Thank you for the understanding! I’ve been struggling with understanding if I have this. I’m also a stage 3 colon cancer survivor, had a temporary iliostomy bag and had it reveresed 2 months ago. I’m suffering from having no awareness of when a bowel movement is happening with urgency and no way to hold it in. I have both my sphincters and my colon is still attached but no longer have a rectum. I’ve been struggling mentally with this new way of life and on schedule to have my external sphincter tightened to hopefully improve my bowel incontenance troubles. It’s so troublesome and embarrassing having it happen in public and has affected my quality of life, truly hoping the surgery will provide me even a little bit of control
Hi Jelena, another great video. It's surprising how little is known of this syndrome. My illeostomy reversal was May 2021 and I'm still struggling with LARS symptoms. Your videos are very helpful to me. Thank you for the time and care you take producing them. 💙💙💙
I know! It may not be as physically life threatening as other diseases, but it can put a huge damper on a person’s quality of life. Thank you for watching 💙
Hi Jelena from Germany. I also had Stage 3 Rectum Cancer detectet in August 22 with just 31 Years age! I've had my Ileostomy Reversion 5 weeks ago and struggling with really bad symtoms. Thank you for your Video! Now I know I need patience and time but it will get better!
@@SurvivorJelena thank you! There are only a few People you can talk with similar issues. P.S. I excuse my englisch. I left High School is 15 years ago.
Fortunately, my colorectal cancer was not in my colon and I didn’t have to have a resection. But, because I had radiation therapy in my pelvis, I am suffering from something similar to LARS. It’s called PRD (pelvic radiation disease). The symptoms are very similar same as LARS. In my ‘GO’ bag, which I take everywhere, I have baby wipes, depends, and so on. It’s the ‘new normal’...
14:58 Thanks for all of your videos. They have been a great help during my stage 3 rectal cancer treatment journey. I have completed radiation and chemo therapy and have just been told by my surgeon that some cancer is still present in my rectum and she recommends surgery. I will be 70 years old in a couple of months and after reading about LARS and how it effects your life going forward, I’m considering not having the surgery. Quality of life is so much more important to me than quantity. Of course, there’s no way of knowing how the remaining cancer will manifest itself but it’s a chance that I may take and live my remaining time to the fullest. It’s certainly an option that I will discuss with my doctor. Thanks again for taking the time to make and post your videos and share your story. The comments of others have also been very helpful.
Surgery is a big thing, and it’s definitely up to you to decide what is best for you and your situation. Have a chat with your oncologist too and see what they recommend if you’d like to forgo surgery.
Hi Jelena, long time no see. I’m still fighting my cancer it spread to my stomach lining. Still doing chemo every other week. I’m still looking for my new normal. Your the best!🌹
One of the best videos about explaining LARS from patient's perspective. The last bit of your video was correct about doctors not knowing much about it due to lack of evidence as it is a new entity that needs more studies. May God bless you
I scored 42 on your lar test it’s been two years On my reversal, I had stage-three rectal cancer I was told to try green banana powder and it may slow things down some for me so I’m gonna give it a try thanks for your videos
Good video and valuable information, thanks. My reversal was on June 2022 and I'm struggling with LARS since then, things have improved a lot, but based on the questionnaire I'm at 38 points and sometimes feeling miserable. I think I know all your recommendations but I'm not consistent, will try to follow them better. Wish you all the best on our new way of living.
Thank you. I was searching for something to help learn about and cope with pain after LAR to remove stage 3 cancer from my rectum. Now I feel like it's normal. The NHS here in the UK is on its knees. I haven't been checked yet, and it's nearly a year since treatment. I get a phone call next week as a checkup. Not been in a good place recently.
OOOOOH, Wow. You still have a belly button, you are so lucky. I had mine after my surgeries until the last Surgeon did not care about his work or me. And he messed me up in many ways. I still suffer 10 years later.
Thanks for your channel Jelena. Your channel is really helpful. My surgeon also doesn't have many suggestions for dealing with LARS. If anyone's backside gets sore, a bidet is a life saver. Here is an inexpensive one: Brondell SS-150W SimpleSpa Thinline Essential Bidet. There are also travel bidets that are available.
Great video, I have a lot of lars symptoms but clustering seems to be the biggest problem and a sore bum. Only had the surgery 10 weeks ago so hopeful things will improve
Fermented apricots help me occasionally. I use the brand “share”. It helps push out more at once, which helps me go less often. The stool is softer, but not like diarrhea. Plus, it’s all natural.
Thank you so much for your video! Recently diagnosed with rectal cancer and surprised that I’m not finding many personal stories being shared. Was hoping to connect and see other people’s journeys so I know what to expect. Are you aware of any online support groups that are trustworthy?
If you’re on Facebook, Colontown is a huge group with lots of subgroups (like for each of the stages, ostomy, etc.) Otherwise, I found lots of individual friends by searching hashtags on Instagram, like rectal cancer, colon cancer.
Second your recommendation for extracting medication tablets with scissors for carrying in your survival pack. Godzilla and Hercules pulling in opposite directions could not open an Imodium blister pack.
Hi there, you have been such a great help through my journey of colorectal cancer. i have had a very similar experience to you. i have an illeostomy at the moment and am hoping to get it reversed. Have had my sigmond colon removed and some of my rectum. Did you have the same? Are you able to work. I am a single mom and have to work, i am a teacher and am incredibly nervous for the reversal as i cant afford to spend all day in the loo.
I’m so happy to hear my videos have been such a help to you during your journey. 💙 I had part of my sigmoid removed and about 2/3 of my rectum. I work, but I’ve only worked from home since my reversal. I would highly recommend trying to schedule your reversal for a time when you are able to have a few weeks off. I know a few ladies that do manage to teach, so it is possible.
Hi, Jelena my score was 41 I was reversed in November 2019, I had stage 1 rectum cancer all my rectum has gone, I also had complications after surgery with a leak on my pelvis leading to Endosponge , I have tried everything and still suffering with a good day 7 times and a bad day I lose count, I am on loperamide and Normacol at the moment just to maintain where I am now
Thank you for your vDOs. They are helping me cope and making me stronger. I have my LAR in Oct 17, 2022 and had reversed on Jan 3, 2023. I am still having a hard with LARS. Using 3-4 Imodium/day and Metamucil daily. I really don’t know when I am going to get better;( Any suggestions for me. I don’t get much from my doctor.
I've had my reversal 15 months ago and have been dealing with LARS clustering since. I've tried most of the solutions found in this video with some improvements. Was wondering if others have tried Ozempic for clustering ?
Hi Jelena I hope you're doing well. I heard today that I may have my End ileostomy & hernia repair in the next 5-6 weeks at a private hospital(Just depends on scheduling it in). I wouldn't be surprised if I end up with this as I usually am someone where if something can go wrong medically it usually does lol
I'm having site reduction surgery with HIPEC in January It's a 16 hour surgery I have been told that if there is discease affecting my j pouch I will lose it and have a permanent ostomy I have been feeling really great after a few diet changes really really good so I'm really anxious about this surgery But this surgery is likely my last chance for cancer free with that being 50/50 Hope you are well
Hi Jelena, Thank you for another excellent video, would you consider homemade Greek yogurt daily?, it's really beneficial for dietary intestinal flora, also I would suggest walking (10,000 steps per day) is an excellent natural workout for healthy bowel movements, I think 600ml of tepid filtered water with lime/lemon juice in the evening time is really beneficial too, luckily I scored well below 20 on your quiz, but I couldn't help laughing at your (SEF,s) 😀
I’m not a big fan of yogurt, but I do drink kombucha to get in some healthy probiotics. I move as much as I can and get out to run 3-4 times a week. That’s great you scored so low!
Because of the placement of your pouch I believe that you have a colostomy not in ileostomy an ileostomy is on the other side at the very end of your small intestine I know because I've had one yours is at the sigmoid colon area just wanted to point that out an ileostomy is about 3 inches to the right of your belly button
Heeeeey been awhile! Looking great. I finished my last round of chemo(again🙈🙉🙊). That makes 24 rounds total. However still not cancer free😒 Also i was wondering your thoughts about your hair. Mostly about not losing it. I was reallty worried about it, when i was told i woild need chemo. But now after 24 rounds of chemo and still no hair loss im really amazed.
Well crap. Is surgery on the table? I’m glad I didn’t completely lose my hair, but when I look back at pictures there is an obvious thinning. My hair looked so scraggly. It may be more obvious for women vs men, or you may have just experienced less/no hair loss.
My reversal was in Nov 2021 my LAR was July 2021 no chemo or radiation. I went back to work pretty quickly , I am a dental hygienist and I struggle daily with LARS. I use imodium and metamucil, but it is not always enough I am not sure what to do
@@SurvivorJelena I am in the process of doing that. Your videos are very helpful, my surgeon and team were great but very little was explained about after reversal care. they briefly mentioned clustering but nothing else .
Imodium 32 mg. Max is fairly normal. Its in the literature. But not without some risk. Read about it and as always talk to your doctor. Blah,blah,blah.
I had a low anterior resection for stage three rectal cancer in December, and I have been struggling with LARS ever since. I have a question for you as someone who has been through this. Does it ever get better?
My life has been me glued to a toilet for two years until I started doing daily warm water enemas. Trust me when I say, it’s the ONLY thing that gave me my life back. The ONLY THING. Your diet doesn’t help you. There are literally no tips that actually work except for irrigation. You can go nearly 48 hours without having to worry about a bowl movement/ clustering.
UA-cam wrote the book on being an annoying website they have ads to take up 7/8 of the page stuck right in your goddamn face every freaking fucking second
Thank you for all information you provided. So do you have all of rectum removed? I have my reversal three weeks ago and have really bad days since then. The surgeon left me only 2 CM from the rectum although my tumor was about 9 cm from the anus. This makes me regret choosing this surgeon.
Hello from México en my mom has her reversal procedure 20 days algo, she Is experiencing lars since day 5 but one thing i haven't heard you tall about ist pain, she Is hurting a lot
What about all the other problems like your teeth falling out you’re freezing neuropathy read your endless ringing ears Total exhaustion and trying to find the energy to do anything without, of course, not being able to leave the house
Iam a surgeon,and I did alot of these surgeries and I really liked your presentation alot and I will recommend it to my patients,thank you ❤
Thank you so much! Glad to hear my video is good enough that a surgeon recommends it to their patients ☺️
What type of surgeon you are general surgeon ya gastro surgeon
Iam a general surgeon subspicialized in GIT surgeries then subspicialized in colorectal surgery
I f you are a general surgeon how do you perform gi and colorectal surgeries because you don't have sufficient educational qualifications for it
Thank you for the understanding! I’ve been struggling with understanding if I have this. I’m also a stage 3 colon cancer survivor, had a temporary iliostomy bag and had it reveresed 2 months ago. I’m suffering from having no awareness of when a bowel movement is happening with urgency and no way to hold it in. I have both my sphincters and my colon is still attached but no longer have a rectum. I’ve been struggling mentally with this new way of life and on schedule to have my external sphincter tightened to hopefully improve my bowel incontenance troubles. It’s so troublesome and embarrassing having it happen in public and has affected my quality of life, truly hoping the surgery will provide me even a little bit of control
I hope the new surgery helps! It sounds like it should at least help with a few issues. 🤞🏼🤞🏼💙 Hang in there.
Try to eat one banana per day and muti vitamins, zinc, magnesium, B complex supplements.
Hi Jelena, another great video. It's surprising how little is known of this syndrome. My illeostomy reversal was May 2021 and I'm still struggling with LARS symptoms. Your videos are very helpful to me. Thank you for the time and care you take producing them.
💙💙💙
I know! It may not be as physically life threatening as other diseases, but it can put a huge damper on a person’s quality of life. Thank you for watching 💙
Hi Jelena from Germany. I also had Stage 3 Rectum Cancer detectet in August 22 with just 31 Years age! I've had my Ileostomy Reversion 5 weeks ago and struggling with really bad symtoms. Thank you for your Video! Now I know I need patience and time but it will get better!
I hope you start feeling improvement soon! It’s so hard to be patient when you feel so miserable.
@@SurvivorJelena thank you! There are only a few People you can talk with similar issues. P.S. I excuse my englisch. I left High School is 15 years ago.
How is your symptoms now ??
I am 5 weeks post reversal and really miserable. Will it get better ??😢😢@@djtekrider
Fortunately, my colorectal cancer was not in my colon and I didn’t have to have a resection. But, because I had radiation therapy in my pelvis, I am suffering from something similar to LARS. It’s called PRD (pelvic radiation disease). The symptoms are very similar same as LARS. In my ‘GO’ bag, which I take everywhere, I have baby wipes, depends, and so on. It’s the ‘new normal’...
I’ve never heard of PRD, thanks for sharing.
14:58 Thanks for all of your videos. They have been a great help during my stage 3 rectal cancer treatment journey. I have completed radiation and chemo therapy and have just been told by my surgeon that some cancer is still present in my rectum and she recommends surgery. I will be 70 years old in a couple of months and after reading about LARS and how it effects your life going forward, I’m considering not having the surgery. Quality of life is so much more important to me than quantity. Of course, there’s no way of knowing how the remaining cancer will manifest itself but it’s a chance that I may take and live my remaining time to the fullest. It’s certainly an option that I will discuss with my doctor. Thanks again for taking the time to make and post your videos and share your story. The comments of others have also been very helpful.
Surgery is a big thing, and it’s definitely up to you to decide what is best for you and your situation. Have a chat with your oncologist too and see what they recommend if you’d like to forgo surgery.
Hi Jelena, long time no see. I’m still fighting my cancer it spread to my stomach lining. Still doing chemo every other week. I’m still looking for my new normal. Your the best!🌹
Hi Ed! I was thinking about you over the holidays. I hope you were able to enjoy them 💙
One of the best videos about explaining LARS from patient's perspective. The last bit of your video was correct about doctors not knowing much about it due to lack of evidence as it is a new entity that needs more studies. May God bless you
Thank you so much 😊
I scored 42 on your lar test it’s been two years On my reversal, I had stage-three rectal cancer
I was told to try green banana powder and it may slow things down some for me so I’m gonna give it a try thanks for your videos
Good video and valuable information, thanks. My reversal was on June 2022 and I'm struggling with LARS since then, things have improved a lot, but based on the questionnaire I'm at 38 points and sometimes feeling miserable. I think I know all your recommendations but I'm not consistent, will try to follow them better. Wish you all the best on our new way of living.
Hopefully things continue to improve for you. You’re only about 6 months out from your reversal so you could still see some improvements.
hi, also my reversal was at jun 22, still some of lars .. but thanks god .. still alive ... best wishes and not that thing come again
Thank you. I was searching for something to help learn about and cope with pain after LAR to remove stage 3 cancer from my rectum. Now I feel like it's normal. The NHS here in the UK is on its knees. I haven't been checked yet, and it's nearly a year since treatment. I get a phone call next week as a checkup. Not been in a good place recently.
OOOOOH, Wow. You still have a belly button, you are so lucky. I had mine after my surgeries until the last Surgeon did not care about his work or me. And he messed me up in many ways. I still suffer 10 years later.
Thanks for your channel Jelena. Your channel is really helpful. My surgeon also doesn't have many suggestions for dealing with LARS. If anyone's backside gets sore, a bidet is a life saver. Here is an inexpensive one: Brondell SS-150W SimpleSpa Thinline Essential Bidet. There are also travel bidets that are available.
Thanks for the suggestion. There are a lot of travel ones on the market so a recommendation from a fellow survivor is a help!
Great video, I have a lot of lars symptoms but clustering seems to be the biggest problem and a sore bum.
Only had the surgery 10 weeks ago so hopeful things will improve
Did your symptoms improved?
THANK YOU!!! This was so helpful 🙏🏼
You’re welcome! I’m so happy to hear this 😊
Fermented apricots help me occasionally. I use the brand “share”. It helps push out more at once, which helps me go less often. The stool is softer, but not like diarrhea. Plus, it’s all natural.
I’ve never even heard of fermented apricots. I’m glad they work for you!
Thank you so much for your video! Recently diagnosed with rectal cancer and surprised that I’m not finding many personal stories being shared. Was hoping to connect and see other people’s journeys so I know what to expect. Are you aware of any online support groups that are trustworthy?
If you’re on Facebook, Colontown is a huge group with lots of subgroups (like for each of the stages, ostomy, etc.) Otherwise, I found lots of individual friends by searching hashtags on Instagram, like rectal cancer, colon cancer.
Survivor here too with LARS
Second your recommendation for extracting medication tablets with scissors for carrying in your survival pack. Godzilla and Hercules pulling in opposite directions could not open an Imodium blister pack.
😂😂😂
Hi jelena another helpful video my Lars points between 20-30 thanks for tips
You’re welcome! I hope they can help you out 💙
Hi there, you have been such a great help through my journey of colorectal cancer. i have had a very similar experience to you. i have an illeostomy at the moment and am hoping to get it reversed. Have had my sigmond colon removed and some of my rectum. Did you have the same? Are you able to work. I am a single mom and have to work, i am a teacher and am incredibly nervous for the reversal as i cant afford to spend all day in the loo.
I’m so happy to hear my videos have been such a help to you during your journey. 💙 I had part of my sigmoid removed and about 2/3 of my rectum. I work, but I’ve only worked from home since my reversal. I would highly recommend trying to schedule your reversal for a time when you are able to have a few weeks off. I know a few ladies that do manage to teach, so it is possible.
Have you considered filing for disability insurance? Or perhaps transferring into a role that affords you more independence?
@@SurvivorJelena Thank you so much for your advice.
Hi, Jelena my score was 41 I was reversed in November 2019, I had stage 1 rectum cancer all my rectum has gone, I also had complications after surgery with a leak on my pelvis leading to Endosponge , I have tried everything and still suffering with a good day 7 times and a bad day I lose count, I am on loperamide and Normacol at the moment just to maintain where I am now
Happy Thanksgiving Day Jelena and your family
TANK YOU FOR YOUR HELP
You’re welcome
Thank you for your vDOs. They are helping me cope and making me stronger. I have my LAR in Oct 17, 2022 and had reversed on Jan 3, 2023.
I am still having a hard with LARS. Using 3-4 Imodium/day and Metamucil daily.
I really don’t know when I am going to get better;(
Any suggestions for me. I don’t get much from my doctor.
Have you tried keeping a journal with what you eat to see if you can spot what foods cause the worst symptoms?
@@SurvivorJelena I did. Sometimes I have diarrhea when I eat the same foods.
I've had my reversal 15 months ago and have been dealing with LARS clustering since. I've tried most of the solutions found in this video with some improvements. Was wondering if others have tried Ozempic for clustering ?
Hi Jelena I hope you're doing well. I heard today that I may have my End ileostomy & hernia repair in the next 5-6 weeks at a private hospital(Just depends on scheduling it in). I wouldn't be surprised if I end up with this as I usually am someone where if something can go wrong medically it usually does lol
I hope the surgeries go smoothly and this is the one time that you get lucky and don’t have anything go wrong 🤞🏼
@@SurvivorJelena Thankyou. I hope your health problems don't cause you many issues and that you're in good health!
I'm having site reduction surgery with HIPEC in January
It's a 16 hour surgery
I have been told that if there is discease affecting my j pouch I will lose it and have a permanent ostomy
I have been feeling really great after a few diet changes really really good so I'm really anxious about this surgery
But this surgery is likely my last chance for cancer free with that being 50/50
Hope you are well
HIPEC is definitely a long surgery. I hope you’re in the good 50% 🤞🏼💙
Hi Jelena, Thank you for another excellent video, would you consider homemade Greek yogurt daily?, it's really beneficial for dietary intestinal flora, also I would suggest walking (10,000 steps per day) is an excellent natural workout for healthy bowel movements, I think 600ml of tepid filtered water with lime/lemon juice in the evening time is really beneficial too, luckily I scored well below 20 on your quiz, but I couldn't help laughing at your (SEF,s) 😀
I’m not a big fan of yogurt, but I do drink kombucha to get in some healthy probiotics. I move as much as I can and get out to run 3-4 times a week. That’s great you scored so low!
@@SurvivorJelena I take Kefir. That may work for some people.
Because of the placement of your pouch I believe that you have a colostomy not in ileostomy an ileostomy is on the other side at the very end of your small intestine I know because I've had one yours is at the sigmoid colon area just wanted to point that out an ileostomy is about 3 inches to the right of your belly button
It was definitely an ileostomy - it was 3” to the right of my belly button and had liquid/soft output.
Heeeeey been awhile!
Looking great.
I finished my last round of chemo(again🙈🙉🙊). That makes 24 rounds total.
However still not cancer free😒
Also i was wondering your thoughts about your hair. Mostly about not losing it. I was reallty worried about it, when i was told i woild need chemo. But now after 24 rounds of chemo and still no hair loss im really amazed.
Well crap. Is surgery on the table?
I’m glad I didn’t completely lose my hair, but when I look back at pictures there is an obvious thinning. My hair looked so scraggly. It may be more obvious for women vs men, or you may have just experienced less/no hair loss.
@@SurvivorJelena I did not thin out but it's really fine even my beard ☺️
I have everything you mentioned in your video
My reversal was in Nov 2021 my LAR was July 2021 no chemo or radiation. I went back to work pretty quickly , I am a dental hygienist and I struggle daily with LARS. I use imodium and metamucil, but it is not always enough I am not sure what to do
Have you tried adjusting your diet to see if that can help a bit during your workday?
@@SurvivorJelena I am in the process of doing that. Your videos are very helpful, my surgeon and team were great but very little was explained about after reversal care. they briefly mentioned clustering but nothing else .
Imodium 32 mg. Max is fairly normal. Its in the literature. But not without some risk. Read about it and as always talk to your doctor. Blah,blah,blah.
Sure is kind to share your experience.
Same
Am severe Lars
I had a low anterior resection for stage three rectal cancer in December, and I have been struggling with LARS ever since. I have a question for you as someone who has been through this. Does it ever get better?
How are you doing?
My life has been me glued to a toilet for two years until I started doing daily warm water enemas. Trust me when I say, it’s the ONLY thing that gave me my life back. The ONLY THING. Your diet doesn’t help you. There are literally no tips that actually work except for irrigation. You can go nearly 48 hours without having to worry about a bowl movement/ clustering.
I’m happy to hear you’ve found something that has helped you get your life back.
Do you get gas pain or cramps sometimes a few hours after the enema.
And how much water do you use
Amen to that!!!
UA-cam wrote the book on being an annoying website they have ads to take up 7/8 of the page stuck right in your goddamn face every freaking fucking second
Thank you for all information you provided. So do you have all of rectum removed?
I have my reversal three weeks ago and have really bad days since then. The surgeon left me only 2 CM from the rectum although my tumor was about 9 cm from the anus. This makes me regret choosing this surgeon.
I have about half of it left. Hopefully things improve a bit for you soon. 🤞🏼💙
that shirt 👌👐😁
Am going thru this . Are you normal
Hello from México en my mom has her reversal procedure 20 days algo, she Is experiencing lars since day 5 but one thing i haven't heard you tall about ist pain, she Is hurting a lot
Is it pain from the surgery itself or more of a pain inside like her colon/rectum hurting from being in use again?
@@SurvivorJelena the pain appears whe she has to go to the toilet, It is urgente and she hurts until she Is done, i Guess It Is the pelvic floor
I would reach out to her surgeon to see if they can refer her to pelvic floor therapy. That could help out with the pain.
Hii
What about all the other problems like your teeth falling out you’re freezing neuropathy read your endless ringing ears Total exhaustion and trying to find the energy to do anything without, of course, not being able to leave the house
Dam, that shirt 👌
❤
Do you ever wish you would have just stuck with a lifelong ileostomy bag?
I do another video where I talk about that: ua-cam.com/video/CbyvtkQqYqQ/v-deo.html. But long story short, no.
How are you Jelena .. I hope you are fine .. in fact ... you are giving us the power .. with your self smile .. best wishes
🤍🤍🤍🤍
I’m doing pretty well. Still have some down days but I’m so grateful to still be here and be able to watch my daughter grow 💜
@@SurvivorJelena daughter grow .......... I wish 😀😀