My husband was diagnosed with Stage 4 Rectal Cancer back in 2020. He has since had an ostomy installed, reversed, ileostomy installed and reversed. Everything you are describing is exactly what he experiences as well. Thank you for making these videos. As a loved one who is trying to be supportive, these videos are very inciteful.
Great video! I came to the opposite conclusion with the exact same questions in mind,,,,,I have always had bowel problems, long before cancer, I can't stand my surgeon so I really don't want another surgery, I have a full time job where I am stuck on the phone for up to 90 minutes at a time and I can't just run to the bathroom whenever I want or spend a lot of time there, and my ostomy (after the initial getting used to it phase) doesn't give me many problems at all...I love being able to live my life without worrying about running to the bathroom all the time, so frankly, I am keeping mine. There is no wrong answer,,,,it's very personal. And I am so glad your choice works for you!
Great video Jelena, I had a permanent colostomy 4 weeks ago after suffering from debilitating lars for 2 years. It's going well so far, just very grateful to be alive and kicking after such a life changing diagnosis of colorectal cancer. 💙💙💙
Nice video Jelena. Love your way of easily explaining things clearly. I was first dx’d in November 2018 with stage 3 colon cancer and stage 4 in February 2020. My colostomy surgery was September 2020. Because l took to my colostomy extremely well l still have it. As my hospital gave me no help in self care with an ostomy l did an absolutely ton of research and after about 5-7 months of trial and error l locked into the perfect system for me. It’s been over a year since l had skin irritation and blowouts. I feel safe in public and able to do outdoor activities without fear. I honestly would not want to risk going back to what it was like before my colostomy. I’m afraid l would become a hermit. For me this is the best of both worlds. I’m lucky that my colostomy is stable and easily manageable…fairly consistent in its behavior. That is very much a blessing. Mornings when l get up are the most active and throughout the day maybe 1 or 2 more times. But very consistent and regular. Thank you so much for this video, l think it will bring a lot of insight for newbies.🌷🌿🌷
Thank you for your kind words 💙 That’s awesome you’ve got a system down now with your colostomy and haven’t any blowouts or irritation in over a year 🎉👏🏼 Sounds like keeping your colostomy has definitely been the right decision for you.
Thank you for your information. Next month I'm going to have colon resection but I am praying i won't need the bag. Doc is hopeful too but he said it might just be to let me heal and reverse in 3 months. You had a bad reaction to ostomy with tape and blow outs .. scares me. We don't know how strong we are until strong is the only choice we have.
I had stage 3 rectal cancer in 2021, I had 8 rounds of folfox, 25 radiation treatments, 25 days of oral chemo, and then resection, I decided to go with an end ostomy and they removed my rectum, the surgery was shorter since they did not have to create a J-pouch, they took out the rectum and stapled the rectal stump and routed the colon through my stomach, no need for an ileostomy. my output is firm like a normal bowel movement and regular, like once every day or two since i have all of my colon, just no rectum. Since i have a rectal stump it is reversible but i am keeping the bag, i can eat what i want, and i live my life exactly the way i did before cancer, most times i forget about the bag even being there. I only have to empty sometimes once a day, sometimes only once every couple days. I had to live my life around bathrooms during chemo and radiation and do not want to live like that again. End ostomy's and ileostomy's are night and day different output, the output from an end ostomy is firm and non acidic so no skin problems. I am 58, very active, i bike, run, hike, swim, waterski, go camping and all kinds of other things. People with rectal cancer should research a hartmann procedure with an end ostomy, if you do not like it they can hook your plumbing back up at a later date. I had to convince my surgeon to do this, as he did not even discuss the option with me and thought i was crazy for suggesting it, he now agrees it was the best decision for my active lifestyle.
Thank you for the videos. You gave me the power to fight against rectum cancer. 2020 we had the corona pandemic. No support group, nothing. The time was horrrible, but you are the sun for me. Thank you so much 😊
You’re welcome. One of the reasons I started this channel was to help others going through a cancer diagnosis feel a little less alone. I’m glad to have been there virtually for you 💙
I got my ileostomy (intestinal blockage) about a year and a half ago. They said I was a good candidate for reversal. I met with the doctor and went over the what could be the side effects and for me I didn't want to be worried about the toilet thing (urgent need to go) going multiple times per day so I ultimately decided to stay with the bag and deal with that. I am also older so I don't have the feeling that I am cursed with this problem. I am happy to still be alive. I don't think I had a hard surgery but the doctor said he was worried about me. Glad you are well
My reversal was over 2 years ago, and I have been in diapers ever since. Having perused your channel a bit, your positive outlook has inspired me to change my lot in life. Especially liked the weekly diet video. I am determined to find the right combination of diet, metamucil, Immodium, and vitamins for me. Frankly I had given up and had just settled into routine, but as I said, you have inspired me to improve my situation. Still better than being on the bag!
I thank you for all your hard work on these videos, I've watched them all and really enjoyed them. I had the same cancer diagnosis as you but I had 8 rounds of FOLFOX first followed by 28 radiation treatments followed by LAR surgery and loop ileostomy. My reversal was in September. The first 2 months after my reversal was the worst time of my life. I truly had over 60 bowel movements some days, none of them controllable. I spent hours in the shower. It's about 8 months later and has improved a lot but I've had to alter my lifestyle a lot. I only eat once a day now. Not too much fibre, especially beans. Not too much alcohol. I still shit myself about once a week but I can live with it. Getting a colostomy is a huge decision to make. It's forever.
Thanks for watching! There is still time for things to improve for you post-reversal, so hopefully you’ll see at least slight improvements over the next few months 🤞🏼💙
Love your videos. Just finished my second week of chemo/radiation. Will have an ostomy after my surgery. Your videos have been so valuable in preparing for different aspects of treatment. ❤
I had the same diagnosis and treatment like you, Jelena. Now I'm more then 4 years off my ileostomy. Still till this day my bowelmovements are unpredictible. Some days it goes ok, but then again I get a terrible diarrhia and or I have to go 7 times in an hour to the toilet because I feel the need to and little comes out.When I go out, I'm always afraid there will be no toilet if I get the urge to go. I'm certain now that this problem will be for the rest of my life, I'm 58. Good news is that i'm totally recovered from the cancer.
Hi Inesha, I am so very happy to hear that you no longer has cancer! I can imagine how unsettling it is to go somewhere and always checking for a toilet, I feel the same way even though I don't have this illness. Wishing you all the best with your health. 🤗🌹🙏
@@bibizeeboohoo741 Thank you so much for your kind reaction! Only people who struggle with this problem know how difficult it is and impacts your social life. I also wish a lifelong good health to you 😘
That’s awesome congrats. I am missing my ileostomy as well. With the irregular bm’s not to mention the radiation recall pain in the rectal area can be excruciating at times. If I had the option I would love to go back the the bag. Just taking it a day at a time. Thanks for sharing
Quick question to everyone experiencing unpredictable bowel movements, how much of your colon was removed ? Asking cos I had a endo in my rectum and a small potion was removed, getting ready for my reversal and just hoping I don’t have this issues .. I’m 28. Please help!!! Thanks in advance
Very similar here. Stage 3 Rectal cancer diagnosed in July 2016. oral chemo and 6 weeks radiation followed by surgery, 10 rounds of chemo through a port and oral chemo. Temporary loop Ileostomy for 8 months then reversed. 1 year later a Desmond tumor along with 2 feet small intestine removed. I’ve suffered IBS my whole life and now years after the cancer and surgeries the IBS is even worse. I managed the Ileostomy really well and contemplating having it put back.
Just came across this video. I was diagnosed with Stage 3C ovarian cancer. I had surgery to remove cancer and abnormal cells and now in chemo. I have a temporary ileostomy bag to allow my colon to heal as a small portion was removed. I believe my reversal surgery will be a couple months after chemo. Thank you for the video and information. Definitely going to make sure to ask a lot of questions before surgery. I’d like my life back, but I know it’s not going to happen.
@@SurvivorJelena Thank you so much 😊. I also have an active stoma and forgot how marshmallows help until you mentioned it in your video. I hope you are well.
So glad I found your videos cause I too have stage 3 colorectal cancer and as of right now I’m dealing with a colostomy bag for now before I take any other steps.
I'm just 3 days out of having my ileostomy taken down at the University of Washington. I was having some of the issues mentioned while I was having to be on the bag during the 3 months following my LAR for Stage IIC sigmoid colon cancer. I also saw as a "PRO" that, at nearly 65 years old, and with good medical insurance and a trusted surgeon, I was also facing the financial tradeoff of surgery versus a lifetime of out of pocket ostomy products, issues with an active stoma and wafer leaks, and dissatisfaction with my body image of wearing pouches - nevermind the little "tummy a$$hole." Regardless of what the future holds, I'm glad that I took a chance with the takedown.
I’m glad to hear you’re happy with your decision. You’re right, I forgot about the potential cost of ostomy supplies, especially if your insurance doesn’t cover them.
Hi "Tigress". I had a colostomy reversal almost 4 months ago and it went very well. I mean, there was recovery time but all went as planned and I can hardly even remember having the bag even though it took up a year of my life. My elimination is pretty normal now. It seems different than it was before my colostomy, but it was kind of messed up before so maybe it's better without the 12" of colon they removed. Oh well, I hope your recovery has gone well. I had the same thoughts about the expense of all the "equipment". It took awhile to get un-used to it again; I still have some stuff to donate somewhere. Eek, I hope I won't need it again but I've fallen into the same bad habits I had before: gotta take care of myself! It's a matter of fixing my life, in large part, but I'm sort of trapped. There is always a solution though. I need to remember that I had this! Well all I have to do is look at my hideous scar, because I had a big peristomal hernia repaired too and was very disappointed at how it turned out. Still, it's great to be free of that burden and feel somewhat like my old self again. Well, sorry to blab on about myself to a stranger, wasn't my plan. Good wishes..
@@cockeyedoptimista Thank you! I had my entire sigmoid removed, plus a shave of the bladder dome where the tumor had spread to (creating a passage between the colon and bladder). Fortunately, the LAR was able to be done lapriscopically- so four little incisions and a bikini line cut to remove the "specimens" intact. I've had some of the same annoying issues with elimination after the ileostomy takedown. Beats the heck out of cancer that almost sent me to the morgue. Coincidentally, I had a post-surgical CT scan last week, and was discussing the results with my oncologist this morning. After the visit, I spoke to the nursing staff about donating the collection of now-unneeded ostomy supplies to anyone who needed that kind of assistance. My insurance company case manager couldn't find any vendors for supplies here at home (Alaska), but I was able to purchase supplies at a pharmacy during my trips to Seattle- and also found them on Amazon.
Now nine months out, and still cancer-free - and a clean colonoscopy. The only issue is some slight discomfort under the site of the ileostomy. CT simply shows a slight, fat-filled, defect - that, thank goodness, doesn't have any portion of the loop of small bowel (i.e. no hernia)
You've helped me so much over the past two years with my cancer. I'm headed in for ROB LAR next week. Thank you so much for your videos. You're so brave!
I too had skin irritation issues with the adhesive from the wafers. I had success reducing the irritation by applying liquid Flonase to the skin around my ostomy before applying the wafer. The Flonase helps to reduce the allergic reaction that causes the skin irritation.
Hi Jelena, i had my ileostomy reversed last october after 10 months. I had incontinence issues for 6 months afterwards and practically begged my surgeon for permanent stoma which i had 3 weeks ago. Best decision i ever made! I went from being housebound to living my life as normal in a few weeks. In regards to your skin irritation that you had did you use any skin barrier spray? I use it all thr time and have no skin irritations 😊
That’s great you’ve got your life back! I used a powder (I can’t remember what kind it was, but it definitely wasn’t baby powder) to help with the irritated skin.
I had a temporary Illealostomy bag due to a blockage 2 years ago. It had to much output and kept me dehydrated to the point I had to get IV fluids twice a week. I'm glad I got the reversal.
Hi can u please share me your Instagram or Facebook I'd so that I can talk with you need to know some tips from you I m suffering from same issues it would be helpful
Thank you for this video. I’ve been struggling with my reversal and have been questioning a colostomy bag. I would never do an ileostomy bag again. The colostomy was much easier. I’m seeing a physical therapist that specializes with LARS now. I have only been twice. I’m hoping that this helps. Again, thank you for doing this video. It has helped me to relax a bit.
Could you describe what the physical therapy is doing to help improve your situation? My biggest challenge is urgency. I really can’t control my bowel movement when I feel the need to go. When my body says it’s time to go I have to get to a bathroom fairly quickly. My second challenge is clustering. I usually have to go 4 or 5 times in an afternoon. Thanks
Hi, I will try and update both of you. I don’t see much improvement yet. Maybe little bits. My issue is more constipation than urgency. However, I experience urgency too. The PT right now has been internal and mental. The physical therapist inserts her finger in me and has me do different breathing, muscle clinching, slight movements and relaxation. At home I am to do the same, as well as, sit on the toilet for a few minutes at a time and do relaxation there. It has to be the same time everyday. I am to do twisting movements too. I have only been a couple times and the physical therapist says it will be a few months before I see any improvements. My surgeon is looking into neuromodular therapy for me and a flushing system. I hope this helped. I will update more as I see improvements. Blessings to both of you and all that are going through this!
@@kellytrundle2914 Kelly - thanks for the info. Sounds like much of what is being done is related to muscle relaxation and getting your mind and nerves activated to bring back proper muscle movements. Perhaps I need to work on muscle control to help get me through moments of urgency. My oncologist hasn’t been very helpful with my LAR syndrome, other than to acknowledge it and tell me he thinks I rate in the middle of people who have post reversal issues. It seems like you’ve worked with your surgeon so I think I will contact my surgeon for advice. Good luck with your PT!
I had a reversal 2yrs ago and it gets better. Be patient. I'm back to work full time. I work out 5 times a week and my life feels back to normal, so hang in there
Let us know how long it took you to get your bowl under control (working normally?) after the reversal and any hints like exercise... Your channel is by far the best on this terrible disease!
I had stage three colorectal cancer and went through both when my surgeon told me my iliostomy was temporary i went for it best decision I ever made because I hated having the bags
I had diagnosed with, Bowel Perforation and it end up requiring surgery and it was successful back in November, I was told 3 to 6 months before since I had it I hated it I had to be stuck in my house 24/7 I am more than ready to have it reversed, I am getting it reversed no matter what the sooner the better.
Hi, I had an eliostomy operation nearly 3 years ago. I am finally found a surgeon that will reverse it in 12 days. I am 58 years old and I am scared because I don't know really what to expect after surgery, and how long it will be before I will be able to get up and do little things, plus, when my bowel will settle. They are putting a chaff in my side to help push the waste through the colon. Does anyone have knowledgeable advice to give me. Plus, I am also concerned about a possible leak. If you can, please could you please answer my concerns and worries. side
Your videos helped me so much my pass google name was peaceful lady, Lar surgery. ostamy and reversal has been a challenge second set of scans every thing still looks good, had my reversal back in January, dealing with long bathroom breaks very little action, at times bloating glad to know this is nothing to be to alarmed about my Surgeon was like things should become normal after six months, it hasn’t , trying to keep fiber in diet and exercise notice everything slowly pushes right along a little easier, having my ostamy I had almost identical issues like you constant flow in bag no matter what I did for my circumstances don’t regret my reversal, but realize everyone is different.💙
Thanks, Jelena! I'm getting my ileostomy reversed 3/18/24 and your videos have been so helpful! Thank you for sharing. I've found that eating applesauce & tea biscuits the day before really helped slow things down. After the initial experience of frequent leakage & blowouts, I switched to Convatec° Natura moldable system, and it made ALL the difference! No leaks, no bursts, and I can keep them on for 3 to 4 days. The adhesive is stronger, so the spray adhesive remover helps with the removal, and then I use the Convatec Esenta adhesive remover wipes to remove any residual glue left on my skin. Then I use the barrier shield wipes, let it dry, and I'm ready for the new appliance. I find that middle to late morning is a good time to do this, as my stoma is fairly inactive. My husband helps me take it off & put the new appliance on, while I do any cleanup needed. Since it's a lot thicker output (from eating the applesauce and tea biscuits the day before), it's easy to keep up with any minor output. It's made a world of difference to my peristomal area as well, especially compared to how it looked when my skin was so red when I has having so many leaks and bursts. I also found that too much rinsing, (or rinsing, period!) Compromised the seal on the former Coloplast Mio sensura system that I used first, and the Convatec Natura moldable that I use now. So I sincerely recommend Against rinsing the bag at all. I hope these tips help some.
Hi stranger, I was so glad to have the reversal done. Although my cancer came back in my stomach lining. So now I’m on oral chemo twice a day. And I’m told I will be on the pills the rest of my life. Do you think that sounds right? Or should I look for a second opinion? Also being on these chemo pills I’m told to stay out of the sun. I’m living full time on the beach, that’s a rough direction to follow. I’m so glad how you made out and for helping so many of us.
Hi Ed! Good to hear from you! Chemo for life is unfortunately a lot of stage 4 patients’ reality. I remember wearing a sun hat whenever I was outside when I was taking oral chemo. Umbrellas and sun shirts that have built in SPF can help you enjoy the beach 🏖️
I have had the pouch surgery as I had my colon removed and have not had a stoma for 1 and a half years and it has been a nightmare. I’m getting another operation to go back to the stoma. I can’t imagine living like this any longer even though I hated the stoma
i got a colostomy and and i’m just scared to get it reversed i don’t want them to open me back up again. but i will be happy to get it reversed it’s just the surgery im nervous about.
adhesive barrier skin saver is a wipe on solution 3M brand Cavilon no sting barrier film . comes in a non aerosol pump spray, or as a wet wipe. saves me from irritation not near the stoma. also, stoma powder on the sore spots (Holister brand), then dab with any brand of "no sting skin prep" which converts the stoma powder to a crust. these two methods will protect your skin and help it heal you'll be shocked at how quickly it works. ALSO for output while you're changing use either a "stoma genie" or make your own from a small section of paper towel cardboard tube with a paper towel stuffed into one end to catch the stuff. Hold over the stoma with one hand while working on a change.
My surgeon is really pushing for me to have my reversal …he keeps saying I’m too young and should have it reversed. I’m not sure what to do. I’ve had my stoma for 2 years now and I’m very happy with it. My skin is fine, output is normal. Before my surgery I hardly ever went to the toilet but with my stoma I’m so regular.
I am watching your video for the first time. Liked your honesty and analysis. Still i am not able to decide. Please help me. I had total colectomy with J pouch and diverting ileostomy one year back for cancer sigmoid colon. My ileostomy is fine . No problem. Gained weight. Should i go for reversal as i am told that i will have to go to pass motion 15 tines per 24 hours. Also 15% possibility of pochitis
Ive had mine for 2 months now...i had diverticulitis. Worst pain ever out of nowhere 1 day..im scared to get the reversal. July 9th is my appointment to talk about setting the date for surgery. No cancer but im scared of the things that can go wrong. Im 39 with a bunch of kids and my wife cant do it on her own if something should go wrong. I dont know what to do.
Hi Jelena new subscriber here. Great attitude and videos! Some background... I was diagnosed with stage 3 rectal cancer January 2023. Tumor mid rectum. Been through neoadjuvant chemo and radiation then LAR (TME) surgery Sept. 18. Removed my rectum, sigmoid colon, with end to end anastomosis. (Surgeon said I still have 1/3 of my rectum) Have my loop Ileostomy and just did my gastrografin leak test (still waiting on results). I unfortunately developed a postoperative DVT in my lower left leg, so my reversal is pushed back 3 moths while that's treated. My questions are 6 years since the end of your treatment how would you rate your quality of life? Do you feel like you have independence and can do normal daily activities (run errands, shop, socialize, ride in a car for a while, even travel)? More good days than bad? Reading all the horror stories about LARS has me very anxious and stressed. A toilet bound life is no way to live. I know everyone is different with symptoms , but our diagnosis and treatment seems very similar. Seems like the oncologic treatment is a technical success but often results in a functional failure. I'm trying to stay positive. So happy you're cancer free and thanks for sharing!
I’d say my quality of life now is an 8/10. I get out of the house, go shopping, drive my daughter around town for her sports activities, fly to visit family, and eat out at restaurants. I have more good days than bad and I have control over my bowel movements. I do still have some bad days where I could spend a good hour or two in the bathroom (in multiple trips), but I manage. I also know my body will never be the same because of the cancer and the treatments I went through, so I can’t expect to be the same as I was 10 years ago. Plus our bodies just change as we age. I hope your DVT resolves and if you choose to go through with the reversal that you’ve got a good quality of life after.
My opinion is that ileostomies are worse than colostomies because the poop coming from the small intestine is highly irritating due to the presence of digestive enzymes. OTOH, unlike a colostomy, the poop doesn't have much of an odor.
You’re right that the stool coming out of an ileostomy is more irritating than when it’s coming out of a colostomy, but for some people an ileostomy is the only option.
@@SurvivorJelena Yes, it's necessary for recovery from bowel surgery. My husband hated his ileostomy. He couldn't tolerate any of the adhesives and the gasket rings always leaked. He's scheduled for more bowel re-sectioning and is not looking forward to another ileostomy. Thank you for your informative channel.🥰
I had emergency colostomy surgery 7 mths ago. I am a female 69 with IBS for numerous years - diarrhea flare ups all the time, cramps & pooping my pants just randomly. It sucked big time. My emergency surgery diagnosis was diverticulitis - seeds stuck in colon creating rupture/tare and I know have a stoma bag. It’s time for me to consider the reversal surgery but I’m having doubts about it. Since it was an emergency & by the time the Dr.s figured out what was wrong with - I had developed sepsis - so surgery or die - I picked surgery & bag. My hospital stay was horrible - they did not have enough nurses to cover the patients. In the beginning I had a catheter & that worked quite well, since I was having 3 types of antibiotics pumped into me 24/7 during my stay. Except the nurses would forget to check the output containers & they overflow. Then they tried diapers, bed pans, etc. They would have worked find if I could have had a nurse available to help when they were full. Having to lie in your own pee for hours really started to affect my mental state. After 28 days I was released & felt like I had PTSD from my hospital stay. I have had no troubles with my bag & can do everything I was doing prior to the without the IBS cramps and urgent diarrhea. At this point I don’t think i will get the reversal surgery. I understand there can be complications & set backs, another hospital stay and healing process all over again. I have no complaints or concerns with my bag. No leaks, no irritation from the adhesive, it seems to be running smoothly. Anyone who does not have the surgery - please drop me a note. I’d love to hear your thoughts. Thank you for your platform to be able to reach out and opinions from others that had concerns about having the surgery. Thank you in advance for your time. bonnie
Hello love Your videos I'm 6 days out I'm having my reversal my bowels are starting to form now but they look like they did when I was. Diagnosed long and thin so I'm starting to get concerned and worried. Do you think this is normal?
That’s definitely normal. Your digestive system is remembering how to fully digest food and the stools will be thin when you’re going multiple times a day.
Thanks for this great video..Jelena. I am from Nepal. I had gone through ileostomy reversal..2 weeks ago. I had also gone through 28 cycle of radiation followed by chemotherapy. Now I am having some problems after reversal surgery. I have to go to toilet 10/15 times a day. Its like having constipation. For how long...this problem persists?? can you suggest plz..??
I've just had one a week to I had a bowel obstruction man can be reversed this is such a life changer I have been so depressed I feel like everyone can smell me I feel like everyone knows it's eating me up inside 💠
I had stage T1N0 rectum cancer my surgery was May 2019 complicated by anastomotic leak treated with endosponge ,I had reversal in November 2019 and still suffering severe LARS , being treated by biofeedback clinic but things are not improving , trying irrigation at the moment with not much success , now being told that I am running out of option and I should consider going back on the bag permanently which is not what I want to do so anything you could advise would be useful
Ugh, that’s tough. My only other suggestion/advice is to join the Living with LARS group on Facebook to connect with others suffering from LARS to get more tips/help. I wish I could help more 😔
It could be a sign of cancer, or it could be hemorrhoids, or a bunch of other things. Only your doctor will be able to run tests to figure out what exactly it is.
I had a colostomy due to colon cancer and after 2 years it was reversed this past January. Luckily the recovery went well and no major issues. My only issue is that my scar hurts. My surgeon told me to use vitamin e to make it softer. Its softer but I still feel pain. Did you notice pain with your scar?
I do still notice pain occasionally at the ostomy site scar, usually when I'm doing something ab intensive like exercising of lifting. If it constantly is in pain I would check with your doctor.
@SurvivorJelena I've checked with my surgeon multiple times, and he said it's normal. He's usually very detailed these past few years, so maybe it's normal? I did try some oil, and it softened the scar, but the pain is still there.
My husband got his reversal on Monday and he is not doing so well. He currently has a nasogastric tube because they say his stomach is asleep and will need to keep it in till he has bowel function
My mom is getting ready for an ostomy to as part of process to repair a colon fistula. Do you think that you hated the ileostomy because it was loop? I thought the loop ileostomy have more complications than others but on the other hand, loop have higher chances of reversal success...
I don’t think it was the loop part that bothered me, it was the fact that it was so active all the time which made giving my skin a break and doing bag changes difficult.
How much cm of rectum do you have left ?…I have only 2-3 …so i think i will opt for a permanent stomy instead of the reversal…I’m afraid of the life with that new rectum….
Hi new subscriber I have rectal cancer stage 3 may I ask how big your tumor was at the begining of your journey mine was 2.75 inche long how much did chemo a radiation sheik your tumor pre op thanks for any info
going tthrough this now but to clarify - you are getting another surgery whether or not you reverse the ostomy you're either having reversal surgery, or, if you keep the ostomy, they will need to surgically remove your unused guts (from the large intestines to and including the anus).
Good video. I am stage 2 rectal cancer. No bag. No surgery. No chemo. I look forward to 100% quality of life and a quick death in hospice. 55 years on this earth is not bad.
I didn't mean to come across rude but every time I want to learn about something I need to know I half to go threw a life story from people the lady who is talking right now is telling me about her stools I know about that I'm living it o just want to know all about reversing it and what is involved that's it so I am going to keep searching until I get there
I had Ulcerative Colitis for many years and and in 2004 I decided it was time to get rid of my Colon. I was asked if I was interested in a J-Pouch or go straight for an Ileostomy. I went for the J-Pouch. After the operation and the J-Pouch was fitted I had to have a Stoma for a few months for things to heal down there, then the Stoma was removed and I was left with my J-Pouch. I had 18 years of no end of problems. Always looking for a toilet, accidents at night when I had no control, the feeling of wanting to go was like contractions and very painful. Well after 18 years I told my Surgeon the J-Pouch had to go. I then went for a 100% Ileostomy with my butt stitched up (Ken butt) and it as been the best thing i could have done and wish I had gone for the Stoma right from the Start. I now have complete control and only change my Stoma Bag twice a week and empty it a few times each day. I am not always looking for a toilet and I will be honest "I LOVE MY STOMA". Regards IGGIE
My husband was diagnosed with Stage 4 Rectal Cancer back in 2020. He has since had an ostomy installed, reversed, ileostomy installed and reversed. Everything you are describing is exactly what he experiences as well. Thank you for making these videos. As a loved one who is trying to be supportive, these videos are very inciteful.
Happy to help 💙 I hope your husband is hanging in there.
Hi HiphipRanae, hope your hubby is coping the best way he can with your loving support as well. 🌹😍🙏
Great video! I came to the opposite conclusion with the exact same questions in mind,,,,,I have always had bowel problems, long before cancer, I can't stand my surgeon so I really don't want another surgery, I have a full time job where I am stuck on the phone for up to 90 minutes at a time and I can't just run to the bathroom whenever I want or spend a lot of time there, and my ostomy (after the initial getting used to it phase) doesn't give me many problems at all...I love being able to live my life without worrying about running to the bathroom all the time, so frankly, I am keeping mine. There is no wrong answer,,,,it's very personal. And I am so glad your choice works for you!
I've kept mine as well, and very happy about it. I'm 5 1/2 years cancer free now.
Great video Jelena, I had a permanent colostomy 4 weeks ago after suffering from debilitating lars for 2 years. It's going well so far, just very grateful to be alive and kicking after such a life changing diagnosis of colorectal cancer. 💙💙💙
Glad to hear it sounds like you’re doing well so far. I hope you get a better quality of life having the colostomy 💙
Nice video Jelena. Love your way of easily explaining things clearly. I was first dx’d in November 2018 with stage 3 colon cancer and stage 4 in February 2020. My colostomy surgery was September 2020. Because l took to my colostomy extremely well l still have it. As my hospital gave me no help in self care with an ostomy l did an absolutely ton of research and after about 5-7 months of trial and error l locked into the perfect system for me. It’s been over a year since l had skin irritation and blowouts. I feel safe in public and able to do outdoor activities without fear. I honestly would not want to risk going back to what it was like before my colostomy. I’m afraid l would become a hermit. For me this is the best of both worlds. I’m lucky that my colostomy is stable and easily manageable…fairly consistent in its behavior. That is very much a blessing. Mornings when l get up are the most active and throughout the day maybe 1 or 2 more times. But very consistent and regular. Thank you so much for this video, l think it will bring a lot of insight for newbies.🌷🌿🌷
Thank you for your kind words 💙 That’s awesome you’ve got a system down now with your colostomy and haven’t any blowouts or irritation in over a year 🎉👏🏼 Sounds like keeping your colostomy has definitely been the right decision for you.
Thank you for your information. Next month I'm going to have colon resection but I am praying i won't need the bag. Doc is hopeful too but he said it might just be to let me heal and reverse in 3 months. You had a bad reaction to ostomy with tape and blow outs .. scares me. We don't know how strong we are until strong is the only choice we have.
It took a few months before the irritation really started setting in. If you end up with one for just a few months it hopefully won’t be too bad.
I had stage 2 colorectal cancer and after treatments had the Iliostomy surgery and then reverse Surgery. Given a choice I’d never want to have a bag
I look forward to meeting God. No bag no chemo no surgery no radiation. Death is better than the bag.
I had stage 3 rectal cancer in 2021, I had 8 rounds of folfox, 25 radiation treatments, 25 days of oral chemo, and then resection, I decided to go with an end ostomy and they removed my rectum, the surgery was shorter since they did not have to create a J-pouch, they took out the rectum and stapled the rectal stump and routed the colon through my stomach, no need for an ileostomy. my output is firm like a normal bowel movement and regular, like once every day or two since i have all of my colon, just no rectum. Since i have a rectal stump it is reversible but i am keeping the bag, i can eat what i want, and i live my life exactly the way i did before cancer, most times i forget about the bag even being there. I only have to empty sometimes once a day, sometimes only once every couple days. I had to live my life around bathrooms during chemo and radiation and do not want to live like that again. End ostomy's and ileostomy's are night and day different output, the output from an end ostomy is firm and non acidic so no skin problems. I am 58, very active, i bike, run, hike, swim, waterski, go camping and all kinds of other things. People with rectal cancer should research a hartmann procedure with an end ostomy, if you do not like it they can hook your plumbing back up at a later date. I had to convince my surgeon to do this, as he did not even discuss the option with me and thought i was crazy for suggesting it, he now agrees it was the best decision for my active lifestyle.
Thank you for posting I have to make a decision in a week if I want to do the ileostomy and reversal or put a permanent ostomy in
Thank you for the videos. You gave me the power to fight against rectum cancer. 2020 we had the corona pandemic. No support group, nothing. The time was horrrible, but you are the sun for me. Thank you so much
😊
You’re welcome. One of the reasons I started this channel was to help others going through a cancer diagnosis feel a little less alone. I’m glad to have been there virtually for you 💙
I got my ileostomy (intestinal blockage) about a year and a half ago. They said I was a good candidate for reversal. I met with the doctor and went over the what could be the side effects and for me I didn't want to be worried about the toilet thing (urgent need to go) going multiple times per day so I ultimately decided to stay with the bag and deal with that. I am also older so I don't have the feeling that I am cursed with this problem. I am happy to still be alive. I don't think I had a hard surgery but the doctor said he was worried about me. Glad you are well
Thanks for sharing the information that many people might not be willing to share. Your honesty and directness is just lovely and refreshing :)
You are so welcome! 💙
My reversal was over 2 years ago, and I have been in diapers ever since. Having perused your channel a bit, your positive outlook has inspired me to change my lot in life. Especially liked the weekly diet video. I am determined to find the right combination of diet, metamucil, Immodium, and vitamins for me. Frankly I had given up and had just settled into routine, but as I said, you have inspired me to improve my situation. Still better than being on the bag!
Thanks for sharing!! I hope changing up your routine a bit can help you to at least get out of diapers. Best of luck to you 💙
I thank you for all your hard work on these videos, I've watched them all and really enjoyed them. I had the same cancer diagnosis as you but I had 8 rounds of FOLFOX first followed by 28 radiation treatments followed by LAR surgery and loop ileostomy. My reversal was in September. The first 2 months after my reversal was the worst time of my life. I truly had over 60 bowel movements some days, none of them controllable. I spent hours in the shower. It's about 8 months later and has improved a lot but I've had to alter my lifestyle a lot. I only eat once a day now. Not too much fibre, especially beans. Not too much alcohol. I still shit myself about once a week but I can live with it. Getting a colostomy is a huge decision to make. It's forever.
Thanks for watching! There is still time for things to improve for you post-reversal, so hopefully you’ll see at least slight improvements over the next few months 🤞🏼💙
@@SurvivorJelena Thanks for your kind words. Your videos were very helpful for me.
So glad to see you back! Your videos are so helpful.
Love your videos. Just finished my second week of chemo/radiation. Will have an ostomy after my surgery. Your videos have been so valuable in preparing for different aspects of treatment. ❤
Thank you, I’m so glad to hear you love them!I’m happy to help you along the way. 💙 Hope treatment hasn’t been too rough on you yet.
I had the same diagnosis and treatment like you, Jelena. Now I'm more then 4 years off my ileostomy. Still till this day my bowelmovements are unpredictible. Some days it goes ok, but then again I get a terrible diarrhia and or I have to go 7 times in an hour to the toilet because I feel the need to and little comes out.When I go out, I'm always afraid there will be no toilet if I get the urge to go. I'm certain now that this problem will be for the rest of my life, I'm 58. Good news is that i'm totally recovered from the cancer.
That sounds familiar - good days and bad days. I always carry Imodium in my purse in case those bad days start happening while I’m away from home 💩
Hi Inesha, I am so very happy to hear that you no longer has cancer! I can imagine how unsettling it is to go somewhere and always checking for a toilet, I feel the same way even though I don't have this illness. Wishing you all the best with your health. 🤗🌹🙏
@@bibizeeboohoo741 Thank you so much for your kind reaction! Only people who struggle with this problem know how difficult it is and impacts your social life. I also wish a lifelong good health to you 😘
That’s awesome congrats. I am missing my ileostomy as well. With the irregular bm’s not to mention the radiation recall pain in the rectal area can be excruciating at times. If I had the option I would love to go back the the bag. Just taking it a day at a time. Thanks for sharing
Quick question to everyone experiencing unpredictable bowel movements, how much of your colon was removed ? Asking cos I had a endo in my rectum and a small potion was removed, getting ready for my reversal and just hoping I don’t have this issues .. I’m 28.
Please help!!!
Thanks in advance
Very similar here. Stage 3 Rectal cancer diagnosed in July 2016. oral chemo and 6 weeks radiation followed by surgery, 10 rounds of chemo through a port and oral chemo. Temporary loop Ileostomy for 8 months then reversed. 1 year later a Desmond tumor along with 2 feet small intestine removed. I’ve suffered IBS my whole life and now years after the cancer and surgeries the IBS is even worse. I managed the Ileostomy really well and contemplating having it put back.
Just came across this video. I was diagnosed with Stage 3C ovarian cancer. I had surgery to remove cancer and abnormal cells and now in chemo. I have a temporary ileostomy bag to allow my colon to heal as a small portion was removed. I believe my reversal surgery will be a couple months after chemo. Thank you for the video and information. Definitely going to make sure to ask a lot of questions before surgery. I’d like my life back, but I know it’s not going to happen.
Best wishes to you as you navigate chemo.
@@SurvivorJelena Thank you so much 😊. I also have an active stoma and forgot how marshmallows help until you mentioned it in your video. I hope you are well.
So glad I found your videos cause I too have stage 3 colorectal cancer and as of right now I’m dealing with a colostomy bag for now before I take any other steps.
I’m glad you found my videos too 💙 Wishing you the best as you decide your next steps.
Thanks very much for your testimony it's going to help me very much.
Glad it was helpful!
Thanks Jelena for the great video and thanks to all the commentors for your input also. It very valuable to me while I try to decide what to do!
There’s a great, supportive community on here that has a lot of valuable information they also share. Happy to help! 💙
I'm just 3 days out of having my ileostomy taken down at the University of Washington. I was having some of the issues mentioned while I was having to be on the bag during the 3 months following my LAR for Stage IIC sigmoid colon cancer.
I also saw as a "PRO" that, at nearly 65 years old, and with good medical insurance and a trusted surgeon, I was also facing the financial tradeoff of surgery versus a lifetime of out of pocket ostomy products, issues with an active stoma and wafer leaks, and dissatisfaction with my body image of wearing pouches - nevermind the little "tummy a$$hole." Regardless of what the future holds, I'm glad that I took a chance with the takedown.
I’m glad to hear you’re happy with your decision. You’re right, I forgot about the potential cost of ostomy supplies, especially if your insurance doesn’t cover them.
Hi "Tigress". I had a colostomy reversal almost 4 months ago and it went very well. I mean, there was recovery time but all went as planned and I can hardly even remember having the bag even though it took up a year of my life. My elimination is pretty normal now. It seems different than it was before my colostomy, but it was kind of messed up before so maybe it's better without the 12" of colon they removed. Oh well, I hope your recovery has gone well. I had the same thoughts about the expense of all the "equipment". It took awhile to get un-used to it again; I still have some stuff to donate somewhere. Eek, I hope I won't need it again but I've fallen into the same bad habits I had before: gotta take care of myself! It's a matter of fixing my life, in large part, but I'm sort of trapped. There is always a solution though. I need to remember that I had this! Well all I have to do is look at my hideous scar, because I had a big peristomal hernia repaired too and was very disappointed at how it turned out. Still, it's great to be free of that burden and feel somewhat like my old self again. Well, sorry to blab on about myself to a stranger, wasn't my plan. Good wishes..
@@cockeyedoptimista Thank you! I had my entire sigmoid removed, plus a shave of the bladder dome where the tumor had spread to (creating a passage between the colon and bladder). Fortunately, the LAR was able to be done lapriscopically- so four little incisions and a bikini line cut to remove the "specimens" intact.
I've had some of the same annoying issues with elimination after the ileostomy takedown. Beats the heck out of cancer that almost sent me to the morgue.
Coincidentally, I had a post-surgical CT scan last week, and was discussing the results with my oncologist this morning. After the visit, I spoke to the nursing staff about donating the collection of now-unneeded ostomy supplies to anyone who needed that kind of assistance. My insurance company case manager couldn't find any vendors for supplies here at home (Alaska), but I was able to purchase supplies at a pharmacy during my trips to Seattle- and also found them on Amazon.
Now nine months out, and still cancer-free - and a clean colonoscopy. The only issue is some slight discomfort under the site of the ileostomy. CT simply shows a slight, fat-filled, defect - that, thank goodness, doesn't have any portion of the loop of small bowel (i.e. no hernia)
Great vdo as always Jelena, great to see your doing well, you've given us tremendous help on your channel
Thanks so much Noelle! Hope you’re doing well 💙
You've helped me so much over the past two years with my cancer. I'm headed in for ROB LAR next week. Thank you so much for your videos. You're so brave!
Happy to help you out 💙 I hope your surgery goes well.
I too had skin irritation issues with the adhesive from the wafers. I had success reducing the irritation by applying liquid Flonase to the skin around my ostomy before applying the wafer. The Flonase helps to reduce the allergic reaction that causes the skin irritation.
That’s a great suggestion!
So happy you’re back!
Helpful info, Jelena! Thank you!
Happy to hear it was helpful for you! You're welcome 💙
Hi Jelena, i had my ileostomy reversed last october after 10 months. I had incontinence issues for 6 months afterwards and practically begged my surgeon for permanent stoma which i had 3 weeks ago. Best decision i ever made! I went from being housebound to living my life as normal in a few weeks. In regards to your skin irritation that you had did you use any skin barrier spray? I use it all thr time and have no skin irritations 😊
That’s great you’ve got your life back! I used a powder (I can’t remember what kind it was, but it definitely wasn’t baby powder) to help with the irritated skin.
After your surgery how many months take your recovery? Please advice. You are a strong lady God bless you ❤❤.
Thanks for sharing. Similar situation. Stay strong!
So happy you are so much recovered and happy that your reversal went well. Wishing you the best of health. 🤗😍🌹💖👌🙏
Thank you 💙
I am so grateful for this priceless content. I hope to reverse mine.
Grateful Aussie.❤
I had a temporary Illealostomy bag due to a blockage 2 years ago. It had to much output and kept me dehydrated to the point I had to get IV fluids twice a week. I'm glad I got the reversal.
I am suffering exactly same
How r u feeling now after reversal?
@@arzooarora9297 I feel great now. The surgery is no picnic. But worth getting
@@margiehammonds9522 gud to hear
When was your second surgery ? And first surgery? how much gap was there in between two surgeries?
Hi can u please share me your Instagram or Facebook I'd so that I can talk with you need to know some tips from you I m suffering from same issues it would be helpful
Thank you for your honestly I went through the same thing currently out of icu
Thank you for this video. I’ve been struggling with my reversal and have been questioning a colostomy bag. I would never do an ileostomy bag again. The colostomy was much easier. I’m seeing a physical therapist that specializes with LARS now. I have only been twice. I’m hoping that this helps. Again, thank you for doing this video. It has helped me to relax a bit.
I’d love to hear an update down the road as to how the PT went and if it helped!
Could you describe what the physical therapy is doing to help improve your situation? My biggest challenge is urgency. I really can’t control my bowel movement when I feel the need to go. When my body says it’s time to go I have to get to a bathroom fairly quickly. My second challenge is clustering. I usually have to go 4 or 5 times in an afternoon. Thanks
Hi, I will try and update both of you. I don’t see much improvement yet. Maybe little bits. My issue is more constipation than urgency. However, I experience urgency too.
The PT right now has been internal and mental. The physical therapist inserts her finger in me and has me do different breathing, muscle clinching, slight movements and relaxation. At home I am to do the same, as well as, sit on the toilet for a few minutes at a time and do relaxation there. It has to be the same time everyday.
I am to do twisting movements too. I have only been a couple times and the physical therapist says it will be a few months before I see any improvements.
My surgeon is looking into neuromodular therapy for me and a flushing system.
I hope this helped. I will update more as I see improvements.
Blessings to both of you and all that are going through this!
@@kellytrundle2914 Kelly - thanks for the info. Sounds like much of what is being done is related to muscle relaxation and getting your mind and nerves activated to bring back proper muscle movements. Perhaps I need to work on muscle control to help get me through moments of urgency. My oncologist hasn’t been very helpful with my LAR syndrome, other than to acknowledge it and tell me he thinks I rate in the middle of people who have post reversal issues. It seems like you’ve worked with your surgeon so I think I will contact my surgeon for advice. Good luck with your PT!
I’m 16 and just got my colostomy reversed because I had ulcerative colitis. It’s rough right now but I hope that it turns out well in the future
How are you doing now? I’m in a similar situation to you and am wondering how it turned out.
@@wilbertdude8947 I’m doing really good. It was hard for the first few months but now I’m really glad I got it done.
I had a reversal 2yrs ago and it gets better. Be patient. I'm back to work full time. I work out 5 times a week and my life feels back to normal, so hang in there
@@chuym4687 How long did it take until things got back to normal?
Let us know how long it took you to get your bowl under control (working normally?) after the reversal and any hints like exercise... Your channel is by far the best on this terrible disease!
Excellent video!❤
Thanks! 💙
Thanks so much for this info video! Much appreciated!
Happy to help!
I had stage three colorectal cancer and went through both when my surgeon told me my iliostomy was temporary i went for it best decision I ever made because I hated having the bags
I had diagnosed with, Bowel Perforation and it end up requiring surgery and it was successful back in November, I was told 3 to 6 months before since I had it I hated it I had to be stuck in my house 24/7 I am more than ready to have it reversed, I am getting it reversed no matter what the sooner the better.
I have the same thing..R u not scared about the reversal? I am
@@vinnyavalanche not really I just want it back inside me and, go back to normal.
Hi, I had an eliostomy operation nearly 3 years ago. I am finally found a surgeon that will reverse it in 12 days. I am 58 years old and I am scared because I don't know really what to expect after surgery, and how long it will be before I will be able to get up and do little things, plus, when my bowel will settle. They are putting a chaff in my side to help push the waste through the colon. Does anyone have knowledgeable advice to give me. Plus, I am also concerned about a possible leak. If you can, please could you please answer my concerns and worries.
side
Your videos helped me so much my pass google name was peaceful lady, Lar surgery. ostamy and reversal has been a challenge second set of scans every thing still looks good, had my reversal back in January, dealing with long bathroom breaks very little action, at times bloating glad to know this is nothing to be to alarmed about my Surgeon was like things should become normal after six months, it hasn’t , trying to keep fiber in diet and exercise notice everything slowly pushes right along a little easier, having my ostamy I had almost identical issues like you constant flow in bag no matter what I did for my circumstances don’t regret my reversal, but realize everyone is different.💙
Brave girl !!! crazy brave and strong
Thanks, Jelena! I'm getting my ileostomy reversed 3/18/24 and your videos have been so helpful! Thank you for sharing.
I've found that eating applesauce & tea biscuits the day before really helped slow things down. After the initial experience of frequent leakage & blowouts, I switched to Convatec° Natura moldable system, and it made ALL the difference! No leaks, no bursts, and I can keep them on for 3 to 4 days. The adhesive is stronger, so the spray adhesive remover helps with the removal, and then I use the Convatec Esenta adhesive remover wipes to remove any residual glue left on my skin. Then I use the barrier shield wipes, let it dry, and I'm ready for the new appliance. I find that middle to late morning is a good time to do this, as my stoma is fairly inactive. My husband helps me take it off & put the new appliance on, while I do any cleanup needed. Since it's a lot thicker output (from eating the applesauce and tea biscuits the day before), it's easy to keep up with any minor output. It's made a world of difference to my peristomal area as well, especially compared to how it looked when my skin was so red when I has having so many leaks and bursts.
I also found that too much rinsing, (or rinsing, period!) Compromised the seal on the former Coloplast Mio sensura system that I used first, and the Convatec Natura moldable that I use now. So I sincerely recommend Against rinsing the bag at all.
I hope these tips help some.
Wiping the area with a clean warm wet washcloth after removing the Residual glue from the area is important also. Then use the barrier shield wipes.
Thanks for these tips! They will hopefully help others too.
Hi stranger, I was so glad to have the reversal done. Although my cancer came back in my stomach lining. So now I’m on oral chemo twice a day. And I’m told I will be on the pills the rest of my life. Do you think that sounds right? Or should I look for a second opinion? Also being on these chemo pills I’m told to stay out of the sun. I’m living full time on the beach, that’s a rough direction to follow. I’m so glad how you made out and for helping so many of us.
Hi Ed! Good to hear from you! Chemo for life is unfortunately a lot of stage 4 patients’ reality. I remember wearing a sun hat whenever I was outside when I was taking oral chemo. Umbrellas and sun shirts that have built in SPF can help you enjoy the beach 🏖️
I have had the pouch surgery as I had my colon removed and have not had a stoma for 1 and a half years and it has been a nightmare. I’m getting another operation to go back to the stoma. I can’t imagine living like this any longer even though I hated the stoma
i got a colostomy and and i’m just scared to get it reversed i don’t want them to open me back up again. but i will be happy to get it reversed it’s just the surgery im nervous about.
adhesive barrier skin saver is a wipe on solution 3M brand Cavilon no sting barrier film . comes in a non aerosol pump spray, or as a wet wipe. saves me from irritation not near the stoma. also, stoma powder on the sore spots (Holister brand), then dab with any brand of "no sting skin prep" which converts the stoma powder to a crust. these two methods will protect your skin and help it heal you'll be shocked at how quickly it works. ALSO for output while you're changing use either a "stoma genie" or make your own from a small section of paper towel cardboard tube with a paper towel stuffed into one end to catch the stuff. Hold over the stoma with one hand while working on a change.
These are great tips!
@@SurvivorJelena wound care nurses at home. they were the total hookup for tips and products. the DIY stoma genie is my own contrubution.
I’ve had mine for 1 year and I’m so ready to get a reversal surgery 😢
Thank you!
You're welcome!
My surgeon is really pushing for me to have my reversal …he keeps saying I’m too young and should have it reversed. I’m not sure what to do. I’ve had my stoma for 2 years now and I’m very happy with it. My skin is fine, output is normal. Before my surgery I hardly ever went to the toilet but with my stoma I’m so regular.
Stay with the stoma is my advice
I am watching your video for the first time. Liked your honesty and analysis. Still i am not able to decide. Please help me. I had total colectomy with J pouch and diverting ileostomy one year back for cancer sigmoid colon. My ileostomy is fine . No problem. Gained weight. Should i go for reversal as i am told that i will have to go to pass motion 15 tines per 24 hours. Also 15% possibility of pochitis
Ive had mine for 2 months now...i had diverticulitis. Worst pain ever out of nowhere 1 day..im scared to get the reversal. July 9th is my appointment to talk about setting the date for surgery. No cancer but im scared of the things that can go wrong. Im 39 with a bunch of kids and my wife cant do it on her own if something should go wrong. I dont know what to do.
Hi Jelena new subscriber here. Great attitude and videos! Some background... I was diagnosed with stage 3 rectal cancer January 2023. Tumor mid rectum. Been through neoadjuvant chemo and radiation then LAR (TME) surgery Sept. 18. Removed my rectum, sigmoid colon, with end to end anastomosis. (Surgeon said I still have 1/3 of my rectum) Have my loop Ileostomy and just did my gastrografin leak test (still waiting on results). I unfortunately developed a postoperative DVT in my lower left leg, so my reversal is pushed back 3 moths while that's treated. My questions are 6 years since the end of your treatment how would you rate your quality of life? Do you feel like you have independence and can do normal daily activities (run errands, shop, socialize, ride in a car for a while, even travel)? More good days than bad? Reading all the horror stories about LARS has me very anxious and stressed. A toilet bound life is no way to live. I know everyone is different with symptoms , but our diagnosis and treatment seems very similar. Seems like the oncologic treatment is a technical success but often results in a functional failure. I'm trying to stay positive. So happy you're cancer free and thanks for sharing!
I’d say my quality of life now is an 8/10. I get out of the house, go shopping, drive my daughter around town for her sports activities, fly to visit family, and eat out at restaurants. I have more good days than bad and I have control over my bowel movements. I do still have some bad days where I could spend a good hour or two in the bathroom (in multiple trips), but I manage. I also know my body will never be the same because of the cancer and the treatments I went through, so I can’t expect to be the same as I was 10 years ago. Plus our bodies just change as we age. I hope your DVT resolves and if you choose to go through with the reversal that you’ve got a good quality of life after.
My opinion is that ileostomies are worse than colostomies because the poop coming from the small intestine is highly irritating due to the presence of digestive enzymes. OTOH, unlike a colostomy, the poop doesn't have much of an odor.
You’re right that the stool coming out of an ileostomy is more irritating than when it’s coming out of a colostomy, but for some people an ileostomy is the only option.
@@SurvivorJelena Yes, it's necessary for recovery from bowel surgery. My husband hated his ileostomy. He couldn't tolerate any of the adhesives and the gasket rings always leaked. He's scheduled for more bowel re-sectioning and is not looking forward to another ileostomy. Thank you for your informative channel.🥰
I had emergency colostomy surgery 7 mths ago. I am a female 69 with IBS for numerous years - diarrhea flare ups all the time, cramps & pooping my pants just randomly. It sucked big time. My emergency surgery diagnosis was diverticulitis - seeds stuck in colon creating rupture/tare and I know have a stoma bag. It’s time for me to consider the reversal surgery but I’m having doubts about it. Since it was an emergency & by the time the Dr.s figured out what was wrong with - I had developed sepsis - so surgery or die - I picked surgery & bag. My hospital stay was horrible - they did not have enough nurses to cover the patients. In the beginning I had a catheter & that worked quite well, since I was having 3 types of antibiotics pumped into me 24/7 during my stay. Except the nurses would forget to check the output containers & they overflow. Then they tried diapers, bed pans, etc. They would have worked find if I could have had a nurse available to help when they were full. Having to lie in your own pee for hours really started to affect my mental state. After 28 days I was released & felt like I had PTSD from my hospital stay. I have had no troubles with my bag & can do everything I was doing prior to the without the IBS cramps and urgent diarrhea. At this point I don’t think i will get the reversal surgery. I understand there can be complications & set backs, another hospital stay and healing process all over again. I have no complaints or concerns with my bag. No leaks, no irritation from the adhesive, it seems to be running smoothly. Anyone who does not have the surgery - please drop me a note. I’d love to hear your thoughts. Thank you for your platform to be able to reach out and opinions from others that had concerns about having the surgery. Thank you in advance for your time. bonnie
Hello love Your videos I'm 6 days out I'm having my reversal my bowels are starting to form now but they look like they did when I was. Diagnosed long and thin so I'm starting to get concerned and worried. Do you think this is normal?
That’s definitely normal. Your digestive system is remembering how to fully digest food and the stools will be thin when you’re going multiple times a day.
Warm hugs. Thank you for sharing
After 4 yrs of ileostomy reversal my father still facing diarrhoea. How to get rid of this
Have you watched my LARS video yet? LARS: What It Is and Tips to Manage It
th-cam.com/video/4xck0dDOAl0/w-d-xo.html
Thanks for this great video..Jelena. I am from Nepal. I had gone through ileostomy reversal..2 weeks ago. I had also gone through 28 cycle of radiation followed by chemotherapy. Now I am having some problems after reversal surgery. I have to go to toilet 10/15 times a day. Its like having constipation. For how long...this problem persists?? can you suggest plz..??
Have you had your follow up appointment with the surgeon? If so, did they give you the ok to take any meds? That’s when I started seeing improvement.
I've just had one a week to I had a bowel obstruction man can be reversed this is such a life changer I have been so depressed I feel like everyone can smell me I feel like everyone knows it's eating me up inside 💠
Write a PRO/CON sheet for near future and long future. Ask a social worker to help you do a Quality of Life (QOL) assessment.
I had stage T1N0 rectum cancer my surgery was May 2019 complicated by anastomotic leak treated with endosponge ,I had reversal in November 2019 and still suffering severe LARS , being treated by biofeedback clinic but things are not improving , trying irrigation at the moment with not much success , now being told that I am running out of option and I should consider going back on the bag permanently which is not what I want to do so anything you could advise would be useful
Have you watched the video I did on LARS? That has pretty much any tip that I know of in it.
@@SurvivorJelena yes my score is 41 I have been taking everything you have mentioned for years now
Ugh, that’s tough. My only other suggestion/advice is to join the Living with LARS group on Facebook to connect with others suffering from LARS to get more tips/help. I wish I could help more 😔
3 months ago I was pooping and bright red blood came out my stool and blood was on the toilet paper no blood since then is that a sign of cancer
same thing happened to me and i ignored it 2 yr later stage 2 cancer
It could be a sign of cancer, or it could be hemorrhoids, or a bunch of other things. Only your doctor will be able to run tests to figure out what exactly it is.
I had a colostomy due to colon cancer and after 2 years it was reversed this past January. Luckily the recovery went well and no major issues. My only issue is that my scar hurts. My surgeon told me to use vitamin e to make it softer. Its softer but I still feel pain. Did you notice pain with your scar?
I do still notice pain occasionally at the ostomy site scar, usually when I'm doing something ab intensive like exercising of lifting. If it constantly is in pain I would check with your doctor.
@SurvivorJelena I've checked with my surgeon multiple times, and he said it's normal. He's usually very detailed these past few years, so maybe it's normal? I did try some oil, and it softened the scar, but the pain is still there.
My husband got his reversal on Monday and he is not doing so well. He currently has a nasogastric tube because they say his stomach is asleep and will need to keep it in till he has bowel function
If Id known the professors apprentice was going to stuff up when sealing the colon, I'd never have bothered
My mom is getting ready for an ostomy to as part of process to repair a colon fistula. Do you think that you hated the ileostomy because it was loop? I thought the loop ileostomy have more complications than others but on the other hand, loop have higher chances of reversal success...
I don’t think it was the loop part that bothered me, it was the fact that it was so active all the time which made giving my skin a break and doing bag changes difficult.
How much cm of rectum do you have left ?…I have only 2-3 …so i think i will opt for a permanent stomy instead of the reversal…I’m afraid of the life with that new rectum….
Does it hurt? I going to have mine next month
For me, it definitely wasn’t as painful as the original LAR surgery.
Hi new subscriber I have rectal cancer stage 3 may I ask how big your tumor was at the begining of your journey mine was 2.75 inche long how much did chemo a radiation sheik your tumor pre op thanks for any info
I believe it was about 4” or the size of an apple when I was first diagnosed. Thanks for subscribing! 💙
@@SurvivorJelenaThanks for the reply may I ask how low was it and did it extend into the anal muscles because thats where I'm sitting at
going tthrough this now but to clarify - you are getting another surgery whether or not you reverse the ostomy you're either having reversal surgery, or, if you keep the ostomy, they will need to surgically remove your unused guts (from the large intestines to and including the anus).
Btw I'm Daren 57 y/o m
Good video. I am stage 2 rectal cancer. No bag. No surgery. No chemo. I look forward to 100% quality of life and a quick death in hospice. 55 years on this earth is not bad.
Your cancer is cured right ?
Yes, it’s been 6 years since I finished treatment and I have had no evidence of the disease since then. 🥳
@@SurvivorJelena ohhh yes...awesome 💪. Happy to hear that. Nice 🍻. You are a warrior.
@@SurvivorJelena
Helena, praise G_D! 🎉
❤
I didn't mean to come across rude but every time I want to learn about something I need to know I half to go threw a life story from people the lady who is talking right now is telling me about her stools I know about that I'm living it o just want to know all about reversing it and what is involved that's it so I am going to keep searching until I get there
I had Ulcerative Colitis for many years and and in 2004 I decided it was time to get rid of my Colon. I was asked if I was interested in a J-Pouch or go straight for an Ileostomy. I went for the J-Pouch. After the operation and the J-Pouch was fitted I had to have a Stoma for a few months for things to heal down there, then the Stoma was removed and I was left with my J-Pouch. I had 18 years of no end of problems. Always looking for a toilet, accidents at night when I had no control, the feeling of wanting to go was like contractions and very painful. Well after 18 years I told my Surgeon the J-Pouch had to go. I then went for a 100% Ileostomy with my butt stitched up (Ken butt) and it as been the best thing i could have done and wish I had gone for the Stoma right from the Start. I now have complete control and only change my Stoma Bag twice a week and empty it a few times each day. I am not always looking for a toilet and I will be honest "I LOVE MY STOMA". Regards IGGIE
I’m glad to hear your quality of life has improved so much!
The devil I know the devil I don't know I'm here right now 🥹😏