NEW SERIES / BEHING THE BAG: TO THE NEW OR STRUGGLING OSTOMATE

Hey ya'll! I'm SO EXCITED about this new series, "Behind the Bag." There is such a need to talk about the mentally and emotionally aspects of life with an ostomy / chronic illness. Let's get REAL about the person behind the bag. This video is dedicated to all the new or struggling ostomates. I hope this video helps you!
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*The owner of Ostomy Diaries does not claim to be a physician or healthcare provider. All opinions expressed on this channel, or web page are solely the opinion of an ostomy patient. If you are experiencing a medical emergency or have other health concerns please contact a medical doctor.
#ostomy #ibd #chronicillness

[@joycependleton589]

In my 31 years “behind the bag”, the only thing I have hated was this parastomal hernia I have. Other then that I have appreciated my colostomy from day one. I even wanted to get it done when I learned there was such a thing. That’s how much pain I was living in. Yes, I went through times of skin problems, settling on an appliance system, etc. Having my anus and rectum removed and now have a little over a foot of colon. None of what I have gone through came close to the pain I was having before any of this took place. I didn’t know life could be so good! Was I embarrassed to have an ostomy, no way. Like what was said here, things will get better. Life is so much more important then what some may call an inconvenience of having to wear a bag. If you end up with an ostomy for whatever reason, whether expected or unexpected, temporary or permanent, be thankful and thank God there are things like this available to enable us to live a quality life. This type of attitude will save you a lot of unnecessary heartache.

[@OstomyDiaries]

Thank you so much for sharing Joyce! My ostomy helped me feel a lot better too. I felt like I was a prisoner to my bathroom before. It takes some adjustments for sure, but that’s why we have to all try to support each other. Blessings to you my friend! 💜💚

[@charminsavage2512]

On Sept. 5, 2021, I went into exploratory surgery for abdominal pain with no idea what was the cause (divierticulosis), and woke up with an ostomy....was not prepared in any way for that. I had to have a second surgery a week later when the initial site failed. After the first surgery I just wanted to go home, after the second I had a full blown melt down because I was so afraid of getting home and having complications again or being a burden on my husband/family. The first blow out (was too messy to be called a leak) was at home and I bawled, the second was the next day and it just made me so mad that I was cussing the walls blue - luckily, my husband was there both times to help. My third was a leak, but my son and his family were here for a visit with their 3 kids (4, 6, and 8) and it was the first time I had to change my bag with no help or guidance and I was so scared I'd mess it up. I had a talk with the kids about what was going on, showed them a little book with drawings in it to explain what had happened, and the 2 boys (the oldest) actually asked to see my bag and stoma, the youngest said ick and nope so she didn't look. I've never been more proud of being honest with kids than when the 6 year old asked if I was going to get better or if they could fix me and I told him that the doctors would try, but that I might always have my bag and that it wasn't fun, but that it was OK because it didn't make me any different - it just made the way i potty different...he said "oh, that OK Ohana - I'll love you if you get fixed or if you have to keep your bag, even if it's kinda weird and gross". Gotta love kids honesty lol. I'm only 2 1/2 months in, I'm learning tricks and tips (mostly from your channel and others like it), and I'm ok with knowing this may be temporary or it may be permanent - hope for the best/prepare for the worst mentality. I feel lucky to have you and your honesty as a resource. May your Christmas be bright and your move go smoothly.

[@deedeejones26]

Beautifully done and much needed content. As a hospital based certified ostomy nurse, we know that it is a very challenging time. The emotional, mental and physical challenges are immense. Often times, we have a very small window of time in which to teach ostomy care and recovering from surgery, whether planned or emergent, doesn't afford us the time we need to take care of a new ostomy patient. To reassure them, to give them the confidence to move forward with this new way of eliminating. In order to better my practice, what are some of the things that you wish your ostomy nurse had told you or taught you that would have made your transition a bit easier? Keep on making these videos and keeping it real! Big hugs!

[@Eternal_Hope_Q]

I wish that I'd been more prepared for bag change anxiety. Questions like; "are you squeamish?" And flow from that point...I have an avoidant personality for example 😬 What if my stitches are busted, what if there's a huge infection and I have to have more surgery, (that randomly crying is normal). Like she said in the video, we are post anaesthetic, on pain meds and freaking out. Focus and memory isn't the best at those times. Especially those of us who had emergency stomas so no time to do the research and get educated. Maybe if it's an unplanned surgery those patients get a more verbal period of help. I was given all the leaflets but I couldn't actually read due to all the above. I deeply appreciate my stoma care team, they are all wonderful and I know they want the best but they are rushed off their feet 😢 I'm not throwing shade on them at all, but extra talks, reaffirming important parts of stoma care and reassurance that every problem has a solution would be top of my list x

[@michaelbozinovski9357]

Thank you! I’ve had mine for over a year with stage four cancer! But thank god I’m still here

[@OstomyDiaries]

🙌🙌

[@tinasteen7643]

You are spot on about everything you spoke about. I have been on this journey with my brother, who had cancer. He got his colostomy in 2019. He requires some assistance and I have had to learn as much as possible to be able to help him. I thank God for KZbin, because this is where I have learned the most about everything ostomy related. The series you are starting is very much needed and I can’t thank you enough! Merry Christmas!

[@OstomyDiaries]

You are so kind to help your brother! I too am thankful for KZbin. There is truly an amazing community on here. Merry Christmas to you!! 💜💚

[@TheKarahLife]

God is using you in mighty ways girl! Keep on shining 🤗💜💚

[@patriciaconstantino4669]

I am so thankful for your videos 💕 I’ve had my ileostomy for almost two years .. March. 4th to be exact will be two years . I had 4 surgeries.. I had a reversal which lasted maybe a year and then developed another stricture … my feelings were exactly like yours and still are. Today, just as you said, I thank God for surgeries that can give us better quality of life such as my ostomy has. I could go on and on but to keep my comment short I just want to tell you that I thank you from the bottom of my heart for being so honest and informative about your surgery/surgeries.. I have learned more by watching your videos and others like yours than I learned in the hospital or from anyone and by connecting online with other ostomates has greatly relieved feelings I had of depression and loneliness .. I appreciate you and everyone who is so open about their ostomy journey. 💕💗💕

[@siener]

I'm getting a colostomy in four days. I'm scared as hell. Your videos have really helped. Thank you.

[@LadyGTarot]

I am one month in - my surgery was not what they expected I had the very rare rectal diverticulitis. After surgery my incision was infected and was the 12 inch opening. Surgeon had to go in and drain things and I just pulled out the packing yesterday. Good news is though am seeing a light at the end of the tunnel when it comes to healing. I am still working on finding out what ostomy products are going to work best for me. I am making progress though one step at a time. Glad you are putting this information out as it can only help others in their journeys.

[@ChrissyTakesOnLife]

I stumbled across your channel while searching the internet for colostomy info. On January 15 I had emergency surgery for a ruptured colon and the gave me a colostomy. The found out I have cancer so I have been really struggling with the whole situation. I want you to know your videos have brought me comfort. They let me know I am not alone on this ostomy journey. They have given me so much information as I still have so much to learn. Thank you for being out here helping others know it is okay and that people just like all of us are going through similar things in life. God bless you.

[@gerardwebster1251]

You’re off to a good 👍 start with this series. Basic and uncomplicated! It’s definitely a roller coaster ride for life but always keep in mind there will always be hills and valleys! Good luck everyone in figuring this stuff out! And remember, it’s always ok to ask for help!

[@leakerr3151]

Hi. I've had my ostomy for two years due to anal rectal cancer. I've had digestive problems since I was a child. My worst nightmare was a fear I would have to have a bag on my side someday. Circumstances caused me to have an emergency surgery and wake up in ICU. I felt so ugly and hated it. But as I was recovering I found you and your advise helped me Thank God I'm still here. At first I didn't want to live but I'm so happy for the memories I've made in these two years. Thank you for your advice on staying positive and keeping supportive friends and family close. God bless you and I hope you continue to thrive.

[@lindaw.6274]

Oh Amber...thank you from the bottom of my heart for all your videos. I have had my bag for 2 weeks after an abcess exploded in my abdomen and caused alot of damage. Honestly I have been struggling. For 6 months I felt like I had razor blades in my belly. I was sleeping 18 hours a day. I just could not function. My Dr. said I was constipated. She was absolutely negligent. I won't bore you with details but now I am in this life changing situation and so trying to forgive her because I do not want to drown in this anger and sometimes yes even hate. It is so hard. Watching your videos has been a Godsend for me. You and your information and positive attitude has calmed me so much. I will be forever grateful to you. Much love...Linda

[@ronaldwestby4484]

Jt

[@bereal6590]

I hope you're okay, same for me and my drs negligence and the circumstances. The anger hate and hut can be overwhelming and people around just don't get it. I'm getting an ostomy. I understand how you feel and your comment helps me know I'm not the only one who has had that happen and feels this way ✌

[@kellyolson1952]

I just saw this video. It is sooo true. Unfortunately my hospital didn’t prepare me well for my ostomy surgery. They gave the bare minimum. They were supposed to send me home with supplies to get me through until I saw my outpatient wound care/ostomy nurse. Nope. My mom had to find a medical supply store and get supplies because I was constantly blowing out and leaking, the bags would not stick. My wound care/ostomy nurse was a gem. She helped me figure out what I needed. But I’ll tell you until then I was having fits, and was saying what have I done. Why did I do this. But 💯 it does get better. But it is a huge adjustment.

[@Eternal_Hope_Q]

I love your honesty. It was so reassuring to hear you say that your tummy flipped every time you looked at your stoma. I've been having some serious anxiety just before and especially at bag changes. My way of doing it (2 weeks in) is to pray first, put my favourite worship album on and realise this is just the tent I live in whilst on earth. Its had a new patch added with a 'toilet function'. It kinda takes some of the sting out of it for me. Assurance that all this is fixed on the other side is also the best hope eveeeeeer 🙏🏽💕

[@ktdid8183]

I am 3 weeks out from an emergency surgery, so this was never ever even in my scope of thought. I am so happy that I have found you. Listening to your struggles in the first few weeks, was like listening to someone tell my story, which is very comforting to me. I am not alone. I am looking forward to your next video. 😀

[@snivly2066]

I also had emergency surgery and it was so not what I was ever expecting. Let me tell you what nobody me..,the first month or 2 is the worst. I didn’t leave my house for a month. I went on antidepressants and Xanax. But let me also tell you it gets so much better! Your body will adjust and life goes on and you will figure it out. It I’ve saved my life! Amber helped me so much and so did Maggie on let’s talk IBD also Hannah witton talks about her experience and that also was a game changer for me. Trust me when I say I learned that I could live life as normal, you can wear what you want, eat and drink what you want..,exercise.,,honestly it gets better!!! Hang in there

[@jaquellyneazangu7037]

I have underlined,,,, "trust GOD to help me feel comfortable in this uncomfortable situation",,,,. Wow

[@OstomyDiaries]

He can make the difference! 💜💚

[@kraebat7]

You are a Godsend!... I new to all this, and I can so relate. I am cancer free but have acolostomy now, I finally reached complete acceptance but still learning what to eat and not eat. I had my battles with skin breakdown and etc, etc... I'm now looking for meal ideas and belly fat burning recipes if anyone has some. Thank you for this channel!! Much love and respect...

[@janezepp7500]

I'm 2 weeks out from having my ostomy. I'm bawling. I'm 55 years old and you have inspired me! So amazing to see a strong young woman making a go of it! I also rely so heavily on the Lord and it's true, He's bigger than all of this!

[@emill2105]

Thank you for sharing your experience. I'm getting ileostomy in 3 weeks and this is so helpful!

[@vickieppinger3496]

I love your positivity and love watching your videos. I fought with Crohns for 40 years and just recently had surgery (total colectomy). I am struggling but I know I’ll get through it. Thank you for all your help. God bless ❤

[@matthewcarrubba2976]

Merry Christmas to you and God bless you all and stay safe and healthy. Love 💘 so much 💘

[@OstomyDiaries]

Merry Christmas friend!

[@matthewcarrubba2976]

@@OstomyDiaries you are so welcome and thank you so much for your reply and God bless you and stay safe and healthy. Love 💘 so much 💘 💓

[@christineirwin3031]

You are a God send!!! You are here for a very special reason to help others, nothing better in this life than that. Thank you, I'm learning from you, my sister will be having surgery next week she is totally unprepared. I am trying to prepare and learn as much as I can for her, thank you!!!!! ❤️❤️ And God bless you 😍😍

[@silverphoenix1418]

Wising you all the best of success in your new series. I look forward to it with great excitement. Wishing you A Very Merry Christmas 2021 and A Happy New Year 2022. God Bless you.

[@OstomyDiaries]

Thank you! God Bless you friend!

[@enistinemacrae4841]

@@OstomyDiaries are you still making videos Amber please as I have an illiostomy thank you

[@yarnmom9939]

I am ileostomy one month Like you were shown one maybe two times how to change on pain meds. Several leaks at home but I just keep trying new products and hoping that I’ll get the hang of it

[@elizabethgregory9549]

Thank you, your videos always have helpful info and advice to a struggling new ostomy owner

[@MarthaNagy]

Thank you so much for all you do for this community!

[@enistinemacrae4841]

Does Amber please 🙏 still make videos I have an illiostomy thank you

[@JoAnnJonesholden]

I am a new ostomite as of April 24 and not planned emergency surgery. I’m 60 and struggling with life after the bag.. I just want to be “normal” again

[@tee7230]

Its been 4 weeks since my surgery because of cancer. The lack of training and information form the doctors and hospial was appallling. You literally go home exactly like you said, in shock, lost and dont even know where to begin taking care of you new normal. Sad reality that needs to be changed for sure. Doctors and hospitals need to...Train and prepare us please!!!!!!!!!!

[@MrBlackheart634]

You are blessings to. all whose going through this journey blessed love

[@johnmiller9339]

Thank you for the few tips that I have found out from watching your videos 🇺🇸😊

[@sarahgonzalez9567]

I needed this, thank you.

[@elviacintron9732]

Thank you for helping me

[@femitheserval17]

Yesss,,, I am brand new,, emergency surgery 10 days ago... I have a huge incision.. staples,,, and a void where my colon Was. And the ostomy,,, it's itching sooo bad right now 😫,, I am now home a few days now,,,still in pain. I can't stand up straight yet. 😒,, I am better than I Was before surgery,, I was so sick. I am grateful I can eat again,,, where I have been on strict TPN (TOTAL PARENTAL NUTRITION) for the last 60 days.. I actually was so blessed to get eat real food by mouth for Thanksgiving instead of IV food. One day at a time.... is my best advice.. I am curious how you dealt with the ostomy and dating, and when you met your husband. ?? Thanks for sharing.

[@elviacintron9732]

Its been 6 months since i had an emergency surgery. 😢 Scared of the future Im overwhelmed.

[@keliweis4668]

Thank you!! 🙏🙏🙏

[@donaldmendes184]

In 2002 I was diagnosed with ulcerative Colitis , I ended up with a Jay pouch internal system. Had multiple issues after surgery. I swore I would never Ostomy on my side, but in 2022 I diagnosed with Crons I'm my Jay pouch, surgery in June 2022. Now I have Ostomy system.

[@michelebreen1705]

Thank you

[@KAli-dk6on]

Thank you so much! I think I might need this surgery soon...😔. Love This channel 🤗

[@shelleymartin2604]

So you had irritation around it what did u do and has anyone worked with one on

[@jeffthorson625]

when i got mine I had trouble I was changing it 3 to 4 times a day because I was under home helth and they could only get one brand and in the beginning before I had surgery I knew what brand I wanted so I had the drop home helth to get it getting the surgery wonderful I knew I needed it now and i will not go back because i could not go the bathroom unless I an enima every day the doc gave me laxatives to start but i find I need anti-diarrhea meds more then any thing the only real problem I have right now is supply chain shortages I use pink tape with my bag to get longer were time but they did not give me any this month what happens if they have no bags one time or flanges

[@OstomyDiaries]

I’m so sorry you are struggling to find supplies! I really hope this doesn’t become a bigger issue. 😔

[@curtisbinkley2342]

Relatively new to this (6 months post osteomy) I have a hernia/cone shaped osteomy and am still working on trying to get the right fit. I don't understand why sometimes I can put a new bag on, and it lasts 4-5 days with no problem, and the next time only 1/2 to one day before it is leaking 😮‍💨 I seem to have most problems when my output is firm? Normal?

[@OstomyDiaries]

It is totally normal. Have you tried the Coloplast flange specifically for someone who has a hernia?

[@gerardwebster1251]

The item Amber is referring to is called the Coloplast Mio Flip. That is the bag I wear. I don’t have a hernia but I do have a bump. It adheres by having five fingers with relief areas between each one thus allowing it to adhere on a round surface, whereas a regular round flange will create gaps or creases that do not want to adhere due to the bump roundness, thus upping the chances for leaks and blowouts. Give it a try! Just call Coloplast and request a sample!

[@snivly2066]

You can use something to put in your bag to make it softer and go down in the bag rather get stuck and cause a leak. I can’t remember the name of it but I feel like baby oil can do the trick as well

[@davidcorralejo7166]

Amen

[@user-zu9uh9xc1i]

I have ostomy supplies I would like to donate. Can you recommend an organization who will accept my donation and redistributed to people in need and not sold for profit? TYIA

[@ktay7382]

👍