Post colostomy reversal experiences...

For discussing ostomies that are intended to be temporary, and the reversal/takedown of such ostomies.
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Nnngasp
Posts: 3
Joined: 2019-04-26 03:17:09

Re: Post colostomy reversal experiences...

Post by Nnngasp »

I had my illeostomy reversal on 4/4/19 one day before my birthday hooray!!! But I’m currently 22 years old, I was diagnosed with Meckles diverticulitis which I was told is a birth defect that has to do with the umblicial cord not being cut properly during birth and since it’s an outpouching of the small Intestine it ended up filling with acid and exploding causing a perforation in my bowel which lead to high amounts of infection and I basically almost lost my life.. I had a piece of my colon & small intestine removed and woke up from surgery to find out I was going to be doing number two in a bag until my bowels had healed!! But I was thankful enough to have a reversal done in a month!!

I’m currently 3 weeks post op for my reversal, I’m happy to say surgery went well, it was less than an hour but i was in recovery for about 2 hours and when i woke up i was in the worst pain ever!! I kept asking for dilaudid because it was so bad..the first surgery wasn’t as painful as this one, but I was up and walking by day 2 of my surgery, it hurt but you just have to push yourself through it, I had no appetite but I forced myself to eat a little just so I was able to have a bowel movement and get out of the hospital ASAP! It was hard to keep down even liquids, I would get nauseous and throw it up after a couple hours.. but I was able to have a bowel movement day 4 (yayy)! I was discharged day 5, I went home with high hopes of getting off the oxycodone but I was in so much pain that I was taking it at least 2-3 times a day.. (pain has settled ALOT, but it spikes sometimes and it’s not tolerable especially before bed) Painkillers/Zofran(for nausea) lead me to have horrible constipation but with enemas/magnesium citrate I’m able to go in just minutes. I just wish everyone a safe and happy recovery. Stay positive everything will be much better!! I’m already driving & will continue going to school by next month!! I pray for all of you, speedy recovery to all! :)
Jon_Snow
Posts: 1
Joined: 2019-04-27 21:56:03

Re: Post colostomy reversal experiences...

Post by Jon_Snow »

Don’t know if you still roam this site but I feel like I’m going through something similar, especially considering our ages. I was 19 when I was diagnosed with colon cancer which resulted in an ostomy bag. I never liked it from day one and although it’s gotten easier to handle with the support of my parents, I’m still urging for a reversal. Judging from your write up, it sounds like everything went about as well as could be. Question: do you think your age helped your recovery? Many people tell me I’m lucky to be so young as it will help with any needed surgeries and what not and as much as I want to believe them, I know it might not be enough being young. I dread thinking about having a permanent ostomy bag and am hoping my doctors tell me a reversal is possible after my surgery to remove my cancerous tumor in a few weeks. Thing is, after reading through a few similar posts such as yours, I realized I hadn’t even thought about the side effects of a reversal. I just hope it isn’t too painful if I’m blessed enough for a reversal to be possible.
Button
Posts: 3616
Joined: 2017-10-10 22:14:15

Re: Post colostomy reversal experiences...

Post by Button »

Jon:
Another forum for you to visit would be The Colon Club. It is a forum specifically targeted for individuals (and caregivers) with colon and rectal cancer who are below the age of 50. It is a pretty vibrant forum.

www.colonclub.com

Take solace in knowing that an ostomy is not restricted to older/elderly individuals. Children with Hirshberger’s syndrome (a genetically based motility slowing of the large intestine), adolescents and young adults with Chron’s disease, and individuals of any age with abdominal trauma (ex. due to a car accident) are some examples of the wide spectrum ages with an ostomy.

Ostomy products are modern in design and composite materials. No one would know that I have an ostomy by looking at me. I have had my ileostomy for 6 years and it has become as routine as wearing a pair of eyeglasses. Know that there is a good quality of life with an ostomy if an ostomy is a necessary part of your treatment.
Karen
Intestine perforation, sepsis, ileostomy, 2012
Addison’s disease + endocrine failure
Palliative Care
reimanrb12
Posts: 1
Joined: 2019-05-01 12:32:59

Re: Post colostomy reversal experiences...

Post by reimanrb12 »

Klhack-4722, I was curious to see what laxative you use and what is your diet like. My story is very similar and lately I've been just frustrated with the constipation. Even debated, in my head, the thought of going back to an Ostomy. I've just started taking a capful of Miralax a day but my body still hang on to stool like bars of gold. Uggh.....
M1990
Posts: 2
Joined: 2019-05-02 15:46:06

Re: Post colostomy reversal experiences...

Post by M1990 »

Hello,

I had my stoma fitted 5 months ago due to 4th degree tears during childbirth, which were stitched up incorrectly the first time. I am due to have my stoma reverses in a month and I am petrified. I’ve read both positive and negative stories online about post op life. I am worried about incontinence once all is reversed as not only has everything not been working down there for a few months but they do say childbirth can make you incontinence also. Has anyone got a similar story to mine?
Also just wondering how long the op takes and we’re yoi all given a general anethetic?
Thanks in advance
M1990
Posts: 2
Joined: 2019-05-02 15:46:06

Re: Post colostomy reversal experiences...

Post by M1990 »

Also forgot to ask, how long before you all returned to work? I have a fairly manual job so just wondering what sort of time scales are needed for recovery and also for allowing time to let things settle down and to poo with control!?
Nnngasp
Posts: 3
Joined: 2019-04-26 03:17:09

Re: Post colostomy reversal experiences...

Post by Nnngasp »

Reimanrb12- try fleet enema or even magnesium citrate.. I was heavily constipated for 4 days, I did the fleet enema and had relief within minutes.. my surgeon recommended both of them to me so I know it was safe to try!

reimanrb12 wrote: 2019-05-01 13:03:41 Klhack-4722, I was curious to see what laxative you use and what is your diet like. My story is very similar and lately I've been just frustrated with the constipation. Even debated, in my head, the thought of going back to an Ostomy. I've just started taking a capful of Miralax a day but my body still hang on to stool like bars of gold. Uggh.....
Njp77
Posts: 2
Joined: 2019-05-12 07:03:28

Re: Post colostomy reversal experiences...

Post by Njp77 »

I’m 12-days post-reversal, a week in hospital and since then at home.

The good news is that I have no pain at all from the incision, I’m not even taking Advil. I’m not sure why I’m so lucky since usually I’m a big baby about pain, but after four days on a PCA pump in hospital, I haven’t needed anything.

Everything else is tough, though. I have off and on terrible nausea that doesn’t connect with anything I’m eating. After two days of quiet tummy after a few doses of Imodium, I’m now hitting the bathroom every hour or so. I can’t leave the house for an errand, much less figure out when I can go back to work, when things are so unstable.

Most of all I’m just so emotionally tired. I never had UC or cancer: I was floored by diverticulitis and a perforated colon and sepsis last fall. I never managed the ostomy well and couldn’t wait for the bowel resection (five hour surgery in March) and reversal. And now, I’m so far from normal and some of the literature says it could take a year to get there!

I’m a 63-year/old female who used to be in good health with a great family and friends’ support system. I’m also ten pounds too thin and getting thinner. How to cope.....
SharonT
Posts: 1
Joined: 2019-05-27 11:33:23

Re: Post colostomy reversal experiences...

Post by SharonT »

I head to surgery this Thursday to have my Colostomy reversal. Reading through all the great responses ..so varied in the outcomes , so will keep my fingers crossed.
I had a temp ostomy due to complications from a prolapse,reconstruction surgery (vaginal hysterectomy) that was one day overnight surgery..back to emergency 3 days later for 11 more days in hopsital with a ostomy resulting from a perforated sigmoid .
So 4 months later I am heading back for my reversal.. original ostomy was open surgery as will be the reversal. My surgeon says 3 1/2 hr surgery and approx 4 weeks recovery.

I would really like to hear from people on their "return to work" timelines. Working full-time (primarily sitting at a desk (computer) but a fast paced position I wonder if I really be back to work in 4 weeks. (57 year old who has been in typical good health (2015 vulvar cancer but I have been cancer free since then so far) My surgery 4 months earlier I was off 8 weeks. So of course I am trying to prepare everything here at work with what expectations we should all have in regards to my return time.

Any advice on diet after the surgery would be awesome as well and exercise advice.. I am really concern about the high percentage of hernia occurrences so I would really like to avoid that complications, but I like to be active and fit.

Thanks!
Sharo
Njp77
Posts: 2
Joined: 2019-05-12 07:03:28

Re: Post colostomy reversal experiences...

Post by Njp77 »

Hi, Shari, I’m in your age group and have good and bad news from my experience. The good news is that my ostomy reversal was so much less painful than the bowel resection, after the first week I took no painkillers at all. Also the problems with dehydration and low blood pressure disappeared.

My problem is that I got Cdiff in the hospital and am on antibiotics to get rid of it. Still have diarrhea and cramping. But I started working at home halftime 10 days after surgery and am returning to office full time next week - would have been faster except for the infection. If your job is sitting in front of a computer, you should be able to work part time after two weeks.
mnguy
Posts: 1
Joined: 2019-06-01 20:05:24

Re: Post colostomy reversal experiences...

Post by mnguy »

Hi Rosiereside,
I have been wearing a colostomy since last July 2018 due to colon perforation. The surgeon accidently injured my rectum during my hysterectomy. The Doctor said my intestine was not removed any at all, I decided to have it take down until a year later to wait for the hole/rectoviginal fistula heal completely. So far I have adapted and managed the bag well, but I heard both good and bad stories about the reversal colostomy, so I'm nervous for my case. I would like to hear about your experience, Did it go well ? and how long that you can come back to work? Do you have any complications or problems after the reversal colostomy surgery? Can you share your experience ?
Thanks,
Amy
Cherring
Posts: 1
Joined: 2019-06-02 15:32:17

Re: Post colostomy reversal experiences...

Post by Cherring »

I had my reversal may 28 I am not doing well I am running to bathroom so many times. There are times I don’t get there in time I’m so scared this is how it will be for me. The first surgery was much easier to get back to day to day life minus getting used to the bag. Any suggestions would be greatly appreciated my doctor suggested anti diarrhea medication
jjnativity1990
Posts: 1
Joined: 2020-03-20 22:18:52

Re: Post colostomy reversal experiences...

Post by jjnativity1990 »

Sounds like what happened too me . I had reversal about 6months ago still going too bathroom a lot. I have some accident I pray it gets better . My incident took place in AZ with gyn for seomthing so simple turned.my life upside down. What state did you have your initial surgery ?
josiereside wrote: 2018-05-15 10:44:06 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).
McSwine
Posts: 1
Joined: 2020-04-16 16:05:16

Re: Post colostomy reversal experiences...

Post by McSwine »

I also just registered to post my reversal experience. I ended up with a colostomy in the middle of September last year as a result of a colon perforation (diverticulitis). Things went about as well as they could for the next 6 months, but I was beyond ready to get it reversed.

I ended up getting a huge parastomal hernia as well as an incisional hernia around my midline lap. I had already had 3 hernia surgeries prior to my colostomy. I got the reversal on 3/9/20 and my surgeon told me he spent 30 minutes reversing my stoma and 2 hours fixing my hernias! He had to do an open repair because of all the hernia issues. At any rate, things went great and I discharged from the hospital on the 5th day post-op.

I had very few issues of any kind, but I knew things would be different and they were (are). I go to the bathroom more frequently and it tends to be sort of runny more times than not. But things are slowly getting better and they're damn sure better than dealing with the bag. I actually returned to work exactly 2 weeks after the day of my surgery (office job/half days) so I feel pretty fortunate in that regard. I figured as might as well be sore at work as opposed to being sore at home but I really never had any significant pain, even the first couple of days post-op. I was sore, of course, but it was bearable and I was up walking around the next day (not that I really wanted to but I knew I wouldn't go home as soon if I didn't).

I know this is kind of rambling, but I guess my point is don't be scared to do it. I read all the horror stories as well, and I fully understand they are real, but I just wanted to say there are some folks that have great outcomes as well. Now if I can just make myself not lift the stuff I'm not supposed to...
Lrasphong
Posts: 1
Joined: 2020-06-08 22:17:44

Re: Post colostomy reversal experiences...

Post by Lrasphong »

Everything you said is about the same situation I'm in I had emergency surgery because diverticulitis. That was also in sept 20 if last year then in December went for a reversal and they found a leak so had to have an illestomy fast forward to this year went back to NY to have a reversal but the cornovirus stop that.. now tomorrow June 9th having my reversal .. how hard is it adjusting to everything kind of scared out of my mind. ANY ADVICE WOULD HELP
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