Living Life with an Ostomy Bag | Amy's Colon Cancer Story | The Patient Story

[@tushyapillay8730]

thank you for posting this. I have just been diagnosed and at the mention of the bag, I literally thought I'd rather die than live with that, but today I decided to go online and start researching and watching people like you for the past hour, has given me hope and courage, and a better perspective. Thank you.

[@HopeofGlory-qx4lk]

How are you today?

[@anitabell3976]

I didn't have much of a choice as far as the ostomy I had emergency surgery November 3rd, 2022. when I woke up from surgery the bag was in place. The first few weeks with home health was a learning process. After that I found my own way of taking care of my bag. And like you said, one day at a time is the way to go. I have an army of prayer warriors that keep me encouraged.

[@amyleedeehart]

Thank you from the bottom of my heart for sharing my story and helping break down the stigma around ostomies. 💖.

[@desiertoscacti5388]

What an amazing, courageous woman! A true inspiration to all people who face challenges in their life journey! Thank you to The Patient Story channel, you are doing such an awesome job! I'm glad she found the freedom to be herself, not a hero, just a person fighting her way through hardship, and also enjoy life with her precious family!

[@ThePatientStory]

Thank you so much for watching! ❤️❤️

[@SometimeAgo65]

My friend had to have an ostomy, caused by cervical cancer treatment and not only that but she has catheters going straight to kidneys. This will be from now on. Now that's hard to know that you beat your cancer but these horrid things are the consequences of your treatment. It would be hard but stay strong...you're much needed here ❤😊

[@ecj552]

You are an inspiration to all people going through cancer treatment. You are an inspiration for people also living with an ostomy bag. (an inspiration in general!) Your perspective is invaluable. I cried through a lot of it, as my mother is currently going through this. I appreciate you sharing and I have learned a lot during the last fifteen minutes.. Thank you...

[@plaidpaisley5918]

As someone with a chronic medical condition, I appreciate your perspective. Embrace life.

[@christinesmith8330]

My mom had colon cancer went thru hell. Got the bag. And was cancer free for almost two yrs. Then back and forth for seventeen yrs until she lost her last kidney. We knew it was coming.

[@roch145]

I lived with an ileostomy for 9 months during my treatment for stage 3C rectal cancer. There were a lot of inconveniences, initially. But I eventually mastered the tasks of caring for my ostomy. There are some pluses to having an ostomy. After my ostomy reversal surgery my bowel movements changed dramatically. Frequency, urgency, spending hours on the toilet are some of the challenges I face. I’d say significant quality of life issues. But such is the cost of cancer survivorship. Thank you for presenting a wonderfully positive and uninhibited insight into your challenges. You certainly show by example that one can move forward in life after cancer treatment. I hope you continue to stay cancer free. I’ve got a CT Scan coming up, and I’m pretty confident it will show I’m still cancer free.

[@edmalts]

Congratulations on your cancer free ct , I’m on the same boat with you on everything you went through, after 1 year of my reversal ileostomy , my bowel movement have not gotten better and I wear depends. I’m 56 male

[@roch145]

@@edmalts sorry to hear about your struggles. I’ve had a few accidents while out and about. But I haven’t had to use Depends but a few times. I’ve developed a fairly predictable bowel cycle. Typically from noon to 5 pm I need to make sure I’m not too far from a bathroom. I’ve used Imodium with limited success. But I recently read an article that said you need to take Imodium 1-2 hours before eating- which I hadn’t been doing. Making this change has helped. My stools are less runny which helps with control. Have you tried Imodium?

[@warrenknight3822]

​@@edmalts😂sheín

[@didi012578]

I think these are things I'll never understand; I had stage 3 rectal cancer and just had surgery over a month ago, but my ostomy is permanent. For the rest of my life. I'm having an extremely horrible time freaking with this. I'm still horrified.

[@roch145]

@@edmalts I’ve benefited from taking Imodium everyday. Though it doesn’t necessarily change the urgency sensations. I had half my rectum and 5 inches of colon removed, which is a huge part of the bowel challenges.

[@Paul-pi5xr]

First it was 2B then 3B and a few months ago upgrade to 4B and had reached my prostrate. Had my anus, rectum and lower part of colon removed with a small section of prostrate. Now on chemotherapy till December which includes oxaliplatin once every three weeks and yes it does contains platinum.

[@Philiopantheon82]

I am a General practitioner, I am amazed by your story and all around marathon with the disease. Thanks for sharing your story dear:)

[@brandyfoster596]

I had stage 4 colon cancer and just got my all clear. I had an ostomy and an iliostomy for a year and it is an adjustment. Thank you for sharing❤ stay strong and keep moving forward.

[@محمدالعراق-ق4ع]

I hope you recover. What symptoms did you have

[@jenny_rice]

Thank you for sharing you story. I have had my ileostomy for 4 weeks now. The first few bag changes were a challenge. This last one was better - not much sticky residue from the barrier ring. I have a tumor in my rectum. Just had my second round of chemo. I'm supposed to have 6 - 8 rounds and then radiation and then surgery. It is a process and I have had to remind myself to take it one day at a time.

[@didi012578]

That's sounds exactly like what I've been through for the last year. I'm having such a hard time with it. I feel like I'm going crazy. I feel deformed.

[@محمدالعراق-ق4ع]

I hope you recover. What symptoms did you have

[@jenny_rice]

@@محمدالعراق-ق4ع I had to go to the bathroom every 2 hours even throughout the night and had lots of gas when going to the bathroom and not formed stools. I did end up having surgery that cut the tumor out but leaving me with a permanent colostomy. I am in remission, though. Woohoo! ☺

[@JJ-5145]

Love this so much Amy is a absolute rockstar

[@ThePatientStory]

We are so appreciative for you both!

[@wendymercer2920]

Thank you for sharing your experience. In Mar 2021 I was diagnosised with stage 3 rectal cancer at age 50. I went thru radiation then chemo then LAR surgery with ileostomy, which was reversed 9 mon later. There was nothing easy about my journey. I didn't know what an ostomy was when my surgeon explained the surgery and the 9 months with it was a struggle. I didn't know about support groups until after the reversal, when I gave away the remainder of my supplies. My prayers that you continue to be cancer free

[@محمدالعراق-ق4ع]

I hope you recover. What symptoms did you have

[@marcellef8302]

God bless you, Amy. Sending you hugs for your courage and encouragement. Is the ostomy bag permanent or will it be removed at some time?

[@lauraramos409]

Wow!!! You are so amazing!! ❤. Your girls will forever be proud of you!! I dnt even know you and i am so proud of you.

[@matthewjjoss3821]

You are the Bravest woman in the world! You are Amazing! Much Love.

[@jennie2692]

Wow. Thanks for your candor and so much positivity. Just think of how incredible this world would be if all people had your fire.

[@sinematographers3344]

Beautiful lady and family. So proud of you.

[@jeanroth159]

Amy you are most certainly a women of strength and courage ,and beautiful as well. Thank you for sharing your journey,it will most definitely help others in similar situations.Keep taking good care of yourself, i wish you continued good health and strength. Much ❤ to you.

[@kimberlys8422]

I searched this because my 30 year old little brother is going through hell with the ostomy bag and he recently had a heart attack. Props to a survivor of colon cancer, my grandma is one as well.

[@deborahmeyers551]

Beautiful soul❤

[@jillglass4914]

So inspirational!!!!

[@PeterHedenberg-wi7mm]

Big change in my life,,thanks for your video

[@journey3227]

Emergency surgery. Woke up with ostomy 3yrs ago. Best advice I have for women is,,, micro fiber underwear 1size larger. Holds bag firmly under clothes. AND any fiber dietary drink or gummies. Helps stool to form. Decreases loose stools and possible leakage.

[@Michelle-qd9gm]

I was 53 when I got mine soma bag and I’ve had a mastectomy with no reconstruction with breast cancer so I wear my swim filler and my stoma with my bikini on holiday we are warriors I’ve now got osteoporosis and spondylitis with chronic nerve pain in a wheelchair I didn’t see all this coming but am alive in pain but alive

[@cgomez77]

Hello! Please forgive this novel I am about to leave on your video!!! I am so blessed to have come across it! My colon decided to give out on me little by little over the last 5 years. It got so bad last year life revolved around trying to find a way to go to the bathroom. I was on the highest doses of extremely potent prescription laxatives available and having 7-10 days of trying to go with not much luck! I looked 9 months pregnant at times. I was overweight, exhausted, bloated, uncomfortable, and at my wits end. I went to a colorectal specialist…I had some tests done and swallowed a pill that had radiopaque beads in it , and after a week, 18 of those 25 beads were still scattered throughout my colon! I was told the only option to make my situation better or not ending up with a blockage or perforation was a temporary loop ileostomy. My heart sank! I was told it would be temporary, a few months of regulating things and then I would have a surgery to take out the non functioning colon and reconnect my small intestine to my bottom. Well…Nothing went as planned!!!💔 Turns out my small intestine is the 180^ opposite of my large intestine. It is OVERACTIVE and produces large amounts of output that goes through my body really quickly. So that cut out the plan to reconnect my small intestine anytime soon as I would have been running to and hanging out in the bathroom all day and all night! So… we decided we would try some things to slow it down and regulate it over time. Now we are 360 days out and…I have lost 25 pounds, had to have 2 sets of 5 IV iron infusions, have to go to the infusion clinic to get IV fluids and magnesium twice a week through an implanted port in my chest because I have terrible veins for IVs. ALSO, Less than 2 months after surgery I developed a hernia under my stoma. It started about golf ball sized but is now about the size of a grapefruit and makes things very difficult I am so self conscious and it is extremely uncomfortable! I have had other complications with my colon still sitting in there because it is still a living body part and it wasted no time become a nuisance again in a different way🤦‍♀️😭 so now I am scheduled for that to be removed in March. I am also seeing pelvic floor physical therapy and scheduled to see a motility specialist. The options are a proctocolectomy, taking EVERYTHING EXCEPT THE SMALL INTESTINE AND CLOSING UP THE END, with my stoma being moved to fix the hernia, OR…a colectomy minus the procto part ( a little more TMI than I am already over sharing , so I won’t type it directly out) but basically leaving a small amount of the bottom most parts in case things can be reconnected some day ( if pelvic floor therapy and motility doctors are miracle workers🙏🏻💪🏻🤞🏻). My battle is I am not sure I want to ever have to worry about being reconnected with only a small intestine (because our large intestine is where we rehydrate because water is absorbed by the body there and out of stuff going through so none of that means nothing solid. So my small intestine has days where it seems to be dumping the entire day and the thought of having to worry about where the nearest bathroom is at all times and then thinking about having to worry about making it to that said bathroom in time is terrifying!!! I am a nurse , and what if I am at work and with a patient or not near a bathroom. The thought of an accident is mortifying!!! What about while asleep and relaxed. Without a colon, stuff can sometimes fly through your body almost unfathomably fast. Again, I am so grateful I came across your video because every time I see the surgeon, he asks, ARE YOU SURE YOU CAN LIVE WITH THE Ileostomy FOR THE REST OF YOUR LIFE ; there are no guarantees you won’t get another hernia. And again and again…It is FINAL NO GOING BACK, etc. etc. AND EVERY TIME HE ASKS THAT I START TO SECOND GUESS MY DECISION I WAS SO SURE I WAS 100% SURE OF the 4 weeks I waited for that appointment and up until those words come out of his mouth. I also have a very poor functioning pelvic floor and muscles that don’t want to work together. A big one here--I have also had 3 pre-cancerous polyps from my colon in random spots removed in the last 3 years so it should be a no brainer right? Take everything, fix the hernia, and move the stoma over off my belly button and pant line ( a whole other story 😤. I had a horrible pre-op marking and a terribly placed stoma. I have to cover my belly button or leaks occur within hours of a bag change. Again, Forgive the VERY long message! I am REALLY considering starting a channel to tell my story because I strongly believe many of my health struggles including this stem from a drunk driving accident I was in 12 years ago that I have now had over 50 surgeries because of. So between genetics, tons of medications, so much anesthesia, etc… I really believe it has changed me physiologically. New diagnoses I have received since the bulk of my surgeries; Factor 2 blood clotting disorder that appeared by me having 2 blood clots to my lungs and surviving it thankfully 🙏🏻, thyroid disease, narcolepsy type one ( with cataplexy-loss of muscle control and sometimes consciousness with strong emotion like laughing, yelling, charring at a football game, etc. thank goodness there are medications to treat that one! I also think all of this is to blame for my colon giving out! I also now have 18 pins , clips and screws from the shoulders up, Migraines, neck pain, routine neck injections, shoulder pain and hand numbness, fatigue, PTSD, anxiety, depression, and have spent about 2 months a year if I add it up in the hospital every year. I would love to know if there is anyone that would benefit from hearing more about my story and am again so happy I found your video with such a positive take on the possibility of the proctocolectomy. 🥰🥰🥰

[@HopeofGlory-qx4lk]

No apologies needed. I hope you’re doing much better! Be encouraged!

[@alexanderzhidkikh7536]

Hello! Has pelvic floor therapy helped your rectum? Have you had problems with rectal sensitivity and did you cure it?

[@janehastie4632]

What an inspiration to others. It makes the journey for others feel less alone

[@gloriasiess1129]

you are amazing

[@deborahmeyers551]

Amy beautiful beautiful Amy inside outside you are sooo amazing thanks for sharing your journey. I have a colostomy bag I've bonded with it love and light Amy 💜🙌💜

[@loretta_3843]

Thanks for sharing your story, you made a lot of sense. I really appreciate it and hope your health stays nice and boring!😊

[@iamwinningrightnow]

Love your confidence! You're a rockstar.

[@PeterHedenberg-wi7mm]

Just been operation for this

[@maddyk8505]

is she ok today? 🥹🥹🥰🙏🏻🙏🏻🙏🏻🙏🏻

[@mrjeff2396]

I had an ostomy bag for a few months in 2019. Long story short: Early March 2019 I was misdiagnosed by Ft Carson military ER 2x in 3 days. I was diagnosed by the military DR with constipation whereas my entire large intestine was DEAD! It came out in the house! My wife saved my life by calling 911 (in middle of major snow storm). 3 days later I awoke in a UCHealth hospital in ICU. 10 days total in ICU for simple constipation! Yeah, right! After 6 months with ostomy bag I elected to have my small intestine connected to rectum! 24 years in the USAF, shot at and missed, $h!t at and hit!

[@roberttasker3323]

Strong lady ,hope she stays cancer free forever.

[@Arjunstomawala]

I am suffering from diverticulitis and I am also a ostomy person, from last 7 months. Doctors said that I live with stoma during my whole life

[@carolannpacificadam1944]

Got my bag with diverticulitis myself..I still have some rectum. It's been 5 years and I still don't like having it hanging off my body. I know it saved my life I just haven't been able to have a routine or stability with the thing I don't work and I can't even volunteer anywhere because of the instability of my output and need to get to the bathroom. I feel so gross and my o c d is really bad . I am always happy to see young people survive the surgery and manage well But there a hard side to ostomy life

[@dennisgray7509]

Thank you for this video. I’m just over a year into my ostomy and I’m learning to deal with it. I’m very self conscious of it! People like you give such wonderful inspiration! Thank you

[@محمدالعراق-ق4ع]

I hope you recover. What symptoms did you have

[@dennisgray7509]

@@محمدالعراق-ق4ع I had prostate cancer. My prostate and bladder were removed

[@sheripoole489]

I will tell you… prepare for your older years… I have had my Ileostomy for 36 years…protect your abdomen as you age…your abdominal facia will weaken… I am so happy you are okay. ❤️❤️❤️

[@savedbytheblood316]

I’ve had an ileostomy for 12 years it saved my life from UC. I’ve never looked and felt better! TY Amy you continue to inspire me.

[@mossesait4438]

U be ok , I went through all of this ...wish u health and happiness.. don't worry ❤️ U look beautiful ❤️

[@BIGGGREGJR]

What do 3b mean

[@Usa_mikek]

I'm due for a colonoscopy. Issues with passing with effort. I'm almost 67 and struggling as it is with other things. I'm not sure if I can be as brave as you if they find something and have to do this. Good luck dearest much success to you.

[@chronically_cls]

Amy, is this the first time you are sharing your publicly? You look very familiar, and I can't figure out where I would know you from. I have two health conditions, while not cancer, they are life-long and most importantly, life-altering. I always question if I could help someone, but please know your story has helped me. I wish you nothing but the best!

[@learnspanishwithlilia]

can people work with this bag? I mean does it stinky or leak?

[@sueu6263]

💯True Warrior👏💕

[@jamesfuss1840]

Your a great inspiration, Ostomy saves lives

[@anneherman6745]

❤️🐞

[@kathrynroughan5679]

Thank you for sharing this. You are a strong woman ❤

[@dantimber]

These peoples' stories are so sad but this lady has a great attitude. 🙏

[@alexanderzhidkikh7536]

Hello! Do you have a colostomy or ileostomy?

[@raegriffith5814]

I have had three surgeries to fix a plolasped rectum- living with ibs for 20 years. I am done- can’t leave home two to three showers a day no control whatsoever and it’s making me mentally nuts. I see my surgeon in a couple weeks to say okay third time failed- next move now. I want my life back- because right now I am trapped in my house- geez I am not even scared anymore.

[@محمدالعراق-ق4ع]

I hope you recover. What symptoms did you have

[@davidjames2431]

Thank you for sharing!

[@nandanavivek3368]

What were your symptoms

[@ThePatientStory]

Hello! In Amy's first video segment, she goes through her symptoms. You can find it here: How I Discovered I had Colorectal Cancer | kzbin.info/www/bejne/a3yxoKmFqtaWf7s

[@delonaszlavik1174]

Did you ever wear a Stealth belt?

[@theshelbypalace]

beautiful message ❤