Reversal Process: My Journey and Questions

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Past Member

Had a screening colonoscopy on November 17th.

Good news: No polyps

Bad news: Rectal mass. (I had absolutely no symptoms.)

Followed up with body CAT scan and pelvic MRI, both completely clean except for the MRI, which of course picked up the rectal mass. Radiologist read the mass as Stage T2, 2.8 (1.10236 inches).

So I had a Laparoscopic LAR (Lower Anterior Resection with Creation of Loop Ileostomy) on December 8th. (By the way, I am an OR R.N., and I had everything done at my hospital...it was incredibly helpful and reassuring to know not only the surgeon--with whom I have worked, of course--but the anesthesiologist, nurse anesthetist, scrub tech and circulator.)

Final Pathology: Stage 1, 2.5 cm (1") rectal carcinoma. Proximal and Distal Donut Rings clean, no cancer. Margins clean. Lymph Nodes (15!) clean. I am incredibly blessed and grateful to the Man Upstairs)

No chemo or radiation necessary.

Recovered physically rather quickly per my surgical team, and was told I could go home on the 11th, but I chose to stay one more night, as I still needed the emotional support of knowing the nurses were there....The loop ileostomy, of course, took some "getting used to" of course...and of course I went through an emotional roller-coaster following surgery....

Bringing it up to the present:

Scheduled for a Gastrografin Contrast Enema on February 6, and then a colonoscopy with my surgeon on February 9 to evaluate healing of anastomoses...if all is well, then I'm supposing, after a talk with my surgeon, the reversal of my ileostomy will be scheduled.

How many here have gone through this process?

AlexT

Hope it all works out the way you want it to.

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CrappyColon

I just had a reversal mid-November. I had a loop ileostomy as well. Lost about a week of healing due to an ileus/got to spend an extra week at Cleveland Clinic so that wasn't fun. I see my GI Dr tomorrow for the first time since the reversal (I was seeing colorectal surgeon till I transitioned back to GI's care). I don't think the current issues I'm having are related to the reversal itself. I have an ileorectal anastomosis not a J-pouch. Do you know what the plan is for you? Feel free to ask me any questions. I don't have a paid membership so can't message you first, but I will respond.

Edited to add: my experience with the Gastrografin (sp?) enema wasn't bad. It wasn't enjoyable, but my sense of humor helps me...I had the resident and tech with me and then the head radiologist came in mid-test to see how I was doing and I just stared at him and was like really?? We were all laughing. I didn't have to do anything through the stoma itself, I had to drink the stuff. I think I posted some pictures on my Instagram about it (obviously not during the test itself). My test was the day before the reversal surgery, so I literally didn't know til the day before if we were 100% good to go. I think my surgeon was confident the connection she had made 4 months prior would be good. But it was hard for me because I have younger children and my mom was coming from out of state to help and taking time off work so I felt bad with keeping everyone on hold til the last minute.

Jodie

CrappyColon

Is 15 lymph nodes high? What's a normal range? Wondering because they biopsied 12 of mine and when I asked the surgeon if that was normal, she was like "Oh, don't worry, it's all okay."

Morning glory

Hope all goes well for you.

 
Living with Your Ostomy | Hollister
GrizzlyHansen

I am having my reversal surgery next week on the 8th. I'm terrified! The contrast was the worst part for me so I'm happy I saw this. It's about to get gross so if you don't want to know then stop reading......HERE! OK so when I went in, they did the contrast in the rectum which I wasn't expecting and honestly even though it hurt...That was the easy part. After being (violated) they had me hold this tube with a plastic doughnut thing into my stoma and pumped me full of contrast, this was a weird feeling but not painful at all. After they fill you up they have you lay on your side and allow the contrast to "drain". Then they give you a towel to hold over it and say you're able to go get dressed. So first things first I'm starting to put on my appliance i.e. the wafer when all of a sudden it starts. The fluid mixed with poo started gushing out and not just a little, this was like a fire hose. It sprayed places, covering it with the towel didn't help, it ran down my legs and made about a 5-foot concentric circle that started to leak out under the door into the hall and CT room. I couldn't get anything to stick because the second I got the area cleaned more came gushing out. The 2 backups I brought were destroyed so...There I stood in a puddle of poo with it running down my body. After an hour they and silent tears at just how miserable it was they finally knocked and asked if I needed anything. I asked for superglue and more towels. They brought the glue. I didn't have a wafer so I grabbed the bag, put a string of glue around it, wiped the stoma area as best I could and just glued it to my body. All this I'm saying isn't to scare or dissuade in any way. I pray mine was a 1 off experience. I'm saying bring extra clothes and supplies. I wish you the very best and prayers to you.

StPetie
Reply to GrizzlyHansen

Oh man, that sounds miserable. Sorry you had to experience that last bit. Good luck with your reversal. I'd say you deserved it.

Axl

Hi Grizz

You sure you were in a hospital?

That's terrible treatment of a patient..

gentlejohn

First of all, good luck. Hope your gastrografin enema goes well. Usually stapled EEA anastomosis does not have problems.

I have not gone through your procedure myself but have done the procedure many times. I am not your doctor but I would expect you might develop a "low anterior syndrome" that you should be aware of. You have lost storage capacity of your rectum and your rectum will be irritable. That will produce many annoying small bowel movements during the day. Be patient, it should get better assuming there is no stricture of the anastomosis.

You said you had no symptoms. That is why it is recommended to have a colonoscopy regularly after the age of 45. If you have children, they now have a family history of colon cancer.

I don't recall you mentioning radiation therapy. That could change the outcome.

w30bob

Hi Mindy,

Sorry, can't say I've been there and done that... but wishing you the best. It's always nice to see someone who's up to speed on their condition and not solely relying on the docs to handle everything. It's good that you'll be among coworkers (and friends). That's one thing about being in a hospital that people overlook. The nurses are usually great, but their shift schedule and floor assignments rarely allow patients to build a bond of friendship (and trust) with them. Knowing those personally who will be caring for you will make the whole experience a lot less stressful. Glad to hear you can see the light at the end of the tunnel... and it's not a train! Get that successful reversal and put this Island of Misfit Toys in your rearview mirror... and don't look back!! Godspeed sister!

;O)

CrappyColon
Reply to GrizzlyHansen

I'm really sorry that was your experience with the test. Mine, although as I said above, wasn't enjoyable, also was not the worst test I've ever had. What type of reversal are you having?

Renfromtexas

I'm having my reversal on February 15th. I got the news today.

Hateinit

My ileostomy reversal was done Jan. 20, 2023.
I was discharged Jan. 22. For me, the surgery site was quite sore, and of course having several small crampy BM's every day is no fun.
That said, it was so worth every bit of discomfort. To me anyway. I'm nearly 3 weeks post-surgery, and on my way to my new normal. I wish for you all having a reversal that it goes as well as mine. Best of luck!!

Past Member
Reply to CrappyColon

As far as I know, it's just an anastomosis of my ileum to the rest of my digestive system.

Yes, the Gastrografin enema wasn't bad at all! Most of the liquid came out immediately... staff was great... helped me to relax... I brought some Always Discreet underwear—chose that brand because it was on sale— with me to catch any extra leakage so I could get dressed and go on with ADL for the rest of the day, and the underwear worked perfectly... my one complaint: the waistband should be tighter (yes, I had the right size.).

Radiologist showed me the pictures, everything perfect, no leakage. Next up: the colonoscopy with my colo-rectal surgeon, and then discussion about reversal surgery.

Thanks, Jodie. I will keep you posted.

Past Member
Reply to CrappyColon

Hi, Jodie,

I've heard of as many as 17 lymph nodes being biopsied, so no worries.

Past Member
Reply to gentlejohn

Hi, gentlejohn!

Yes, it was stapled EEA--Are you an MD or an OR nurse?Anesthesiologist?Other medical field person?You know your biz! :-)

Yes, the Gastrografin enema was 100 better than I expected!(Might have to do with the amount injected:only 10 ml.)Most of the liquid came out immediately...staff was great..I brought some Always Discreet underwear--chose that brand because it was on sale--with me to catch any extra leakage so I could get dressed and go on with ADL for the rest of the day, and the underwear worked perfectly...my one complaint: ;the waistband should be tighter (yes, I had the right size.).

Radiologist showed me the pictures, everything perfect, no leakage. Next up: ;the colonoscopy with my colo-rectal surgeon, and then discussion about reversal surgery.

Yes, I know about "low anterior syndrome"...prepared to live through it until my body adjusts...Always Discreet, Depends, et.al. will become a standard in my linen closet for a while, I suppose....

Yes, I know that radiation can affect healing...I was and AM incredibly lucky, as I had neither chemo nor radiation--deemed unnecessary as everything on CAT and MRI was clean, and lymph nodes with NO pathology--

My daughter just had her first colonoscopy. My brother already had his for this year. My cousins (we are all of an age) have all made appointments. (Btw, my family history does NOT include colon cancer, so this was a HUGE surprise ("HOLY SHIT!" and "OMG!" was the general response) to everyone.)

Having the colonoscopy with my colo-rectal surgeon on Thursday--today is Tuesday. If all goes well, I am assuming (though I don't want to make an ass of you and me) that discussion of reversal surgery will follow.

Thanks!

Past Member
Reply to GrizzlyHansen

Sheesh, what a horrible experience!!!! I am so sorry!

I gotta ask: where the hell did you have this done?

Xndman

I had my colon removed and my small bowel hooked up to my rectum. I had cancer with chemo/radiation when I was 21, so my rectum is pretty jacked up from radiation, and my doc says I have about half my rectum left. My surgeon hooked my small intestine to the side of my rectum, and I was given an ileostomy for 7 months while the anastomosis healed. After 7 months, a sigmoidoscopy was clean, and the barium enema, while uncomfortable, was clean as well. They shot the barium up my butt rather than in the stoma, so I didn't have the issues a prior poster did.

I was reversed about 20 months ago, and while I'm not near normal, the fact that I can control when and where I use the potty means everything to me. I go a lot, it's pretty well formed, but my digestive system doesn't do a good job of compressing the waste or removing the liquid yet. So basically everything that goes in comes out in the same volume. This has been improving month after month, and hopefully it continues to improve.

Good luck on your reversal and be encouraged that there are lots of folks like me who have no colon left but are still able to navigate life fairly regularly.

CrappyColon
Reply to Hateinit

I told one of the fellows that when they removed my colon in July, I felt like I'd been hit by a truck (my entire body hurt, which they explained to me why), but then the reversal I told them it just felt like I'd been stabbed where the stoma opening was. I added since I've thankfully never been stabbed or hit by a truck, I don't know how accurate my descriptions are, which he thought was funny. Shoulder surgery hurt way worse than my colectomy and reversal combined, so in that sense, the recovery was better.

Xndman
Reply to CrappyColon

Perfect analogy. Because of my prior surgery and radiation, my insides are kinda jacked so they had to remove the colon the old-fashioned way (open, no robot or laparoscopy). The surgery to get my colon removed was 9 hours long and I felt like death for about a week after. The reversal surgery was only 2 1/2 hours or so and while open again, was much easier to recover from. From both surgeries I was sent home with no opioid pain meds. Of course, I was in the hospital 11 days for the first surgery and hooked up to IV dilaudid for 3/4s of it.

Past Member

Hi, all,

Colonoscopy...really a flexible sigmoidoscopy...was perfect, anastomosis all healed, and I'm set to go for the reversal on February 21st!

CrappyColon
Reply to Anonymous

So, I don't know if my question came across like I don't trust my surgeon. I trust that woman with my life and my kids if needed to. But I know if I ask questions that show I have any concern, she will tell me everything is good or redirect me, lol. They talked in the notes about the size/shape/swelling, etc. I know the biopsies came back okay and my whole abdominal colon is gone. I begged her to take a picture of the colon for me, lol. I want to ask her at my next follow-up if she still has it and if there is any way I can get a copy because I saw it day 1 after surgery, so I wasn't fully with it and don't feel like I could fully appreciate my 1.5 longer than it should've been colon.

CrappyColon
Reply to Anonymous

Yay!!! (Right, we're excited about this?)

CrappyColon
Reply to Anonymous

I had the testing done at Cleveland Clinic. They had drawers in the bathroom full of things like disposable underwear, pads, body cleaning wipes, towels, etc. Everything they have is too big for me, lol. They left this around the top of my hospital bed, not sure why, lol. They usually used a different cuff when they would come in to check BP.

CrappyColon
Reply to Anonymous

I had the testing done at Cleveland Clinic. They had drawers in the bathroom full of things like disposable underwear, pads, body cleaning wipes, towels, etc. Everything they have is too big for me, lol. They left this around the top of my hospital bed, not sure why, lol. They usually used a different cuff when they would come in to check BP.
No leaks in your connection!!!

CrappyColon
Reply to Xndman

I think I was under for 6 hours for the colectomy when they had anticipated it would be 4 hours. Part of my colon had somehow gotten up above my stomach by my spleen during one of the times it was mad and twisting around or something. The surgeon warned me I might wake up to an open surgery, but she did it laparoscopically. She took my 6.5 ft colon out through the stoma opening. I know they took it out in segments but for the picture I requested, it was laid out how it would've been in my body. I begged to go home early both times. The second was because I didn't want to miss Thanksgiving with family. She actually let me go home because one day I had walked all over because my mom and husband said there were therapy dogs in the lobby and I wanted to see them.