So wish I knew about this when I woke up with an Ostomy. It would have been worth it's weight in gold. Thank You for what you do. It's so appreciated. 💜☮️💜
I like watching your videos. You are very sincere and relatable. I had been sick with stomach issues for 5 years. Spent a lot of time in the bathroom. Finally went to the Dr's, we were thinking probably Chrones. Turns out it was cancer. After 7 months and all my treatments I finally had surgery. When I woke up from having my rectum removed, a permanent colostomy bag added, and sliced from bellybutton to my butt, I just wanted to die. I had wished I had never done it. Dying from cancer seemed better. Thanks to a wonderful nurse that saved my life one lonely night and a great support team, I got past it. It took a long time to get used to it. I felt like a freak!! Skip ahead 2 years and still cancer free, my ostomy no longer controls me. It still sucks sometimes but for the most part I could care less. Thank you for your videos they have helped and answered some questions.
Thanks y'all! Eric, your videos and communication with your followers are a blessing! I'll be subscribing to Amber's channel as well! Amber, I used to live in Nashville. I was diagnosed there in 2014 with UC, then we ended up moving to NC which is where I ended up with c-diff (again, I believe) and this time there was nothing that could save my colon. I had already 'felt' that this was coming about 18 months prior to my ileostomy, and it all came to a screeching halt last November. That certainly helped me accept it when it happened. That and I knew I wasn't leaving the hospital unless it did because I was so sick, attached to an IV bag for hydration, I couldn't even be off it for one day and the bleeding...the vanco made it worse so I basically had a meltdown with the hospitalist from the exhaustion and sick state & told them "I want it gone!" actually, those were my exact words. The last five months (as of Sunday) have been a whirlwind as my left femoral nerve was injured during the anesthesia block so I can understand challenging mobility issues (I couldn't walk and am still waiting for it to wake up as I do PT) as well as getting used to all this. I can understand someone having trouble with a new and major life change such as an ostomy but it really does help to accept the things I can not change, change the things I can (my attitude) and the wisdom to know that difference. I believe we all grieve when we lose a body part and that's a process. Denial being the first stage but we float in and out of them. I've lost several "original" parts. My grieving was in that meltdown - I was done. I'm finding my routine but still spend a lot of time in the bathroom - now, emptying my bag - I've learned I'm a high output ostomate but I get more out of my bag-time by rinsing it. Also, I'm not out of the woods yet; I still have trouble with urgency and the inflammation response in my rectum not to mention terrible fatigue plus. They want to talk surgery (J-pouch) but to me, that's another conversation for another day. I couldn't walk after the last one so we'll just table that for as long as I can. In the meantime, I am soaking up all the experiences and suggestions from you guys and gals like a sponge! Thanks again!
Karah Marie Tucker thanks for sharing your story. I am from Gatlinburg. I feel like our journeys are very similar! Hang in there. I personally had high output for almost a year and then I learned more of a routine. I used to set an alarm for 3am to go empty, and now I sleep through the night. Your body will still continue to recover and adapt. I am praying that with your ostomy your rectum begins to heal. Hope you find your new normal, and become healthier than ever!! 💜
I didn't want my ostomy at first a lot of errors but as I got used to having it my doctor mentioned before the surgery that she wanted me to have a quality of life so i understood that I am getting better at having my ostomy watching videos getting the information I needed to move forward really helped me in so many ways
Amber, I went thru alot of the things you mentioned. I was so scared in the beginning..I know Eric and another iliostomy friend helped me with so many different things. I'm 6 months into it now, still alot to learn but it's getting easier. It's so important to those before having the surgery, ask questions!! I was one who wasn't prepared for this. I wish I had the opportunity to go to classes first, or even would have been great if I knew I could find alot of info on UA-cam. I went into this knowing nothing!!
Mary Reynolds I was overwhelmed with product overload, and learning what the best routine was! There is light at the end of the tunnel. Thank you for watching. I hope you continue to heal and learn! :)
Thank you two so much! I suffer from UC. Diagnosed in 2016. Ignored my diagnosis for over a year and managed ok with some dietary changes. However my UC has progressively gotten worse. Prednisone gave me a year of relief on and off from June of 2019 to April 2020. I was weaned off of Prednisone as it’s not for maintenance of UC. I failed Humira/Azathioprine. Now on Xeljanz and not really responding. I’ve lost 30 lbs and continue to slowly lose weight and not get better. As I worry other meds won’t work and some of the side effects are horrible I found comfort in your videos. I’m preparing myself for the scenario if I fail all meds. So watching both your channels has given me comfort and relief that an Ostomy is not the end of the world. My quality of life has been reduced in the past 3 months. Been off work and in continual discomfort and pain on and off throughout the day. Also, being tied to the bathroom and being exhausted all the time is no fun. I have a young family as an older Dad which makes it more difficult. With UC I guess I at least have a few options to get my life back if meds don’t work. I think I would like a planned surgery without a j-pouch. Thanks again you two. You do a very valuable service with your channels. Much appreciated!
Stay positive Lindsey! I went through similar issues. I had UC as well and nothing seemed to work. I finally had my colon removed on June 25, 2020. I can’t say that it was easy, but no regrets. I’m still recovering but I feel so much better already. My energy is coming back and I’m getting used to having an illeostomey, but everyday gets better and my quality of life is improving dramatically. Remember, it may seem dim at this point, but there is light at the end of the tunnel. Take care.
Strange Tryp Thank you for your encouragement and insight. Much appreciated. Currently on Prednisone taper. I’ll find out in a month if the tapper worked and it helped to let the Xeljanz I’m on a chance to work.
Hi Erik I've been watching your videos for a while now and am very thankful for all you do but I had no idea you were from Canada at all, I'm just watching a few things from shield and they sent me a link to a roundtable you have done and it said your east of Toronto and that sparked my interest even further because I'm born raised and still live in oshawa so not sure how far East you are but it's still very cool to know you are near by! I've had my ostomy since mid to late 90s due to severe crohn's they removed my entire LG but it's come back now actually prob a month later but it's thru everything now except my mouth thankfully but I had to say hi when I realized how close we are! So Hi! Lol
Vegan Ostomy omg really! That's awesome! I really don't know why I thought you lived in California for some reason! Lol! I have no idea why I thought That! Lol! But that is so awesome! Is you gi here or Toronto? Mines here Dr Pavone he's really good!
Vegan Ostomy really! I have not heard of anything like That! It's so amazing to get to speak to someone that's so close having gone thru pretty much exactly what I have, ppl try n sympathize but till you've had these things happen they can't really get it! Don't get me wrong my fam n friends have been amazing thru everything I got sick at 17 and now am 45 so it's been a while and most of them are still here with me and I love them for it but you literally have gone thru my exact life pretty much! Ok well I'll stop bothering you now but should you ever want to chat plz email me I've kinda put a lot of personal stuff here already but emails are a wee bit more private Lol! My email is barbsworld1972@gmail.com I hope we can chat sometime! Have a great night and thanks for responding! It was really nice chatting with You! Take care!
I have an ileostomy right now as I have colorectal cancer and it has been required during recovery from the removal of the tumor. It should be able to be reversed when the area recovers (A few more months), but I think I'm doing ok at the moment having figured out how to change the bag/barrier. I use a Hollister Two-Piece and have recently acquired a stealthbelt with a stomadome for protection which was a life changer. I was prescribed a transparent pouch with a ceraplus barrier, with the Stealthbelt the transparency doesn't really matter. Fortunately, all my costs have been covered by VA.
I remember when I was first told that I needed an ileostomy, I was not very happy about the idea, my surgeon had me meet with a lady who had one, and since I was not ready to accept it, I wasn’t very nice to her, but eventually I got used to the idea and I finally decided that I’d get the surgery. Now I am completely used to it, and I don’t mind having it at all. I’ve had it now for about 20 years.
I think it must have been harder back then because you couldn't just hop online and see other ostomates doing their thing! I'm glad you were able to accept it in your own time!
ShyAnn291 my surgeon scared me to death the first time I met him. I wasn’t very friendly to him. I think we are all in shock at first! Thanks for watching! :)
Hi Eric, nice to meet you Amber :) Eric, I have a very important question!!! Totally not on topics mentioned, so...Last night I went to do my every 3 day change of the bag and wafer..I saw where someone used a qtip around the inside area of the wafer to get it to have a better grip, hold etc. What happened scares me like crazy. The qtip slipped and kinda went into the hole of my iliostomy, not deep, but enough to make it bleed a bit. I didn't remove my wafer so not sure how bad it is..but it didn't bleed alot. I don't feel any pain so Im assuming all is well. Is this something that happened to where I need to call my Dr? Will it heal ok if the stool gets on this area I hurt? Thanks Eric!! I hope I will heal and all be well!!
Hi Mary, I can't tell you whether that could lead to any problems, but I can say that it's normal that stomas bleed with friction. My stoma bleeds wen my appliance is on too tight or if it gets "squished" when I'm going things. Where most people should be concerned is when their output has blood in it (i.e. Due to active disease).
Hey there. Hoping you can shed light on the disappearance of Awestomy. com. Tried 800 number, tried email, no go. Husband a new ostomate and would like to get him a wrap. We were so happy to find your videos.
So wish I knew about this when I woke up with an Ostomy. It would have been worth it's weight in gold. Thank You for what you do. It's so appreciated. 💜☮️💜
I like watching your videos. You are very sincere and relatable. I had been sick with stomach issues for 5 years. Spent a lot of time in the bathroom. Finally went to the Dr's, we were thinking probably Chrones. Turns out it was cancer. After 7 months and all my treatments I finally had surgery. When I woke up from having my rectum removed, a permanent colostomy bag added, and sliced from bellybutton to my butt, I just wanted to die. I had wished I had never done it. Dying from cancer seemed better. Thanks to a wonderful nurse that saved my life one lonely night and a great support team, I got past it. It took a long time to get used to it. I felt like a freak!! Skip ahead 2 years and still cancer free, my ostomy no longer controls me. It still sucks sometimes but for the most part I could care less. Thank you for your videos they have helped and answered some questions.
Thank you so much for sharing that. I'm so glad that you had someone there to lift you up! Keep on living life! 😀👏👏
Thanks y'all! Eric, your videos and communication with your followers are a blessing! I'll be subscribing to Amber's channel as well!
Amber, I used to live in Nashville. I was diagnosed there in 2014 with UC, then we ended up moving to NC which is where I ended up with c-diff (again, I believe) and this time there was nothing that could save my colon. I had already 'felt' that this was coming about 18 months prior to my ileostomy, and it all came to a screeching halt last November. That certainly helped me accept it when it happened. That and I knew I wasn't leaving the hospital unless it did because I was so sick, attached to an IV bag for hydration, I couldn't even be off it for one day and the bleeding...the vanco made it worse so I basically had a meltdown with the hospitalist from the exhaustion and sick state & told them "I want it gone!" actually, those were my exact words.
The last five months (as of Sunday) have been a whirlwind as my left femoral nerve was injured during the anesthesia block so I can understand challenging mobility issues (I couldn't walk and am still waiting for it to wake up as I do PT) as well as getting used to all this. I can understand someone having trouble with a new and major life change such as an ostomy but it really does help to accept the things I can not change, change the things I can (my attitude) and the wisdom to know that difference. I believe we all grieve when we lose a body part and that's a process. Denial being the first stage but we float in and out of them. I've lost several "original" parts. My grieving was in that meltdown - I was done.
I'm finding my routine but still spend a lot of time in the bathroom - now, emptying my bag - I've learned I'm a high output ostomate but I get more out of my bag-time by rinsing it. Also, I'm not out of the woods yet; I still have trouble with urgency and the inflammation response in my rectum not to mention terrible fatigue plus. They want to talk surgery (J-pouch) but to me, that's another conversation for another day. I couldn't walk after the last one so we'll just table that for as long as I can. In the meantime, I am soaking up all the experiences and suggestions from you guys and gals like a sponge! Thanks again!
Karah Marie Tucker thanks for sharing your story. I am from Gatlinburg. I feel like our journeys are very similar! Hang in there. I personally had high output for almost a year and then I learned more of a routine. I used to set an alarm for 3am to go empty, and now I sleep through the night. Your body will still continue to recover and adapt. I am praying that with your ostomy your rectum begins to heal. Hope you find your new normal, and become healthier than ever!! 💜
Than you Amber!! That's very encouraging!! I can't remember the last time I slept throughout the night but I'm believing it'll happen too!
Amber Wallace OH! And we LOVE Gatlinburg!! Hoping to get back there again this summer!!
I didn't want my ostomy at first a lot of errors but as I got used to having it my doctor mentioned before the surgery that she wanted me to have a quality of life so i understood that I am getting better at having my ostomy watching videos getting the information I needed to move forward really helped me in so many ways
Amber, I went thru alot of the things you mentioned. I was so scared in the beginning..I know Eric and another iliostomy friend helped me with so many different things. I'm 6 months into it now, still alot to learn but it's getting easier.
It's so important to those before having the surgery, ask questions!! I was one who wasn't prepared for this. I wish I had the opportunity to go to classes first, or even would have been great if I knew I could find alot of info on UA-cam. I went into this knowing nothing!!
Mary Reynolds I was overwhelmed with product overload, and learning what the best routine was! There is light at the end of the tunnel. Thank you for watching. I hope you continue to heal and learn! :)
Thanks guys for sharing
Thank you two so much! I suffer from UC. Diagnosed in 2016. Ignored my diagnosis for over a year and managed ok with some dietary changes. However my UC has progressively gotten worse. Prednisone gave me a year of relief on and off from June of 2019 to April 2020. I was weaned off of Prednisone as it’s not for maintenance of UC. I failed Humira/Azathioprine. Now on Xeljanz and not really responding. I’ve lost 30 lbs and continue to slowly lose weight and not get better. As I worry other meds won’t work and some of the side effects are horrible I found comfort in your videos. I’m preparing myself for the scenario if I fail all meds. So watching both your channels has given me comfort and relief that an Ostomy is not the end of the world. My quality of life has been reduced in the past 3 months. Been off work and in continual discomfort and pain on and off throughout the day. Also, being tied to the bathroom and being exhausted all the time is no fun. I have a young family as an older Dad which makes it more difficult. With UC I guess I at least have a few options to get my life back if meds don’t work. I think I would like a planned surgery without a j-pouch. Thanks again you two. You do a very valuable service with your channels. Much appreciated!
Whatever happens, I wish you the best!
Stay positive Lindsey! I went through similar issues. I had UC as well and nothing seemed to work. I finally had my colon removed on June 25, 2020. I can’t say that it was easy, but no regrets. I’m still recovering but I feel so much better already. My energy is coming back and I’m getting used to having an illeostomey, but everyday gets better and my quality of life is improving dramatically. Remember, it may seem dim at this point, but there is light at the end of the tunnel. Take care.
Strange Tryp Thank you for your encouragement and insight. Much appreciated. Currently on Prednisone taper. I’ll find out in a month if the tapper worked and it helped to let the Xeljanz I’m on a chance to work.
Hi Erik I've been watching your videos for a while now and am very thankful for all you do but I had no idea you were from Canada at all, I'm just watching a few things from shield and they sent me a link to a roundtable you have done and it said your east of Toronto and that sparked my interest even further because I'm born raised and still live in oshawa so not sure how far East you are but it's still very cool to know you are near by! I've had my ostomy since mid to late 90s due to severe crohn's they removed my entire LG but it's come back now actually prob a month later but it's thru everything now except my mouth thankfully but I had to say hi when I realized how close we are! So Hi! Lol
I'm closer than you think! I also live in Oshawa 😉
Vegan Ostomy omg really! That's awesome! I really don't know why I thought you lived in California for some reason! Lol! I have no idea why I thought That! Lol! But that is so awesome! Is you gi here or Toronto? Mines here Dr Pavone he's really good!
I wish I lived I California! That would be a dream! My GI is out of Woodbridge and works at a special clinic there that does clinical trials.
Vegan Ostomy really! I have not heard of anything like That! It's so amazing to get to speak to someone that's so close having gone thru pretty much exactly what I have, ppl try n sympathize but till you've had these things happen they can't really get it! Don't get me wrong my fam n friends have been amazing thru everything I got sick at 17 and now am 45 so it's been a while and most of them are still here with me and I love them for it but you literally have gone thru my exact life pretty much! Ok well I'll stop bothering you now but should you ever want to chat plz email me I've kinda put a lot of personal stuff here already but emails are a wee bit more private Lol! My email is
barbsworld1972@gmail.com
I hope we can chat sometime! Have a great night and thanks for responding! It was really nice chatting with You! Take care!
If I ever speak in the GTA, you should come 😀 I'd post those events on my website and newsletter if they ever come up.
I have an ileostomy right now as I have colorectal cancer and it has been required during recovery from the removal of the tumor. It should be able to be reversed when the area recovers (A few more months), but I think I'm doing ok at the moment having figured out how to change the bag/barrier. I use a Hollister Two-Piece and have recently acquired a stealthbelt with a stomadome for protection which was a life changer. I was prescribed a transparent pouch with a ceraplus barrier, with the Stealthbelt the transparency doesn't really matter. Fortunately, all my costs have been covered by VA.
I remember when I was first told that I needed an ileostomy, I was not very happy about the idea, my surgeon had me meet with a lady who had one, and since I was not ready to accept it, I wasn’t very nice to her, but eventually I got used to the idea and I finally decided that I’d get the surgery. Now I am completely used to it, and I don’t mind having it at all. I’ve had it now for about 20 years.
I think it must have been harder back then because you couldn't just hop online and see other ostomates doing their thing! I'm glad you were able to accept it in your own time!
ShyAnn291 my surgeon scared me to death the first time I met him. I wasn’t very friendly to him. I think we are all in shock at first! Thanks for watching! :)
I love this video. Focused on the positive but also real and relatable.
Glad you enjoyed it!
Av subscribe to both your Chanel's they're of great help to me and also encouraging
Hi Eric, nice to meet you Amber :)
Eric, I have a very important question!!! Totally not on topics mentioned, so...Last night I went to do my every 3 day change of the bag and wafer..I saw where someone used a qtip around the inside area of the wafer to get it to have a better grip, hold etc. What happened scares me like crazy. The qtip slipped and kinda went into the hole of my iliostomy, not deep, but enough to make it bleed a bit. I didn't remove my wafer so not sure how bad it is..but it didn't bleed alot. I don't feel any pain so Im assuming all is well. Is this something that happened to where I need to call my Dr? Will it heal ok if the stool gets on this area I hurt? Thanks Eric!! I hope I will heal and all be well!!
Hi Mary, I can't tell you whether that could lead to any problems, but I can say that it's normal that stomas bleed with friction. My stoma bleeds wen my appliance is on too tight or if it gets "squished" when I'm going things. Where most people should be concerned is when their output has blood in it (i.e. Due to active disease).
Hey there. Hoping you can shed light on the disappearance of Awestomy. com. Tried 800 number, tried email, no go. Husband a new ostomate and would like to get him a wrap. We were so happy to find your videos.
I have no idea, but I sent them a tweet (you aren't the first person who's wondering where they are).