I cannot wait for my reversal, I am praying the day cannot come soon enough, after the procedure I am like I never ever want to see another Ostomy bag for the rest of my life ever again for as long as I live.
@@oleggeraschenko4932 thanks hopefully sooner got ct scan in two weeks from today, then 1 week after I meet with my surgeon and to see the results and next steps will be discussed
Thanks for the great information. I am looking forward to my reversal surgery in about two weeks. I hope and pray it all goes well. May God bless everyone who has to live the ostomy lifestyle.
Just had my reversal on the 12th April - still in hospital. Was released but rushed back due to Ileus (blockage) no poop yet but passing some gas,no pain pills either. Sticking with m low fiber diet as well. Praying this takes-I will be 70 in a few months and scared of failure. Last Nov 23 I was misdiagnosed and suffered ruptured appendix along with colon removal (10 inches) and ovary removal. Thankful no cancer so I was hopeful for the reversal- my heart sunk when I woke from the emergency surgery to know I had a colostomy! The last 5 months have not been horrible but I was not comfortable with “life on the bag” l, the leaks and the odors!!! My grandchildren were SO honest!! Stay tuned for my next update, my first poop and release From the hospital.
I just came from ileostomy reversal surgery I didn't need anything but a robe and maybe my own nightgown and toothbrush. I enjoyed the pain pump for 3 days . They took me off on the 4 th day I used the bathroom and was sent home. 7 days home I recommend baby wipes and a diaper rash cream.
Reversal is harder than the cancer operation, it can be very hard. I had my reversal a year ago and it still isn't normal but is getting a lot better. Have to be patient.
Hi Jelena , you came little too late with how to live through the Ostomy reversal for me but for many others you are a God send. I have lived through a living hell post the reversal, 16 years ago when I was 55 . I was diagnosed with having colon cancer which had progressed way beyond second stage. My surgery was a little complicated because of the location of the tumor, therefore and in order to remove the tumor completely, about half inch collar of the rectum muscle had to be shaved off all around along with a foot long colon. After the hours long surgery, I found my self equipped with an illeostomy bag. The surgeon wasn’t sure about the outcome before the surgery because the tumor was too close to the rectum so he couldn’t tell me if I would wake up with a reversible ostomy or a permanent one. Luckily it was possible to equip me with a temporary bag but,,,,,at that moment my miserable year ahead had begun. I haven’t the words to describe the day’s long torture months after coming home , I couldn’t stay away from the ‘seat’ and couldn’t turn off the burning heat as if I have a burning candle with an invisible flame under.. ! My stated prolonged condition was exacerbated because of the partial removal of the rectum wall, consequently making the orifice too tight for easier exit . But now it’s been quite sometime since that experience, I am fully recovered and enjoying my life. You are so right about the hospital toilet paper for that’s what gave me the first burn 🔥
Been through the same experience myself so I can sympathise with you. A year after the operation it still isn't back to 'NORMAL" but it is getting there.
I want to thank you and I appreciate your knowledge more thank you know. Sometimes people think that they are the only ones that go through something like this, so a very special thank you Jelena. Thank you for being so real and giving yourself to help others. So, after my first surgery (cut 6-inches of Colon; stage-1 cancer gone - thank God), I had the Coniotomy for 6 months; even at work. Then I had the reversal. Every thing you said is true, but I rather deal with this, than the other. Thank you for helping others and I love you as a person for this. I pray for others to get through this long process.
@@summerskye2492 My prayers are with you. You'll do fine. The true test is your strength both in body and in mind. You'll be a stronger person for it, again, both physically and spiritually. Life is a up and down thing and this is no different. Like you, I didn't have a choice -being so active as I wanted to be. You have people that care about you and will help you. You are never alone in this. Love and more love.
My tips for internal or external hemorrhoids= use baby wipes unscented to clean instead of toilet paper, use Aquapour cream- with a glove-around the anus and a little inside-because this cream is the most neutral. Take a 15 minutes sitz bath with warm water filled basin adding some dropps of castor oil, OR copaiba oil, OR add also some epson salt, OR baking soda.
May i ask what was the reason you had to have an ileostomy? I had diverticulitis surgery to take out some of my colon, there were complications so now i have one, dr said for only 6 to 8 weeks, so scared!
I experienced everything you described before I got my Colostomy. I had a ileostomy for 7 months and after reversal I had severe LARS. 20-30 times in the bathroom. 2 years and never got better. I’m 5 weeks with my Colostomy and I love that I don’t have to be bound to the toilet. I empty my bag 1-2 times a day and don’t have to worry about fecal incontinence. You gave an excellent presentation!
Thank you for the video. Very helpful. One thing I would like to add. When you have an ileostomy, your colon is empty and all the good bacterias died from hunger. So, when you reverse the ileodtomy, it should be preferable to take probiotics for a while, until the bowels come back to normal. Hope this help.
Hello again. After being delayed twice on my ostomy reversal, I finally had it done on August 29. I am three weeks out. The surgeons office said it would be bad, but i had no idea how bad. The first two weeks were horrible. 100+ trips to the toilet, accidents, Butt on fire. I am starting to get better now. Wound has almost filled in. Butt no longer on fire. Still making many trips to the toilet. I don't have much rectum left after surgery. He said it would take 6 months to a year for me to get to a new normal. I plan to go back to work mid October. Thank you for warning me about how bad this would be!!!
😮😢 Omg, I’ve been delayed on getting my reversal going on 3 years now… hopefully I get through soon but I’m scared about my butt 😢 But I guess it does sound familiar tho… that’s how my experience was whilst doing radiotherapy. Uncontrollable movements, butt on fire from just Liquid coming out 😩😩😩😩😭😭. I really hope it’s not that bad 🙏🏼🙏🏼🙏🏼
Dear jenina,thx for this great video.haf revetsal on 6/9 in lotd of rectal pressure spadms with no control of bowel going up to 50 times small amount in aday,very discouraged.have othets experienced this,thx
Great video! I am about 2 years out from my ileostomy reversal and I am 50/50 on whether I should have had the reversal. I simply cannot eat during the day or I will not be able to perform my job. I probably have 75% control of my bowels. It's a hard decision to make......much love to you and your family!
Also don’t forget to consider using Imodium to slow down your digestive track thereby reducing the likelihood of having really loose stools. Also using Metamucil at night can help to bulk up stools. Your doctor will have more info on these options. It’s been a year since my reversal and I’m still using Imodium.
My surgeon didn’t want me taking any medications for the first few weeks to let my body adjust. Once I went in for my follow up he allowed me to start Metamucil and Imodium.
@@SurvivorJelena Personally I think its one of those things where if Imodium helps, ignore the doctor. The doctor isn't the one having to sit on the toilet constantly.
@@matthew90276 Is there a danger in using immodium before doctor okays? Would it be better to double-check w/ doc & say you Really need it? Can always Still ignore doc', but maybe they'd say okay. Sometimes I ignore doctors and sometimes it turns out I'm ignorant and they know better.
Thank you so much! my father will be having surgery November 10,2022,and I wanted to make sure he is as comfortable and calm as he possibly can be I appreciate this useful information.
I had my resection done oct 12 and I’m already going for reversal surgery on Feb 1 that’s next Wednesday I’m so nervous but this video is making it a little better
Oh you just had it a month ago! Hi. I'm a stranger who has a reversal scheduled on Monday-in 3 days. I might chicken out because I have really important traveling I have to do and if I wait I'm very likely to lose certain relationships forever and one of them is my family and it means more than life itself to me. Well almost. I could have done mine 3 months out also but there kept being all these scheduling conflicts and hesitations because my living situation is messed up. Also I had insurance issues but they've been straightened out. So for me it's already exactly a year and I didn't want to keep waiting because I'm scared it will be harder to recover. Different medical personnel tell me different things. Anyhow how are you doing? If I can be so annoying as to ask you to write on TH-cam more. You don't have to I just happen to be completely alone but it's my fault. I have a colostomy. I'm very curious as to how you are doing and how it went and how it's going. I guess I'm going to do mine or not do it and it's up to me. But if you feel like answering I'm very grateful. But I'm sorry to be bothering a stranger.
Thank you for making this video, I have my reversal surgery coming up in 5 days. And I have no idea what I will be facing. My surgeon did say this surgery is a lot easier than my last one with part of my colon taken out. Thank you again
@@SurvivorJelena Thank you, Surgery went well, for anyone else about to go through it. the pain level after surgery is not as bad as your other surgery. And I will stress this as much as possible. they want you to get up and start walking around. I did that as much as possible. I know my goal was to pass wind and then pass poop. which it was hard to pass poop when all you could eat was liquids, Also, Don't trust a fart. make sure you are on the toilet, Now for me I am 2 weeks after surgery at home, a couple days ago the doctor took my staples out. I am on no pain medication at all. You can do it. and do take the supples to the hospital they really do help.
This helps a lot, I'm 23 years old I had my first surgery which was a loop ostomy. Same exact case as yours except I had over 2000 polyps throughout my colon and rectum, 4 months later I had my reversal done. Its my first week and I've been living in the bathroom basically :(. R.I.P. my butt thanks for the information as I will be taking the advice👍
I wish! This brand new body is missing a few parts and is a bit worn down from chemo and radiation, plus going into menopause 🤪 I’m happy that it’s carried me through this, but I definitely don’t feel 18.
@@SurvivorJelena Hello Jelena, i appreciate your response. i did not know you were going through the things you mentioned in your comment. You are correct, chemo and radiation can be a very big burden on the body even after it is over. I really wish you an abundance of health, joy and happiness in life. you have inspired many to hope for healing and be open about talking about it.
Surgery in two weeks the first surgery adding the stoma will get these items thanks for info my low tolerance for pain makes me nervous for a long hospital stay
Just make sure to communicate that with the nurses as they’re taking care of you as you’re recovering in the hospital. Hopefully if it is taking too long they can give you some fiber or something to help move things along a little. They want to see you recovering too.
I went though everything you mentioned and now I am doing well. I am heathy due the surgeries and I have that last hurdle(s) in the bathroom to get through - but it's part of the process. Knowing that, you'll understand. But I am almost back you normal. God be with you and you'll be done before you know it - and back to your former self like myself.
Yes sir this is the number one reason I kept my ileostomy. Too many unknowns. What I do know is I can fly and not be worried about having to bust it for the bathroom somewhere it mid flight or leaking. Everyone is different so you do you. It should be said that reversals can have issues and you can end up having another reversal. Thanks for sharing Jelena
Thank you for all the helpful information. I've decided not to get the reversal. I am 70 yrs. old and just don't want to go through another hospital stay or surgery. I seem to be managing ok with the ileostomy and have a part time job. I've not told the surgeon yet. God bless you and your family.
The surgeon will hopefully be just fine with your decision. If you’re managing fine with the ileostomy I totally understand why you’d want to keep it and not deal with the unknown of the reversal plus another hospital stay. Best of health to you 💙
You should ask if they can give you a Colostomy from your Sigmoid colon. I hear that would give you near normal bowel movements and make life so much easier for you.
I am beyond thankful for this information. In two days I go have my reversal done. I’ll be going to either Walgreens or WalMart for supplies. Thank you so much. Bless you.
I was diagnosed with stage III bowel cancer in May 21 and had a stoma bag attached. Chemo done and have (hopefully) now come through the worst of it all. I’m in hospital one week from tomorrow to have it removed, which I have been looking forward to for so long. Im terrified again of the whole surgery thing, but now this has really got me worried. Ive been thinking about the whole training my butt thing and hoping for the best. I’ve kept myself fit and strong through the journey by keeping up my swimming, gym and even recently, went back to playing rugby lol So many things I wasn’t prepared for the first time around though - Such as still having the urge to have bowel movements from time to time, which was a surprise. Thanks for presenting so informatively and honest. Really appreciate how informative you have been. Cheers.
I just got shot last year when I was 19 and was in a coma for 44 days and I woke up with that thing and it freaked me out but I learned more about it and got used to it but I’m 20 now and June 13th is my appointment to see if my colon is healed for the reversal I’m so excited now I’m 20 and I’m ready
My ileostomy surgery had me in hospital for about three weeks. It worked out well as the staples could be removed from the comfort of my hospital bed rather than at home. Sure the staple removal wasnt as comfortable as you'd expect with 20+ staples coming out but it was the best place to have it done. It was mostly because I had holes to my bladder & large bowel & abdomen so plenty of stuff had to be repaired.
I'm also due my reversal within the next few months. My large bowel is completely intact though my sigmoid colon is looking questionable. They're aiming to have me reversed properly though a Colostomy is an option if need be. It has been almost a year since the surgery and I'm somewhat worried my butt muscles are probably not the best so a Colostomy would probably be best. I'm one of those patients if something can go wrong it usually does.
It’s a big decision to make whether to reverse it or not. It sounds like you and your doctors are preparing for multiple options, so what counts the most is that you’re at peace with your decisions. 💙
I had a 3 week stay in the hospital with numerous complications with my Ileostomy. I'm exactly 1 month in and will hopefully have my reversal in July depending on what my oncologist says. I'm contemplating not getting chemo this time around.
@@margaretherreraI hope your reversal goes well. All the best to you. With me they did a sigmoidoscopy while I was asleep to check the area to see if the original repair healed(which it had). After I woke up I was a bit tired and had diarrhoea for a few days but things quickly went back to normal. Basically I had a lot of mucus which made me sit on the toilet almost every day straining and I think my butt muscles were strengthened after years of doing that.
The bidet idea is on point. I would just incorporate in some epsom salt or something stronger if using a portable one. The salts help with inflammation and keeping you fresh without any residue.
Hi..I am sharmila Ravindranath from India I am 58 years old and had lower rectum cancer..got the robotic surgery done on 5th December and the ileostomy surgery on the 12th February That after effects of surgery with loose stools worries me a lot..your video helped me a lot in understanding the problem..so happy to know that it is all very common and takes time..thank u so much for sharing the information..looking forward for more details on the diet and how u have overcome with it..take care..love you
I really thank you Jelena for encouraging ileostomy patients. I am also a ileostomy patient. Should I go through reversal surgery? listening others experience , they have suffered badly after reversal. What would be better ? plz suggest me.
Thank you soo much for this!! My bf is having his surgery soon and there is nowhere else that I could find this information (i looked for hours at different home health and medical sites)
I had emergency temporary Ostomy surgery/Colostomy on October 2 because of Diverticulitis in my Sigmoid Colon and 1, possibly 2 fistulas. At this same time, I had Covid Pneumonia. I wasn’t able to leave the hospital as soon as the doctors thought I’d be able to because of then having Diverticulitis in my Stoma. ..🙄 So I left the hospital on my 11th day of being there. ..🎉 I’m still recovering. I’m supposed to have reconnection surgery in 6 months or after 6 months. I’ve been afraid of how painful that’s gonna be. I’m trying to give it all to God but I still have fear of the pain. I’ve been told it’s no worse than the pain I’ve already been through. I’ve suffered from several pouch blow outs since being discharged from the hospital and my skin looked burnt. It was very, very painful. As much as I’m sick of the pouches I’m fearful of what’s to come. There is the possibility that I won’t be able to be reconnected too. I may not have any good colon. It really sucks also having Diverticulitis where my stoma is. Thanks for this video. It gives me something to prepare for.
I made yest. the petscan, the final result will be at sat. but the doctor said nothing appear for me, you are normal .. may God help me always .. waiting till sat.
The doctor should recommend that a bidet be installed before you go home from this surgery!! It would have been a lifesaver! I have to be absolutely pristinely clean or anything left behind will eat the skin in that area. Ugh.....
hi jaleena, GOD BLESS YOU!! im goin in on the 13th of may for my reversal, got my stuff packed and ready, hope i dont have any issues! but who knows thanks for the wise info. love ya girl! marion
I have my pre op 21st of this month I can't wait I've had mine almost 6yrs after my bowel perforated because of my crohns disease but now my crohns is under control and has been for 4 years I'm not thinking of anything else other than to get rid of the bag
I'm not sure I will be able to handle this after what I went through in July 2022. Went to ER with abdominal pain and was admitted. Hospital stay was 2 weeks, I have 2 stomas. 1 is a ileostomy and the other is a mucus fistula. I lost weight and muscle mass, was 130lbs lesft Hospital 105 lbs ( I need to build my body back up ) and now after nearly 6 months, I am 105lbs. Haven't gained 1 lb. Since I've been home. I have a appetite and eat enough to gain weight, been searching for answers with Doctors and I'm thinking my food, vitamins, minerals and trace minerals aren't isn't being absorbed. Meanwhile while having lot's of labs and other tests without getting to the bottom of this. My body presently is not ready for another surgery. I'll be seeing surgeon, she dx me with diverticulitis, hopefully she'll know what's happened... never had any issues with my digestive system in my entire life, I do now. I'm freaking out actually. That's for making this video and glad you're doing well. P.S. one girl in a group I'm in stated that her surgeon gave her exercises to do before her reversal. Like squeezing that Lil muscle at the opening of her butt, sounded like a good idea, logical and she did say that she believed it helped a lot during her recovery, she also stated much of the same you did as well. Best wishes to everyone and please wish me some luck and prayers, thanks again ❤. 🤞🙏🙂
Wow, I hope fixing the diverticulitis will help you to start absorbing nutrients again and allow you to finally gain a little weight. Sending you well wishes 💙
Thanks for sharing vital info. I’m scheduled to have the reversal next month. I’m getting my hospital bag ready now. . I see it as - nothing is worst than the traumatic experience I went thru with chemo. So to be cancer free - with frequent toilet runs… I’ll take it I’d love to know how you’re doing now that your reversal is way down the road. Any tips on living life after the reversal?
Thanks for sharing your own experiences and providing a reasonable explanation for preparations and expectations. I'm due for a reversal of a colostomy next month, and I am wondering about its efficacy. Should I do it or just live with 'the bag'? I'm gonna be 75 in May, and have bounced back considerably since emergency surgery. I consulted with the surgeon today, and asked if he recommended I reverse. He demurred. I asked about the chances for success, and he said " very good". I've seen the pictures of my only ever 2 colonoscopies, and I am rife with diverticuli. ( I think that's the plural in Latin?)
How well have you been handling the colostomy? Even if you do well with the surgery, there will still be recovery time. It’s a tough choice, and one that you’ll ultimately have to make yourself. Make a list of pros and cons to help you.
Please consider your other health issues (comorbidities), and their impact in your life. Are you active? Maybe the bag should go. Are you sedentary? Maybe the bag is not so bad. Ask for a social worker to do a Quality of Life (QOL) assessment. Lastly, consider your age and overall health.
Hello. Thank you for you channel. I have a temporary bag. I just passed the leak test. My reversal surgery is on august 11. I am trying to figure out when I can go back to work. At what point do you think you could have gone to work?
I perforated my bowel due to diverticulitis and had to have a colostomy because I couldn't have the laproscopic surgery. I'm about 6 weeks put from that surgery and due in about 5 months for the reversal. I am terrified. I've been told it's going to be worse than the surgery before and I appreciate all the info in your video to help me be more prepared. They also said there is a chance they go to reverse it and can't and that I would get a new stoma put in and have to wait another six months. That scares me even more!
Had an ileostomy for 14 months after perforated colon from diverticulitis(had to have emergency surgery) I’m recovering from my take down now. Two nights in the hospital now home. Bowel movements are painful but I haven’t lost control and needed diapers
Once my stools started to get a bit more solid it was easier to hold them in. When it’s liquid it’s hard for ANYONE to hold that in, let alone someone that hasn’t used their sphincter for months.
Eh, it gets uncomfortable holding in gas so I will try to be outside, in a large group (so it’s not obvious who it belongs to 😈), or let it out while I’m on the move so it’s not an obvious cloud around me.
I am in the process for my reconnection. In my case I have an iliostomy due to intestinal perforation, I am viable for reconnection BUT I had 2 hernias, so the plan is that they will do both surgeries on the same day, any information they have about this type of procedure would be very helpful for me
I'm really scared about the recovery because taking care of myself I'll have to take care of my butt because of the ilio plus the pain from the hernia surgery...I'm terrified of the pain 🥴🥴🥴🥴
Hello I had my ileostomy reversal and a parastomal hernia repair at the same time in March and my surgeon gave me a block on my abdomen that lasted 96 hours and it was amazing. I felt no abdominal pain and only took some Tylenol after the block wore off. I also had the block when I had my LAR in November. My ask your surgeon if this is an option for you.
@@donnacarlson1976 To be honest, I still need to see the cosmetic surgeon who will be the one to repair the hernias. I will only see it next week and it will be one of the questions that I will ask. thank you very much any tip you offer me will be great for me
@@donnacarlson1976 Actually, I didn't even know that gastroenterology surgeons didn't repair hernias. but this disease teaches me something new every day
typically when you have rectal cancer. Or you had a sigmoid cancer that was near the anal verge you will probably have some incontinence issues. If you're tumor was further in like 35 - 40cm from the anal verge you will have an adjustment period but you probably won't be to bad as far as bowel movements and will regain 100% normal bowel movements in short order.
ileostomy reversal one week ago. thank you for all the info in video and also in comments, which i am implementing. but please someone tell me this butt pain will improve, and an approximate timeframe of when. i know everyone is different but big difference between a month and a year. thank you so much for making this video.
Once I was given the green light from my surgeon to take medications, that’s when I finally saw a huge improvement and relief. That was at my first follow up appointment with him about 2.5 weeks after the surgery.
Hello dear, I got my ileostomy reversed 7 days ago, and am currently visiting the toilet every now and then. Will the number of visits eventually decrease in the coming months without taking Metamucils?
I had my ileostomy reversal back on March 17th and now I'm 45 days into recovery and I've tried every kind of creams and nothing is working from the skin rawness any help would be appreciated I do sitz bath and the bidet also
I just did my reversal 1 month ago. I have alot of constipation issues and now develop a hernia. So ibhave another surgery to do. I was in the hospital 9 days.
Great info, was there any pain from gas or passing gas through the large intestine, colon and rectum for the first time since it hadn't been used? Trying to make sure what is normal pain and what pain should be recognized as warning pain that something is wrong. Thank You from Orlando Florida
Hi I went through ileostomy reversal 10 days back. Since last 1 week I am passing loose stool and my rectum and surrounding area burns burns burns like hell each time I pass the loose stool. I was told to apply MEBO, EMLA and now EMOFLON, however nothing works and no one know what to be done. Is it my food (eggs, bread, white rice, banana, chicken) or my LAR anastomosis or irritated skin or all of the above. Don’t know what to do. Any help will be appreciated
Hey there,well done you strong soul,bless My mum had reversal surgery 9 days ago,she is having butt pain and also involuntary passing of stool,she can’t control is so she’s using diapar,can you tell me how much time it takes to stop involuntary bowel movement and to stop butt pain
I started eating a low-residue diet after a week and that helped some, but once my surgeon approved me to take psyllium husk and Imodium I really started to feel relief. That was after about 2 weeks.
Just to update I’ve had my reversal and my bowel movements are questionable as everyone has said. Yesterday I had a very bad day where I was so gassy and passing LOTs of liquid which sucks the life out of me. The consistency around five days later is variable. It feels like my large bowel is gradually getting back to what it used to do. But I hate how sore it gets when you have bad days and go a TON. I’m not incontinent but worry if I’m not close to a toilet when the urge gets bad.
@@SurvivorJelena thankyou Jelena. It appears my stool consistency is going back to solid now. It’s just very uncomfortable when I walk. I have a hole in my abdomen like most after this sort of surgery. I am however worried as a few days ago It felt like hernia pain you know when the bowel gets trapped. It hurt so bad for a few minutes and ever since is just sore.
I can never go to the bathroom as it is now, do you think I’ll go to the bathroom after the reversal ? Does the reversal make you go all of a sudden etc
A lot depends on your type of surgery. I had half of my rectum and 6 inches of my sigmoid colon removed. It’s been three years since my reversal and I cannot stop taking Imodium twice a day or else I’ll have severe diarrhea. There’s usually sense of urgency. Sometimes a very strong sense of urgency. Which I think is because part of my rectum was removed. You can do pelvic floor exercises to see if that helps. And I usually have around 5 bowel movements per day. Clustered during a few hour period in the afternoon. At those times it’s difficult for me to be far from a bathroom.
Hi , I have 5 years old daughter who got Ileostomy Reverse Surgery before a month, all is set now except Butt - Burn and Itching, what is your suggest for her , we tried butt paste, zinc oxide, triple paste, no sting spray , mylanta mix with zinc oxide. Nothing is working as expected. Please suggest and help us.
Have her bowel movements slowed down in frequency yet and become more formed? If not I would suggest working on that. Going less often and the stool being formed will help the irritation a lot.
yeah my problem here men it wasn't easy. Anything take strong some pains and pads for relief the pain and medication pads cleaning the underneath and try ontimaint creams underneath the butt and drinks alot of water and veggies and vegetables. Takes about a month r so to heal that problem is not fun 😕
After about 2 weeks, once I was allowed to take medications to regulate everything, I could go out of the house. 5 years later I’m still not back to normal.
@@SurvivorJelena I've heard people say that theres no such thing as 'normal' when it comes to reversal. I think its because even after reversal theres still a chunk of bowel missing depending how much is removed and the rest of your digestive system will never truly adapt. But it does at least allow you to live a normal life per say.
Hahahaha, Yeah that thinking is always wrong. Lol. I have had severe Crohn's since before I started school, but nobody would listen to me, I would get my butt beat for being in bathroom all the time. I would go at least 24 times on a slow day. Yeah It was bad 24/7 all my life. My father sparying air freshener up my nose while I was asleep, the abuse because they did not understand/did not want to understand, get me help from Dr. I can write a book on last 50 plus years of my life with Crohn's, the family hate, removal from my family because they couldn't understand and did not want me around. Alone for over 40 years now, except for my sons. Wife ran off with another man because she did not want to deal with Crohn's/hospitals/surgeries, etc. The meds I tried that were not on the market, the surgeries after 27 years of not knowing whats wrong, etc. I would love to meet a woman with Crohn's/Colitis. A friend with Crohns, at least someone to talk too/relate too. I been single since 2013, alone since 2015....
Thanks a lot sister, helpful video, tomorrow i ll make dye rays, preparing for the surgery, 7 months had passed, i think it is a long time, i dont know the rays will be from the anus or from the ostomy slot, and how much time it will take .. there wil be a pain ? ? ... God with you always and your family ...... thx
Are you having a reversal? I think the best thing would be to take it easy for a month or two and not do any heavy lifting or exercise. Take Imodium if need be to make your stool firmer. From what I understand everyone has a tough first few months getting back to normal but once you're through the worst of it you'll be fine. Its one of those stay strong moments.
My tips for internal or external hemorrhoids= use baby wipes unscented to clean instead of toilet paper, use Aquapour cream- with a glove-around the anus and a little inside-because this cream is the most neutral. Take a 15 minutes sitz bath with warm water filled basin adding some dropps of castor oil, OR copaiba oil, OR add also some epson salt, OR baking soda.
I hope it is better in your country but here in New Zealand patients are given almost no advice on managing post surgery, your vid should be compulsory viewing
This is one type of cancer I don't ever want to get I couldn't live like that. Spending all day on a toilet wearing diapers baby creams. What a life. That's not living.
Before any major medical procedure such as this, organ transplant, long term treatment, etc., a social worker does a Quality of Life (QOL) assessment. These people have solid marriages, are attractive, supportive families, good jobs, etc., while someone else may have comorbidities, no family, children, spouse and living in poverty (poor quality of life). Many surgeons won't operate on persons with poor quality of life.
I cannot wait for my reversal, I am praying the day cannot come soon enough, after the procedure I am like I never ever want to see another Ostomy bag for the rest of my life ever again for as long as I live.
praying for you that it really does come soon and that it goes as well as possible!
@@oleggeraschenko4932 thanks hopefully sooner got ct scan in two weeks from today, then 1 week after I meet with my surgeon and to see the results and next steps will be discussed
I'm praying praying for you. My son had his on February 29th, and it took 8.5 hours. He was released this morning. It took him 2 years to heal
Having my reversal next Thursday. I completely agree with never having to look at any coloplast stuff ever again!
That is exactly how I felt and I still feel that way and I’m so glad I had it reversed and even though it was painful, it was worth every second
Thanks for the great information. I am looking forward to my reversal surgery in about two weeks. I hope and pray it all goes well. May God bless everyone who has to live the ostomy lifestyle.
After 3 years with a colostomy I am getting mine reversed in a month . Your video was so helpful, thank you .
I hope your reversal went well bro and healed
I have my colostomy reversal next month, do you mind sharing your experience?
Just had my reversal on the 12th April - still in hospital. Was released but rushed back due to Ileus (blockage) no poop yet but passing some gas,no pain pills either. Sticking with m low fiber diet as well. Praying this takes-I will be 70 in a few months and scared of failure.
Last Nov 23 I was misdiagnosed and suffered ruptured appendix along with colon removal (10 inches) and ovary removal. Thankful no cancer so I was hopeful for the reversal- my heart sunk when I woke from the emergency surgery to know I had a colostomy! The last 5 months have not been horrible but I was not comfortable with “life on the bag” l, the leaks and the odors!!! My grandchildren were SO honest!!
Stay tuned for my next update, my first poop and release
From the hospital.
I just got my ileostomy reversal 4 days ago and so far it is going well.
Mine 15 days now and my butt is on fire😢😢😢 . Couldn't pass stool😢😢
Just had mine a week ago n still struggling passing one, what helped you with the challenge
@@sydwellsydwell2421 it's 3 months now and I'm still struggling. Yesterday got symptoms of prolapse rectum😔
@@sydwellsydwell2421maybe eat veggies fruit gummy’s
@@sydwellsydwell2421how did u deal with it sir? Would love to hear from you. My husband is going through the same case ATM. Vomiting a lot too
I just came from ileostomy reversal surgery I didn't need anything but a robe and maybe my own nightgown and toothbrush. I enjoyed the pain pump for 3 days . They took me off on the 4 th day I used the bathroom and was sent home. 7 days home I recommend baby wipes and a diaper rash cream.
I had a ostomy reversal and I thank God and my surgeon Dr scalea for ridding me of that stinky bag. Thank you God🙏✝️
My wife had her colostomy reversal today. We will definitely follow your advice.
I hope she's recovering ok and is back home soon 💙
Reversal is harder than the cancer operation, it can be very hard. I had my reversal a year ago and it still isn't normal but is getting a lot better. Have to be patient.
Hi Jelena , you came little too late with how to live through the Ostomy reversal for me but for many others you are a God send. I have lived through a living hell post the reversal, 16 years ago when I was 55 . I was diagnosed with having colon cancer which had progressed way beyond second stage. My surgery was a little complicated because of the location of the tumor, therefore and in order to remove the tumor completely, about half inch collar of the rectum muscle had to be shaved off all around along with a foot long colon. After the hours long surgery, I found my self equipped with an illeostomy bag. The surgeon wasn’t sure about the outcome before the surgery because the tumor was too close to the rectum so he couldn’t tell me if I would wake up with a reversible ostomy or a permanent one. Luckily it was possible to equip me with a temporary bag but,,,,,at that moment my miserable year ahead had begun. I haven’t the words to describe the day’s long torture months after coming home , I couldn’t stay away from the ‘seat’ and couldn’t turn off the burning heat as if I have a burning candle with an invisible flame under.. ! My stated prolonged condition was exacerbated because of the partial removal of the rectum wall, consequently making the orifice too tight for easier exit . But now it’s been quite sometime since that experience, I am fully recovered and enjoying my life.
You are so right about the hospital toilet paper for that’s what gave me the first burn 🔥
Been through the same experience myself so I can sympathise with you. A year after the operation it still isn't back to 'NORMAL" but it is getting there.
I want to thank you and I appreciate your knowledge more thank you know. Sometimes people think that they are the only ones that go through something like this, so a very special thank you Jelena. Thank you for being so real and giving yourself to help others. So, after my first surgery (cut 6-inches of Colon; stage-1 cancer gone - thank God), I had the Coniotomy for 6 months; even at work. Then I had the reversal. Every thing you said is true, but I rather deal with this, than the other. Thank you for helping others and I love you as a person for this. I pray for others to get through this long process.
Thanks for watching 💙 I’m happy to hear you’re doing well and that my videos helped you during this difficult time.
🙏🙏
🙏🙏
I get my reversal 10/22, excited and nervous, the ultimate test in patience. Thank you for all the great advice!
@@summerskye2492 My prayers are with you. You'll do fine. The true test is your strength both in body and in mind. You'll be a stronger person for it, again, both physically and spiritually. Life is a up and down thing and this is no different. Like you, I didn't have a choice -being so active as I wanted to be. You have people that care about you and will help you. You are never alone in this. Love and more love.
This information is pure gold! I currently have a temporary ileostomy and hoping to have my reversal surgery soon and I’ll feel prepared.
Thank you 💙
Thanks! My ileostomy reversal is in 3 days, so hearing from those who have made it through the aftermath is super helpful.
My tips for internal or external hemorrhoids= use baby wipes unscented to clean instead of toilet paper, use Aquapour cream- with a glove-around the anus and a little inside-because this cream is the most neutral. Take a 15 minutes sitz bath with warm water filled basin adding some dropps of castor oil, OR copaiba oil, OR add also some epson salt, OR baking soda.
Sorry my mistake, is Aquapour OINTMENT not cream.
May i ask what was the reason you had to have an ileostomy? I had diverticulitis surgery to take out some of my colon, there were complications so now i have one, dr said for only 6 to 8 weeks, so scared!
@@crystalebner954 Same reason as Jelena.
@thedunelady im so sorry, how long did you have your iliostemy
I experienced everything you described before I got my Colostomy. I had a ileostomy for 7 months and after reversal I had severe LARS. 20-30 times in the bathroom. 2 years and never got better. I’m 5 weeks with my Colostomy and I love that I don’t have to be bound to the toilet. I empty my bag 1-2 times a day and don’t have to worry about fecal incontinence. You gave an excellent presentation!
Thank you for the video. Very helpful. One thing I would like to add. When you have an ileostomy, your colon is empty and all the good bacterias died from hunger. So, when you reverse the ileodtomy, it should be preferable to take probiotics for a while, until the bowels come back to normal. Hope this help.
thank you great ida!
your invaluable information lends me tremendous strength and comfort. i can now say i am going into my reversal well prepared. thank you so very much.
You’re welcome!
I DM you on ig for answers on your reversal
Yale hospital threw me out after less than 3 days after my surgery with 0 education and i was in so much pain this has been so helpful
Hello again. After being delayed twice on my ostomy reversal, I finally had it done on August 29. I am three weeks out. The surgeons office said it would be bad, but i had no idea how bad. The first two weeks were horrible. 100+ trips to the toilet, accidents, Butt on fire. I am starting to get better now. Wound has almost filled in. Butt no longer on fire. Still making many trips to the toilet. I don't have much rectum left after surgery. He said it would take 6 months to a year for me to get to a new normal. I plan to go back to work mid October. Thank you for warning me about how bad this would be!!!
Having your butt no longer feel on fire constantly is a huge win. I hope you continue to improve 💙
😮😢 Omg, I’ve been delayed on getting my reversal going on 3 years now… hopefully I get through soon but I’m scared about my butt 😢 But I guess it does sound familiar tho… that’s how my experience was whilst doing radiotherapy. Uncontrollable movements, butt on fire from just Liquid coming out 😩😩😩😩😭😭. I really hope it’s not that bad 🙏🏼🙏🏼🙏🏼
Dear jenina,thx for this great video.haf revetsal on 6/9 in lotd of rectal pressure spadms with no control of bowel going up to 50 times small amount in aday,very discouraged.have othets experienced this,thx
To william horton how are you now,best to you
Gd speed your recovery, and thanks for posting this. i am hoping for november reversal.
Great video! I am about 2 years out from my ileostomy reversal and I am 50/50 on whether I should have had the reversal. I simply cannot eat during the day or I will not be able to perform my job. I probably have 75% control of my bowels. It's a hard decision to make......much love to you and your family!
Thank you! It’s definitely a tough decision. Sending you well wishes 💙
I totally understand how you feel, having the same experience.
Also don’t forget to consider using Imodium to slow down your digestive track thereby reducing the likelihood of having really loose stools. Also using Metamucil at night can help to bulk up stools. Your doctor will have more info on these options. It’s been a year since my reversal and I’m still using Imodium.
My surgeon didn’t want me taking any medications for the first few weeks to let my body adjust. Once I went in for my follow up he allowed me to start Metamucil and Imodium.
@@SurvivorJelena Personally I think its one of those things where if Imodium helps, ignore the doctor. The doctor isn't the one having to sit on the toilet constantly.
@@matthew90276 Is there a danger in using immodium before doctor okays? Would it be better to double-check w/ doc & say you Really need it? Can always Still ignore doc', but maybe they'd say okay. Sometimes I ignore doctors and sometimes it turns out I'm ignorant and they know better.
Thank you so much! my father will be having surgery November 10,2022,and I wanted to make sure he is as comfortable and calm as he possibly can be I appreciate this useful information.
You’re welcome. I hope everything goes well for your father 💙
I had my resection done oct 12 and I’m already going for reversal surgery on Feb 1 that’s next Wednesday I’m so nervous but this video is making it a little better
Hopefully it goes smoothly for you and the first few days after aren’t too miserable 🤞🏼💙
Oh you just had it a month ago! Hi. I'm a stranger who has a reversal scheduled on Monday-in 3 days. I might chicken out because I have really important traveling I have to do and if I wait I'm very likely to lose certain relationships forever and one of them is my family and it means more than life itself to me. Well almost. I could have done mine 3 months out also but there kept being all these scheduling conflicts and hesitations because my living situation is messed up. Also I had insurance issues but they've been straightened out. So for me it's already exactly a year and I didn't want to keep waiting because I'm scared it will be harder to recover. Different medical personnel tell me different things. Anyhow how are you doing? If I can be so annoying as to ask you to write on TH-cam more. You don't have to I just happen to be completely alone but it's my fault. I have a colostomy. I'm very curious as to how you are doing and how it went and how it's going. I guess I'm going to do mine or not do it and it's up to me. But if you feel like answering I'm very grateful. But I'm sorry to be bothering a stranger.
Thank you for making this video, I have my reversal surgery coming up in 5 days. And I have no idea what I will be facing. My surgeon did say this surgery is a lot easier than my last one with part of my colon taken out. Thank you again
I hope your reversal went well and you’re healing back at home 💙
@@SurvivorJelena Thank you, Surgery went well, for anyone else about to go through it. the pain level after surgery is not as bad as your other surgery. And I will stress this as much as possible. they want you to get up and start walking around. I did that as much as possible. I know my goal was to pass wind and then pass poop. which it was hard to pass poop when all you could eat was liquids, Also, Don't trust a fart. make sure you are on the toilet, Now for me I am 2 weeks after surgery at home, a couple days ago the doctor took my staples out. I am on no pain medication at all. You can do it. and do take the supples to the hospital they really do help.
This helps a lot, I'm 23 years old I had my first surgery which was a loop ostomy. Same exact case as yours except I had over 2000 polyps throughout my colon and rectum, 4 months later I had my reversal done. Its my first week and I've been living in the bathroom basically :(. R.I.P. my butt thanks for the information as I will be taking the advice👍
That first week is, ugh! I hope things start to improve little by little for you soon 🤞🏼💙
2000?
@@nashville2983 yes over 2000 polyps(familial adenomatous polyposis)
Thank you so much I was shot and I still have mine my reversal is in November your video made me worry less and thanks for the tips
Wow, I’m so sorry. I hope the reversa surgery goes well for you.🤞🏼
@@SurvivorJelena good to know you are finally cured and now you probably feel like you felt when you were 18-years old in a brand new body
I wish! This brand new body is missing a few parts and is a bit worn down from chemo and radiation, plus going into menopause 🤪 I’m happy that it’s carried me through this, but I definitely don’t feel 18.
@@SurvivorJelena Hello Jelena, i appreciate your response. i did not know you were going through the things you mentioned in your comment. You are correct, chemo and radiation can be a very big burden on the body even after it is over. I really wish you an abundance of health, joy and happiness in life. you have inspired many to hope for healing and be open about talking about it.
My husband also has stage 3 rectal cancer. He is about to have his LAR surgery. thank you so much for the information! it helps a lot! ❤
Surgery in two weeks the first surgery adding the stoma will get these items thanks for info my low tolerance for pain makes me nervous for a long hospital stay
Just make sure to communicate that with the nurses as they’re taking care of you as you’re recovering in the hospital. Hopefully if it is taking too long they can give you some fiber or something to help move things along a little. They want to see you recovering too.
How you’re doing ok
I went though everything you mentioned and now I am doing well. I am heathy due the surgeries and I have that last hurdle(s) in the bathroom to get through - but it's part of the process. Knowing that, you'll understand. But I am almost back you normal. God be with you and you'll be done before you know it - and back to your former self like myself.
Yes sir this is the number one reason I kept my ileostomy. Too many unknowns. What I do know is I can fly and not be worried about having to bust it for the bathroom somewhere it mid flight or leaking. Everyone is different so you do you. It should be said that reversals can have issues and you can end up having another reversal. Thanks for sharing Jelena
Very true. Lots of unknowns.
I’ll have my reversal in a few weeks. This is by far the best information on TH-cam.
Thank you ☺️
Thank you for all the helpful information. I've decided not to get the reversal. I am 70 yrs. old and just don't want to go through another hospital stay or surgery. I seem to be managing ok with the ileostomy and have a part time job. I've not told the surgeon yet. God bless you and your family.
The surgeon will hopefully be just fine with your decision. If you’re managing fine with the ileostomy I totally understand why you’d want to keep it and not deal with the unknown of the reversal plus another hospital stay. Best of health to you 💙
from my opinion, make it, my surgeon said it is a simple surgery, the days will go and you be fine ...
You should ask if they can give you a Colostomy from your Sigmoid colon. I hear that would give you near normal bowel movements and make life so much easier for you.
I am beyond thankful for this information. In two days I go have my reversal done. I’ll be going to either Walgreens or WalMart for supplies. Thank you so much. Bless you.
Happy to help! I hope your surgery goes well 💙
I was diagnosed with stage III bowel cancer in May 21 and had a stoma bag attached. Chemo done and have (hopefully) now come through the worst of it all. I’m in hospital one week from tomorrow to have it removed, which I have been looking forward to for so long. Im terrified again of the whole surgery thing, but now this has really got me worried. Ive been thinking about the whole training my butt thing and hoping for the best. I’ve kept myself fit and strong through the journey by keeping up my swimming, gym and even recently, went back to playing rugby lol
So many things I wasn’t prepared for the first time around though - Such as still having the urge to have bowel movements from time to time, which was a surprise. Thanks for presenting so informatively and honest. Really appreciate how informative you have been. Cheers.
Best of luck to you as you prep for surgery 💙
@@SurvivorJelena Thank you 🙏
Did you have surgery for your bowel cancer
thanks jaleena! goin in may 13th 2024 excited and scared at the same time.
GOD BLESS
I hope it goes well for you! 💙
Wet wipes are handy as well like Cottonelle.
Wish I had watched this before my surgery been learning as I go
Thank you for sharing! Getting reversed in 10 days!🎉
You’re welcome! Hope all goes well 💙
I just got shot last year when I was 19 and was in a coma for 44 days and I woke up with that thing and it freaked me out but I learned more about it and got used to it but I’m 20 now and June 13th is my appointment to see if my colon is healed for the reversal I’m so excited now I’m 20 and I’m ready
Thank you for the information. I was told that my reversal surgery is less than 5 months. God bless you.
My ileostomy surgery had me in hospital for about three weeks. It worked out well as the staples could be removed from the comfort of my hospital bed rather than at home. Sure the staple removal wasnt as comfortable as you'd expect with 20+ staples coming out but it was the best place to have it done. It was mostly because I had holes to my bladder & large bowel & abdomen so plenty of stuff had to be repaired.
I'm also due my reversal within the next few months. My large bowel is completely intact though my sigmoid colon is looking questionable. They're aiming to have me reversed properly though a Colostomy is an option if need be. It has been almost a year since the surgery and I'm somewhat worried my butt muscles are probably not the best so a Colostomy would probably be best. I'm one of those patients if something can go wrong it usually does.
It’s a big decision to make whether to reverse it or not. It sounds like you and your doctors are preparing for multiple options, so what counts the most is that you’re at peace with your decisions. 💙
I had a 3 week stay in the hospital with numerous complications with my Ileostomy. I'm exactly 1 month in and will hopefully have my reversal in July depending on what my oncologist says. I'm contemplating not getting chemo this time around.
@@SurvivorJelenaHi Jelena my reversal went well. They did a side to side anastomosis last August and my only complication seems to be constipation lol
@@margaretherreraI hope your reversal goes well. All the best to you. With me they did a sigmoidoscopy while I was asleep to check the area to see if the original repair healed(which it had). After I woke up I was a bit tired and had diarrhoea for a few days but things quickly went back to normal. Basically I had a lot of mucus which made me sit on the toilet almost every day straining and I think my butt muscles were strengthened after years of doing that.
The bidet idea is on point. I would just incorporate in some epsom salt or something stronger if using a portable one. The salts help with inflammation and keeping you fresh without any residue.
Fantastic video ,packed with great info,thank you so much.
Glad you liked it 😀
Awesome video. Thank you for all the good info. I had my reversal done a week ago, its just a 1 day at a time kinda thing. Gid blees
Hi..I am sharmila Ravindranath from India
I am 58 years old and had lower rectum cancer..got the robotic surgery done on 5th December and the ileostomy surgery on the 12th February
That after effects of surgery with loose stools worries me a lot..your video helped me a lot in understanding the problem..so happy to know that it is all very common and takes time..thank u so much for sharing the information..looking forward for more details on the diet and how u have overcome with it..take care..love you
Happy to help 💙
I really thank you Jelena for encouraging ileostomy patients. I am also a ileostomy patient. Should I go through reversal surgery? listening others experience , they have suffered badly after reversal. What would be better ? plz suggest me.
Thank you soo much for this!! My bf is having his surgery soon and there is nowhere else that I could find this information (i looked for hours at different home health and medical sites)
You’re welcome! Happy to help. 💙
I just want to thank you - your tips were so helpful and on point! You REALLY helped me!
Happy to help!
I had emergency temporary Ostomy surgery/Colostomy on October 2 because of Diverticulitis in my Sigmoid Colon and 1, possibly 2 fistulas. At this same time, I had Covid Pneumonia. I wasn’t able to leave the hospital as soon as the doctors thought I’d be able to because of then having Diverticulitis in my Stoma. ..🙄
So I left the hospital on my 11th day of being there. ..🎉
I’m still recovering. I’m supposed to have reconnection surgery in 6 months or after 6 months. I’ve been afraid of how painful that’s gonna be. I’m trying to give it all to God but I still have fear of the pain. I’ve been told it’s no worse than the pain I’ve already been through.
I’ve suffered from several pouch blow outs since being discharged from the hospital and my skin looked burnt. It was very, very painful.
As much as I’m sick of the pouches I’m fearful of what’s to come. There is the possibility that I won’t be able to be reconnected too. I may not have any good colon. It really sucks also having Diverticulitis where my stoma is.
Thanks for this video. It gives me something to prepare for.
I made yest. the petscan, the final result will be at sat. but the doctor said nothing appear for me, you are normal .. may God help me always .. waiting till sat.
Thanks for including my favorite tip with chronic diarrhea. A bidet has saved my butt. It can save yours too. Price about $35-$40 on 1/23.
The doctor should recommend that a bidet be installed before you go home from this surgery!! It would have been a lifesaver! I have to be absolutely pristinely clean or anything left behind will eat the skin in that area. Ugh.....
hi jaleena, GOD BLESS YOU!! im goin in on the 13th of may for my reversal, got my stuff packed and ready, hope i dont have any issues!
but who knows thanks for the wise info.
love ya girl!
marion
I have my pre op 21st of this month I can't wait I've had mine almost 6yrs after my bowel perforated because of my crohns disease but now my crohns is under control and has been for 4 years I'm not thinking of anything else other than to get rid of the bag
I'm not sure I will be able to handle this after what I went through in July 2022. Went to ER with abdominal pain and was admitted. Hospital stay was 2 weeks, I have 2 stomas. 1 is a ileostomy and the other is a mucus fistula. I lost weight and muscle mass, was 130lbs lesft Hospital 105 lbs ( I need to build my body back up ) and now after nearly 6 months, I am 105lbs. Haven't gained 1 lb. Since I've been home. I have a appetite and eat enough to gain weight, been searching for answers with Doctors and I'm thinking my food, vitamins, minerals and trace minerals aren't isn't being absorbed. Meanwhile while having lot's of labs and other tests without getting to the bottom of this. My body presently is not ready for another surgery. I'll be seeing surgeon, she dx me with diverticulitis, hopefully she'll know what's happened... never had any issues with my digestive system in my entire life, I do now. I'm freaking out actually. That's for making this video and glad you're doing well. P.S. one girl in a group I'm in stated that her surgeon gave her exercises to do before her reversal. Like squeezing that Lil muscle at the opening of her butt, sounded like a good idea, logical and she did say that she believed it helped a lot during her recovery, she also stated much of the same you did as well. Best wishes to everyone and please wish me some luck and prayers, thanks again ❤. 🤞🙏🙂
Wow, I hope fixing the diverticulitis will help you to start absorbing nutrients again and allow you to finally gain a little weight. Sending you well wishes 💙
Thanks for sharing vital info. I’m scheduled to have the reversal next month. I’m getting my hospital bag ready now. . I see it as - nothing is worst than the traumatic experience I went thru with chemo. So to be cancer free - with frequent toilet runs… I’ll take it
I’d love to know how you’re doing now that your reversal is way down the road. Any tips on living life after the reversal?
How are you doing now ? I hope all is good. My partner will be going for surgery next week and i am worried.
Thanks for sharing your own experiences and providing a reasonable explanation for preparations and expectations.
I'm due for a reversal of a colostomy next month, and I am wondering about its efficacy. Should I do it or just live with 'the bag'?
I'm gonna be 75 in May, and have bounced back considerably since emergency surgery. I consulted with the surgeon today, and asked if he recommended I reverse. He demurred. I asked about the chances for success, and he said " very good". I've seen the pictures of my only ever 2 colonoscopies, and I am rife with diverticuli. ( I think that's the plural in Latin?)
How well have you been handling the colostomy? Even if you do well with the surgery, there will still be recovery time. It’s a tough choice, and one that you’ll ultimately have to make yourself. Make a list of pros and cons to help you.
Please consider your other health issues (comorbidities), and their impact in your life. Are you active? Maybe the bag should go. Are you sedentary? Maybe the bag is not so bad. Ask for a social worker to do a Quality of Life (QOL) assessment. Lastly, consider your age and overall health.
Very helpful 🙏🏻
Thank you 💙
You have scared me! I'm to get mine the first of July.
Hello. Thank you for you channel. I have a temporary bag. I just passed the leak test. My reversal surgery is on august 11. I am trying to figure out when I can go back to work. At what point do you think you could have gone to work?
If it’s not a physically demanding job, in probably 2-3 weeks. Congrats to passing the leak test 🥳
Mine is also august 11th !!!!!!!!!!!
The Leak Test was discomfort able but very necessary. Big Machine over you - LOVE to you
I perforated my bowel due to diverticulitis and had to have a colostomy because I couldn't have the laproscopic surgery. I'm about 6 weeks put from that surgery and due in about 5 months for the reversal. I am terrified. I've been told it's going to be worse than the surgery before and I appreciate all the info in your video to help me be more prepared. They also said there is a chance they go to reverse it and can't and that I would get a new stoma put in and have to wait another six months. That scares me even more!
Best of luck to you - I hope the first surgery is successful and you have a smooth recovery.
Had an ileostomy for 14 months after perforated colon from diverticulitis(had to have emergency surgery) I’m recovering from my take down now. Two nights in the hospital now home. Bowel movements are painful but I haven’t lost control and needed diapers
For how long can one expect leakage after the reversal is done? Thank you
Once my stools started to get a bit more solid it was easier to hold them in. When it’s liquid it’s hard for ANYONE to hold that in, let alone someone that hasn’t used their sphincter for months.
@@SurvivorJelena thank you for your reply Jelena. How about gas, is it easy to keep them in if you have to go to a social event of some sort?
Eh, it gets uncomfortable holding in gas so I will try to be outside, in a large group (so it’s not obvious who it belongs to 😈), or let it out while I’m on the move so it’s not an obvious cloud around me.
@@SurvivorJelena funny and useful reply , thank you !
I am in the process for my reconnection. In my case I have an iliostomy due to intestinal perforation, I am viable for reconnection BUT I had 2 hernias, so the plan is that they will do both surgeries on the same day, any information they have about this type of procedure would be very helpful for me
I'm really scared about the recovery because taking care of myself I'll have to take care of my butt because of the ilio plus the pain from the hernia surgery...I'm terrified of the pain 🥴🥴🥴🥴
Hello
I had my ileostomy reversal and a parastomal hernia repair at the same time in March and my surgeon gave me a block on my abdomen that lasted 96 hours and it was amazing. I felt no abdominal pain and only took some Tylenol after the block wore off. I also had the block when I had my LAR in November. My ask your surgeon if this is an option for you.
@@donnacarlson1976 To be honest, I still need to see the cosmetic surgeon who will be the one to repair the hernias. I will only see it next week and it will be one of the questions that I will ask. thank you very much any tip you offer me will be great for me
@@donnacarlson1976 Actually, I didn't even know that gastroenterology surgeons didn't repair hernias. but this disease teaches me something new every day
Thanks for helping out, Donna. I’ve never had a hernia so I can’t help out with this question.
typically when you have rectal cancer. Or you had a sigmoid cancer that was near the anal verge you will probably have some incontinence issues. If you're tumor was further in like 35 - 40cm from the anal verge you will have an adjustment period but you probably won't be to bad as far as bowel movements and will regain 100% normal bowel movements in short order.
Thank you very much for clear information.
You're welcome 💙
Thank you for your informantions❤
You’re welcome 💙
Mine is scheduled for 26 August 2024. How many days post op were you before you were permitted to release from hospital or travel by air?
ileostomy reversal one week ago. thank you for all the info in video and also in comments, which i am implementing. but please someone tell me this butt pain will improve, and an approximate timeframe of when. i know everyone is different but big difference between a month and a year. thank you so much for making this video.
Once I was given the green light from my surgeon to take medications, that’s when I finally saw a huge improvement and relief. That was at my first follow up appointment with him about 2.5 weeks after the surgery.
Hello dear, I got my ileostomy reversed 7 days ago, and am currently visiting the toilet every now and then. Will the number of visits eventually decrease in the coming months without taking Metamucils?
It definitely can. Things are still changing and adjusting a lot for the first 6-12 months.
I had my ileostomy reversal back on March 17th and now I'm 45 days into recovery and I've tried every kind of creams and nothing is working from the skin rawness any help would be appreciated I do sitz bath and the bidet also
You can try calling your doctors office to see if they can prescribe a stronger cream to help your raw skin.
I just did my reversal 1 month ago. I have alot of constipation issues and now develop a hernia. So ibhave another surgery to do. I was in the hospital 9 days.
Great info, was there any pain from gas or passing gas through the large intestine, colon and rectum for the first time since it hadn't been used? Trying to make sure what is normal pain and what pain should be recognized as warning pain that something is wrong. Thank You from Orlando Florida
I didn’t have any pain. Just issues of control and urgency. It also takes about a month for the ostomy wound to close and fully heal.
Hi
I went through ileostomy reversal 10 days back. Since last 1 week I am passing loose stool and my rectum and surrounding area burns burns burns like hell each time I pass the loose stool. I was told to apply MEBO, EMLA and now EMOFLON, however nothing works and no one know what to be done. Is it my food (eggs, bread, white rice, banana, chicken) or my LAR anastomosis or irritated skin or all of the above. Don’t know what to do. Any help will be appreciated
I was in there for 2 months so 5 days would be nice
Hey there,well done you strong soul,bless
My mum had reversal surgery 9 days ago,she is having butt pain and also involuntary passing of stool,she can’t control is so she’s using diapar,can you tell me how much time it takes to stop involuntary bowel movement and to stop butt pain
I started eating a low-residue diet after a week and that helped some, but once my surgeon approved me to take psyllium husk and Imodium I really started to feel relief. That was after about 2 weeks.
@@SurvivorJelena could you control your bowel then ? What did you do to stop anal pain
Just to update I’ve had my reversal and my bowel movements are questionable as everyone has said. Yesterday I had a very bad day where I was so gassy and passing LOTs of liquid which sucks the life out of me. The consistency around five days later is variable. It feels like my large bowel is gradually getting back to what it used to do. But I hate how sore it gets when you have bad days and go a TON. I’m not incontinent but worry if I’m not close to a toilet when the urge gets bad.
I had a side to side anastomosis and for the most part all seems well. I have a small hole in my abdomen from the surgery which freaks me out. 😂
I hope you're continuing to improve. I totally understand how a few bad episodes on the toilet are draining!
@@SurvivorJelena thankyou Jelena. It appears my stool consistency is going back to solid now. It’s just very uncomfortable when I walk. I have a hole in my abdomen like most after this sort of surgery. I am however worried as a few days ago It felt like hernia pain you know when the bowel gets trapped. It hurt so bad for a few minutes and ever since is just sore.
I hope you’re doing good and that life is good to you 🙏😊
I can never go to the bathroom as it is now, do you think I’ll go to the bathroom after the reversal ? Does the reversal make you go all of a sudden etc
A lot depends on your type of surgery. I had half of my rectum and 6 inches of my sigmoid colon removed. It’s been three years since my reversal and I cannot stop taking Imodium twice a day or else I’ll have severe diarrhea. There’s usually sense of urgency. Sometimes a very strong sense of urgency. Which I think is because part of my rectum was removed. You can do pelvic floor exercises to see if that helps. And I usually have around 5 bowel movements per day. Clustered during a few hour period in the afternoon. At those times it’s difficult for me to be far from a bathroom.
Hi , I have 5 years old daughter who got Ileostomy Reverse Surgery before a month, all is set now except Butt - Burn and Itching, what is your suggest for her , we tried butt paste, zinc oxide, triple paste, no sting spray , mylanta mix with zinc oxide. Nothing is working as expected. Please suggest and help us.
Have her bowel movements slowed down in frequency yet and become more formed? If not I would suggest working on that. Going less often and the stool being formed will help the irritation a lot.
It’s been 1 year since my reversal and am still feeling pain every day can’t stop the acid
yeah my problem here men it wasn't easy. Anything take strong some pains and pads for relief the pain and medication pads cleaning the underneath and try ontimaint creams underneath the butt and drinks alot of water and veggies and vegetables. Takes about a month r so to heal that problem is not fun 😕
How long does burning pain last ? My stool is type 4...perfect but burns to the point i want to cry. Im 3 weeks post reversal ....
It will hopefully stop soon, especially if your stools are normal-shaped.
very helpful information. thank you so much. how long before you back to normal ?
After about 2 weeks, once I was allowed to take medications to regulate everything, I could go out of the house. 5 years later I’m still not back to normal.
@@SurvivorJelena I've heard people say that theres no such thing as 'normal' when it comes to reversal. I think its because even after reversal theres still a chunk of bowel missing depending how much is removed and the rest of your digestive system will never truly adapt. But it does at least allow you to live a normal life per say.
Thank you
You’re welcome!
5 days is a walk in the park compared with my poor mother who spent two months in the hospital after the same operation.
Oh my gosh, I'm so sorry. I hope she's doing ok now.
7 months out and having incontinince daily,15 bms aday,sore bum..vey frustrated!
I still have Diarrhea after almost a year of surgery is this normal?
If it’s multiple times a day I would check with your surgeon for help.
What kind of reversal did you have
Are these accidents -anal incontinence-restricted to just a few days after the surgery or is it life long?
It was only temporary for me.
Hahahaha, Yeah that thinking is always wrong. Lol. I have had severe Crohn's since before I started school, but nobody would listen to me, I would get my butt beat for being in bathroom all the time. I would go at least 24 times on a slow day. Yeah It was bad 24/7 all my life. My father sparying air freshener up my nose while I was asleep, the abuse because they did not understand/did not want to understand, get me help from Dr.
I can write a book on last 50 plus years of my life with Crohn's, the family hate, removal from my family because they couldn't understand and did not want me around. Alone for over 40 years now, except for my sons. Wife ran off with another man because she did not want to deal with Crohn's/hospitals/surgeries, etc. The meds I tried that were not on the market, the surgeries after 27 years of not knowing whats wrong, etc. I would love to meet a woman with Crohn's/Colitis. A friend with Crohns, at least someone to talk too/relate too. I been single since 2013, alone since 2015....
Have you tried looking for online groups for people with Crohn's/Colitis?
Desitin….Desitin…Desitin…. Even in my purse now!!!!
Thanks a lot sister, helpful video, tomorrow i ll make dye rays, preparing for the surgery, 7 months had passed, i think it is a long time, i dont know the rays will be from the anus or from the ostomy slot, and how much time it will take .. there wil be a pain ? ? ... God with you always and your family ...... thx
Are you having a reversal? I think the best thing would be to take it easy for a month or two and not do any heavy lifting or exercise. Take Imodium if need be to make your stool firmer. From what I understand everyone has a tough first few months getting back to normal but once you're through the worst of it you'll be fine. Its one of those stay strong moments.
Hi Jelena could share your diet pls
I’ve done 2 videos on what I eat over a week: th-cam.com/video/0StMM7_wSDw/w-d-xo.html and th-cam.com/video/h21A49gbryw/w-d-xo.html
Please tell me you are well and over this episode 2 years later.
Yes, definitely!
What is the butt paste u have?
My tips for internal or external hemorrhoids= use baby wipes unscented to clean instead of toilet paper, use Aquapour cream- with a glove-around the anus and a little inside-because this cream is the most neutral. Take a 15 minutes sitz bath with warm water filled basin adding some dropps of castor oil, OR copaiba oil, OR add also some epson salt, OR baking soda.
Sorry my mistake, it is Aquapour OINTMENT not cream.
I hope it is better in your country but here in New Zealand patients are given almost no advice on managing post surgery, your vid should be compulsory viewing
Seriously about the hospital's toilet paper wtf lol it would be good sandpaper 😂
😂😂😂
I’m thinking of still eating my veggie and fruit gummy’s
VASELINE.
There was no accidents after surgery at all… none ….so that is not true.
Gimme the drugs!
This is one type of cancer I don't ever want to get I couldn't live like that. Spending all day on a toilet wearing diapers baby creams. What a life. That's not living.
Before any major medical procedure such as this, organ transplant, long term treatment, etc., a social worker does a Quality of Life (QOL) assessment. These people have solid marriages, are attractive, supportive families, good jobs, etc., while someone else may have comorbidities, no family, children, spouse and living in poverty (poor quality of life). Many surgeons won't operate on persons with poor quality of life.
Amazing advice thank you
You’re welcome 💙