Post colostomy reversal experiences...

[Teresa+60]

Good morning
I am expecting for my colonoscopy reversal soon and this post really helps me to be calm and serenity.I had a bad experience (I had a complicated diverticulitis and 46 days at the hospital,including UTI etc 7 months ago) and now the reversal is probably soon.Sometimes I have afraid and another’s security.This is life .Thank you for your help! I am really grateful!

[TallerOctopus]

Hello, I created an account in order to contribute my positive story.

I'd done some reading of other peoples' stories as I was gearing up for my own colostomy takedown procedure, to try and get a sense of what I might be in for. A lot of what I read made me nervous about the possible outcomes, quality of life, etc.

I noted that many stories were from folks who'd had rather different starting conditions than me, so I tried to reassure myself that maybe I'd be in a situation for a less challenging outcome.

Now that I've been through my procedure and recovered, I wanted to add my own experience to the body of anecdotal information shared here, for anyone in the future who may be looking, as I was, for a sense of what it might be like. This story will have lots of detail and "TMI", but we're all in a similar boat and its helpful to each other to be frank and forthright about our experiences.

First, I'll lay out my background, the setup for my reversal:

I was 50, having had poorly-managed chronic diverticulitis for about 12-15 years, with occasional "flare-ups" that sometimes got treated by antibiotics, sometimes just by endurance.

In October 2023 I became ill with perforations in the sigmoid colon, peritonitis/sepsis in the abdomen, and secondary infection in other parts of the intestine. I was in the hospital for about three weeks as they attempted to bring down infection with antibiotics, in order to hopefully minimize the amount of intestine needing to be resected.

Incidentally, while I was laid up in a hospital bed for weeks with an NG tube down my throat and a PICC line full of Dilaudid, I also quit smoking!

Eventually they decided that no further medical improvement was likely, and it was time to move ahead to the surgical solution. They performed surgery and removed about six inches of colon, with a left side colostomy in a Hartmann's Procedure. My doctor said that after about three months, the tissues should be recovered enough to support reconnection, so the ostomy wouldn't have to be permanent.

However, I had to take an unplanned 3-month leave from work and go on disability while I was in the hospital and for the post-op recovery at home.
After all the time in a hospital bed and weeks without proper food, I was really weak, my legs had atrophied, my glutes had totally deflated (it hurt to sit on anything without a cushion), and I needed a lot of recovery time to rebuild my strength and return to baseline functionality, while still getting acquainted with pouch & stoma management.
Anyway, I couldn't take another leave just three months after coming back from a 3-month leave.
Under the Family & Medical Leave Act I basically had to wait 12 months until I could qualify for another protected leave.

I'd become adept and comfortable managing my colostomy over the year, and it never had any complications or issues. The worst part about managing the stoma and appliances was the ingrown hairs around the stoma area, and the itchiness I'd get under the adhesive patch.
I felt I had a competent handle on it, and realized that I'd probably rather just keep managing the colostomy than to experience the dire, disappointing toilet troubles that some folks had described. But I still wanted to try. That had always been the plan. I just had to pretend I hadn't read any of the bad outcomes, or case studies, and go back to just naively assuming this was a totally routine thing with predictable outcomes, like I assumed last year. I wanted to be able to tuck my shirts into my pants again.


The reversal:

So, in August 2024 I began scheduling plans with my doctor again for the colostomy takedown (Hartmann's Reversal).
She wanted me to have a contrast enema X-Ray imaging of the rectal stump, and also a colonoscopy (they scope'd in through the stoma and looked upstream, and they also scope'd the 12 inches of the rectal stump as well).

I got these two studies done prior to the surgery, and then finally the surgery day came in November 2024.

During my procedure, apparently they had to manage a lot of internal adhesions, and apparently the back of my bladder wall had developed an adhesion to the rectal stump, and they needed to cut those apart. During that process, apparently they nicked the bladder wall, and created a small hole, so they performed a repair procedure on that before resuming the rest of the work.

(So, not only was I going to be recovering from colon surgery, but bladder surgery as well)

My surgery was pretty early in the morning; they started just before 7 AM, the operation took about 3 hours, and by the early afternoon I was already conscious and recovering comfortably in post-op, on the phone with family, etc.

Aside from the bladder mishap, and the extra time that all the adhesions added to the procedure, the Hartmann's Reversal was successful. They did not end up using the circular stapler for the anastomotic reconnection, because apparently my rectal wall was somewhat thickened from past inflammation, so the doctor opted to manually suture the anastomosis.

My procedure was early on a Wednesday morning, and I was discharged from the hospital the following Monday. They would have released me earlier over the weekend, but I couldn't arrange a ride home on the weekend anyway.

People refer to certain days post-op, but since my operation was early in the morning and I spent most of that day recovering post-op, I don't know if I should count that same day as Post-op day 1, or if I should start counting that on Thursday, the literal next day following the operation.

In any case, I began passing gas by Friday, Post-Op Day 2, and then after ambulating for a bit that evening, as I was sitting back down in bed, I had another fart and I passed a sort of bloody mucus clot along with it. The nurses said this wasn't alarming, and I figure there's likely a little residual bleeding from the trauma of surgery up in there, so I didn't think it was that surprising either.

By POD3, Saturday, I had my first proper bowel movement, on the toilet. It wasn't much, it came out easily and softly. Later that night a second small one. Everyone was very excited.

POD4, Sunday, I had three more small BMs which were soft and moved easily, but I was surprised to notice I was already feeling some swelling, some inflamed hemorrhoidal tissue.
This dismayed me. I hadn't been sitting on the toilet much, or pushing hard. I felt like I'd done nothing to bring this on. Ironically, I had even been thinking to myself the month before, how my butt has had a whole year off, to heal and recover from any such shenanigans, so I should be in a good condition to NOT have them occur right off the bat.

Oh what a fool I was. This was arguably the worst part of my first two weeks of recovery at home...

The hospital toilet paper was awful and rough, but one of the nurses eventually took pity on me and gave me some very nice wet wipes which made the wiping process a lot more comfortable.

On Monday POD5, they finally removed the Foley catheter which they'd insisted I have in this whole time (due to the bladder surgery), and I was discharged from the hospital, and my family collected me for the 5 hour drive home.
In the hospital they had only used Tylenol and Toradol, and weaned me off the Toradol a few days before discharge.
I really didn't need any help with pain management, so even though the hospital had called in a prescription for Oxycodone, I didn't bother filling it.

Recovering at home:

My earlier reading of people's experiences had me concerned about the possibility of accidents, like frequency or sudden urgency out of my control, and not making it to the bathroom in time, etc. so I had ordered a sample pack of adult diapers so that I'd have something to wear for the long ride home, just in case, as well as for the first few days at home.

I was passing a lot of gas on the ride home, but was always a little nervous that it might not be a completely "dry" fart, and I was grateful for the diaper. As it turned out, I had nothing to worry about, it was all fine and uneventful with no accidents. I had one false alarm where I requested that we pull over to find a bathroom, and I was sure that I was barely holding it in, but once I got in and sat down, it was just a lot of gas and nothing else.

At home I put a diaper on when I went to bed, for the first couple nights, just to guard against any possibility of trouble if I had a sudden urge to go but took too long carefully getting out of bed and hobbling down the hall to the bathroom. Although I had to roll over and get out of bed slowly to mind my surgical sites, I usually only needed to get up and go two or three times through the night, and none of them were desperate or urgent. There was no real trouble and I quickly decided I didn't need to wear them.


The frequency of needing to go to the bathroom was definitely increased, and sporadic, for the first couple weeks. It wasn't as bad as some people had experienced and shared in their own stories; I wasn't needing to run to the bathroom 20 times a day, but maybe 8 or 10 - a few times would be a false alarm.

It seemed like pretty much every time a small amount of stool got down to the end of the line, my body said "hey let's go right now" and then I'd sit and plop out whatever small serving that was.
Then came the wiping, the cleaning, the ointments, etc. It was all very raw and tender.
I was looking forward to my body remembering how to "load up" a bit and then pass the payload fewer times in a day.

But everything was so sore, raw, itchy, and sensitive!
I had wipes and creams and ointments and sprays, and "medicated witch hazel" astringents and a "travel bidet" device,
but it was basically agony every time I had to go - the going, the wiping/cleaning, the application of treatments,

I didn't have a sitz bath to use, but one effective means of relief for me at times was to get in the shower and take the hand-held shower head, and turn the water on to as hot as I could stand it (sometimes as hot as it would go), and blast my bum with it. That seemed to help "burn away" the itch, and just basically shock the nerves into "being quiet" for a few hours of relief.

After two weeks at home I was usually only needing to go about 4, maybe 5 times a day.

By this point, the hemorrhoids had resolved (and I was left with an overabundance of hemorrhoid treatment products which I'd over-ordered in my desperate hours), but I was still super itchy down there. I assumed that I was experiencing a Candida outbreak and treated it with miconazole, and that resolved after about a week.
(This was the stage where that shower trick with the hot water was something I did a couple times a day, but very frustrating when I needed to do it in the middle of the night in order to get some relief and get back to sleep.)

After six weeks at home (about 7 weeks post op), my system has settled down into a reasonable and familiar rhythm of elimination, and I typically go 3 (sometimes 4) times a day at fairly predictable intervals. I still sometimes have a "false alarm" sense where I think maybe I need to go, and I sit down and wait and there's nothing.
Stool is generally well formed, not too hard, not too soft (depending on my diet), passing easily and quickly, without much time spent on the toilet. This is in contrast to the old routine, before my emergency operation last year, before the colostomy, where bathroom trips were long, uncomfortable and crampy. It's more like... how it used to be, a decade ago, before the discomfort of acute diverticulitis had become a regular background part of my life.

The internal sensations are a little different now than they used to be, but I'm getting used to reading them; and sometimes there can be a surprising urgency, so I wouldn't say that my bowel performance is perfect, but I feel lucky to have the outcome I did, and I have nothing to complain about.


Aside from the rectal recovery, my external surgical site healing also went well.

I had a midline incision, which went directly through the scar of the old midline incision from the previous year (when they opened me to perform the Hartmann's Procedure), although the new incision was shorter and started below the bellybutton. The scar there is quite hard and tight, but the one around and above the bellybutton (from last year) has softened up a lot since a year ago, so I hope the newly reiterated midline scar below the bellybutton will likewise soften up and stretch a bit over time.

I also had the stoma closure site, which was sutured with a purse string closure and allowed to heal from the bottom up. This one was weird for me - there's a little body horror in the idea of walking around having just an open hole in your flesh; but after a while it healed and filled in so that there wasn't a hole anymore, just a gnarly thick scab, which continued to diminish over time, healing surprisingly well. What was left of the scab peeled off after a shower, about six and a half weeks post-op.

The first week I was home, any accidental cough was excruciating, and felt like I was ripping apart my belly. If I needed to clear my throat, I had to try as gently as possible to 'growl' it out of my throat without tensing my belly.
But after three weeks home, that had gotten much better and I could use my belly muscles normally for basic expressive things like coughing without any pain, though I still would hold my belly with my arms or a pillow if available while doing it.

Both surgical sites have some adjacent tenderness when I press my fingers around them; it's deeper, not superficial. It reminds me that despite the skin-deep recovery I can see, there are other layers of suture in the abdominal wall, other places where deeper tissues are still growing back together and have every justification to be tender. Also once or twice I have felt a mildly sharp, very localized sensation below the skin, sometimes I imagine that might be the end of a suture line, poking into fresh flesh developed around it, before it has finished dissolving.

I continue to take it easy with regard to lifting, twisting, or anything which might strain the abdomen.
I know from my reading that surgical site hernias can happen up to six months post-op, particularly as patients begin to overestimate themselves and become less careful by that point.

I felt confident and capable of driving myself after a week at home (about two weeks post op), with a seat belt pillow device for my belly. That's probably earlier than the doctor would have recommended, but I was willing to trust my judgement on this. Fortunately I didn't have much need to drive anyway.

My leave ends soon and I'll be returning to work at the start of the new year. I'm fortunate that I work from home so that makes it easier to manage any special needs or inconvenient timing that my recovery may still throw at me, but unlike last year, I was fairly healthy going into this procedure, and seem to have recovered quickly from it. I feel "pretty much back to normal" in a broad way at this point, a month and a half after my reversal.

I think in my case I had a pretty favorable "starting condition" for the outcome of my reversal.
That is, I only lost a short section of the tail-end of my colon, rather than all of my large intestine or any other more serious starting condition, which would have a significant impact on the length and structure of the ‘reconnected plumbing’ after reversal.

I have a cousin who had an ostomy after surgery for colon cancer. Later he had it reversed, but found his toilet-related quality of life to become so intolerable over time that he eventually opted to have the ostomy put back.
I was afraid of that kind of outcome, and I felt like I was jumping into a big unknown and hoping for the best.

Some people will never even have the option for reversal, and some who do may still experience disappointing outcomes.
I recognize how lucky I am, and I feel deeply grateful that I not only had the opportunity to reverse my colostomy, but also that I've experienced a good and very acceptable outcome with the reversal.
I'm grateful that I survived a condition that would have killed my ancestors up until a hundred years ago.
I'm grateful for being able to survive two surgeries that would have been like getting my gut split open by a sabretooth tiger back in the old old days.
I'm very grateful that I was lucky enough to be put into the care of a very skilled and experienced surgeon, who was able to see me through the whole process. I can't credit her enough.

I hope that my story might help anyone else to feel hopeful about their prospects after reconnection.