Worried About Returning to Work After Ileostomy Reversal

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641
bbbrain306
Nov 24, 2023 2:57 pm

Hello, 

I just had my ileostomy reversal after 14 months with it. I had the ileostomy placed because of sarcoma in my sigmoid. As a result, that portion was removed and thankfully it was sphincter sparing. I did receive radiation.

My reversal is quite fresh (Nov 20) but I am having crazy clustering. I do know it will take some time to normalize and find my new baseline function and learn to live with it.

I'm so stressed about returning to work. I work as a nurse and I love my job, but I unfortunately don't have the opportunity to leave frequently and also when I want. Has anyone ever had to find a new job because of their new bowel habits?

Another thing that is stressing me out is that my body won't allow me to pass solid BMs because of scar tissue from radiation. Can anyone offer me some advice or success stories that will help settle my worries?

Thank you :)

Beachboy
Nov 24, 2023 7:59 pm

That's a tough choice. I declined reversal of my colostomy because I had prior radiation treatments for prostate cancer. I was advised, and I researched myself, that radiation causes permanent tissue damage, specifically healing due to decreased blood flow in intestinal tissues.

If your reversal gives you more problems now than you had with the ileo... You need consultations with a good surgeon and gastroenterologist to investigate options available to you.

Let us know what happens.

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Footie97
Nov 24, 2023 11:38 pm

I had a colostomy due to a ruptured colon, lost 18” but the sigmoid was spared. I am a physician and returned to work after a long stay in the hospital and nearly 2 weeks in the ICU due to severe ileus. I also contracted C. diff and was hospitalized multiple times afterward. I went back to work a week after discharge from the reversal but could not have done it if I were on the floor as a nurse. I was in the bathroom 20+ times per day for 6 months due to C. diff. It sucked bad. I did not have normal bowel function for more than a year, not sure whether it was reversal or C. diff related.
We are all different and you need to evaluate your situation and your ability to go to the bathroom as you need. Take the time you need to look hard at your body's ability to work! Good luck!

Footie

Newhere
Nov 25, 2023 12:24 am

I had a reversal 16 weeks ago, colostomy. I didn't have any radiation treatment, so I can't comment there. But if you are only 5 days out from reversal, give it time. It took me about 2 weeks to get some normal bowel movements. Everyone is different, but it will get better for you, Bill.

kennybob94zz
Nov 25, 2023 5:50 am

Worry is like a rocking chair, rock all day, rock all night, think you're going somewhere, but you're not, so why worry? Two days you never worry about are yesterday and tomorrow. We have to take care of the present before we can think about what is to come.

Run your life like you're the CEO of it. Resilience. It is what my dad said: the seven C's: competence, connection, confidence, contribution, character, and the last, control. What you do is put them in the order you think fits you. You need confidence first, then connection. I say build your character, which makes you competent, then gives you a little character, making you want to contribute, then control.

 

 
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kennybob94zz
Nov 25, 2023 6:11 am

Worry is like a rocking chair, rock all day, rock all night thinking you're going somewhere, but you're not, so why worry? Two days you never worry about are yesterday and tomorrow. We have to take care of the present before we can think about what is to come.

Run your life like you're the CEO of it. Resilience. It is what my dad said: the seven C's: competence, connection, confidence, contribution, character, and the last, control. What you do is put them in the order you think fits you. You need confidence first, then connection. I say build your character, which makes you competent, then gives you a little character, making you want to contribute, then control.

 

Maried
Nov 25, 2023 6:29 am
Reply to kennybob94zz

Worry spurs you to action. Worry with no plans to decrease the anxiety or fix the issue is a problem.

rnourie
Nov 26, 2023 1:46 am

Hi bbbrain, we are reversal mates as I had mine on November 15, following long course radiation, LAR with removal of sigmoid colon and most of my rectum, and chemo. I completely understand your worry and anxieties. But it is WAY too early to know what our experience is going to be like days, weeks, and months from now. What I understand is that outcomes vary very widely and there are many more success stories than we hear in forums. I am feeling so much better than I was even 48 hours ago and I know that more will change and unfold in the time ahead. My team has emphasized that this is an improvised journey where as issues arise, solutions are tried and manageability is the goal.

What I'm focusing on right now is the scheduled leave I have for 6-8 weeks as suggested by my doctors. As re-entry approaches, I'll have to evaluate where I am and what I'm ready for and take it incrementally from there. I don't know what your scheduled leave is like or what flexibility might exist on the other side, but for now, to the extent possible (and I know it's hard!), I hope you can just focus on healing and adapting right now and letting the bigger questions come into view when we know a lot more about how this is unfolding.

With you, reversal mate, in hope and heart!

Rich

kennybob94zz
Nov 26, 2023 1:59 am
Reply to rnourie

Hang in there, my friend.

RobN
Nov 26, 2023 2:11 pm
Reply to rnourie

Hi Rich, please keep us updated on your progress. I too had a ULAR with loss of sigmoid colon and rectum due to stage 3 rectal cancer. Surgery was preceded by 1200 hours of chemo + 50 Gys radiation. Twelve months post-surgery, and I still have healing issues from the surgery (in addition to new bladder and prostate issues from radiation damage). Given this, (and an uncertain outcome) I decided to refuse the reversal and retain my ileostomy, but often wonder if I made the right decision. It is hard to find success stories from someone with a close match to cause and treatment. Thanks for your post.

Rob.

 

bbbrain306
Nov 27, 2023 6:13 pm
Reply to rnourie

Awe! I'm so glad to hear you're doing well. It's wild how much things can change day to day, isn't it.

Can I message you?

rnourie
Nov 28, 2023 12:23 am
Reply to bbbrain306

Yes, I'd love to connect and hear more about how things are going for you. Thanks,

Rich

rnourie
Dec 04, 2023 10:41 pm
Reply to RobN

Hi Rob,

I'm now just a couple of days shy of 3 weeks out from my reversal on November 15 and can report that things are going pretty well after a slow start. My bowels didn't wake up until day 11 when I had my first real poop. The next few days were reassuring in that things were finally moving, but the passing of stools was quite painful. That pain has gradually receded so that things are much more comfortable now. I'm only needing to go to the bathroom on average 3 or maybe 4 times in a 24-hour period and have a good sense of control despite not really having a rectum or much of a sigmoid colon. Yesterday, I only went once and so far only twice today. No pooping overnight and no accidents. This is all quite reassuring as I had prepared myself for a much rougher road. I'm able to have stretches each day of many hours of security, allowing for long walks and some sense of peace. The hard things right now are a fair amount of discomfort around the surgery site, the quick reappearance of a small hernia that had been cursorily repaired with my reversal (my surgeon had been upfront that a more thorough repair would have to wait), still recovering stamina and range of physical motion and of course learning how my digestive system works now. But I am very encouraged about quality of life once the healing process completes. Hope this is helpful to hear about.

Rich