I wish there was a better solution for people that have had issues that require this. You'd think medical science would've advanced enough to address this. Very brave being open and talking about this and proud that you have been able to overcome and endure.
I get frustrated with my support group who tells me that I should be okay after a year with this. They also talk about all their traveling, swimming, etc. Meanwhile I'm living in my bedroom so I can be near a bathroom in case I have a leak or it bursts. Whenever I go out I have a suitcase of supplies with me (including a change of clothes). This becomes overwhelming to carry everywhere because I also walk with a cane, which leaves me only one hand for everything. I also have to wear a mask when I go to meetings because of COPD. People think I have Covid. Finally, people say they shower without a bag, but I can't do that because I just know the stoma will burst all over the shower causing another mess to clean up. But I think when someone says they forget they even have a bag hurts the most. I can't forget because I'm thinking about it all the time. Sorry for venting, but your title told me this was a video meant for me.
Yes, I get you. November went to the Dr , on the Monday, Tuesday was in surgery for a stoma! Woke up February ish dates are vague so now I have myeloma and a prolapse stoma, not been a great year but I will be seeing the surgeon on Tuesday 3 October, yay?
Yep, I get the,"You look okay" and I think to myself "If you only knew the pain and emotional distress, I go thru on a daily basis"! I put on a brave face, make jokes and show the strongest side I can in public but when I'm alone, sometimes the frustration of it all overwhelms me. I have had ten surgeries, my hernias have hernias and the pain is only getting worse. It's not easy to continue to get pain medicine, because the pain doctor I go to doesn't seem to understand my pain is not going to get better no matter what he tries!! extremely frustrating!!!!!!!!! Then on top of all that, He says we can't get rid of your pain and we can't continue to give you pain medication. I don't know what to do when it comes to pain management, sorry I'm venting my pain frustration!!!!
Ooof. Yes, that sounds very rough. You may find this article interesting, and helpful when speaking to your doctor: www.npr.org/sections/health-shots/2018/07/23/626202281/words-matter-when-talking-about-pain-with-your-doctor
I got shot 3 times in my belly had 8 feet of small intestine removed and i awoke out of my 3 week coma to an ostomy bag.. I had 11 surgeries done all in the span of 16 days... I had my bowels exploding out my midline incision which led to my ileostomy... Thank god I'm still here . You've got this! Stay strong and keep fighting the good fight i was crying everyday in the hospital because i felt so insecure.. I quickly got over it and im now enjoying my life to the fullest
I bough a carbou ostomy bags last week on Amazon, after having a horrible month trying to keep the coloplast bags with out leeking and been so desperate because I work in a restaurant I found out that Amazon sell differen brands. THIS IS THE MOST AMAZING PURCHASE NO LEEKINGS AFTER BEEN CHANGING 3 or 4 times a day with the Coloplast ones. The reviews on Amazon are AMAZING
Laura, thank you for being HONEST so irritating to see all these gushing people on video telling you it is all fantastic. Even my husband told me after a permanent stoma is you can eat everything. After having a temporary stoma in 2009 for six months I know that is not true. Now I am facing a permanent stoma and your videos have helped me so much. Tell the TRUTH don't sugar coat it and people will appreciate it so much. The only comments I got from friends in 2008 and 2009 after my surgeries was "Isn't it great you do not have cancer" which made it impossible for me to be honest and tell any friend how desperately frightened I was.
I love this video, Laura! I've often worried about the inability to get supplies in a catastrophic natural disaster, too! The best we can do is prepare in advance!
Me too!! It genuinely didnt occur to me anyone else felt that too! My best friend assures me that come armageddon she will fashion me a mad max style pouch out of sandwich bags and sellotape which we will ransack empty house for...could be fun! ;)
Hi Laura...The amazing thing about issues that bother you. is that you have found a way to overcome them. In everyone’s life a little rain must fall, however you are never without an umbrella. I’m sending you a Cyber hug all the way from Australia, I hope you get it. 💐 🐨 🦘
I am facing this now as a result of radiation stenosis and ulcers that have formed. These videos are so helpful! Thanks for all you do! You feel so alone until you can put a face with another that has gone through this.
I really appreciated you acknowledging the “you don’t look sick” issue. It’s really something I’ve personally dealt with these past 3 years. It really does cause a sort of mental trauma, I know how I feel and I’m the only one that does. Anytime I’m told but you look ok. I begin to question my 3 years of medical issues. Am I really this bad off? I’ll even think, “just stop” “be normal” “get over it”. Your videos are proving to be such a help thank you. I have ostomy surgery planned for the 13th of May this year 2019 and I can’t thank you enough.
@K yes it is a life altering change that's difficult in all aspects....due to the sounds and potential leak issues I don't eat at work, I'll go an entire day on a banana. It's real and it takes time, but (I hope) we will be okay in time. I mean, it's better than being in pain and all the other awful reasons we have an ostomy (or cancer or death, whatever the reason)
Lovely video! What I’ve realized is that I don’t have to identify with my pain and journey to where I am now. It if a big part of us but we can rejoice in the fact that we are now healthy enough to appear as somewhat normal:)
I use to get leaks as well.. Until I started to use the ring under the flange. Never have had a leak since. They are great. Believe you can use it with any type of flange. I also use an ostomy belt and tape around my flange to keep it sealed better. Maybe try some of these to help with leaks.
Wow what a wonder person you are Laura, I lost my large bowel 30 years, the catastrophic natural disaster ostomy mates is a worry, people in third world countries also worries me, how do they get on ?
I wear a bandeau top around my stomach which holds my pouch up and is so comfortable all day and firing sleep. Keeps it off the crease of my legs. Just a trick I found.
Courageous. I am thankful to be alive after 14 years of cancer. Lots of similar issues I dislike sleeping with a night bag otherwise have to wake up to often to empty, Leaks accidents happen and that puts me into days of depression
I am afraid I am going to have to have this. I am going in for a colonoscopy next month because I have had trouble with diarrhea the last few years along with tiredness, dehydration, constant sour stomach belching, gas, indigestion, and vomiting. Now I also have a lot of lower right side pain in abdominal area which is a recent new symptom. I am nervous on what my results will be because my father had an colostomy bag and died from colon cancer at 35 years of age in 1983. The diarrhea is constant, Lasts for hours once it starts, I have to wear adult diapers often and I don't have NORMAL bowel movements anymore. I had been complaining to doctors about this since it started! Finally it is getting looked into. I just hope it won't be cancer. I can live with getting an ileostomy bag though. If that's what it has to come to.
Hi there! We're sorry to hear about how sick you have been, but we're very glad you're going in for a colonscopy - the worst part is not knowing. Like you said at the end, you can definitely live with an ileostomy bag. It has it's bad parts, but it is lifesaving! You can check out our video here about top concerns people facing ostomy surgery may have - and Laura addresses them all. Please keep us updated with your journey. We wish you health!
Great video I had op when I was 21 in UK I thought it was the end of my normal live but still alive today thanks to the op I understand what you say about people saying you look OK when there are times you curled up in pain with adhesions also the embarrassment when it leeks when I go swimming I just place a flesh colour bandage over it for an hour or so keeps the gazzers away Take Care
I too feel the only worry i have about having this pouch for life is having to rely on getting products delivered ,, i do feel like i need to stock pile them,, even though my nurse tells me i dont need to
Daisy....in this case do not listen to your nurse ....listen to yourself and your own needs ...be it physical or psychological.... With all the life changes of living 24 / 7 with a stoma ...the last thing you want is to worry about supplies ....( obviously this nurse has not got a stoma ) Anyway this worry needs to now be converted in to stock control of your supplies ....example : a core supply of your stoma products 3 months worth is a very very good idea ( but I wouldn't say you need more than this unless you live some of your time out of your country... Then on a regular monthly basis you call your supplier and get one month of stock replaced. So how much do you actually need is the next question,and for this I would say ........5 boxes with 10 pouches in each plus the matching attachments ( adhesive rings & or phalanges etc ) plus at least 3 sprays .....lots of gauze wipes etc So I would say that's your guideline ...as a base line. Look at it this way ...your worst case scenario is not one bag per day but far more if you have sore skin ...that sore skin can cause a non stick situation with your bag ......meaning you can in just one day change and replace the bag 5.6.7. or more times in the just one day period. This means that the 5 boxes is a formula order for when your stoma is without a problem. so stock pile. !...is the answer definitely ...and then just do a regular monthly order. And stand up for yourself don't be shy......if anyone questions you ,just say you can go through many bags in one day sometimes ......they will be non the wiser ...just say your skin gets sore and it doesn't allow the bag to stick etc etc In real life this situation would only last about 2 days or 3 while the skin is re healing ....so if they ask to look at the stoma just say its healed.....and your supplies are needed to cover for it happening again. Hope this info has been of help.
@randommess6667 I wouldn't stock pile on colostomy bags as I've been changing bags this last 25 and half years. If you have to change the bag more than twice a day, change the brand of bags that you use. Been there and done that as I had too change the bag 6 times, plus my clothes, luckily I worked for myself back then. Changing that many times a day, took it's toll on my physical health and mental, ended up wanting to die. Going from changing every 4 to 5 days too 6 times a day nearly, I tried a few different types of bags and got one that no problems with, peace of mind for the next 2 years, changed the brand again got 4 years out that brand, I'm on the Hollister 2 piece bag no major problems on them this last 4 years. I used to get around 4 days but due to had a Whipple surgery last year, I now only get 2 days out, but I'm happy most of the time with them and thankfully so far in life I don't have cancer as long as I get that chance to avoid cancer by going through surgery, I'll go with the surgery each time, even though I was told last year that I would die on the operating table. I'm happy that I'm still here. Cancer runs in my family, just like a lot of families it runs in. Sorry for the long post.
Afew weeks after getting out of the hospital after my life saving ileostomy surgery an where i had nearly died, my aunt saw me and told me i look so good like iv been on holiday haha she knew i had been in hospital an i did look much better though i wasnt offended at all, what a cmpliement ,, if ppl say you dont look sick thats a compliment dont feel bad about it
Like it really can be hurtful to hear that depending on how the person means it. Your aunt is being sweet and kind. Other people are not always though.
Since the age of 16, I have come to understand a few things. Sometimes you have to be a bit like Tony Stark my friends. I have made my own Kevlar ostoshield for MMA and am trying to develop a reusable disaster pouch... which also includes a list of foods I can and can't eat in case my system blocks 😅 another big thing to remember is strength training (which I took a little too far) and slow energy release foods like oats! Oh.. and fizzy beverages are a no no if you hate frequent visits to the restroom. 👍
Another couple of "bothers" for me......no chance of spontaneous, anytime sex. Is my bag changed? Is it empty? Is it covered? Also, body image issues....when I look in the mirror I hate how I look - BUT - this ostomy saved my life, so I just get on with it.....
Hi Teddy. Those are all valid concerns. We would recommend this video that Laura made about body issues: th-cam.com/video/eXoikZ72Xw8/w-d-xo.html We hope it helps, and best of luck.
Thanks for sharing your concerns. I have ME as well as an ostomy and can definitely identify with the “but you don’t look sick” comments - usually people tell me how well I look, and usually on days when I’m feeling really bad! They do mean well and I know they are trying to pay me a compliment and encourage me. Sometimes I just smile and say “thank you” and other times I say “looks can be deceptive!” It helps that I am a wheelchair user when out and about. I am a lot better since my ostomy because ulcerative colitis was no joke, and colon cancer meant the whole lot had to come out. I wouldn’t go back if you paid me!!
Sometimes my colostomy bag leaks while I'm at dialysis! Omg how embarrassing! I reach in if its only that the bag has opened, and I just close it. No big deal, to me. I can't imagine the things in dialysis that the people are thinking if they notice the strange aromas in the air! Lol
You are so beautiful from outside and inside too, many thanks from here in Egypt, I hope you keep having great life and I have learnt many things from your videos thanks again
glad i saw this. I have cancer and treating with raw food mostly, juicing such, high fiber. I cant get a bag or i wont be able to eat for healing health. have to look into this issue for sure. anyway, thanks for sharing your story
I am going to get a second colon resection due to recurring diverticulitis and I fear a colostomy. Thanks for your videos. I also fear being reliant on supplies.
I'm having trouble bending enough to tie my shoes but others are doing yoga. I've only had mine for two months, so I am looking forward to more flexibility in the future, but just wish it came sooner
Hi Laura great video hope your well and lovely video and your already educating people by putting these videos. So thankyou and keep up tje good work. ☺💩💩☺
Don’t be afraid. It is an adjustment but trust me it is not as bad as you think. I would love to help you out as I am very proud of my ileostomy. If you would like to reach out to me via instagram @gwenstin I would be more than happy to help ❤️
Dearest Layla I hear you, I feel your terror and IT IS OK TO FEEL THAT WAY. It is the unknown and that is scary for us x My best tip when feeling overwhelmed and afraid, is to stop, breathe deep and slow and focus on what is happening right now in this moment. Find a little way to love yourself, as you would a child who comes to you crying with a grazed knee..... A little treat, a cuddle, something to make her smile. Situations can be SO overwhelming when we are looking at the whole picture, but this is a slow beautifully unfolding journey. Take it one step at a time. I promise You will have so much Gold and beauty and soul medicine from this journey.
Tight clothes are hard to wear. The bag get filled to many times... if I fold the bag it will surety explode more or put pressure on and will bring me leaks... I wear mostly soort pants with rubber so it could not put pressure on the bag when it fill up. I wear XXL plus shirts altho I am medium to large size... I just can't figure how to go back to my old favorite clothes with no danger to my base and stoma bag Last thing I need is a leak out side my home ... I hate it...
Hi there! We hear you about the clothes issue. Laura made another video about how to dress when you have a stoma, and you might find some helpful tips in there! Best of luck, and please let us know if you have any specific questions: th-cam.com/video/NtTDMZVqmV8/w-d-xo.html
A leakage in the bed is a small inconvenience?? For me it's a nightmare, because i have to throw everything away that was leaked onto! i've tried washing these things quite a few times but it's never really cleaned, i still see the stain and everything. Does anyone have any recommendations on what products i need to actually clean up these accidents?
Try Mighty Bubbles! It’s a godsend for any and all stain. I’ve even used it on my kids’ cloth diapers. Wash stuff, then do a hot cycle with a Mighty Bubbles pouch.
Ishma Ishu - A little back story, I’m 50 yrs old and was diagnosed with Crohns at 15, 35 yrs ago. Before the diagnosis, doctors thought I had intestinal cancer - at that time, I spent a week in the children’s cancer wing in the hospital. Today, you see ads on TV for Crohns, Colitis, IBD treatment whereas, 35 yrs ago, it was described as a bathroom disease - there was no awareness of this disease back then. Because of this, I picked on in high school & college b/c I was skinny. On top of that, I was in & out of hospital during my early teens & early 20s. I endured re-section surgeries which resulted in me feeling better for several months, but the pain would start all over again, along with having to go to the bathroom 20x+ a day. Fast forward to today 1 1/2 yrs after my ostomy surgery, I have more confidence now to do things I was hesitant to do in my teens & 20s ~ like running, mountain biking, going to the gym, etc. Because of the multiple surgeries when I was younger, my recovery after the ostomy surgery took longer than most. Given that you’re 24 yrs old, you’ll bounce back in no time. I’m 50, I’m able to enjoy food for the first time in my life! Now, I actually have to watch what I eat so that I do not get fat ~ before my ostomy surgery, there were very few foods I could eat that did not irritate my gut. One last note, ask your doctor to get you in touch with a wound care nurse after your surgery for they will have knowledge of how to properly protect your skin from infection & irritation. Being diagnosed with Crohns 35 yrs ago, having the ostomy surgery was the best thing that’s ever happened to me! My girlfriend has been supportive of the whole process!
Good video Laura.......and very sensible that you suggested a 3 month "stash" of supplies. The only thing i found irritating is more than once you reiterated how grateful you were to be alive ..... I felt it was added to the video to counter balance in some way the negative effects mentioned of living with a stoma . I feel most people with a stoma would not say in truth that they are "grateful to be alive"..... think about it "grateful to be alive".......with a 24 / 7 open wound pumping out faeces on their stomach ?? Nooooo in reality.......most people do not connect up with being "grateful to be alive "...........they are for sure the majority of the time distracted from being "grateful" by the continual needs of the stoma.... Hence the statement "really grateful to be alive "....did not really need mentioning in this ...Keep it Real video.
Antoinette St Clair-Winston I disagree yes she is grateful as am I,, I nearly died when bowel perforated and I had sepsis and woke up with colostomy,which was changed to ileostomy, so I to say I'm grateful and lucky to be alive,and with ileostomy toilet comes out all the time but not with colostomy as it's more controlled, x
Uhmmmm... U don't know what you're talking about. She could have died. This stoma kept her alive. I would be as grateful as her. You must not have the same issues as her
@@ambrlie06 I don't think she's questioning anyone's experience, but it might be nice to hear other's reality. Depression in this situation is quite real and to ignore it is catastrophic as its prevalence in the ostomy community is overwhelming. And before you or anyone jumps on the "but it's not her responsibility to be a therapist!" train, that's not what I'm implying. Just acknowledge it is all.
That’s not really fair. You cannot speak for other people. Not everyone feels the way you described. Some people with stoma’s and bags do actually feel grateful to be alive. Some of them at in way less pain with their bag than they ever were before they had one so it gives them a chance to do more than they ever could before. For many people the bag literally saved their life. You can agree that they’re are negative things about living with a disability and /or medical device and still be very grateful to be alive.
![[LIVE] : ONE ลุมพินี 88 | คู่เอก "ป้อมเพชร vs อัสลามจอน"](http://i.ytimg.com/vi/1ZqTVVbMgbo/mqdefault.jpg)
I wish there was a better solution for people that have had issues that require this. You'd think medical science would've advanced enough to address this. Very brave being open and talking about this and proud that you have been able to overcome and endure.
My husband, engineer that he is, is already working on this!
I get frustrated with my support group who tells me that I should be okay after a year with this. They also talk about all their traveling, swimming, etc. Meanwhile I'm living in my bedroom so I can be near a bathroom in case I have a leak or it bursts. Whenever I go out I have a suitcase of supplies with me (including a change of clothes). This becomes overwhelming to carry everywhere because I also walk with a cane, which leaves me only one hand for everything. I also have to wear a mask when I go to meetings because of COPD. People think I have Covid. Finally, people say they shower without a bag, but I can't do that because I just know the stoma will burst all over the shower causing another mess to clean up. But I think when someone says they forget they even have a bag hurts the most. I can't forget because I'm thinking about it all the time.
Sorry for venting, but your title told me this was a video meant for me.
Yes, I get you. November went to the Dr , on the Monday, Tuesday was in surgery for a stoma! Woke up February ish dates are vague so now I have myeloma and a prolapse stoma, not been a great year but I will be seeing the surgeon on Tuesday 3 October, yay?
Yep, I get the,"You look okay" and I think to myself "If you only knew the pain and emotional distress, I go thru on a daily basis"! I put on a brave face, make jokes and show the strongest side I can in public but when I'm alone, sometimes the frustration of it all overwhelms me. I have had ten surgeries, my hernias have hernias and the pain is only getting worse. It's not easy to continue to get pain medicine, because the pain doctor I go to doesn't seem to understand my pain is not going to get better no matter what he tries!! extremely frustrating!!!!!!!!! Then on top of all that, He says we can't get rid of your pain and we can't continue to give you pain medication. I don't know what to do when it comes to pain management, sorry I'm venting my pain frustration!!!!
Ooof. Yes, that sounds very rough. You may find this article interesting, and helpful when speaking to your doctor: www.npr.org/sections/health-shots/2018/07/23/626202281/words-matter-when-talking-about-pain-with-your-doctor
I got shot 3 times in my belly had 8 feet of small intestine removed and i awoke out of my 3 week coma to an ostomy bag.. I had 11 surgeries done all in the span of 16 days... I had my bowels exploding out my midline incision which led to my ileostomy... Thank god I'm still here . You've got this! Stay strong and keep fighting the good fight i was crying everyday in the hospital because i felt so insecure.. I quickly got over it and im now enjoying my life to the fullest
You hit every thing I hate and love about my iliostomy. I'm only 3 months out but have learned so much very quickly. Glad to be alive.
I bough a carbou ostomy bags last week on Amazon, after having a horrible month trying to keep the coloplast bags with out leeking and been so desperate because I work in a restaurant I found out that Amazon sell differen brands. THIS IS THE MOST AMAZING PURCHASE NO LEEKINGS AFTER BEEN CHANGING 3 or 4 times a day with the Coloplast ones. The reviews on Amazon are AMAZING
Laura, thank you for being HONEST so irritating to see all these gushing people on video telling you it is all fantastic. Even my husband told me after a permanent stoma is you can eat everything. After having a temporary stoma in 2009 for six months I know that is not true. Now I am facing a permanent stoma and your videos have helped me so much. Tell the TRUTH don't sugar coat it and people will appreciate it so much. The only comments I got from friends in 2008 and 2009 after my surgeries was "Isn't it great you do not have cancer" which made it impossible for me to be honest and tell any friend how desperately frightened I was.
I love this video, Laura! I've often worried about the inability to get supplies in a catastrophic natural disaster, too! The best we can do is prepare in advance!
haha I thought that was just me
Me too!! It genuinely didnt occur to me anyone else felt that too! My best friend assures me that come armageddon she will fashion me a mad max style pouch out of sandwich bags and sellotape which we will ransack empty house for...could be fun! ;)
Vegan Ostomy I’ll be getting my ostomy in 9 days and I have the same fear, then again never leaving my house at 23 is definitely a motivator.
Vegan Ostomy- your videos helped me immensely after my ostomy surgery. Thank you 🙏🏻
@@Moonbreathmouse I can see why she's your best friend.
Hi Laura...The amazing thing about issues that bother you. is that you have found a way to overcome them. In everyone’s life a little rain must fall, however you are never without an umbrella. I’m sending you a Cyber hug all the way from Australia, I hope you get it. 💐 🐨 🦘
Oh, love, I am so sorry you have to live with such a serious illness with such bravery and positivity
I am facing this now as a result of radiation stenosis and ulcers that have formed. These videos are so helpful! Thanks for all you do! You feel so alone until you can put a face with another that has gone through this.
Hi how has surgery gone. I'm facing ileo as well 😊😊
please define radiation stenosis.
Thanks so much for acknowledging and sharing
the down-side and challenges of having an ostomy.
I don't know you but seeing your videos has helped me decide to pursue therapy.
Between this new life and losing my mom I feel overwhelmed.
I really appreciated you acknowledging the “you don’t look sick” issue. It’s really something I’ve personally dealt with these past 3 years.
It really does cause a sort of mental trauma, I know how I feel and I’m the only one that does. Anytime I’m told but you look ok. I begin to question my 3 years of medical issues. Am I really this bad off? I’ll even think, “just stop” “be normal” “get over it”.
Your videos are proving to be such a help thank you. I have ostomy surgery planned for the 13th of May this year 2019 and I can’t thank you enough.
We hope the surgery went well, and we're glad we addressed an issue that bothers you, too!
@K yes it is a life altering change that's difficult in all aspects....due to the sounds and potential leak issues I don't eat at work, I'll go an entire day on a banana. It's real and it takes time, but (I hope) we will be okay in time. I mean, it's better than being in pain and all the other awful reasons we have an ostomy (or cancer or death, whatever the reason)
Lovely video! What I’ve realized is that I don’t have to identify with my pain and journey to where I am now. It if a big part of us but we can rejoice in the fact that we are now healthy enough to appear as somewhat normal:)
That's a great place to be and good advice.
Living with Ostomy now & it is hard & I'm glad not only one with issues like what you said. Thanks
Wow
Thanks! I have been getting my supplies from Shield for years and couldn’t be more satisfied. Great company and great video!
I use to get leaks as well.. Until I started to use the ring under the flange. Never have had a leak since. They are great. Believe you can use it with any type of flange. I also use an ostomy belt and tape around my flange to keep it sealed better. Maybe try some of these to help with leaks.
Wow what a wonder person you are Laura, I lost my large bowel 30 years, the catastrophic natural disaster ostomy mates is a worry, people in third world countries also worries me, how do they get on ?
I wear a bandeau top around my stomach which holds my pouch up and is so comfortable all day and firing sleep. Keeps it off the crease of my legs. Just a trick I found.
Courageous. I am thankful to be alive after 14 years of cancer. Lots of similar issues I dislike sleeping with a night bag otherwise have to wake up to often to empty, Leaks accidents happen and that puts me into days of depression
I am afraid I am going to have to have this. I am going in for a colonoscopy next month because I have had trouble with diarrhea the last few years along with tiredness, dehydration, constant sour stomach belching, gas, indigestion, and vomiting. Now I also have a lot of lower right side pain in abdominal area which is a recent new symptom. I am nervous on what my results will be because my father had an colostomy bag and died from colon cancer at 35 years of age in 1983. The diarrhea is constant, Lasts for hours once it starts, I have to wear adult diapers often and I don't have NORMAL bowel movements anymore. I had been complaining to doctors about this since it started! Finally it is getting looked into. I just hope it won't be cancer. I can live with getting an ileostomy bag though. If that's what it has to come to.
Hi there! We're sorry to hear about how sick you have been, but we're very glad you're going in for a colonscopy - the worst part is not knowing. Like you said at the end, you can definitely live with an ileostomy bag. It has it's bad parts, but it is lifesaving! You can check out our video here about top concerns people facing ostomy surgery may have - and Laura addresses them all. Please keep us updated with your journey. We wish you health!
Tinnybird G Did you find out what you have?
Thank you I really needed this to hear someone else who understand what I am going through
Thank You so much for your kindness.
I found you Laura, still love and appreciate you🌻
Great video I had op when I was 21 in UK I thought it was the end of my normal live but still alive today thanks to the op I understand what you say about people saying you look OK when there are times you curled up in pain with adhesions also the embarrassment when it leeks when I go swimming I just place a flesh colour bandage over it for an hour or so keeps the gazzers away Take Care
Had my first leak in public the other day, I was at the Doctor office when it happened, It is embarrassing as heck
Enjoyed your video. I am also grateful for my bag.
I too feel the only worry i have about having this pouch for life is having to rely on getting products delivered ,, i do feel like i need to stock pile them,, even though my nurse tells me i dont need to
We think you should do whatever makes you comfortable. There's no need to make you worry when just having extra supplies would put your mind at ease.
Daisy....in this case do not listen to your nurse ....listen to yourself and your own needs ...be it physical or psychological....
With all the life changes of living 24 / 7 with a stoma ...the last thing you want is to worry about supplies ....( obviously this nurse has not got a stoma )
Anyway this worry needs to now be converted in to stock control of your supplies ....example :
a core supply of your stoma products 3 months worth is a very very good idea ( but I wouldn't say you need more than this unless you live some of your time out of your country...
Then on a regular monthly basis you call your supplier and get one month of stock replaced.
So how much do you actually need is the next question,and for this I would say ........5 boxes with 10 pouches in each plus the matching attachments ( adhesive rings & or phalanges etc ) plus at least 3 sprays .....lots of gauze wipes etc
So I would say that's your guideline ...as a base line.
Look at it this way ...your worst case scenario is not one bag per day but far more if you have sore skin ...that sore skin can cause a non stick situation with your bag ......meaning you can in just one day change and replace the bag 5.6.7. or more times in the just one day period.
This means that the 5 boxes is a formula order for when your stoma is without a problem.
so stock pile. !...is the answer definitely ...and then just do a regular monthly order.
And stand up for yourself don't be shy......if anyone questions you ,just say you can go through many bags in one day sometimes ......they will be non the wiser ...just say your skin gets sore and it doesn't allow the bag to stick etc etc
In real life this situation would only last about 2 days or 3 while the skin is re healing ....so if they ask to look at the stoma just say its healed.....and your supplies are needed to cover for it happening again.
Hope this info has been of help.
@randommess6667 I wouldn't stock pile on colostomy bags as I've been changing bags this last 25 and half years. If you have to change the bag more than twice a day, change the brand of bags that you use. Been there and done that as I had too change the bag 6 times, plus my clothes, luckily I worked for myself back then.
Changing that many times a day, took it's toll on my physical health and mental, ended up wanting to die. Going from changing every 4 to 5 days too 6 times a day nearly, I tried a few different types of bags and got one that no problems with, peace of mind for the next 2 years, changed the brand again got 4 years out that brand, I'm on the Hollister 2 piece bag no major problems on them this last 4 years.
I used to get around 4 days but due to had a Whipple surgery last year, I now only get 2 days out, but I'm happy most of the time with them and thankfully so far in life I don't have cancer as long as I get that chance to avoid cancer by going through surgery, I'll go with the surgery each time, even though I was told last year that I would die on the operating table. I'm happy that I'm still here. Cancer runs in my family, just like a lot of families it runs in.
Sorry for the long post.
Dolor, los "ruidos", las fugas y en general mantener higiene permanente, a veces ni duermo.
Same here 2 a.m
Afraid of more leaks.
Hopefully it resolves for you
Afew weeks after getting out of the hospital after my life saving ileostomy surgery an where i had nearly died, my aunt saw me and told me i look so good like iv been on holiday haha she knew i had been in hospital an i did look much better though i wasnt offended at all, what a cmpliement ,, if ppl say you dont look sick thats a compliment dont feel bad about it
I understand your point, but many people expect you to LOOK sick and if you don't, they don't tend to give credence to your very valid issues.
Like it really can be hurtful to hear that depending on how the person means it. Your aunt is being sweet and kind. Other people are not always though.
She's an inspiration.
Since the age of 16, I have come to understand a few things. Sometimes you have to be a bit like Tony Stark my friends. I have made my own Kevlar ostoshield for MMA and am trying to develop a reusable disaster pouch... which also includes a list of foods I can and can't eat in case my system blocks 😅 another big thing to remember is strength training (which I took a little too far) and slow energy release foods like oats! Oh.. and fizzy beverages are a no no if you hate frequent visits to the restroom. 👍
Another couple of "bothers" for me......no chance of spontaneous, anytime sex. Is my bag changed? Is it empty? Is it covered? Also, body image issues....when I look in the mirror I hate how I look - BUT - this ostomy saved my life, so I just get on with it.....
Hi Teddy. Those are all valid concerns. We would recommend this video that Laura made about body issues: th-cam.com/video/eXoikZ72Xw8/w-d-xo.html We hope it helps, and best of luck.
What a courageous young lady! Great positive attitude: keep it up!
Thanks for sharing your concerns. I have ME as well as an ostomy and can definitely identify with the “but you don’t look sick” comments - usually people tell me how well I look, and usually on days when I’m feeling really bad! They do mean well and I know they are trying to pay me a compliment and encourage me. Sometimes I just smile and say “thank you” and other times I say “looks can be deceptive!” It helps that I am a wheelchair user when out and about. I am a lot better since my ostomy because ulcerative colitis was no joke, and colon cancer meant the whole lot had to come out. I wouldn’t go back if you paid me!!
Sometimes my colostomy bag leaks while I'm at dialysis! Omg how embarrassing! I reach in if its only that the bag has opened, and I just close it. No big deal, to me. I can't imagine the things in dialysis that the people are thinking if they notice the strange aromas in the air! Lol
I tried not to eat before dialysis… hope you’ll be better now. Regards from Spain
You are so beautiful from outside and inside too, many thanks from here in Egypt, I hope you keep having great life and I have learnt many things from your videos thanks again
glad i saw this. I have cancer and treating with raw food mostly, juicing such, high fiber. I cant get a bag or i wont be able to eat for healing health. have to look into this issue for sure. anyway, thanks for sharing your story
I am going to get a second colon resection due to recurring diverticulitis and I fear a colostomy. Thanks for your videos. I also fear being reliant on supplies.
Thanks for keeping it real ❤
loving these vids. please continue these
Hi please can you put sub titles I would love to follow you but am deaf. Thanks
You got it! They've been added. Thanks for the reminder!
I'm having trouble bending enough to tie my shoes but others are doing yoga. I've only had mine for two months, so I am looking forward to more flexibility in the future, but just wish it came sooner
I’ve had my surgery for close 35 years and the only thing that bothers me is the smell. Especially in public washrooms. Any solutions?
How about deodorant drops for ostomy bags or the diamond sachets which solidify qwatery output and reduce odour 😊😊
Where is Laura cox now long time not see her new video
I can relate to this and you have helped me so much thank you 😊
Thanks! You helped me alot more than you know... Transparency really does transform lives... D. P. Guyton
I need your help. I am confined to a wheelchair and I have a urostomy pouch due to bladder cancer help me. I caught GBS at 14 years old.
Very informative video. Thank you. (for me, music is too loud, it causes listening fatigue)
Hi Laura great video hope your well and lovely video and your already educating people by putting these videos. So thankyou and keep up tje good work. ☺💩💩☺
Laura , have you considered irrigation? It’s a life changer for me.
That works for colostomy, but not for ileostomies
Thanx so much love your honesty
I'm getting Ostomy surgery on my 16th birthday. I'm terrified and have no idea where to start
Don’t be afraid. It is an adjustment but trust me it is not as bad as you think. I would love to help you out as I am very proud of my ileostomy. If you would like to reach out to me via instagram @gwenstin I would be more than happy to help ❤️
Dearest Layla I hear you, I feel your terror and IT IS OK TO FEEL THAT WAY. It is the unknown and that is scary for us x My best tip when feeling overwhelmed and afraid, is to stop, breathe deep and slow and focus on what is happening right now in this moment. Find a little way to love yourself, as you would a child who comes to you crying with a grazed knee..... A little treat, a cuddle, something to make her smile.
Situations can be SO overwhelming when we are looking at the whole picture, but this is a slow beautifully unfolding journey. Take it one step at a time. I promise You will have so much Gold and beauty and soul medicine from this journey.
Hi Layla, how are you doing with your ostomy, well I hope?🤞
How are you now??I'm 🙏🏻🙏🏻🙏🏻Wonderful.Any updates?Just subscribed,your lovely by the way❤
you are so beautiful and amazing very strong to speak out .. much respect
Tight clothes are hard to wear. The bag get filled to many times... if I fold the bag it will surety explode more or put pressure on and will bring me leaks... I wear mostly soort pants with rubber so it could not put pressure on the bag when it fill up.
I wear XXL plus shirts altho I am medium to large size... I just can't figure how to go back to my old favorite clothes with no danger to my base and stoma bag
Last thing I need is a leak out side my home ... I hate it...
Hi there! We hear you about the clothes issue. Laura made another video about how to dress when you have a stoma, and you might find some helpful tips in there! Best of luck, and please let us know if you have any specific questions: th-cam.com/video/NtTDMZVqmV8/w-d-xo.html
Great vid thanks
Thanks for sharing, Laura. I just want to point out how gorgeous you are. Hugs❤
Thanks Laura!
Hi Laura, nice informative video. What was your chronic illness?
Hi Deana! Laura was diagnosed with ulcerative colitis at 18. Thanks for watching!
A leakage in the bed is a small inconvenience?? For me it's a nightmare, because i have to throw everything away that was leaked onto! i've tried washing these things quite a few times but it's never really cleaned, i still see the stain and everything. Does anyone have any recommendations on what products i need to actually clean up these accidents?
Soaking in Oxiclean will remove most stains.
Try Mighty Bubbles! It’s a godsend for any and all stain. I’ve even used it on my kids’ cloth diapers. Wash stuff, then do a hot cycle with a Mighty Bubbles pouch.
Hanging out to dry in the sun, this seems to take the remaining stains away
But if you ever get in an emergency you can wash it out and reuse it
Great video!!! :)
Thank you
Tomorrow is my stoma surgery I’m nervous I’m just 24😭
You’ve got this! Stay positive because the best is yet to come. My surgery was the 6th of December 2018.
John Martin how’s you now ? Is all good ?
Ishma Ishu - A little back story, I’m 50 yrs old and was diagnosed with Crohns at 15, 35 yrs ago. Before the diagnosis, doctors thought I had intestinal cancer - at that time, I spent a week in the children’s cancer wing in the hospital. Today, you see ads on TV for Crohns, Colitis, IBD treatment whereas, 35 yrs ago, it was described as a bathroom disease - there was no awareness of this disease back then. Because of this, I picked on in high school & college b/c I was skinny. On top of that, I was in & out of hospital during my early teens & early 20s. I endured re-section surgeries which resulted in me feeling better for several months, but the pain would start all over again, along with having to go to the bathroom 20x+ a day. Fast forward to today 1 1/2 yrs after my ostomy surgery, I have more confidence now to do things I was hesitant to do in my teens & 20s ~ like running, mountain biking, going to the gym, etc. Because of the multiple surgeries when I was younger, my recovery after the ostomy surgery took longer than most. Given that you’re 24 yrs old, you’ll bounce back in no time. I’m 50, I’m able to enjoy food for the first time in my life! Now, I actually have to watch what I eat so that I do not get fat ~ before my ostomy surgery, there were very few foods I could eat that did not irritate my gut. One last note, ask your doctor to get you in touch with a wound care nurse after your surgery for they will have knowledge of how to properly protect your skin from infection & irritation.
Being diagnosed with Crohns 35 yrs ago, having the ostomy surgery was the best thing that’s ever happened to me! My girlfriend has been supportive of the whole process!
so true
Hi Laura
Good video Laura.......and very sensible that you suggested a 3 month "stash" of supplies.
The only thing i found irritating is more than once you reiterated how grateful you were to be alive .....
I felt it was added to the video to counter balance in some way the negative effects mentioned of living with a stoma .
I feel most people with a stoma would not say in truth that they are "grateful to be alive".....
think about it "grateful to be alive".......with a 24 / 7 open wound pumping out faeces on their stomach ??
Nooooo in reality.......most people do not connect up with being "grateful to be alive "...........they are for sure the majority of the time distracted from being "grateful" by the continual needs of the stoma....
Hence the statement "really grateful to be alive "....did not really need mentioning in this ...Keep it Real video.
Antoinette St Clair-Winston I disagree yes she is grateful as am I,, I nearly died when bowel perforated and I had sepsis and woke up with colostomy,which was changed to ileostomy, so I to say I'm grateful and lucky to be alive,and with ileostomy toilet comes out all the time but not with colostomy as it's more controlled, x
Uhmmmm... U don't know what you're talking about. She could have died. This stoma kept her alive. I would be as grateful as her. You must not have the same issues as her
If she or others (with or without a stoma) feel grateful to be alive, who are you to question them.
@@ambrlie06 I don't think she's questioning anyone's experience, but it might be nice to hear other's reality. Depression in this situation is quite real and to ignore it is catastrophic as its prevalence in the ostomy community is overwhelming. And before you or anyone jumps on the "but it's not her responsibility to be a therapist!" train, that's not what I'm implying. Just acknowledge it is all.
That’s not really fair. You cannot speak for other people. Not everyone feels the way you described. Some people with stoma’s and bags do actually feel grateful to be alive. Some of them at in way less pain with their bag than they ever were before they had one so it gives them a chance to do more than they ever could before. For many people the bag literally saved their life. You can agree that they’re are negative things about living with a disability and /or medical device and still be very grateful to be alive.
Yes! The natural disaster phobia! 😂
Help/ hernia with ostomy
Try a hernia belt to hold it in . Check with dr first .
Get rid of sound
30 minutes of Yoga is a reward? I got this wrong all the time...
Pretty lady
I wish there was a dating site for people w Ostomy
@@Yappinbear thanks. No thanks.
You are so beautiful 😍
😙😙😙😙😙😙😙😙😙😙
Sorry 😞 to say but death is better option after being suffering ibd with piles for 2 years, surgery is just illusory solution
I choose death
u dead bro?
Moral of story dont get an ostomy.