]

Retired nurse here,you are doing a wonderful job here! Giving honest much needed helpful information. I have recommended your channel to my co-workers and patients! Keep up the good work! ❤

[@michaelandkrystaltucker6091]

Newer subscriber here. My mom got an ostomy at the end of last year after radiation and just had a corrective surgery to it this month (her stoma retracted in and needed to have it pulled forward at least flush again). I've been loving learning more and sending her your videos. It's been a difficult adjustment for her but I like having some understanding of her situation to better support her.

[@michalinabliss8984]

My husband has died but there was a time in his life when he had a temporary stoma and there was very little help available. Thank you for what you’re doing.

[@Julie-ys3qz]

💔

[@karencull9518]

I always wear high wasted jeans no matter the consistency of output. But when it's loose, I slow down the fluids I drink and get in lots,of starches. BTW Maggie, you look so cool and comfortable.😎

[@marciadichiara5688]

You are wonderful with explaining all. To all who suffer my prayers go up for you. Lost my sister due to crohns and gastroparesis side effects. U are all warriors

[@lohikarhu734]

You are a very cool person! You talk clearly and openly about a topic that is often a 'problem' for people to discuss...good on ya!

[@modernenergy682]

I don't have an ostomy but re: biker shorts. I personally wear shorts from Thigh Society. They are pricey but I have had mine for a couple of years. I have the "cooling" kind. They are very soft, stretchy, absorb moisture and keep you cool. They also come in different colors and lengths. I think they will be perfect for people with ostomy.

[@tomistartzman7355]

Hi, I have to tell you, I use the higher waist underwear. They provide some security with the bag keeping it tucked closer to my body. Works really well. Since I am new to having a colostomy, I appreciate all your suggestions. They have truly helped me.

[@edgrabousky9995]

My problem is I have a lot of loose output around the stoma, which leaks down and burns the skin to the point where it’s bleeding. I just can’t seem to find the magic to keep it from getting under the wax seal. And I’m sure you know what it’s like to have that sensation. I really do enjoy your channel and all the good information you’re passing along.

[@menmykrazycat8129]

Thanks for all the info Maggie, you’re the best 😊 On the topic of not eating before (fill in the blank lol). I’ve had a (retracted) colostomy for almost 3 years, it took me a long time to figure out which flange, barrier rings, paste worked for me to prevent leaks. That being said, my stoma is hit or miss as to when it’s going to be active & doesn’t correlate with really anything. If I was standing up to a wedding or was flying somewhere, I’d feel more confident knowing it wasn’t going to do its thing at a bad time, so I’d refrain from eating much. To thicken it up, a banana & a piece of white bread with peanut butter works great. To thin it out I do watermelon & a couple bottles of Gatorade Zero. Within an hour or 2, both work like a charm. 👍🏼❤

[@kimberlyshirey5741]

The Walmart panties work great! My wound clinic nurse told me to get some & try them So glad i did Cause they also worked for me when i went from just wound Packing to having a wound vac ( By the way i hated that) So girl get you some of those Walmart panties You won't regret it 😊 And i live in Georgia And Yes the heat here is Miserable!!! Always glad to see your updates & Videos!! 🩷🩷🩷

[@cgomez77]

Thank you for thinking of so many relevant topics and bringing them up!!!

[@JanePenny-s7t]

I love love love that salmon-coloured dress. Style icon🤗

[@Sandgee62]

My go to is ileosorb gel packets. Has saved me too many times to mention. I have short bowel syndrome and must hydrate a lot. Tried all the other ideas to thicken, the packets for me are by far the best. And yes, just a bit of air does help make things fall better.

[@katrichards1495]

I had an ileostomy in 1986, set up a system that somewhat worked for me. I am amazed by the advancement in care since then. I so appreciate your video as well as the suggestions from your commenters, and will try many of them soon.

[@emilyscarborough60]

My Doctor told me I could take immodium was very loose. Actually Amazon has plenty of immodium at $11 a box. I scrolled down and found Anazon's brand. The ingredients were EXACTLY the same only Amazon brand was $3.75. quite a SAVING!

[@helenm6474]

Imodium has never done a thing to change my output, I don’t know why as it seems to help a lot of people, but glad you found a cheaper supply

[@ibdandme]

Immodium does not work for me at all, but I found Psyllium Husk powder works for me, I mix it with a bit of yogurt.

[@louiseperry6643]

I've had my stoma for over30 years and l still have struggles, and awful days nothing gets better still have leaks.

[@gildamolinar5155]

😢

[@ShyAnn291]

I’ve had mine for 24 years, and I also have leaks sometimes.

[@jodil1209]

I am learning so much from you and I am pretty new to this. Thank you so much for making these vlogs.

[@LadiiieS]

Calita Intimates is my fave underwear brand! I switched exclusively to their high waisted boyshorts and they are super comfy and work perfectly for ostomys! Canadian, women owned small business so its nice to support.

[@lisasallery7860]

My trick for a loose output is a bowl of instant porridge. Oats so simple makes perfect sachets for 1 portion and it can be microwaved in 2 minutes. Starving is no good as it just makes your output like water. I’ve tried marshmallows or jelly sweets.

[@nadinecooper8709]

Maidenform boy shorts underwear are the best. They go over the ostomy bag and also then there are no "pantylines." They hold in the ostomy but they are also cute!

[@jean-marieharris4201]

I use high waisted underwear but I also have a Stealthbelt that I wear 90%of the time. That was a game changer for me.

[@mandybarnett3647]

You do a great job here! I found that Knix smooth wear ( primarily for minor leaks). They are comfortable and moisture wicking is something I advocate! The bras..meh...but for ostomy..it's all about the Knix..the smoothness of them and great stretch at the top and you can really be a bit more comfortable..the ostomy seems to fill without issue. I went to a normal pantie. Like no spanx ! I think that having the ostomy on the outside of the pantie..less sweaty moments..and honestly I empty as much as you from this description...yeast likes skin...and creates sores! I get more that way than from leaks. The Diamonds for the extra time...awesome! I told my hubby that due to recent CoVid issues it was better to change an ostomy than wrestle the potty papers! I said men have things a little easier...he got me a little urinal that is small..and I carry it on hikes. No more trying to " time" everything all the time!

[@melsattitude8668]

I so appreciate these videos.

[@TallulahMorgana]

Just started the video, you mentioned a heatwave whereas here in England it is cold, with temperatures below average and still wearing a winter/Autumn coat in June! x EDIT: okay so apparently this week is supposed to be hot for us, and I confirm that my walk this morning was warm!

[@ibdandme]

I know exactly what you are talking about, I also have very loose output, and yes it tend to burn the skin much quicker when it is so loose. Thank you for the video. ❤❤

[@karenshepler7128]

Thanks for sharing with us 😊

[@alfredorodriguez3078]

You should try the brava protection sheet from Coloplast I bought a hole punch that I use too cut the sheet into a nice circle and I have no leaks at all and my ostomy last one week before I change to a new one and I shower with it and it never peels off

[@sheribayens4898]

Hi Maggie! I have a permanent ileostomy that I received in 1996 at the age of 17 due to Crohn's Disease. In terms of "hiding" your appliance when you have high output, have you ever considered investing in special ostomy underwear called "Ostomates?" They are a game changer with keeping your appliance separate from your skin. They help with panicking as well. Wearing regular underwear causes sweating between your appliance and your skin. Regular underwear also just doesn't work in hiding my appliance. My ostomy underwear hides my appliance so well people don't believe me when I tell them I have an ileostomy!! I hope this helps!❤️

[@ShyAnn291]

Where do you get them?

[@sheribayens4898]

​@@ShyAnn291I get mine online. There are many companies that sell them online, but I get mine from a company called Ostomy Secrets. Go check it out!

[@monicaduncan7109]

Can’t see any underwear company called ostomates? Only groups for people with stoma’s 🤷‍♀️

[@mizkarib]

Please respond

[@monicaduncan7109]

She did answer it’s called ostomy secrets but they only ship within the USA unfortunately 🥲

[@terria3648]

Wish I could wear regular clothes I have parastomal hernia that I had surgery for last June that let loose 24 hours after surgery and the mesh wrapped around the bowel. Couldn’t eat or drink anything for a week before they figured out what was wrong had to have the surgery again a week later and now have another hernia and was told they probably won’t do surgery again. So the right side of my stomach sticks out and very difficult to wear clothes like I did before. I had ulcerative colitis.

[@wondertwin13]

Were in the same boat.

[@mimmie-qj2ti]

I also have a hernia under my stoma. The left side of my belly sticks out a lot. I’m very conscious of it too. I try to wear tops to help cover it. My boyfriend is very supportive and he cares about me so that helps!

[@darlagreene2805]

Same issue but left side.

[@davidlaroche4537]

As a guy, I use suspenders since a belt presses right where my colostomy sits. Very uncomfortable. Your suggestions are helpful. I also find that what I eat affects my output. Mushrooms are the worst since they blow up my Ostomy bag like a balloon. I avoid them…❤

[@melaniethies379]

Hi Maggie it was so nice to see you

[@danas.daily.digest]

I use Walmart high waisted underwear almost daily! It’s just the right amount of support and not too hot in the summer!

[@jodij6280]

I'm in a wheelchair and getting on a plane at 11 am for a 3 hour flight. My stoma is active on and off for 3 hours after I eat. Which means I would have to eat at 8 am. I'm not hungry that early and the thought of eating just to eat is unappealing. I could eat something I know would probably be okay but I'd be stressed and that also triggers my stoma. So I might as well just wait until I get there.

[@shenazpatel8195]

Hi Maggie Lomitil also helps control diarrhea!!! Loose bowel...gels are awesome!!! Thanks

[@lolal1026]

Hopefully there's someone out there who can design some type of undergarments for those who have ostomys

[@michellegallick5719]

I think I know the Wal-Mart underwear you’re talking about! I don’t have an ostomy but wear them and love them. So comfortable! I hope you are able to try them and they work for you.

[@aspin63610]

I can’t stand high wasted clothing because it always seems to sit on my stoma. Though I have found for the summer maternity shorts that the waist comes way up over my stomach and is stretchy and supportive. Otherwise I have found loose dresses comfortable. My scrubs are also comfortable but I usually push the waist down so it doesn’t rest on my stoma

[@CattyT1]

My colostomy usually is well behaved with a change once a day Unless I’m out with friends when the minute we arrive somewhere the bag fills and blows up, threatening to explode! How does it know!

[@nooralhuda8124]

Good luck I wish there was a translation for your videos, iam kurdish I can understand English but a little.

[@stardecelles1720]

I had IBS all my life but in November of 2022 I had emergency surgery due to blockage according to the doctors . Was in coma for 3 weeks had a vent a tracheotomy was in hospitalization for 5 months and have had 3 more surgeries plus in and out hospital throughout that time with sodium dropping and dehydration .so I am curtly fighting to get my Ileostomy to thicken which is hard so any ideas would be appreciated ❤️

[@Tfmira8053]

May I ask what exactly had caused you that blockage ? Get well soon 🙏🙏

[@fredjones4163]

I have found porridge and banana for breakfast and flapjacks during the day with another bowl of porridge before bed very helpful for thickening my output. It is so individual. Hope you find a solution that works for you and sorry you have had such an awful time. 🇬🇧❤️

[@jackielong9927]

🙏🙏🙏

[@melodysmithey3172]

I have IBS and I am going for a colonoscopy after my last one in 2019. Kinda nervous about what they might find.

[@jmiller92027]

I don't have an mating but I sure know what it is like to have a leaky output. I have a drain for bile that puts out 1-2 liters each day. My bag broke at the grocery store last week. That was a fun one. ❤

[@joanieroten8648]

Can you share the link of the underwear from Walmart or do a video sharing garment you feel help like you use to do in the past? Thank you ❤

[@thewisepowerchair2369]

Maggie, different subject entirely. Have been sampling colostomy bags. The pelican platinum two piece. I blew into the bag.The vent does not work. I like being able to put my fingers under the ring on the baseplate. Starting from the top, press all the way round. I found a section at the bottom did not clip onto the ring. When I tried the other way, from the bottom upwards, there was a section at the top that would not clip in. Any ideas, Maggie? I felt disappointed. Coloplast never sent any bags. Not too keen on their customer service. Convatec. Two-piece.You cannot put your fingers under the baseplate. I do not as yet have a stoma (been let down twice). I put the baseplate on my abdomen and gently pressed the bag on, which never attached and I had to press harder which caused me pain. Convatec one piece. I like this bag. I could not do a blowtest as the hole in baseplate is wider, but I like how the material is attached to the vent and has slits. I also like that there is room for two or three faecal movements before one would need to change. I plan on seeing what barrier rings Convatec have.

[@beckyearlene7282]

I am getting one soon because I have water bowels and incontinence bowel and urine. I'm scared to death cause mine is always water and a lot

[@beckyearlene7282]

My bowel died from Blunt force abdominal injury from hit headon by drunk driver

[@streetsvillecc4812]

I’ve had my ostomy 14 years I have a huge hernia it’s heavy ! I have very loose every now and then no reason that I have found it just happens .

[@richkerr8589]

its been fun over here in Oakmont ,Pa with this heat !!

[@exit1983]

Yup here too, in north Jersey yuck!!

[@carolinecoughenour2547]

I am from Pittsburgh too!

[@cherylhurst7093]

I live 35 miles.east of Pittsburgh. Sweltering and the flies are awful this year. I am In a rural area.

[@dawnwinder8335]

I have had CDiff 4 times. Have you ever had it or know anything about it?

[@lesleyharris525]

My best tip is jellybabies, the gelatine will thicken the output.❤

[@gonnabeok.]

Pronounced Sashay (sachet) Maggie.

[@alfredorodriguez3078]

My output is super thick barely any liquid in the bag

[@JL-fh3po]

I have an ileostomy. Whenever I eat my lunch and dinner, my stoma will discharge water fast & furious amounting to 250 ml to 300ml and has to empty the bag immediately (often has to stop my meals to drain it). I tried taking 2 Loperamide and 1 Lomotil pills 30 minutes before food but it doesn't help. Does anyone has the same issue and how to do resolve it?

[@ghost105st]

It Is hot in New Mexico albuquerque USA

[@parkerren]

I love how big your tl stoma is. I use a belt to help have it stick out.😊

[@streetsvillecc4812]

What can I wear for a hernia ?

[@gaylelizabeth]

Anyone know any relatively high waisted CUTE comfy panties to wear that help. I’m 2 years 5 months post ostomy and one year six months Barbie butt surgery that opened and took 9 1/2 months to close with unpacking and packing every other day by nurses that came to my home, it was so painful and now has caused me adhesions with nerve and entrapment. Anyway, I really need some comfortable panties that don’t put pressure down there, but do give support where the Ostomy is. I would be grateful for any suggestions! I started out with ulcerative colitis after sepsis from a botched hemorrhoid banding. I was told it was a super rare occasion to have that happen, but it did and the consequences have been devastating … I am trying super hard to get back to living without chronic pain

[@robinthornton8282]

After my c-section I couldn't stand bikini panties anymore, so I wear me some grannie panties! Lol. They're more comfortable for me and they give you support for your ostomy. IMO

[@ellane-d9w]

❤

[@virginiahamel8973]

Try marshmellows

[@hossin_m_16v..]

سلام من میخوامت❤❤❤❤❤

[@malinnesse3876]

☀️🌼

[@chrisjohanson9284]

🙏❤️👍😊😎🌞🌹

[@wondertwin13]

Also, Amazon sells packs of high waisted thongs😊

[@Mari-j7r-e3j]

[@JL007Inthebackofthenet]

I don’t get why you are concerned. It’s not going to affect you…just means PIF finally have the power to build a new stadium and splash out on top players to bring success faster. If we break ffp rules, let’s worry about that in the future. Get over yourself. You go on about wanting to win things. Now is the chance. If you don’t like it then go and support another club. Amanda has done the job what she was brought in to do and she done a great job. She is responsible for her own finances and has nothing to do with the club or the fans. You don’t know what has gone on behind closed doors. Stop scaremongering fans. Ffs.

[@LetsTalkIBD]

I'm very confused... assuming this comment is not meant for this video?

[@josephferrante713]

During the four months I was outfitted with my ileostomy I had several accidents mishaps or whatever you want to call them. The worst one was when one night I wasn't fully asleep I rolled over in bed and the seal between the bag and me just burst and I had liquid poop EVERY WHERE. It was all over me my hands my legs my torso my face just about every square inch of the bed sheets were soaked and the smell I don't have to say anymore about that she came downstairs and help me clean everything up. You want to know how I dealt with it I laid on the bed and cried like a baby

[@fredjones4163]

I was diagnosed with IBS in 2013, I kept going back to GP and was once referred to a gastroenterologist. The pain got worse and worse then inflammation skyrocketed. GP referred me back to the hospital last year and this time I had MRI and CT scans along with colonoscopy’s. Told I had Crohn’s disease not IBS. Things got worse and I ended up having emergency surgery for an enormous bowel blockage caused by the untreated Crohn’s. Now I sport a temporary ileostomy. I have really high and loose output which is managed with a high dose of Loperamide and smaller dose of codeine both 4 times a day. I have electrolyte drinks too to ensure the health of my kidneys. I have more recently found that a bowl of porridge and a banana for breakfast really thicken up my output and through the day if things do get a bit loose I eat oat flapjacks. I end the day on another bowl of porridge to ensure thicker output overnight, less time getting up and going to the loo. I’m now reducing the loperamide slowly. None of the suggested foods (jelly babies, marshmallows or raw jelly) worked for me.

[@juliae.8237]

I’m sorry you’re having a difficult time. Getting used to a new diagnosis and the challenges it brings is tough. Hang in there 🫶

[@elekay312]

❤