Post colostomy reversal experiences...

For discussing ostomies that are intended to be temporary, and the reversal/takedown of such ostomies.
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Joined: 2018-05-15 10:19:33

Post colostomy reversal experiences...

Post by josiereside »

Would love to hear some positive feedback on how you are all getting along post colostomy reversal. Hoping someone with a similar situation to mine can answer as I know a lot depends on reason why you had colostomy in first place and what was all removed.
I ended up with my Gemma (stoma) due to an injury to bowel from a gynecological procedure. The top of my rectum perforated and the sigmoid was extremely inflamed so they removed that. Still have my rectum, I believe about 11 cm.

I hear a lot of horror stories of incontinence or needing to use the bathroom constantly. I have normal output currently with my stoma. Never once had I had loose or watery stools other than when I first got the stoma. Once I started eating normally my stool normalized.

Hope there are some positive stories of getting back to normal life but please feel free to share you experiences good or bad.
I am in the process of preop testing for reversal now (almost 10 weeks postop colostomy).
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Joined: 2018-05-24 15:17:32

Re: Post colostomy reversal experiences...

Post by lucyf »

Hi friends.

I set up an account just so I could come in here and post about my overwhelmingly positive colostomy reversal experience. Before my surgery, I was madly googling what to expect, and the forums I found were all doom and gloom which made me very nervous going into the operating room.
I was in a severe motorcycle accident last year, resulting in a number of fractures including an open book pelvic fracture and both internal pelvic rings. I also had a severe perennial tear, to the point where I was close to bleeding out on the road. I was rushed to surgery, and along with a lot of other procedures, they gave me a colostomy.

So I woke up, 12 hours later to find I now pooped out of my tummy, which was a minor inconvenience compared to everything else!
5 months later and my colo-rectal doctor announced that my butt had healed enough for a reversal, although my inner sphincter muscles were v weak!

You can't eat any solids (so huuungry) and have to drink a ton of lemony stuff (not that bad) the night before the surgery, and you basically wee through your tummy - just stay close to the toilet, it's actually kinda fun.

Then the next day I went in for my surgery, apologised for eating red jello (you've only supposed to eat yellow or green or it looks like you're bleeding. Whoops), and went under. The surgery took a couple of hours, and I woke up with two small puncture wounds, and a slightly larger hole (the size of a dime). I was in a little pain, but not too bad. I got up and walked around that night, which was a bit painful but you just have to push through it. In the morning I had some broth and juice, and by midday, I felt a fart coming (hoorah!) Such a strange feeling after nothing for 5 months. The fart came, and it was a bubble of blood that trickled down my leg - nothing to worry about (residue blood from the surgery) and a good sign things were 'moving'. I continued to walk every 2 hours, and by 4pm, I did a tiny, runny, bloody poop! I high-fived my husband and promptly ate a big bowl of pasta. I continued to do runny, bloody poops every few hours, got up in the night again to walk, and was allowed home the following morning.

On the way home the bumps in the road were painful, and anything that uses your core is going to hurt. They pull out the 'wick' from your big wound, and just leave it open with a giant bandaid covering it so it can drain.

For the next week I could not trust a fart, and was VERY regular (20 times a day!) but no butt burn and my movements became more and more solid. I ate and drank normally, and within about 10 days was feeling great. My small wounds healed in around a week, and the larger one was starting to close up after 2 weeks. You are allowed to shower without dressings (it's encouraged), and I think this helped to keep it clean and infection free.
Now, 4 months later, I forget I ever had a colostomy a lot of the time. I am pooping once a day, and eating whatever I like. My scar makes me look like I've been shot in the tummy, but, hey, that's kind of cool right?

SO, please know that it CAN be a very positive experience indeed. You can heal well and quickly, and sometimes there are no complications at all. I appreciate I was very lucky - I am young (32) and had no immune deficiences, and my bowel was healthy apprt from my destryoyed butthole. I think my surgeons were also magicians frankly, but hopefully yours will be too.

Good luck guys - any questions, just reply to this thread...
Poo Bear
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Joined: 2018-06-30 13:46:09

Re: Post colostomy reversal experiences...

Post by Poo Bear »

Very nice post Lucy. I'm having reversal on July 31st & have read a lot of doom & gloom too. Mine may be a bit more complicated as I expect I'll have to be cut open instead of the Laparoscopic route. I had an emergency colostomy because of a large abscess ruptured on my colon. It was good to read a positive experience. Thanks again!
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Joined: 2017-12-06 13:23:14

Re: Post colostomy reversal experiences...

Post by MyBernard »

Poo Bear-

I am in the preparation phase for reversal and am terrified! Good luck and keep us posted!

I am crossing my fingers, toes, and eyes in hopes of having as smooth sailing as Lucyf!
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Joined: 2018-07-24 20:50:59

Re: Post colostomy reversal experiences...

Post by Goluscombe »

I'm two weeks post reversal. My reversal was the usual with any and all scar tissue being removed including the fallopian tube underneath. The pain is remarkably significant; I was taking 10mg Oxycodone every 4 hours while in hospital. At home, the amount of pain has dropped probably in half, but that is still a lot to take. At a visit to my GP, the GP tells me that the scar tissue enveloped one of my Fallopian tubes, which was removed during surgery. That now helps me understand the level of pain I was feeling. I didn't realize how much scar tissue had developed in seven months....alot. Happy the surgery is over and now back to recovery.
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Joined: 2018-07-25 18:32:48

Re: Post colostomy reversal experiences...

Post by POOLGUY21 »

I have been on this site many times and i figure this is probably the best time for me to post something about my ileostomy reversal. Just a quick back round on me.. Diagnosed with rectal cancer in 01/2017 went thru radiation and oral chemo and then 4 months of folfox chemo.(no fun).cancer gone.... Went with a watch and wait approach.Then in 02/2018 went for my check up and found out cancer had returned. So as it goes spoke to my surgeon and the only way to go was surgery. The best route for beating this cancer was to finish it and cut it out and that's the course we went with so on 04/2018 I had my surgery and had most of my rectum and all of my sigmoid colon removed.I woke up with my new ileostomy and had it until 07/10/18. The post reversal surgery was not easy for me but i will say after 15 days things seem to be getting better as far as bathroom trips and pain.The amount of trips to the bathroom has gone down from 20 to 25 times a day to about 5 to 10.The pain has also subsided significantly and things seem to be getting better every day. I hope to continue to get better every day and improve on my bowel movements. I will continue to post on here to let people know whats going on with me post reversal. I hope by posting my story (even this soon)it will give someone thinking about reversal to go with your gut and go for it.
p.s. didnt go to the bathroom once while writing this(lol)
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Joined: 2018-07-24 20:50:59

Re: Post colostomy reversal experiences...

Post by Goluscombe »

To pool guy: I was all ready for an ilelostomy too, but didn't need it. You should be losing a significant amount of vitamins and minerals from the ileostomy, so make sure you read up to figure out what you need to supplement....just me being a mother hen.
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Joined: 2018-10-13 18:07:44

Re: Post colostomy reversal experiences...

Post by purejag »

This is my first writings on my post reversal. I am two weeks post reversed colostomy. I had originally had the colostomy on 4-16-2018 due to emergency room trip with ruptured diverticulitis and abscess. I healed quickly and had no issues. I actually thought long and hard about having the reversal as I really did not want another surgery and recovery period. However, anxious to get rid of the bag, I went for it. Dr said everything went fine and sent me home after 6 days in the hospital. My recovery has been slow but I'm getting better. I have only had one "accident" since I've been home and have approximately 8 loose movements daily. The worst part of the recovery has been the pain. There is definitely more pain with the reversal than there was with the original surgery. I have Ibuprofen 800 for pain and small dose oxycodone for taking edge off. I've only used the oxycodone 3 times since being home, but use at least 1 IB800 every night. It's not constant but feels better when I stretch out than sit up. I'm sure this will start easing up in time as well. If things keep going like they are, I'll be quite pleased. I pray for everyone on this board and that is out there going through this. It isn't easy and it helps if you have a great support system like I do, in my husband and kids. I'll update again as I go on, but God Bless everyone out there and know you are in my prayers.
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Joined: 2018-10-15 09:37:08

Re: Post colostomy reversal experiences...

Post by rkcjmajor »

I have been told by my G doctor the surgeon that did my emergency ostomy surgery, due to perforated bowel in 8-11-18, is now wanting to do a refersal. I now have been diagnosed with diversion ulcerative colitis to the section of the the large intestine that remains to my rectum. I am scared to death of I have the reversal I will end up going back under the knife for a full large intestinal removal and end up with an ilelostmy which is something I would not look forward to. I'm asking if anyone has had their rectum sewed shut but kept they ostomy? While talking to my G doctor he did say if everything were to be reattached there is the possibility of going back into full blown ulcerative colitis due to the active diversion colitis. I have no idea as to what to do. It would be great not to have the bag attached but it is wonderful not having all the pain. I still have to wear disposals due to the unannounced bleeding that continues from my rectun? Any feedback would be greatly appreciated. Thank you
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Joined: 2018-10-30 13:03:38

Re: Post colostomy reversal experiences...

Post by sdouglas01 »

Hello everyone, I'm glad I found this site. I was diagnosed with Diverticulitis in 2001 and was told that I had to deal with it. After many years of flair ups every now and then my condition got worse where I became violently ill. My last serious flair up was Mother's Day weekend landed me in the emergency room and a hospital stay for 3 days,at this time it was highly recommended that I have surgery to remove the infected section of my colon. I had the surgery on July 17, 2018 which resulted in an ileostomy that was reversed on October 2, 2018. So far everything is going nicely, only experiencing minor discomfort from the site and that's because it itches. At the moment my movements are every other day, but when I go I have no problems and have 3 - 4 movements in one day. I was told by my surgeon that this is common and to take a stool softener which is helping. I'm being very careful of my diet and my eating habits have changed drastically, I am now eating 4 - 5 small meals per day which is working.
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Joined: 2018-11-06 12:26:24

Re: Post colostomy reversal experiences...

Post by Clay »

New to the site here. I had an ileostomy back in Aug. and a follow up visit in Sep. where I learned this can likely be reversed. I have none of my large intestine left so the reconnect as I understand it will be my small intestine to my rectum (which is still in tact). I've been told things about more frequent bathroom trips as well as short notice and needing to hurry to the toilet. One particular person told me he has to wear a diaper if hes flying in case the urge to poop hits during take off or landing and he can't get up to use the toilet. I don't want to have to wear a diaper or visit the toilet every 2 hours either. So I guess after reading others who posted here about their experience (they all sounded positive), my question is, was your entire colon removed and they simply reconnnected that or was you situstion like mine where there is no colon left.
I look forward to your input. I visit the surgeon in 2 weeks and we will hopefully determine then if I can have it reversed.
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Joined: 2019-03-08 21:32:56

Re: Post colostomy reversal experiences...

Post by Srgilmore »

I just recently had an ileostomy reversal a few days ago and am regretting i did. I didnt reliase how well i adapted to my bag, though it had its issues, but after trial and error in finding the right appliance for my stoma, i managed very well. I was thinking that reversing the ostomy would return me back to normalcy but thats not the case. Now im dealing with either loose bms or constipation to pressure and uncertainty in my gastrointestinal area, from my intestines down to my exit. Not to mention my hemorrhoids, too. Whereas, when i was on the bag, i didnt have those issues whatsoever, especially any leakages, and i didnt have to worry about it interefing with my work. It was simple to empty the bag and move on, not find myself sitting on the toilet wondering why i cant stop going or why am i not going. It has nothing to do with my surgeon who did his part well, its just my body the way it is. Im most unhappy and miserable. I know maby will think im out of my mind when i say this, but im actually considering returning back on the bag, as my experience has been best for me as a better choice in quality of life. Im sorry if Im a downer here, but its me sharing my expereince. It doesnt mean those in the possible transistion of having their ostomies reversed will have the same experience, as likely you wont. I just happen to be a rare statistic. I wish you well in your journey to happiness in your physical well being. God bless.
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Joined: 2018-10-19 11:52:18

Re: Post colostomy reversal experiences...

Post by p14175 »

I had my ileostomy takedown surgery last Friday, March 22. I had a temporary loop ileostomy for 7 months. So far diarrhea only happened once. I can control BM though I am wearing Depend(tm) diapers just in case. I started keggel exercises a couple months before the surgery and started a high fiber diet about 2 weeks before the takedown per the surgeon's suggestion. Right now I have a bit of constipation and a lot of gas, but a mild laxative (I like prunes) will take care of that. I am not taking any pain medication; only a Benadryl at night for itchiness. The wound is healing and itching like crazy.

In other words, the takedown was a success. I am very happy.
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Joined: 2019-04-01 20:30:49

Re: Post colostomy reversal experiences...

Post by adartist »

I had a bowel resection due to a inflammation/scar tissue thanks to Crohn's disease in August (day after my birthday). Yay! I found the resection to be much more painful than the ileo take down - probably because I was so excited to get rid of my little friend of 14 weeks. I wasn't prepared for the amount of drainage as my surgeon left the wound pretty open. I was pretty alarmed but after a doctor visit where the PA basically said yeah... your fine - get out. It healed up slowly but steadily. The only thing I have now is the scar is still pretty thick and rough. And I sometimes feel like I feel things moving through if that makes any sense - kind of a strange flex and release sensation. Doesn't hurt really... just feels weird. Anyone else have that?

But yeah... the scars are real. Probably will always affect how tight I can wear pants and compression garments are off the table.
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Joined: 2019-04-24 18:53:55

Re: Post colostomy reversal experiences...

Post by klhack-4722 »

I had my ileostomy reversal on Dec 4, 2018 after a year long battle with rectal and sigmoid colon cancer at 49 years old. I was diagnosed in December of 2017, and shortly after did 28 days of radiation and chemo pill. After four weeks of rest I had my surgery to remove two large tumors and my ileostomy. I then went through six months of chemotherapy at hospital and on a pump at home every two weeks. I did really well with after getting in the right wafer and bag, and quite honestly was a relief that I didn't have to worry about going to the bathroom. I have suffered chronic constipation for over twenty years and became dependent on laxatives which contributed to the colon cancer.

I was excited about the reversal, the surgery went well, and then things went downhill. Gallons of green bile were coming out from both ends, finally , after three days my surgeon said that was it, an NG tube had to go down my nose into my stomach. I had developed a post op ileus , my stomach had backed up and wasn't working. It was a necessary evil and after twenty four hours was removed. After nine days in hospital I was able to go home. I started to have up to 15-20 small stools a day, but obviously wasn't enough, back to the hospital after six weeks with right side of my colon full of stool. So as of now, my GI doctor has put me on a capful of laxative daily to keep everything going. Back to square one again, on laxatives. Uggghhh.... I really thought I would have loose stools but no, my body doesn't work that way I guess. Feeling much better now, still have approx 7-12 soft formed stools daily but at least I don't have compacted stool sitting on my bladder and pressing against all the scar tissue. There for awhile I desperately wanted my ileostomy back, but I am getting used to my new normal. You have to give yourself time to grieve for what used to be and relax and accept what you have now. It is hard, and there are days I feel defeated but I am alive and here for my daughter!!
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