Post colostomy reversal experiences...

For discussing ostomies that are intended to be temporary, and the reversal/takedown of such ostomies.
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sassie
Posts: 164
Joined: 2018-10-19 19:22:16

Re: Post colostomy reversal experiences...

Post by sassie »

Had a reversal last Sept. 25, was no need for adjusting,I also had emergency surgery because of diverticulitis and during the reversal they removed all but 6 inches of my colon, but all has gone smooth,I did have a stroke i think because my surgery took so long, over 8 hours due to unexpected things the surgeon found and fixed, but outside of the stroke, I have no regrets at all....I just did not have to adjust at all, was like it used to be and that was great... I do not miss "ALICE" one bit... Think positive , your going to be happy....


sassie
VLG
Posts: 1
Joined: 2020-06-14 17:21:16

Re: Post colostomy reversal experiences...

Post by VLG »

I just wanted to add my positive experience with my ileostomy take down. Unlike some people I only had to have the ileostomy for 4 months. I had a carcinoid tumor. I had to have to have some of my intestines removed to remove the cancer. I had read horror stories that some people had published about take downs. I was afraid to have mine. I soon decided that I needed to find positive feedback. I just want to let others know that I had a great result. It has only been 4 weeks since the takedown. My bowels are nearly normal already. It has been a positive experience for me. I had an amazing surgeon who I greatly respect and am so grateful for. I am grateful to currently be cancer free. If anyone is considering a take down just know that some of us have had very positive results. Good luck
Chosen
Posts: 2
Joined: 2020-06-19 18:51:29

Re: Post colostomy reversal experiences...

Post by Chosen »

I had my take down about 18 mos. ago. I have little to no warning when my jpouch is going to empty. I also experience gas & at times, a type of constipation.
I would be grateful for any feedback anyone could submit.
My current unpredictability has affected both socially & psychologically.
Mona Pea
Posts: 2
Joined: 2020-06-27 15:40:10

Re: Post colostomy reversal experiences...

Post by Mona Pea »

I had an emergency surgery due to a perforated bowel on March 8 and ended up with a huge scar from my belly button about 3 1/2 inches down. I had the wound healed with a wound vac and it has left a very deep scar. I totally look like Frankenstein. I had a colostemy bag which I hated and had it reversed about a week ago - June 18th. I am currently in very bad pain. I have no energy. I am depressed and have been ever since the rug got pulled out from under my life almost 4 months ago. The Doctor said everything went great but I get no answers on when I can expect to return to normal - if ever. I can barely shower myself and my hair has been falling out since the first surgery. It is fairly long but now it is so thin I don't know what to do, it comes out by the handfuls every time I touch it. Doctor says it is normal from surgery shock to my body. But I am most concerned about how long it should be before I can do anything. I don't even know what to wear so it's mostly long shirts and panties which I really can't go out in. Staples are still in my belly from the reversal and I have them scheduled to come out some time next week. Just wondering how long is normal for recovering from what the doctor says was a very good surgery.
Mona Pea
Posts: 2
Joined: 2020-06-27 15:40:10

Re: Post colostomy reversal experiences...

Post by Mona Pea »

One more thing about my recent reversal. I have almost no strength to get up. I need help being pulled up or have to grab on to something and roll over like a turtle. I cannot get comfortable in any position. Anyone else have the same issue? What kind of exercises did you do? I am terrified of ripping my stapled intestine apart. I have heard it never grows back together.
Miasophia
Posts: 2
Joined: 2019-07-13 06:41:48

Re: Post colostomy reversal experiences...

Post by Miasophia »

I am a few weeks into my reversal and am so happy I had it done. After several years and many surgeries, due to diverticulitis, I had my first colostomy in Jan of 2019. The plan was to wait 90 days then reverse. That didn’t happen. I had many complications including hernias, infections, bowel leakage and ended up having emergency surgery in May of 2019 which resulted in a closure of the original Ostomy and the creation of a new one along with losing more bowel. My hospital stay was long and I was in rehab and hospital until September. My second Ostomy was easier to manage as it did protrude slightly above the skin. The first was actually recessed. So, I prepared to take a vacation in in late January and my Ostomy reversal was scheduled for late February, upon my return. Barely a week into my vacation, I became violently ill and made a flying trip home going directly to the hospital. With all the issues I’d had, seeing a doctor in another facility terrified me. Upon arrival at my hospital it was quickly determined I had a blockage and I was taken directly to surgery within a couple of hours. While the surgery was preformed by one of the surgeons who knew my history, my surgeon was out of town. To this day I kick myself for not calling his cellphone. He fussed at me as well! The decision was made to reverse my colostomy during the surgery. Apparently, things went well for about 3 days after surgery. I even have a text I sent my husband that reads “I pooped!” I remember none of this. On the fourth day my temp spiked and my surgeon returned, thank God. I’d developed a roaring infection. I have short memories of my surgeon opening an abscess saying “this is why we don’t close them” to his PA. Apparently at that point I was sent for a CAT scan and my colon opened while in the CAT lab. Back to surgery. I awoke to, you guessed it, a new Ostomy. I spent about 3 weeks in the hospital and 6 weeks in rehab, again. My body and mind had gone through so much, I could barely function. I couldn’t think 2 seconds ahead. After finally getting home, I began to think of getting rid of the pouch. None of my Ostomy shave been nice. All were recessed, except for the second. Very hard to manage and I felt like I was imprisoned by them. So plans were made that if I were healthy enough we would do a reconnect with ileostomy August 13 2020. It actually happened! Almost nine hours of surgery but it worked. The ileostomy was a mess from day one. Almost impossible to get a pouch on. After a week my surgeon allowed me to go home for a weekend to see if I could manage it. I did. For 4 weeks. On September 17, I could no longer keep a pouch on. Went to my surgeons office and was admitted. The plan had been to wait for 90 days to close the ileostomy but it became apparent that couldn’t happen. Testing was done that after noon and my reversal was done on Sept 18. So tomorrow I’ll be one month out. No pouch, yay, I had a bm the second day after surgery, lots of pain, this one hurts more and so far no urgent, crazy dashes to the bathroom and no constipation. I haven’t had the sore bottom, tip, Pampers unscented wipes have been great, nor have I experienced some of the other painful things I’ve read. I have been eating pretty well. I’ve been a bit nauseous at times. Some of that I’ve attributed to pain meds. I have an open wound whet the ileostomy was removed which is where my pain is. It has to be packed daily and it hurts. I am, at this point, extremely grateful to be rid of the pouch. Unlike some, my quality of life was altered to the point of being nonexistent with them. Always a problem, except for one. I wish the best for anyone traveling this journey and have high hopes this will be my last surgery.
Baxter
Posts: 1
Joined: 2020-11-29 18:51:30

Re: Post colostomy reversal experiences...

Post by Baxter »

Hoping (?) to have reversal on Friday - thank you for this board - i appreciate reading about your experiences.
Bradj
Posts: 3
Joined: 2021-02-15 12:59:51

Re: Post colostomy reversal experiences...

Post by Bradj »

I would like to know if the success of the reversal depends on the type of colostomy? Does a sigmoid have a better chance of a smooth recovery?
Brian Fick
Posts: 1
Joined: 2021-03-02 17:08:07

Re: Post colostomy reversal experiences...

Post by Brian Fick »

Hi all,

I am set to have my colostomy reversal tomorrow morning and was interested in hearing some tips or advice on how to deal with post op difficulties. Last February I was rushed to the hospital due to a perforation caused by diverticulitis, before they were able to figure out what to do I went septic twice while in the hospital. Once they decided on a plan they removed some of my colon and my appendix (got messed up in the whole septic ordeal), I woke up with a bag and a lot of questions. I have a surgeon who has been doing these operations for around 20 years and is considered one of the best in my region. I am looking forward to hearing from y'all and hoping to gain some clarity on what I should expect, my surgeon has told me there is a chance that when he gets in there he won't be able to hook everything back up to normal but instead he will give me an Illeostomy which he said would then be closed up in about 6 wks time as long as I heal how I should.

Thanks a bunch,

Brian Fick
Extender
Posts: 1
Joined: 2021-04-23 15:39:45

Re: Post colostomy reversal experiences...

Post by Extender »

Hi everyone, I am a 54 year old male that was in decent shape before my accident.
I was in a horrific auto accident on March 1st of 2020. I received a colostomy while in intensive care. I was the most critical patient for 6 weeks straight. I had a lot of trauma in the accident and had a broken femur and hip, neurologic issues and a lot of other problems. After 7 months in the hospital I came home. Well I had my colostomy reversal of 25 Feb 2021. The surgery went ok. The doctor, a general surgeon had a lot of scar tissue to remove. After five days in the hospital I came home. The biggest problem I have is I almost always have the urge to go to the bathroom. I don't have accidents but it is very uncomfortable. Plus my back side was pretty raw. So I decided a few days ago not to let myself go so much. So, even though I feel like I need to go I don't. I am down from going 10 plus time a day to 2 times a day. I still have the uncomfortable urge to go but no accidents. My backside is no longer raw. Five days ago I started walking 3 miles a day.
Last edited by Extender on 2021-04-23 16:23:36, edited 1 time in total.
Laney47
Posts: 2
Joined: 2021-04-29 19:42:30

Re: Post colostomy reversal experiences...

Post by Laney47 »

I just joined the forum today in hopes of finding some encouragement from others. I'm the caretaker for my husband. Background is: diagnosed with colorectal cancer in January 2020. Underwent Chemo and radiation and in June was declared cancer free. However, his surgeon took his case before her board for recommendations about whether or not he should do surgery. Our choices: the "wait and see" or do the surgery for an illieostomy followed by reversal once healed. She and the board felt the surgery was the best option to ensure cancer did not return. In June he had the surgery and wore the bag until October 3 when she performed the reversal. He did great with the bag although it took a little time for him to get used to it. Ever since that last surgery it's been a nightmare for him. The constant bathroom trips, warm sitz baths, medications...I cannot begin to tell you what the past 6, almost 7 months has been like. Nightmare doesn't even describe it properly. We've done everything we are told to do. Watching the diet, keeping a log, immodium, fiber, he uses a bidet so as not to wipe. he's tried the enema to keep his sytem flushed out and clean. He will go two days and feel great, then 5 days of misery. Starts with a solid poop, turns into diahhrea, the burning he is experiencing is horrible. He's tried creams...no relief. Been back to the doctor numerous times, had another MRI only to be told all looked great..in fact, he looks better than any patient she has ever had....but yet..he's miserable. He is working (he's a pool technician) but sometimes cannot make it to a bathroom and unexpectedly "goes" in his pants. We bought him a portable toilet that he keeps in the back of his truck if he feels the urge. Sometimes he doesn't even feel that urge and it comes faster than he can do anything. He's gotten to the point that he doesn't eat now because he's afraid it will start. He's lost almost 20 pounds, he's thinner than I've ever known him and his clothes are falling off him. I'm so upset about this and don't know what to do anymore. We've even sent a request to his dr for a marijuana clinic since medical marijuana is now legal. he experiences pain in his abdomen when this happens also. He said he feels like a cyclone starts in the inside of his butt and once he feels that swirling action he knows it won't be long before he has a bowel movement and he never knows what that movement is going to be like, solid, loose....etc. Last night he called me to show me...his stool was runny and very brownish-orange. I was attributing it to the fact that he ate a Slim Jim and some goldfish crackers but I'm not sure. I just didn't want him to be alarmed. He said the burning inside his anus was the most horrible thing..it hurt to sit, stand, walk..He was walking like a 95 year old man. I just don't understand what the burning is. He does exercises to strengthen the sphinter muscle as well.

I apologize for the length of this post...I'm just so upset that I can't find a way to help him. I read about how everyone goes through something but within months they are having normal bowel movements and he seems so different. I have an appointment tonight with a nutritionist that hopefully can help us with his nutrition. We've kept a record of his eating habits, bowel habits and how he feels for the past two weeks for her so I sure hope she can shed some light on this. I'm at wit's end with his doctor who didn't even bother to call us two weeks after his last MRI. He sent her a text message and her response was, "Let's touch base at the beginning of next week". this was on Thursday.....3 weeks ago. We have yet to hear from her. I'm thinking he needs to go to a different doctor, he needs to get someone who can help him and help US to understand why he's going through this. We both know that something like this can take years sometimes but he is 55 years old, and was in perfect health before the cancer was found. the tumor wasn't big and fortunately they got it in time as it was not quite a stage 2. I'm really scared for him and hope someone has some recommendations that would help us. And one last question: Are fiber pills as effective as fiber you would get from your nutrition? He takes fiber pills and I"m wondering if perhaps it's not enough to bulk up his stools???

Again, I apologize for the length of this post.....I could probably go on and on but I'd bore most of you. But if you've read this far, a huge THANK YOU for any help, suggestions, encouragement.......:)
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To Dream a Dream
Posts: 1306
Joined: 2010-08-10 18:35:53

Re: Post colostomy reversal experiences...

Post by To Dream a Dream »

Welcome to our discussion board. Am so sorry to learn what you have been experiencing. Having a permanent ileo, I have no specific knowledge to share at this point, but you may consider putting a post on our General discussion forum in reference to this post to be a bit more visible. In the meanwhile, please be patient and hopefully someone will read this & have suggestions.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
ArtK12451
Posts: 1
Joined: 2021-07-15 15:08:55

the last week loose movements but today a stomach ache too: colistomy Feb 23, 2021

Post by ArtK12451 »

very watery stools but consistent output / Colostosmy on Feb 23 of this yr
Mickeya
Posts: 2
Joined: 2021-12-20 17:29:17

Re: Post colostomy reversal experiences...

Post by Mickeya »

Hi. I’m new here and this may not be the correct place for my post. I am a 70 yo woman with an ileostomy since 2017. They left enough rectum to reattach and I’m scheduled for this surgery but I am very apprehensive. I don’t love my stoma but I have learned to manage and lead a very active life. I’m afraid that I will have to deal with pain, urgency and incontinence for quite a while, and I don’t have that many years left! I’d appreciate input from fellow ostomates, present and former! Thank you!
betrue
Posts: 4
Joined: 2021-11-21 11:30:19

Re: Post colostomy reversal experiences...

Post by betrue »

To Laney47,

It's been several months since your post. Did the nutritionist help? I have not had my ileostomy reversal surgery yet, so this is 2nd hand insight into what may be helpful. Cancer, chemo, radiation all do a number on the body and its tissues. Time and nutrition and healthy living all help with the healing process. Since my first and second rounds of surgery, I have been recommended and used l-glutamine for tissue healing, probiotics to improve gut health and therefore overall health, protein powders because I don't always get enough in regular food, multivitamin because something is always missing, olive oil (when my skin gets dry I ask myself what my fat intake has been) and of course the constant always trying to get enough water/liquid. I have considered but not yet tried acupressure / acupuncture to stimulate unhappy nerves and body parts. I have also been referred to websites maintained by cancer doctors who are advocating nutritional healing - not sure if we are allowed to mention any by name here.
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