Good question! Anyone out there sleep on their stomach with an ileostomy? I never did because I didn’t find it comfortable, I just slept on my side or back.
I have. Like Jelena said its not that comfortable though. If you're a stomach sleeper trying curling up with a pillow before you roll on your stomach. That helps pad it some.
I have a pillow on the side of me, I have slept on my stomach to support my stoma with not many problems but I did sleep on my stomach but when the bag got fuller I of course had to empty it
God bless all who have been through this or are going through it now. I was diagnosed with stage 2 colorectal cancer and close to stage 3. I had chemo then radiation followed by illeostomy surgery and reverse ileostomy surgery and thankfully all went well. It wasn’t easy but after a year I am cancer free and have normal bowel movements as well
Thank you for being so very informative. Like you, I'm a Stage 3 Cancer Survivor and I've had an ileostomy for nine months and I'm looking forward to my reversal. You are far more informative than the nurses and doctors are. Thank you so very much! You're doing God's work! 😉
thank you for sharing your journey. Also - for those who read the comments. If you're suffering a bout of diarrhea. stop eating. Skip a few meals and give your digestion a break. then try something to help firm your stools, such as an iron pill (or half! of one to start)
Thanks so much for this video! Nothing like hearing the patients perspective! Im having my stoma reversed in a week and this has helped prepare me mentally! I defeated a terminal ovarian/uterine cancer diagnosis and I wanted to share to anyone who is going though it: be encouraged - use all of your courage and never give up- miracles absolutely happen.
@@frmtx777 I am great, thankyou for asking. Trust me, you will get through it. It certainly does burn though!. The first thing though is that it sounds like your surgery was successful and everything has linked up properly! I just tried to keep everything clean and eat foods that bulked everything...like potatoes etc. You will get there, to the point of normal bowel function. I also used a soothing nappy rash cream to help. But it is one of those situations to stay positive and push through. Do you have follow up appoitnements with your surgeons schedualed? For me the initial week was the worst, and then it became more tolerable. You are doing great, keep going because it all comes good!
@@rebelsal i have an appointment next week. I started eating heavier foods but small meals, if that makes sense. That has reduced my visits to the bathroom and allowed me to sleep through the night. Thanks for the pointer, this is the only the second day but it seems to be working.
Thank you so very very much for this most informative video . Unfortunately it has been my experience that doctors and surgeons do not take the time to to talk to patients about this kind of journey to recover after operations of this sort . I have no idea what to expect . I have just undergone an ileostomy reversal, the surgical sight is frightening to look out as the wound is left open . No doctor has discussed the long term outcome of this surgery and whether or not bowel movement will return to something close to normal . I am in the dark, when i ask questions the answers tend to be short and flippant as if the whole operation and illness was no big deal . Anyway i could go on and on , I just want to thank you for making this video and sharing your experience with us it has helped my understanding a great deal . God bless you and many many thanks . This was so appreciated .
I agree.. I have a for the most part a great doc that has very short answers and says, "well, you know everyone is different" a lot. Lol. So, I've come to youtube many times for more realistic responses.
Very truthful story and I went through very similar surgery but I'm a male. A few things that will help folks going through similar surgery that no one told me about and had to learn myself. I bought a Luxe Bidet Neo 120-self cleaning nozzle- Fresh water non- electric Bidet toilet attachment and mounted it with my round style toilet. I found that a elongated toilet is better for a Bidet and I installed a elongated toilet by myself (That is a game changer for me and cut down on using toilet paper that will make you a little raw with frequent use of toilet paper. Not hard to install either the Bidet or the toilet. Another important tool for incontinent problems is take a generic diarrhea pill if you frequent to often to give yourself a break. I take 1 pill and it gives me 36hrs approx of normal feeling and you can travel and do small jobs with out any major issues. Every one is different but it help me and hopefully other 's. One last tool for the toilet is a squatty potty stool that I was skeptical of one, but it will help also when sitting on the seat and want to get over with quicker and more comfortably, it works. Hope these few learning curve items help those who are going through this change in their life.
Thanks for the tips, Ron. I will be getting my ileostomy reversed shortly and am researching everything I can about life after bag appendage. We have elongated toilets so will purchase a bidet attachment immediately!!!
Thank you so much for this video, I have just been declared cancer free but have to wait until the New Year for my reversal surgery. All though your recovery wasn't easy it has made me aware of what to expect and although it sounds quite scary you came across as so positive I feel I can do this, Thank you again and I hope we can both stay cancer free in the future x
Hi Jelena, I added a comment but somehow, I can’t find it. So I am writing again. There are few things I think worth trying out, I wonder if you tried them already: 1) Probiotic supplements (it restores the natural balance of bacteria in the gut and may reduce the duration and severity of diarrhea episodes.). You can ask your doctor about that 2) Squatty potty (maybe it helps in better emptying your bowel and you don’t have to go many times to toilets) 3) Avoiding Stress, as the release of stress hormones, such as cortisol, can impact the functioning of the gastrointestinal system. 4) Fasting: For me, I stop eating at 5 pm and only drink water till 5:00 am next day. I found that it helped me getting better sleep without having to go many times to toilet in the middle of the night. 5) Keeping a diary of what you are eating. The day before and the day you are having hard time. maybe you can spot something that increase the bowel movement that you had the day before. 6) Avoid processed food, sugar, caffeine, Alcohol, check how that pay back for better bowel movement
I had my ileostomy reversal on July 7, 2021… everything you described is what I experienced, it’s comforting to have seen this from a survivor and relevant person of this disease. Thank you so much for this. I’m in the middle of the recovery process but needed to hear this !
Thank you for being so candid with your experience. I am currently in the hospital after my reversal and I am stressing over what to expect next. Your video was very insightful and informative.
DON'T EXPECT TO MUCH OR BEING BACK TO NORMAL IN A SHORT TIME SPAN. I'm a year out from my reversal and an still not back to normality but am getting there.
I had familial adenomatous polyposis syndrome. I was diagnosed at 23 years of age, I'm still 23. They found over 2000 polyps all throughout my colon and rectum. They were all precancerous thank God, so they then go in and remove my entire colon and 95% of my rectum. I'm a week in to my reversal and had no idea how bad the recovery would be, but I'm glad I came across this video so I know what to expect for the next few months during my healing time. Thanks for the information!👍
I have the same thing at the age of 38 FAP😢. Surgery is not week. Sooo scared and hate the idea of the bag and that it may not be removed. I hope you are well.
My son has FAP and diagnosed with colorectal cancer last year. Finished chemo (8 rounds) and we are skeptical about the reversal from his surgery....do not know the outcome? Can someone help? He is just 24 years old....wants to start work.
Hello Jelena and other survivors. I had my reversal surgery Monday 12/14/2020, so far my experiences are about 100% the same. It's good know it will get better.
You are adorable. Thank you for sharing such personal information in such a refreshing and light hearted way. Bless you. I know this will help hundreds of people deal with this situation.
My husband had his reversal a week ago tomorrow. So right now he’s running to the bathroom a lot! I feel soo bad for him. Your video has really helped, but at this point he sees no light at the end of the tunnel. I keep telling him it’s just been a week.
It’s so miserable those first few weeks and when you’re going to the bathroom so many times a day it’s mentally tough to imagine how you’re even going to make it through one more day. Maybe keep track of the number of times a day he’s going then even a small improvement in the numbers could show him that it is slowly getting better and give him a little hope. 💙
For any other person that has endured what you've gone through, this video will certainly be the perfect guide to help them along the way. Your video (s) are straight forward, nothing left out and all in chapters. It couldn't get any than that. Thanks for sharing your story. Mine, however, is just about to start but it doesn't concern the colon but rather the liver. I have Cholangiocarcinoma aka bile duct cancer and I happened to run across your chemotherapy videos and I got a lot of good info from that. I also have to go through targeted radioactive seeds that is supposedly supposed to fry any veins feeding the tumor directly cutting off blood supply and oxygen causing the tumor to die. The chemo is for systemic purposes and for further reduction of my tumor size. I don't have any fear about going through this. I just know it has to be done. If I get the desired results of tumor shrinkage, I can then have the tumor surgically removed. That is basically my story but I'm 65 almost 66 and you are way too young. I'm glad they caught your cancer before it turned into stage 4. I had a younger brother who had stage 4 colon cancer but it eventually metastasized to other organs which caused him to pass away at age 55. My message to the healthcare system is to start doing colonoscopies at 5 year intervals starting at age 30 and the same thing for liver/pancreatic cancers. The kind of cancer I have is usually detected by accident. For me it was an ultrasound of my entire chest area do to elevated liver enzymes. By the time they discovered it, the tumor was the size of a grapefruit and has affected both lobes of my liver. I'll try to fight my battle with cancer hopefully as brave as you did. I just retired and this is hard news for my wife to take. I worry more about her because what I have is sixth on the list of the worst cancers one can get. Only 1,000 people in the USA are diagnosed with bile duct cancer of the liver each year. That is how rare and deadly this is. Perhaps, after I'm long gone, they will have a cure for most if not all cancers. Medicine has gone far in such a short period of time over the last 150 years. Thank you for putting on a brave face while serving the TH-cam community. You put such a positive light on what you went through. Again, my heartfelt thanks.
Thank you so much for the kind words and for sharing your story. I’m so sorry to hear about your brother. I hope your treatment works well without too harsh of side effects so you can enjoy your retirement with your wife 💙
My Reversal is schedule for the 22nd of this month ! I had an barium enema before my surgery and all I can say is, it’s the most uncomfortable feeling and hope I ever go through that again. I’m a little anxious but more relieved bc of this video thank you !
I gave most of my best advice in the video, but I would say to mentally prepare yourself to be very patient and be ready to spend a lot of time in the bathroom for a few weeks. If you have more than one where you live, designate one as yours and get it all clean and have your supplies ready in there for when you get home from the hospital. Have a pack of diapers on hand and as soon as you have your first bowel movement start slathering your butt with a diaper rash cream.
Thank you for posting this! Even after 3 years, it's helpful as I'm also going through stage 3 rectal cancer. I currently have the ileostomy and am scheduled to get the gastrografin enema. I was searching online to see what to expect and came across your video! Super helpful to understand what to expect for the remainder of my journey. Thank you!
Stage 4 rectal cancer that metastasis to the liver. As for now tumor and cancer free. Getting my ileostomy reversed Monday 🙌. Had 1/2 my liver removed, 16 inches of rectum removed. Thanks for sharing. I’m very anxious for the surgery
Hello! Thank you for this video. I had a loop ileostomy done due to SEVERE crohns. I like a fool ignored and never took care of my crohns for yrs. It got out of hand when I got an abscess on my lower intestine and it didnt get better with antibiotics and they had to clean up everything. I am still attached to my rectum. I had an ileocecectomy of the right colon done (terminal illeum was removed). I had this surgery done on 9/27/23 and I am scheduled for reversal on 12/20/23. I am so excited for the reversal bc this bag is annoying and bothersome. Thank you for letting me know what to expect post surgery. Thank you for all the great info!
Completely know that feeling myself! I’m in the same boat however, my doctors ignored my symptoms till I got an emergency surgery for my abscess and ileostomy of my ileum. You aren’t alone on the recovery process!
@@musicizm88 Hello It’ has been really difficult for me everyone has a different recovery BUT I can say that you are still early it will take you more then 3 months before you see a bit of change you must use a lot of Meta Mucil at least 33 grams a day to bulk up your stool . I use a Aloe Veta Cream to help with the burning, get your self a bidet bro it will help a lot . It will take up to a year to feel more better Dr notes, they have told me I’m 6 months in and at least now I have 1 to 3 days ok and 2 bad days in the toilet all day it is a bad process I wish the best and hope for a quicker recovery But man it is not easy God bless
Thank you from Malaysia! Just had my ileostomy reversal, and this is so reassuring. Really appreciate you being so open and detailed about the recovery process.
Hello! I love that you're watching halfway around the world from me! It is a TOUGH process, but I hope that knowing what it was like for others helps make it a little easier. Best wishes as you recover 💙
I hope you are well. And Hubby and your daughter too. I had a loop ilostomy reversal in February. Took a few weeks for my bowel to wake up. Had some runny poo for a few days, then things settled down. Up to now I've had a decent bowl movement routine. Although occasionally painful stomach cramps. And my stomach rumbling could wake up the dead sometimes. But other then that it's 85% good news. Much better then I expected. Things will never be the same again, but I'm free of the stoma and TPN. Thank you for telling us your story.❤️❤️❤️
One of my relative had gone through this stoma reversal surgery 10 month back..initial days were more painfull due to frequent motion passing diaheria and anal fisser which caused due to uncontrollable bowel movement..Now things are much better than before...I agree things won't be same as she had before. But still it's causing issue as she is a working lady have to go out for her daily chore. Now in a whole day ..if she does once in morning and night .but in. Afternoon she goes many times continuously as like said in above video ..which made her feel exhausted tired and sad. Immodium she is taking but that is not a permanent solution and should not take daily..any suggestions you can give how to control it in natural way..what medication usually the doctor in your country suggest in this type of cases as sn average...
@@SurvivorJelena my relative took immodium only when she had to travel long and it restrict bowel movement also..but now doctor advised to take immodium on regular basis for few days if unable to control motion passing..can you tell about ur experience on immodium taking on regular basic? Won't it cause constipation ? And harm body? Any natural remedies they prescribe?
@ANANYA RAY - my doctor recommended I take psyllium husk in the morning, then an Imodium in the morning and another in the evening. I’ve been taking them daily for 3 years now and I usually don’t get constipated. If I do I just skip the evening Imodium and things are ok after that. I need to see if there is anything I can do to not rely on these medications.
I really enjoy your videos. While I am not a cancer survivor I do enjoy learning and listening to the plight of others. I want to be a more empathic and kind human being. Thank you for sharing your story. Both of my parents are cancer survivors. Much love to you and your family 🤗❤️
I just had cancer surgery for ovarian cancer that had also spread to my colon - the ileostomy bag and the tumours being on the colon was a complete surprise to everyone especially me. I have struggled SO hard with the ileostomy. I hope my reversal can happen as soon as possible, this was a very informational video for us. Thank you.
Just so you know, you're not alone. It genuinely helps to vent otherwise it will consume you. My ileostomy was supposed to be temporary and then my surgeon said it would "more likely than not" be permanent. Long story short, I'm finally having reversal surgery tomorrow morning after five years. Never give up hope.
Hello Jelena my name ia Adrian from the UK I sympathise with you completely, after my reversal for Lars which left me with hardly any rectum and nearly all my sigmoid taken out I had the most painful butt which then develop a anal fissure. I was in so much pain I would shout for my mum but she had passed 4 yrs previously. To cut a long story short I discovered the sitz bath and coconut oil, the tide turned that day and just progressed so quickly I am now at 3 yrs since and from 40 a day to about 6. All the best Adrian.
This has been very informative, my daughter has stage 3 rectal cancer she will start radiation and chemo next week. Surgery is going to be a few months out. I'm praying 🙏 that a reversal will be possible. Thank you so much for sharing your story.
I will get reversal in three months hopefully, had the LAR surgery Thursday Surgery was successful cancer left was removed I have the illlestoomy learning to get adjusted with it but grateful im alive your videos helped so much .
Bless you for your open and candid overview. Your journey is very helpful to understand. Your upbeat review is psychologically very helpful. Wishing you a successful long-term recovery...
It helps to know that someone else has experienced the same thing that I have so to hear that the same effects are happening/have happened shows me it's possible to get through the process and it's normal for these things to happen. You're very informative and raw with this video which is needed for a clear understanding. I appreciate you. I just had my reversal surgery 4 days ago so you already know 😂. We are blessed with being gable to make it thro these stages. Thanks Again for not being ashamed.
You're welcome! So many others helped me out while I was going through this, so I know how helpful it is knowing what to expect as far as the good AND the bad. I hope things are looking up for you.
I had a ilsecomy bag for about a year. I was diagnosed with diverticulitis and fistula on my bladder. I was in hospital for a total of six weeks. I had 3 surgeries. I became sepsis and my gallbladder was shutting down. I finally went home but I had several drain tubes including a ilsecomy bag. I had my ilsecomy reversal last April then it was wound care. I'm doing a lot better now. But it was a journey to get here. I appreciate your advice and videos. They have been very helpful. God bless you. Keep up the good work. 😊👍🙏
@@SurvivorJelena thank you. I wish you good health as well. I have a obstacle I been diagnosed with prostate cancer I'm under doctor care active surveillance also had several biopsy done too. God bless you
Same boat as you, Dr told me I could eat anything, but in small portion. I didn't listen and ate large meals to gain weight after a few weeks, went about 7-10 times for a few months. Started to get better afterwards. One banana per day, Vitamin B, Mg and Ca is a big help, I was having incontinence until I started to take these. Dr prescribed Maybeverine Hydrochloride (Duspatalin) for burning butt and was a game changer around 3 weeks after surgery. Took pills daily for one week, then one per week, but now I just keep a few for emergency but haven't needed it for a long time. Had reversal in 2019 June. Just saw your video, would have been useful to compare notes when the going was tough. My tip is not to follow what I did but have 3-4 small meals.
THANK YOU for posting this video. I was diagnosed with stage 3c colorectal cancer on 11/22/2022. For me, there was an immediate surgery to remove the tumor from the sigmoid colon (connected directly to the rectum) and provide a colonostomy. Since then, I did the 6-month of chemotherapy followed by 5 weeks of chemoradiation. Last week, I started my journey back. On 9/22/23, I had the colon reconnected to the rectum and diverted the ileum out of the same stoma hole. Sometime in November I will do the enema test again -which was very unpleasant -but you nailed down the explanation to a tee! Lastly, I have full reconnection. Your video provided me with a lot of hope and insights as to recovery time and suggestions like the low fiber diet to ease back to "normal". Super helpful video that gave me hope at a time I feel pretty down.
You’re welcome💙 I’m so happy to hear my video helped prepare you so well for what was to come and my experience was very similar to yours. Wishing you the best.
Thank you Jelena for this and other videos you have made, I am having my ileostomy reversed tomorrow. Was diagnosed with stage 2 colorectal cancer had LAR surgery radiation and chemo as well. I'm glad that you are doing ok.
I have to thank you so much for your straight forward, honest, common sense information in all your videos,,,I am having LAR sugery along with a full hysterectomy at the end of the month for stage 3 rectal cancer...I waited too long due mostly to embarrassment about talking about POOP. Since I have found out I have cancer, I have come to realize EVERYONE POOPS. There's nothing to be embarrassed about talking about it---in the right places and times of course---nobody wants to talk about poop at a fancy dinner 😜 Your videos were a HUGE help. I've seen so many videos from people with UC or Crohns, but not so many with cancer, and it's a POV that is extremely important when you have cancer, so thanks again!
Hi Jelena, You are really an angel, your post really helped me alot. I got my reversal 8 days ago and i am still in the same recovery process you described. But at least i am prepared thanks to your video.
Great video. My bfriend has his ileostomy reversal surgery next Monday. He had sigmoid resection and also had ischemic descending colon. Cancer free now
Thank you so much for the video. I can't wait fir my illiostomy closure. I'm currently on chemo for colon cancer and I just gave 3 treatments to go. Your a real champ n an inspiration.
Thank you so much for your help my father is going to have his ileostomy Reversed in a couple days and there isn’t any other videos like your to help me. I’ve been watching your videos since my Dad got diagnosed with cancer I really appreciate everything you do. You are a miracle!
you are a warrior, that's the way to fight a horrifying experience that would put the test to anyone's mentally, i don't think i could do it the same, i hope you will keep pushing forward and don't take no for an answer
I just had my reversal on January 3, 2023. I am still learning about my bowel and diet, and I am so glad I found your VDOs. I lost 40 lbs since I was diagnosed with rectal cancer, and I am very nervous about losing so much weight. I am 82 lbs now and wondering if you could please give me some diet advice.
I’m not a nutritionist so I can’t give much good advice on diet other than to try to add as many calories as you can to any food you eat. I would add high calorie protein powders to almond milk for a smoothie when I didn’t have an appetite. Be generous with butter, peanut butter, and carbs. Also talk with your oncologist to see if they can help and/or refer you to a dietician that could help further. Good luck 💙
Thank you, thank you, thank you for doing these videos 👏 I had stage 3 rectal cancer and had LAR surgery in January 2022. I'm having reversal 28th October 2022 and I'm dreading the aftermath, however your video has given me hope! I did read on another forum that doing pelvic floor exercises before the reversal can help so I've been doing those every day. Thank you so much for all the tips and here's hoping I'll have a successful reversal 🤞🤞
You’re so welcome! I’d love to hear back from you a few weeks after your reversal to hear if the pelvic floor therapy helped make things a little better after the reversal. I hope your reversal goes smoothly 🤞🏼💙
@@nigaraltowheed379 my reversal was successful to a point but I was left with bouts of in incontinence, I now have a permanent stoma and life 8s great 👍🙂
Thank you for this video. It takes a lot to put your personal life out there. I don't think I could do it. I'm slightly less than 2 weeks after my reversal. This has been such a difficult process. Only God is getting me through this.
thank you for all of your valuable information. it must've taken tremendous courage to revisit these issues and 'put them out there'. and i thank you for these videos which are undoubtedly the most precious tools for my reversal. i am more aware of what to expect and how to succeed through the entire process from prep, to admissions, and through the recovery. imagining the process was vague and nebulous; now i see success because you have taught so much. thank you so very much. ✌🏼
I want to thank you for this video, I will be habing my revers surgery next week on Thursday, September 15/2022. Unfortunately doctor and nurses haven say almost anything about what is going to happen to me after surgery and because you know anything you don't know What to ask for. Now I know that I have to be prepare and going to bring diapers and cream, thanks to you now I know how the poop process can be. In my case the doctor said that at least the first week I need to eat a very low fiber diet but now that I have your information I going to ask more about that. Thank you, thank you. Hope everything with you is good and wish you the best Im also a cancer survivor (Breast) God bless you.
The low fiber diet is what’s most commonly recommended after a reversal, so I think that’ll be ok for you. I hope it goes well and I’m happy to help you be better prepared 😀💙
So inspirational and very helpful video after one month my brother has this ileostomy reversal but he is afraid of it because he is upset that how will he go to washroom after surgery and how the things will go but i will definitely show him this video you are inspiration for many of cancer patients more power to you🙌🏼
And pls let me know that what do for rectal discharge ( mucus) before reversal because my brother is very upset because of this discharge because as he walk the leakage starts
I was able to hold it and let it out on the toilet. If he is having troubles holding it in, he should ask about pelvic floor therapy. That will help him strengthen the muscles so he can hold it in and could help with control after his reversal.
Helena, this is so good. I feel like there’s limited videos out there about this. I wish I had found more videos back in early 2019 about the Ileostomy take down surgery. Our experiences were very similar, so glad you’re sharing your story. I’m sure this is helping so many people going through the same thing!
I feel bad for anyone with scars that bother them. I relate to your feeling that "it looks like lips on my chest" (it doesn't! I hope it's gotten even better now. At least it's in a discreet place, relatively. It certainly went down a lot from the beginning! I know camera might not show it clearly, but it doesn't look like much. Plus you can say you beat cancer more or less, so that's cool! Myself I had a colostomy reversal combined with a hernia repair, about 7 weeks ago. The hernia area looked almost as big as it did before, so I'm pretty bummed out. To me it looks like Elephant Man is residing on my stomach! A truncated trunk, hanging slightly over the half-dollar-size stoma wound, all kind of wrinkly.. The nurse, PA and hernia surgeon all said it would flatten out more in the weeks to come ("give it three months; then if you're still not satisfied we'll hook you up with a plastic surgeon": whatev's, I'm not the type to expect savior-ship from plastic surgeon's. I thought they could maybe have coaxed it into a better shape (they put surgical glue all over the dang thing..) or tightened the mesh more over the hernia - but Hernia Doc said the mesh goes under the abdominal wall: I still don't get it, have to ask him again. Sort of moot now anyhow. I shouldn't spoken Before the procedures; I'm so passive and also alone..
Jelena.. Thank you so much for this video, its exactly what I was looking for. You are an Angel from Heaven. I have my Ileostomy reversal in London, England on 17 November 2021. So much of what you went through pre-reversal is what I have experienced. I was diagnosed with stage 2 Rectal Cancer. I cant wait for my reversal operation and seeing this video has helped me beyond words. Ray.
@@SurvivorJelena hi. Asked surgeon. The only answer he could give me was my number was pulled and it could happen to anyone. No real reàson. Just happened. Blessing is it should have killed me but it didn't.
Wow amazing, I stumbled to ur channel really wanting to see what to expect for a flex sigmoid while having an ileiostomy-candidate for reversal; therefore my Surgeon has ordered flex sigmoid… I am so thankful for “accidentally “ coming across ur channel!! Major help, luv u girl!
I take two Imodium tablets each day. Without Imodium I would constantly have diarrhea. I was also taking Metamucil but stopped since it seemed to aggravate the diarrhea. People can have a temporary ileostomy for a variety of reasons. In my case, like Jelena, I had an LAR procedure due to rectal cancer. There is some called LAR syndrome, which about 60% of LAR patients have. Usual symptoms are frequency and urgency. Diarrhea. Constipation. Incontinence. This has nothing to do with the ileostomy or reversal. More frequently associated with radiation treatment and rectal surgery. Something to discuss with your surgeon. There are also physical therapists who specialize in pelvic floor rehabilitation which can help to recondition the muscles that control your bowel movements and anal sphincter control.
first. ..thank you🧡🙏 my name is nancy i live in orlando and i will going to have my GGE so then my closure ileost. and you help me a lot thank you so much God bless you always..in a little scare😢
Great information!! my reversal surgery is a month away so this helps me so much..i feel pretty informative now.. thank you for this video, you are helping so many people prepare for whats to come...
@@SurvivorJelena thanks. They did that scope last week to see if anything was leaking, everything turned out to be good but wow that was painful. If they gave me the option of being knocked out for this procedure I would choose that knowing what I know now.
@@SurvivorJelena just thought I would update anyone who cares. Reversal went good and pain wasn’t nearly as bad as the first operation. I had my first bowel movement with gas tonight so I am hoping to be sent hone tomorrow. Thanks again for your channel
Thank you so much for documenting your cancer journey! I was diagnosed in September 2020 with stage 3 Rectal Cancer and have found your videos priceless. Cancer is scary enough, but more so when everything is unknown. You gave me the gift of knowledge which has made my journey a little more manageable. I completed my radiation treatment with oral chemo and had my LAR and ileostomy surgery. I get my chemo port installed on Thursday and then start my chemo next week. My only question is, how long was your hospital stay for your Ileostomy Reversal surgery?
Sorry to hear about your diagnosis, but I’m happy to hear that my videos have helped you through this difficult time. I was in the hospital only 2-3 days for my reversal surgery. I had no complications and wanted to get out of there as fast as I could!
This is absolutely wonderful Thank you so much for your kindness. I am going in for a reversal next week . I am so grateful of what I might expect. You are a beacon of light !
Thank you for sharing this. I just had my reversal almost two weeks ago and I'm dealing with a whole lot of issues but I'm learning the best way I can. Good bless you
Thanks for this video! I will have my reversal on November 18th, almost a year since having it done. I’m nervous and excited. Medical doctors aren’t the best when it comes to diet and nutrition information. I am seeing a naturopathic doctor next week to help prepare me and for help afterwards to get back to normal. Not looking forward to having a burning butt. 😂
Excellent presentation! I'm day 2 after my reversal and you sure helped me to know what may lie ahead for me and how to work thru any uncomfortable situations. Thank you so much..
You have overwhelming helped so much in what to expect, and prepare supplies. I just completed the gastrogafin test and just as you described. Not bad at all compared to the horror stories out on Facebook pages.
@@nesarajahlaennin7702 Today marked 6 weeks and I returned to work. My recovery went well. The tip about the diaper rash cream definitely helped. I also soaked pretty much everyday in the beginning to give my bum some relief. The first 2 weeks were the hardest, but I've recovered quite well. Thanks for asking.
I did the enema test today Jelena very painful Jalena, I have to go see surgeon in two weeks for another test similar to colonoscopy I will be sleep for this one, great news no leaks for the test today, but mild diverticulitis pray that I will be scheduled for reversal very soon.
I don’t have anything related to this but was just curious and wanted to learn about it, I have to say that you were amazing on how you explains every detail. I watched the entire video, and congratulations on what you have accomplished!!
Love this! 💙 My goal is to make my explanations easy to understand, so if someone that doesn’t have anything related to this can understand it that must mean I’ve done my job 😀 I’m happy to hear you watched the full video too!
Your videos helped me so much I just turned 40 and had staged one rectal cancer I had lar surgery and looking forward to reversal in February you gave me hope I can deal with the new normal I was so fortunate that it wasn’t In my lymph nodes i was pretty fit and hiked a lot this was a really hard surgery to go thru I’m so happy to know u are doing good
I really hope so man I’m ready for that reversal but I’m thankful for bag too gonna stick to low fiber for few weeks and do the Metamucil u gave excellent tips I had a low rectal cancer it was lower than they thought on X-ray so I have only small amount of rectum left it’s all been so scary I was healthy up until this never had any health issue only symptom was little blood in toilet I had an unbelievable doctor I was so close to permanent bag what a journey this has been I have been so fortunate to have such a amazing husband to help me I walked 4 miles today u gave me hope like u wouldn’t believe I can get thru this your a righteous lady
Hi Ashley I was diagnosed Anal cancer 2019 stage 2 it just started in Lymp node in groin . I'm all clear now after Chemo & radiotherapy it was hard at first. I am going for reversal end of june as 18mnths clear had very good response from treatment Li don't smoke or drink im 55 very anxious but know I have to go forward. Keep positive I do and trust in my faith..
@@valsmith2820 u definitely have to have faith Val I have been on a roller coaster ride ever since they told me I had the big C but we are definitely not alone in this I am finally getting my reversal this week only one more day of this bag I have had it 6 months kept thinking I was getting it off but I had complications a stricture I hope u get your reversal soon and everything goes good for u I’ll let yall know how my reversal goes 💕 to u Val
omg thank you so much for this video. I am now a week since I had my reversal surgery and been having rough trips in and out of bathroom. Your story has encouraged me and to know that things will get better.
I am a 8 year cancer survivor had first surgery for the tumor on July 7th 2016 had ilyosconpy for 11 months reversal June 5th 2017 doing fine so far. I know what you are talking about..
Thanks for sharing this. Im hoping for my ileostomy reversal later this year, but whilst I'm excited to hopefully get back to some normality, I'm also dreading it.
need to chime in and say...even if you don't suffer from CRC your videos provide a whole bunch of other very useful information to us viewers. I might actually get over a lifetime of "prudishness" about normal bodily functions. Just need to watch a few more of your videos. Thank you
If you dont mind me asking, how was it painful for you? The worst for me was when I had a long incision in my abdomen to get the stoma which made walking impossible for a few days post surgery because the pain was horrific. After that it was just mildly sore for a few weeks. Is there something different when it comes to reversal?
Just got my reversal done last Monday. I can barely lift my right leg or move. I'm ok when I'm standing, but getting into a sitting position or going into a sitting position is excruciating! That includes getting and out of a normal bed. That's the only thing I miss about the hospital bed. And being able to position it for comfort and ease of movement. Walking is difficult and I live on the top floor of a 3 story walk up. I want to mention that I can't stand up straight either. I'm very hunched over. Did it get any easier for you?
I had anal cancer. Had an illeostomy for three months. I was so sick I had a terrible time with the bag. At the time I had cancer, they would cut the muscle. They no longer due surgery just chemo and radiation. Once the muscle is cut, you pretty much require an ostomy for life. Well I practically live on anti diarrhea pills now and go back and forth as to whether to go back to an ostomy! My surgery was 17 yrs ago before doctors stopped doing surgery for this cancer!
Congratulations on making it this far after your cancer diagnosis. The decision to go back to an ostomy is a big one, definitely requires a conversation with your doctor.
I nust had my reversal 4 days ago.im still in the hospital. Thank you for your brilliant video. It was VERY imfotmarive. May i pose questions to you? Youre awesome!! My hero!
Sorry I just saw your comment...it got held for review by TH-cam because there wasn’t a space after the first period and it thought you were trying to spam with a website. I sure hope you’re home now from your reversal surgery. 🤞🏼💙 You’re more than welcome to ask a question if you still have it.
Hi jalena,my name is rich and I had a resection at my rectum from stage 3 cancer. I had the robotic surgery and was wondering why they did such a big inscision
So awesome thank You for Your honesty I just went thru same procedure Your video explained to Me more than anyone ,That chap hide hurts i just jump shower getting a bidet !! God bless !!
Great video, Very informative. I've had my ileostomy now for 10 month and I cant wait to get rid of the bag. Thank you for providing the information. NOW I know what awaits me. While having the ileostomy at any point did you have any discharge through your butt? This is also a question for the group. I've had several, even months after the surgery. My surgeon explained that at the beginning I would have some residual discharge but it should stop. Its been happening periodically, once or twice a month. NOT sure if this is normal. I also don't want to deal with the surgeons that worked on me originally. Marc below explained it best. No surgeon, or nurse ever provided any valuable information as to what to expect, how to put a bag on, how to keep it on what you need to do keep it on. They sent me a box full of supplies with "0" instructions. Thanks to the ileostomy community here on TH-cam I've learned what works, what doesn't and what todo in the event of a leak. Let me digress . Thank you for providing the video and sharing your experience.
Yes, having a little discharge every now and then from your butt is perfectly normal, and is actually good because it shows your colon is still working even though no food is passing through it. I agree that the TH-cam ostomy community is so helpful! Dealing with your ostomy is a mastered skill and you can’t learn it all at the hospital.
Is it possible to sleep on your stomach with an ileostomy?
Good question! Anyone out there sleep on their stomach with an ileostomy? I never did because I didn’t find it comfortable, I just slept on my side or back.
I have. Like Jelena said its not that comfortable though. If you're a stomach sleeper trying curling up with a pillow before you roll on your stomach. That helps pad it some.
@@lauratownley5795 Thanks, Laura! Good idea.
Thank you so much for chiming in Laura!
I have a pillow on the side of me, I have slept on my stomach to support my stoma with not many problems but I did sleep on my stomach but when the bag got fuller I of course had to empty it
God bless all who have been through this or are going through it now. I was diagnosed with stage 2 colorectal cancer and close to stage 3. I had chemo then radiation followed by illeostomy surgery and reverse ileostomy surgery and thankfully all went well. It wasn’t easy but after a year I am cancer free and have normal bowel movements as well
Such good news...hoping for the same outcome...in Jesus name, AMEN❤
Thank you for being so very informative. Like you, I'm a Stage 3 Cancer Survivor and I've had an ileostomy for nine months and I'm looking forward to my reversal. You are far more informative than the nurses and doctors are. Thank you so very much! You're doing God's work! 😉
thank you for sharing your journey. Also - for those who read the comments. If you're suffering a bout of diarrhea. stop eating. Skip a few meals and give your digestion a break. then try something to help firm your stools, such as an iron pill (or half! of one to start)
Thanks so much for this video! Nothing like hearing the patients perspective! Im having my stoma reversed in a week and this has helped prepare me mentally! I defeated a terminal ovarian/uterine cancer diagnosis and I wanted to share to anyone who is going though it: be encouraged - use all of your courage and never give up- miracles absolutely happen.
Congratulations on defying the odds! Wishing you the best on your reversal surgery.
@@SurvivorJelena Thanks! Already stocking up on lady nappy pants lol - now there is a sentence I never thought Id ever say hahaha
@@rebelsal Sally, how are you doing now? I just had my reversal and holy-marry-mother of God this burns. Any words of wisdom would be great!
@@frmtx777 I am great, thankyou for asking. Trust me, you will get through it. It certainly does burn though!. The first thing though is that it sounds like your surgery was successful and everything has linked up properly! I just tried to keep everything clean and eat foods that bulked everything...like potatoes etc. You will get there, to the point of normal bowel function. I also used a soothing nappy rash cream to help. But it is one of those situations to stay positive and push through. Do you have follow up appoitnements with your surgeons schedualed? For me the initial week was the worst, and then it became more tolerable. You are doing great, keep going because it all comes good!
@@rebelsal i have an appointment next week. I started eating heavier foods but small meals, if that makes sense. That has reduced my visits to the bathroom and allowed me to sleep through the night. Thanks for the pointer, this is the only the second day but it seems to be working.
Thank you so very very much for this most informative video . Unfortunately it has been my experience that doctors and surgeons do not take the time to to talk to patients about this kind of journey to recover after operations of this sort . I have no idea what to expect . I have just undergone an ileostomy reversal, the surgical sight is frightening to look out as the wound is left open . No doctor has discussed the long term outcome of this surgery and whether or not bowel movement will return to something close to normal . I am in the dark, when i ask questions the answers tend to be short and flippant as if the whole operation and illness was no big deal . Anyway i could go on and on , I just want to thank you for making this video and sharing your experience with us it has helped my understanding a great deal . God bless you and many many thanks . This was so appreciated .
I agree.. I have a for the most part a great doc that has very short answers and says, "well, you know everyone is different" a lot. Lol.
So, I've come to youtube many times for more realistic responses.
I'm about to get my reversal done. Hopefully SOON! 😁
As one cancer survivor to another I love you and celebrate the victory.
Lots of love to you and your family
Thank you 💙
Very truthful story and I went through very similar surgery but I'm a male. A few things that will help folks going through similar surgery that no one told me about and had to learn myself. I bought a Luxe Bidet Neo 120-self cleaning nozzle- Fresh water non- electric Bidet toilet attachment and mounted it with my round style toilet. I found that a elongated toilet is better for a Bidet and I installed a elongated toilet by myself (That is a game changer for me and cut down on using toilet paper that will make you a little raw with frequent use of toilet paper. Not hard to install either the Bidet or the toilet. Another important tool for incontinent problems is take a generic diarrhea pill if you frequent to often to give yourself a break. I take 1 pill and it gives me 36hrs approx of normal feeling and you can travel and do small jobs with out any major issues. Every one is different but it help me and hopefully other 's. One last tool for the toilet is a squatty potty stool that I was skeptical of one, but it will help also when sitting on the seat and want to get over with quicker and more comfortably, it works. Hope these few learning curve items help those who are going through this change in their life.
Great tips!
Thanks for making me aware on this as having reversal end of june I will make sure I have some medication on me.
Thanks for the tips, Ron. I will be getting my ileostomy reversed shortly and am researching everything I can about life after bag appendage. We have elongated toilets so will purchase a bidet attachment immediately!!!
Thank you for making this video, 3 years ago and it is still important today.
Thank you so much for this video, I have just been declared cancer free but have to wait until the New Year for my reversal surgery. All though your recovery wasn't easy it has made me aware of what to expect and although it sounds quite scary you came across as so positive I feel I can do this, Thank you again and I hope we can both stay cancer free in the future x
Congratulations on getting to cancer-free! 🎉 I like to tried to be prepared for the worst so then anything better than that I was happy with.
Hi Jelena, I added a comment but somehow, I can’t find it. So I am writing again. There are few things I think worth trying out, I wonder if you tried them already:
1) Probiotic supplements (it restores the natural balance of bacteria in the gut and may reduce the duration and severity of diarrhea episodes.). You can ask your doctor about that
2) Squatty potty (maybe it helps in better emptying your bowel and you don’t have to go many times to toilets)
3) Avoiding Stress, as the release of stress hormones, such as cortisol, can impact the functioning of the gastrointestinal system.
4) Fasting: For me, I stop eating at 5 pm and only drink water till 5:00 am next day. I found that it helped me getting better sleep without having to go many times to toilet in the middle of the night.
5) Keeping a diary of what you are eating. The day before and the day you are having hard time. maybe you can spot something that increase the bowel movement that you had the day before.
6) Avoid processed food, sugar, caffeine, Alcohol, check how that pay back for better bowel movement
I had my ileostomy reversal on July 7, 2021… everything you described is what I experienced, it’s comforting to have seen this from a survivor and relevant person of this disease. Thank you so much for this. I’m in the middle of the recovery process but needed to hear this !
Happy to help you feel like you aren’t the only one going through this. Hope things improve even more for you soon 🤞🏼💙
Thank you for being so candid with your experience. I am currently in the hospital after my reversal and I am stressing over what to expect next. Your video was very insightful and informative.
You’re welcome. I hope you get to go home soon.
DON'T EXPECT TO MUCH OR BEING BACK TO NORMAL IN A SHORT TIME SPAN. I'm a year out from my reversal and an still not back to normality but am getting there.
I had familial adenomatous polyposis syndrome. I was diagnosed at 23 years of age, I'm still 23. They found over 2000 polyps all throughout my colon and rectum. They were all precancerous thank God, so they then go in and remove my entire colon and 95% of my rectum. I'm a week in to my reversal and had no idea how bad the recovery would be, but I'm glad I came across this video so I know what to expect for the next few months during my healing time. Thanks for the information!👍
You’re welcome 💙
I have the same thing at the age of 38 FAP😢. Surgery is not week. Sooo scared and hate the idea of the bag and that it may not be removed. I hope you are well.
My son has FAP and diagnosed with colorectal cancer last year. Finished chemo (8 rounds) and we are skeptical about the reversal from his surgery....do not know the outcome? Can someone help? He is just 24 years old....wants to start work.
Hello Jelena and other survivors. I had my reversal surgery Monday 12/14/2020, so far my experiences are about 100% the same. It's good know it will get better.
Hang in there. I hope you start to see some improvement soon 🤞🏼💙
Go David! 2021 is gonna be a great year for you!
You are adorable. Thank you for sharing such personal information in such a refreshing and light hearted way. Bless you. I know this will help hundreds of people deal with this situation.
Thank you so much!
My husband had his reversal a week ago tomorrow. So right now he’s running to the bathroom a lot! I feel soo bad for him. Your video has really helped, but at this point he sees no light at the end of the tunnel. I keep telling him it’s just been a week.
It’s so miserable those first few weeks and when you’re going to the bathroom so many times a day it’s mentally tough to imagine how you’re even going to make it through one more day. Maybe keep track of the number of times a day he’s going then even a small improvement in the numbers could show him that it is slowly getting better and give him a little hope. 💙
For any other person that has endured what you've gone through, this video will certainly be the perfect guide to help them along the way. Your video (s) are straight forward, nothing left out and all in chapters. It couldn't get any than that. Thanks for sharing your story. Mine, however, is just about to start but it doesn't concern the colon but rather the liver. I have Cholangiocarcinoma aka bile duct cancer and I happened to run across your chemotherapy videos and I got a lot of good info from that. I also have to go through targeted radioactive seeds that is supposedly supposed to fry any veins feeding the tumor directly cutting off blood supply and oxygen causing the tumor to die. The chemo is for systemic purposes and for further reduction of my tumor size. I don't have any fear about going through this. I just know it has to be done. If I get the desired results of tumor shrinkage, I can then have the tumor surgically removed. That is basically my story but I'm 65 almost 66 and you are way too young. I'm glad they caught your cancer before it turned into stage 4. I had a younger brother who had stage 4 colon cancer but it eventually metastasized to other organs which caused him to pass away at age 55. My message to the healthcare system is to start doing colonoscopies at 5 year intervals starting at age 30 and the same thing for liver/pancreatic cancers. The kind of cancer I have is usually detected by accident. For me it was an ultrasound of my entire chest area do to elevated liver enzymes. By the time they discovered it, the tumor was the size of a grapefruit and has affected both lobes of my liver. I'll try to fight my battle with cancer hopefully as brave as you did. I just retired and this is hard news for my wife to take. I worry more about her because what I have is sixth on the list of the worst cancers one can get. Only 1,000 people in the USA are diagnosed with bile duct cancer of the liver each year. That is how rare and deadly this is. Perhaps, after I'm long gone, they will have a cure for most if not all cancers. Medicine has gone far in such a short period of time over the last 150 years. Thank you for putting on a brave face while serving the TH-cam community. You put such a positive light on what you went through. Again, my heartfelt thanks.
Thank you so much for the kind words and for sharing your story. I’m so sorry to hear about your brother. I hope your treatment works well without too harsh of side effects so you can enjoy your retirement with your wife 💙
My Reversal is schedule for the 22nd of this month ! I had an barium enema before my surgery and all I can say is, it’s the most uncomfortable feeling and hope I ever go through that again. I’m a little anxious but more relieved bc of this video thank you !
Uncomfortable for sure! Happy to help calm your nerves a little.
@@SurvivorJelena got any advice for after surgery for recovering if you don’t mind me asking ?
I gave most of my best advice in the video, but I would say to mentally prepare yourself to be very patient and be ready to spend a lot of time in the bathroom for a few weeks. If you have more than one where you live, designate one as yours and get it all clean and have your supplies ready in there for when you get home from the hospital. Have a pack of diapers on hand and as soon as you have your first bowel movement start slathering your butt with a diaper rash cream.
@@SurvivorJelena got it. Thank you very much 🙏🏻
Thank you for posting this! Even after 3 years, it's helpful as I'm also going through stage 3 rectal cancer. I currently have the ileostomy and am scheduled to get the gastrografin enema. I was searching online to see what to expect and came across your video! Super helpful to understand what to expect for the remainder of my journey. Thank you!
You’re welcome! Happy to help you out 💙
Stage 4 rectal cancer that metastasis to the liver. As for now tumor and cancer free. Getting my ileostomy reversed Monday 🙌. Had 1/2 my liver removed, 16 inches of rectum removed. Thanks for sharing. I’m very anxious for the surgery
Best wishes on your surgery tomorrow 🤞🏼. Congrats on making it to cancer free! 🥳
Thank you so much for this video dear .my brother will have his surgery on the 28th of this month 🙏🙏 hope it goes well for him
You’re welcome 💙. I’m glad I got the video out before your brother goes in for his reversal. Hopefully it helps you guys out.
Survivor Jelena yes it did thank you so much 🙏 hope to see you tomorrow live
yeaaaa🙏 thank you are a warrior😇 keep n touch
Hello! Thank you for this video. I had a loop ileostomy done due to SEVERE crohns. I like a fool ignored and never took care of my crohns for yrs. It got out of hand when I got an abscess on my lower intestine and it didnt get better with antibiotics and they had to clean up everything. I am still attached to my rectum. I had an ileocecectomy of the right colon done (terminal illeum was removed). I had this surgery done on 9/27/23 and I am scheduled for reversal on 12/20/23. I am so excited for the reversal bc this bag is annoying and bothersome. Thank you for letting me know what to expect post surgery. Thank you for all the great info!
You're welcome. Wishing you luck on your reversal! 💙
Completely know that feeling myself! I’m in the same boat however, my doctors ignored my symptoms till I got an emergency surgery for my abscess and ileostomy of my ileum. You aren’t alone on the recovery process!
My butt was burning 🔥 for 3 months or more this was and still is difficult to me I’m glad you did much better great video thanks 🙏
How have you been able to deal with this. I’m a month in and I don’t see any change. Lot of liquid lot of burning lot of tlc
@@musicizm88 Hello
It’ has been really difficult for me everyone has a different recovery BUT I can say that you are still early it will take you more then 3 months before you see a bit of change you must use a lot of Meta Mucil at least 33 grams a day to bulk up your stool . I use a Aloe Veta Cream to help with the burning, get your self a bidet bro it will help a lot .
It will take up to a year to feel more better Dr notes, they have told me I’m 6 months in and at least now I have 1 to 3 days ok and 2 bad days in the toilet all day it is a bad process I wish the best and hope for a quicker recovery But man it is not easy God bless
Thank you from Malaysia! Just had my ileostomy reversal, and this is so reassuring. Really appreciate you being so open and detailed about the recovery process.
Hello! I love that you're watching halfway around the world from me! It is a TOUGH process, but I hope that knowing what it was like for others helps make it a little easier. Best wishes as you recover 💙
How re u now. I am having my reversal this Saturday
@@nesarajahlaennin7702 I'm all good! Frequent toilet trips, but A LOT better than having the bag. All the best!
@@nesarajahlaennin7702 dude, God bless you. I'm having mine on Tuesday. We should keep in touch. I would love to know about your journey.
@@nesarajahlaennin7702 how was the reversal
I hope you are well. And Hubby and your daughter too.
I had a loop ilostomy reversal in February. Took a few weeks for my bowel to wake up. Had some runny poo for a few days, then things settled down.
Up to now I've had a decent bowl movement routine. Although occasionally painful stomach cramps. And my stomach rumbling could wake up the dead sometimes. But other then that it's 85% good news. Much better then I expected.
Things will never be the same again, but I'm free of the stoma and TPN.
Thank you for telling us your story.❤️❤️❤️
I’m glad to hear you’re doing so well after your surgery!
@@SurvivorJelena And I hope the good news continues for you too.
One of my relative had gone through this stoma reversal surgery 10 month back..initial days were more painfull due to frequent motion passing diaheria and anal fisser which caused due to uncontrollable bowel movement..Now things are much better than before...I agree things won't be same as she had before. But still it's causing issue as she is a working lady have to go out for her daily chore. Now in a whole day ..if she does once in morning and night .but in. Afternoon she goes many times continuously as like said in above video ..which made her feel exhausted tired and sad. Immodium she is taking but that is not a permanent solution and should not take daily..any suggestions you can give how to control it in natural way..what medication usually the doctor in your country suggest in this type of cases as sn average...
@@SurvivorJelena my relative took immodium only when she had to travel long and it restrict bowel movement also..but now doctor advised to take immodium on regular basis for few days if unable to control motion passing..can you tell about ur experience on immodium taking on regular basic? Won't it cause constipation ? And harm body? Any natural remedies they prescribe?
@ANANYA RAY - my doctor recommended I take psyllium husk in the morning, then an Imodium in the morning and another in the evening. I’ve been taking them daily for 3 years now and I usually don’t get constipated. If I do I just skip the evening Imodium and things are ok after that. I need to see if there is anything I can do to not rely on these medications.
I really enjoy your videos. While I am not a cancer survivor I do enjoy learning and listening to the plight of others. I want to be a more empathic and kind human being. Thank you for sharing your story. Both of my parents are cancer survivors. Much love to you and your family 🤗❤️
Thank you so much. That is so nice of you to learn more about what others are going through 💙
I just had cancer surgery for ovarian cancer that had also spread to my colon - the ileostomy bag and the tumours being on the colon was a complete surprise to everyone especially me. I have struggled SO hard with the ileostomy.
I hope my reversal can happen as soon as possible, this was a very informational video for us. Thank you.
Just so you know, you're not alone. It genuinely helps to vent otherwise it will consume you. My ileostomy was supposed to be temporary and then my surgeon said it would "more likely than not" be permanent. Long story short, I'm finally having reversal surgery tomorrow morning after five years. Never give up hope.
Nightshade, how was the surgery? My husband is having surgery September 15 to reverse an ileostomy.
Hello Jelena my name ia Adrian from the UK I sympathise with you completely, after my reversal for Lars which left me with hardly any rectum and nearly all my sigmoid taken out I had the most painful butt which then develop a anal fissure. I was in so much pain I would shout for my mum but she had passed 4 yrs previously. To cut a long story short I discovered the sitz bath and coconut oil, the tide turned that day and just progressed so quickly I am now at 3 yrs since and from 40 a day to about 6. All the best Adrian.
I’m glad to hear you discovered something to help relieve the pain from the fissure. I’ve heard those are horribly painful. Wishing you the best 💙
This has been very informative, my daughter has stage 3 rectal cancer she will start radiation and chemo next week. Surgery is going to be a few months out. I'm praying 🙏 that a reversal will be possible. Thank you so much for sharing your story.
You’re welcome, happy to help! I hope treatment isn’t too rough for your daughter. 💙
my prays 🙏 for your dear daughter - may God be with her always
I will get reversal in three months hopefully, had the LAR surgery Thursday Surgery was successful cancer left was removed I have the illlestoomy learning to get adjusted with it but grateful im alive your videos helped so much .
Happy to help! Hope your recovery from surgery has been ok 💙
Bless you for your open and candid overview. Your journey is very helpful to understand. Your upbeat review is psychologically very helpful. Wishing you a successful long-term recovery...
It helps to know that someone else has experienced the same thing that I have so to hear that the same effects are happening/have happened shows me it's possible to get through the process and it's normal for these things to happen. You're very informative and raw with this video which is needed for a clear understanding. I appreciate you. I just had my reversal surgery 4 days ago so you already know 😂. We are blessed with being gable to make it thro these stages. Thanks Again for not being ashamed.
You're welcome! So many others helped me out while I was going through this, so I know how helpful it is knowing what to expect as far as the good AND the bad. I hope things are looking up for you.
Thank you for sharing! Now I'll know what to expect when I have my ileostomy reversed
You’re welcome!
I had a ilsecomy bag for about a year. I was diagnosed with diverticulitis and fistula on my bladder. I was in hospital for a total of six weeks. I had 3 surgeries. I became sepsis and my gallbladder was shutting down. I finally went home but I had several drain tubes including a ilsecomy bag. I had my ilsecomy reversal last April then it was wound care. I'm doing a lot better now. But it was a journey to get here. I appreciate your advice and videos. They have been very helpful. God bless you. Keep up the good work. 😊👍🙏
That sounds rough! I’m so glad to hear you’re doing much better now. Best wishes for more good health.
@@SurvivorJelena thank you. I wish you good health as well. I have a obstacle I been diagnosed with prostate cancer I'm under doctor care active surveillance also had several biopsy done too. God bless you
Same boat as you, Dr told me I could eat anything, but in small portion. I didn't listen and ate large meals to gain weight after a few weeks, went about 7-10 times for a few months. Started to get better afterwards. One banana per day, Vitamin B, Mg and Ca is a big help, I was having incontinence until I started to take these. Dr prescribed Maybeverine Hydrochloride (Duspatalin) for burning butt and was a game changer around 3 weeks after surgery. Took pills daily for one week, then one per week, but now I just keep a few for emergency but haven't needed it for a long time. Had reversal in 2019 June. Just saw your video, would have been useful to compare notes when the going was tough.
My tip is not to follow what I did but have 3-4 small meals.
Glad to hear you’re doing well now 💙
THANK YOU for posting this video. I was diagnosed with stage 3c colorectal cancer on 11/22/2022. For me, there was an immediate surgery to remove the tumor from the sigmoid colon (connected directly to the rectum) and provide a colonostomy. Since then, I did the 6-month of chemotherapy followed by 5 weeks of chemoradiation. Last week, I started my journey back. On 9/22/23, I had the colon reconnected to the rectum and diverted the ileum out of the same stoma hole. Sometime in November I will do the enema test again -which was very unpleasant -but you nailed down the explanation to a tee! Lastly, I have full reconnection. Your video provided me with a lot of hope and insights as to recovery time and suggestions like the low fiber diet to ease back to "normal". Super helpful video that gave me hope at a time I feel pretty down.
You’re welcome💙 I’m so happy to hear my video helped prepare you so well for what was to come and my experience was very similar to yours. Wishing you the best.
Thank you Jelena for this and other videos you have made, I am having my ileostomy reversed tomorrow. Was diagnosed with stage 2 colorectal cancer had LAR surgery radiation and chemo as well. I'm glad that you are doing ok.
Thank you Alvaro! I hope your reversal surgery went ok 💙
How re u now. Hope all is well
You are doing people a great service by sharing this. Brave woman.
Thank you 💙
I have to thank you so much for your straight forward, honest, common sense information in all your videos,,,I am having LAR sugery along with a full hysterectomy at the end of the month for stage 3 rectal cancer...I waited too long due mostly to embarrassment about talking about POOP. Since I have found out I have cancer, I have come to realize EVERYONE POOPS. There's nothing to be embarrassed about talking about it---in the right places and times of course---nobody wants to talk about poop at a fancy dinner 😜 Your videos were a HUGE help. I've seen so many videos from people with UC or Crohns, but not so many with cancer, and it's a POV that is extremely important when you have cancer, so thanks again!
Happy to help! I hope your surgery goes smoothly 🤞🏼💙
Hi Jelena, You are really an angel, your post really helped me alot. I got my reversal 8 days ago and i am still in the same recovery process you described. But at least i am prepared thanks to your video.
Aw, thank you ☺️ I hope things start improving for you soon 💙
Great video. My bfriend has his ileostomy reversal surgery next Monday. He had sigmoid resection and also had ischemic descending colon. Cancer free now
Best of luck to him for his reversal.
Thank you so much for the video. I can't wait fir my illiostomy closure. I'm currently on chemo for colon cancer and I just gave 3 treatments to go. Your a real champ n an inspiration.
You’re welcome. Best wishes to you 💙
I have my reversal surgery on Tuesday and I am excited.
How are things going?
How re u now
Thank you so much for your help my father is going to have his ileostomy
Reversed in a couple days and there isn’t any other videos like your to help me. I’ve been watching your videos since my
Dad got diagnosed with cancer I really appreciate everything you do. You are a miracle!
Happy to help 💙 I hope your father’s surgery goes smoothly and complication-free.
Thanks for the video,,im also a stage 3 rectal cancer survivor,,its been 2 months now,,
Have you finished up the first part of treatment? Wishing you the best as you navigate this tough journey. 💙
@@SurvivorJelena yes,,i have also my reversal done,,but still,,the urgency to poop still burdens me,
@@michaelvilloria3004 how are you doing now ? My brother had his surgery two months ago and still has bathroom issues and go to work 🙏
Great video. I had mine reversed 6 years ago from stage 3c ovarian cancer today I struggle with some intense scar tissue around where the stoma was
I’m having a revers this Friday. Thanks you for the info.
you are a warrior, that's the way to fight a horrifying experience that would put the test to anyone's mentally, i don't think i could do it the same, i hope you will keep pushing forward and don't take no for an answer
Thanks for info your so positive and delightful just starting my journey for colon cancer look forward to seeing all your videos .🌹
Wishing you the best as you start going through treatment 💙 I hope my videos help you out as you go through each step.
I just had my reversal on January 3, 2023. I am still learning about my bowel and diet, and I am so glad I found your VDOs. I lost 40 lbs since I was diagnosed with rectal cancer, and I am very nervous about losing so much weight. I am 82 lbs now and wondering if you could please give me some diet advice.
I’m not a nutritionist so I can’t give much good advice on diet other than to try to add as many calories as you can to any food you eat. I would add high calorie protein powders to almond milk for a smoothie when I didn’t have an appetite. Be generous with butter, peanut butter, and carbs. Also talk with your oncologist to see if they can help and/or refer you to a dietician that could help further. Good luck 💙
@@SurvivorJelena thank you very much.
Jelina thank you for the video you look great, it's so good of you helping everyone going through this, ♥️😊
Thank you 💙💙
Thank you, thank you, thank you for doing these videos 👏 I had stage 3 rectal cancer and had LAR surgery in January 2022. I'm having reversal 28th October 2022 and I'm dreading the aftermath, however your video has given me hope! I did read on another forum that doing pelvic floor exercises before the reversal can help so I've been doing those every day. Thank you so much for all the tips and here's hoping I'll have a successful reversal 🤞🤞
You’re so welcome! I’d love to hear back from you a few weeks after your reversal to hear if the pelvic floor therapy helped make things a little better after the reversal. I hope your reversal goes smoothly 🤞🏼💙
Yeah no problem, I'll post a reply if they helped or not in a couple of week's 👍😊
@@berniehanrahan5701 your reversal is successful?
@@nigaraltowheed379 my reversal was successful to a point but I was left with bouts of in incontinence, I now have a permanent stoma and life 8s great 👍🙂
@berniehanrahan5701 how are you? Did you get the reversal? Any complications? How is your bowel movements?
Thank you for this video. It takes a lot to put your personal life out there. I don't think I could do it. I'm slightly less than 2 weeks after my reversal. This has been such a difficult process. Only God is getting me through this.
Thank you 💙 The first 2 weeks post-reversal are SO tough. I hope things start to improve for you soon.
omg thank you SOOOOO much for this. My peers have been helping me to prepare for reversal but this has helped by leaps and bounds.
You’re welcome 💙 Best of luck to you!
thank you for all of your valuable information. it must've taken tremendous courage to revisit these issues and 'put them out there'. and i thank you for these videos which are undoubtedly the most precious tools for my reversal. i am more aware of what to expect and how to succeed through the entire process from prep, to admissions, and through the recovery.
imagining the process was vague and nebulous; now i see success because you have taught so much.
thank you so very much. ✌🏼
Happy to help make the whole procedure a little less mysterious. That’s exactly what I was aiming to do 😀
I want to thank you for this video, I will be habing my revers surgery next week on Thursday, September 15/2022. Unfortunately doctor and nurses haven say almost anything about what is going to happen to me after surgery and because you know anything you don't know What to ask for. Now I know that I have to be prepare and going to bring diapers and cream, thanks to you now I know how the poop process can be. In my case the doctor said that at least the first week I need to eat a very low fiber diet but now that I have your information I going to ask more about that. Thank you, thank you. Hope everything with you is good and wish you the best Im also a cancer survivor (Breast) God bless you.
The low fiber diet is what’s most commonly recommended after a reversal, so I think that’ll be ok for you. I hope it goes well and I’m happy to help you be better prepared 😀💙
So inspirational and very helpful video
after one month my brother has this ileostomy reversal but he is afraid of it because he is upset that how will he go to washroom after surgery and how the things will go but i will definitely show him this video you are inspiration for many of cancer patients more power to you🙌🏼
And pls let me know that what do for rectal discharge ( mucus) before reversal because my brother is very upset because of this discharge because as he walk the leakage starts
I was able to hold it and let it out on the toilet. If he is having troubles holding it in, he should ask about pelvic floor therapy. That will help him strengthen the muscles so he can hold it in and could help with control after his reversal.
Helena, this is so good. I feel like there’s limited videos out there about this. I wish I had found more videos back in early 2019 about the Ileostomy take down surgery. Our experiences were very similar, so glad you’re sharing your story. I’m sure this is helping so many people going through the same thing!
Thank you, Diego!
Two week post reversal illeostomy and facing incontinence …. Any advice?
The next time you see your surgeon ask about if pelvic floor therapy is an option that could help you.
I feel bad for anyone with scars that bother them. I relate to your feeling that "it looks like lips on my chest" (it doesn't! I hope it's gotten even better now. At least it's in a discreet place, relatively. It certainly went down a lot from the beginning! I know camera might not show it clearly, but it doesn't look like much. Plus you can say you beat cancer more or less, so that's cool!
Myself I had a colostomy reversal combined with a hernia repair, about 7 weeks ago. The hernia area looked almost as big as it did before, so I'm pretty bummed out. To me it looks like Elephant Man is residing on my stomach! A truncated trunk, hanging slightly over the half-dollar-size stoma wound, all kind of wrinkly..
The nurse, PA and hernia surgeon all said it would flatten out more in the weeks to come ("give it three months; then if you're still not satisfied we'll hook you up with a plastic surgeon": whatev's, I'm not the type to expect savior-ship from plastic surgeon's. I thought they could maybe have coaxed it into a better shape (they put surgical glue all over the dang thing..) or tightened the mesh more over the hernia - but Hernia Doc said the mesh goes under the abdominal wall: I still don't get it, have to ask him again. Sort of moot now anyhow. I shouldn't spoken Before the procedures; I'm so passive and also alone..
Jelena.. Thank you so much for this video, its exactly what I was looking for.
You are an Angel from Heaven.
I have my Ileostomy reversal in London, England on 17 November 2021.
So much of what you went through pre-reversal is what I have experienced.
I was diagnosed with stage 2 Rectal Cancer.
I cant wait for my reversal operation and seeing this video has helped me beyond words.
Ray.
So happy to help! Wishing you the best this week on your reversal surgery 💙
Tell us how was the situation ?
How did it go?
Have ostomy because of ruptured bowel. Suppose to have reversal surgery in March. After watching many videos, I'm now thinking of keeping the bag.
Ouch! What caused your bowel to rupture?
@@SurvivorJelena hi. Asked surgeon. The only answer he could give me was my number was pulled and it could happen to anyone. No real reàson. Just happened. Blessing is it should have killed me but it didn't.
Wow amazing, I stumbled to ur channel really wanting to see what to expect for a flex sigmoid while having an ileiostomy-candidate for reversal; therefore my Surgeon has ordered flex sigmoid… I am so thankful for “accidentally “ coming across ur channel!! Major help, luv u girl!
Happy to help! Best wishes to you 💙
Thanks for documenting your progress. It's now help prepare for my reversal mentally when my time comes.
You're welcome. Happy to help! 💙
I take two Imodium tablets each day. Without Imodium I would constantly have diarrhea. I was also taking Metamucil but stopped since it seemed to aggravate the diarrhea.
People can have a temporary ileostomy for a variety of reasons. In my case, like Jelena, I had an LAR procedure due to rectal cancer. There is some called LAR syndrome, which about 60% of LAR patients have. Usual symptoms are frequency and urgency. Diarrhea. Constipation. Incontinence. This has nothing to do with the ileostomy or reversal. More frequently associated with radiation treatment and rectal surgery. Something to discuss with your surgeon.
There are also physical therapists who specialize in pelvic floor rehabilitation which can help to recondition the muscles that control your bowel movements and anal sphincter control.
Jelina thank you so much for getting back to me I will pass on the information to my husband it's a great help you are so good 😊
first. ..thank you🧡🙏 my name is nancy i live in orlando and i will going to have my GGE so then my closure ileost. and you help me a lot thank you so much God bless you always..in a little scare😢
Any surgery is scary if we've never been through it. Sending you strength as you prepare 💙
Thank you so much for sharing this!! Just got my ileostomy a week ago and it's good to know what I'll be in for later.
You’re welcome!
Great information!! my reversal surgery is a month away so this helps me so much..i feel pretty informative now.. thank you for this video, you are helping so many people prepare for whats to come...
You’re welcome💙 Happy to help you feel better prepared!
I am having this done tomorrow. Getting very nervous but glad I watched your video.
Best of luck to you!
@@SurvivorJelena thanks. They did that scope last week to see if anything was leaking, everything turned out to be good but wow that was painful. If they gave me the option of being knocked out for this procedure I would choose that knowing what I know now.
Yeah, that part was not fun. I don’t know if anyone ever gets the option to be knocked out for that. 🤷🏻♀️
@@SurvivorJelena just thought I would update anyone who cares. Reversal went good and pain wasn’t nearly as bad as the first operation. I had my first bowel movement with gas tonight so I am hoping to be sent hone tomorrow. Thanks again for your channel
I’m glad to hear the surgery went well! Hope you’re preparing to be released today 🤞🏼🤞🏼
Thank you so much for documenting your cancer journey! I was diagnosed in September 2020 with stage 3 Rectal Cancer and
have found your videos priceless. Cancer is scary enough, but more so when everything is unknown. You gave me the gift of knowledge which has made my journey a little more manageable. I completed my radiation treatment with oral chemo and had my LAR and ileostomy surgery. I get my chemo port installed on Thursday and then start my chemo next week. My only question is, how long was your hospital stay for your Ileostomy Reversal surgery?
Sorry to hear about your diagnosis, but I’m happy to hear that my videos have helped you through this difficult time. I was in the hospital only 2-3 days for my reversal surgery. I had no complications and wanted to get out of there as fast as I could!
This is absolutely wonderful Thank you so much for your kindness.
I am going in for a reversal next week .
I am so grateful of what I might expect.
You are a beacon of light !
This was very helpful, thank you! I go in for my reversal (and an incisional hernia repair) on July 6th, 2021
You’re welcome 💙 Best of luck on your reversal!
How did it go?
@@benblake479 100% successful. I was back to normal bowel movements within two weeks after the operation.
@@in5d Praise the Lord! God bless you!
@@in5d Hi! What was your initial operation with a temporary stoma?
Jelina my husband's test went well just waiting on a date for the surgery thanks for all your help
I’m so happy to hear the test went well 💙
Thank you for sharing this. I just had my reversal almost two weeks ago and I'm dealing with a whole lot of issues but I'm learning the best way I can. Good bless you
Thanks for this video! I will have my reversal on November 18th, almost a year since having it done. I’m nervous and excited. Medical doctors aren’t the best when it comes to diet and nutrition information. I am seeing a naturopathic doctor next week to help prepare me and for help afterwards to get back to normal. Not looking forward to having a burning butt. 😂
The more people on your side helping the better. Happy to be a little part of that help for you 💙
Thank you Jelena! This video was so informative about what I should expect. Getting my reversal done in the next few weeks.
Thank you for the detailed information, I'm scheduled for my reversal on the 7th of November..
You’re welcome. Wishing you the best for your surgery 💙
Excellent presentation! I'm day 2 after my reversal and you sure helped me to know what may lie ahead for me and how to work thru any uncomfortable situations. Thank you so much..
You’re welcome. Best wishes to you as things start waking up 💙
How r u now. Hope all is well
@@nesarajahlaennin7702 Hey bro long time no talk. How ya doing?
@@benblake479 I m fine. What about you. Pray you are doing good
@@nesarajahlaennin7702 I'm ok. Was in the hospital for 2 weeks. Some complications I had to deal with but I'm getting better.
You have overwhelming helped so much in what to expect, and prepare supplies. I just completed the gastrogafin test and just as you described. Not bad at all compared to the horror stories out on Facebook pages.
Happy to help! Sometimes on those pages only the people who have he worst experiences are the ones sharing.
You Rock ! Happy you're doing well. Bless you ❤
Thank you!
Great info! My reversal surgery is tomorrow and I am so excited!
Hope your surgery goes smoothly and complication-free 🤞🏼💙
How re u now
@@nesarajahlaennin7702 Today marked 6 weeks and I returned to work. My recovery went well. The tip about the diaper rash cream definitely helped. I also soaked pretty much everyday in the beginning to give my bum some relief. The first 2 weeks were the hardest, but I've recovered quite well. Thanks for asking.
@@aishaliane God Bless You. Thks for your response. Gave me confidence. Mine on Saturday. 2nd Oct
I did the enema test today Jelena very painful Jalena, I have to go see surgeon in two weeks for another test similar to colonoscopy I will be sleep for this one, great news no leaks for the test today, but mild diverticulitis pray that I will be scheduled for reversal very soon.
The enema test is no fun, but I’m glad you passed it so you don’t have to do it again 👏🏼.
im lookin forward to my reversal may 13th, thank u for all the help and you are very informative!
You’re welcome. Hope your reversal goes smoothly. 🤞🏼
I don’t have anything related to this but was just curious and wanted to learn about it, I have to say that you were amazing on how you explains every detail. I watched the entire video,
and congratulations on what you have accomplished!!
Love this! 💙 My goal is to make my explanations easy to understand, so if someone that doesn’t have anything related to this can understand it that must mean I’ve done my job 😀 I’m happy to hear you watched the full video too!
Your videos helped me so much I just turned 40 and had staged one rectal cancer I had lar surgery and looking forward to reversal in February you gave me hope I can deal with the new normal I was so fortunate that it wasn’t In my lymph nodes i was pretty fit and hiked a lot this was a really hard surgery to go thru I’m so happy to know u are doing good
The first few weeks will be rough after the reversal, but hopefully you’ll be back to hiking next summer. Happy to help give you hope 💙
I really hope so man I’m ready for that reversal but I’m thankful for bag too gonna stick to low fiber for few weeks and do the Metamucil u gave excellent tips I had a low rectal cancer it was lower than they thought on X-ray so I have only small amount of rectum left it’s all been so scary I was healthy up until this never had any health issue only symptom was little blood in toilet I had an unbelievable doctor I was so close to permanent bag what a journey this has been I have been so fortunate to have such a amazing husband to help me I walked 4 miles today u gave me hope like u wouldn’t believe I can get thru this your a righteous lady
Having a great caregiver helps SO much. Way to go on walking 4 miles!
Hi Ashley I was diagnosed Anal cancer 2019 stage 2 it just started in Lymp node in groin . I'm all clear now after Chemo & radiotherapy it was hard at first. I am going for reversal end of june as 18mnths clear had very good response from treatment Li don't smoke or drink im 55 very anxious but know I have to go forward. Keep positive I do and trust in my faith..
@@valsmith2820 u definitely have to have faith Val I have been on a roller coaster ride ever since they told me I had the big C but we are definitely not alone in this I am finally getting my reversal this week only one more day of this bag I have had it 6 months kept thinking I was getting it off but I had complications a stricture I hope u get your reversal soon and everything goes good for u I’ll let yall know how my reversal goes 💕 to u Val
omg thank you so much for this video. I am now a week since I had my reversal surgery and been having rough trips in and out of bathroom. Your story has encouraged me and to know that things will get better.
You’re welcome 💙 Hang in there, those first few weeks are so rough.
Rachel how are you doing now ?
I had also ilestomy surgery previous 2 years before at that iam very skinny my body weight is 43 kgs at that time.just iam improving my by body weight
I am a 8 year cancer survivor had first surgery for the tumor on July 7th 2016 had ilyosconpy for 11 months reversal June 5th 2017 doing fine so far. I know what you are talking about..
You are a gem, great info for everyone who is about to have this surgery.❤🎉🎉
Thank you so much!
Thanks for sharing this. Im hoping for my ileostomy reversal later this year, but whilst I'm excited to hopefully get back to some normality, I'm also dreading it.
Yes, people can have such different outcomes it’s easy to be both nervous and excited to get the reversal.
need to chime in and say...even if you don't suffer from CRC your videos provide a whole bunch of other very useful information to us viewers. I might actually get over a lifetime of "prudishness" about normal bodily functions. Just need to watch a few more of your videos. Thank you
Your post op experience is MOUNTAINS different than mine. The pain was excruciating for me. Much worse than the original ileostomy surgery. Ugh SO bad
I’m so sorry to hear that.
If you dont mind me asking, how was it painful for you? The worst for me was when I had a long incision in my abdomen to get the stoma which made walking impossible for a few days post surgery because the pain was horrific. After that it was just mildly sore for a few weeks. Is there something different when it comes to reversal?
Just got my reversal done last Monday. I can barely lift my right leg or move. I'm ok when I'm standing, but getting into a sitting position or going into a sitting position is excruciating! That includes getting and out of a normal bed. That's the only thing I miss about the hospital bed. And being able to position it for comfort and ease of movement. Walking is difficult and I live on the top floor of a 3 story walk up. I want to mention that I can't stand up straight either. I'm very hunched over.
Did it get any easier for you?
I had anal cancer. Had an illeostomy for three months. I was so sick I had a terrible time with the bag. At the time I had cancer, they would cut the muscle. They no longer due surgery just chemo and radiation. Once the muscle is cut, you pretty much require an ostomy for life. Well I practically live on anti diarrhea pills now and go back and forth as to whether to go back to an ostomy! My surgery was 17 yrs ago before doctors stopped doing surgery for this cancer!
Congratulations on making it this far after your cancer diagnosis. The decision to go back to an ostomy is a big one, definitely requires a conversation with your doctor.
God bless you for this detail
Thank you 💙
I nust had my reversal 4 days ago.im still in the hospital. Thank you for your brilliant video. It was VERY imfotmarive. May i pose questions to you? Youre awesome!! My hero!
Sorry I just saw your comment...it got held for review by TH-cam because there wasn’t a space after the first period and it thought you were trying to spam with a website. I sure hope you’re home now from your reversal surgery. 🤞🏼💙 You’re more than welcome to ask a question if you still have it.
@@SurvivorJelena i cant recall the question. Thank you for getting back to me.
Hi jalena,my name is rich and I had a resection at my rectum from stage 3 cancer. I had the robotic surgery and was wondering why they did such a big inscision
Thank you so much for sharing your story. This information is helpful.
Happy to help!
So awesome thank You for Your honesty I just went thru same procedure Your video explained to Me more than anyone ,That chap hide hurts i just jump shower getting a bidet !! God bless !!
Great video, Very informative. I've had my ileostomy now for 10 month and I cant wait to get rid of the bag. Thank you for providing the information. NOW I know what awaits me. While having the ileostomy at any point did you have any discharge through your butt? This is also a question for the group. I've had several, even months after the surgery. My surgeon explained that at the beginning I would have some residual discharge but it should stop. Its been happening periodically, once or twice a month. NOT sure if this is normal. I also don't want to deal with the surgeons that worked on me originally. Marc below explained it best. No surgeon, or nurse ever provided any valuable information as to what to expect, how to put a bag on, how to keep it on what you need to do keep it on. They sent me a box full of supplies with "0" instructions. Thanks to the ileostomy community here on TH-cam I've learned what works, what doesn't and what todo in the event of a leak. Let me digress . Thank you for providing the video and sharing your experience.
Yes, having a little discharge every now and then from your butt is perfectly normal, and is actually good because it shows your colon is still working even though no food is passing through it. I agree that the TH-cam ostomy community is so helpful! Dealing with your ostomy is a mastered skill and you can’t learn it all at the hospital.
Yes it is normal. My son has the same issue. He was operated last year due to FAP (colorectal disease) entire colon removed