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Ileostomy Reversal - My Experience

airborne72's picture
airborne72
Posts: 282
Joined: Sep 2012

As promised, this is the first installment of several posts that describe my ilesotomy reversal surgery and recovery.  I have decided to contain the information to weekly periods of time since my hospital stay was almost one week.

Background: I was diagnosed with rectal cancer in May 2017 (stage II clinical).  In July and August 2017 I underwent 25 sessions of radiation while taking Xeloda.  CT scan in September 2017 showed complete eradication of tumor.  Resection surgery was performed in October 2017 and a temporary ileostomy was created to allow my rectum more time to heal.  Pathological staging was reduced to TONOMO.  In November 2017 I agreed to adjuvant chemo (FOLFOX6) but only completed three sessions before I stopped due to the detrimental effects.  Another CT scan was conducted in March 2018 and indicated NED.  On March 26, 2018 I underwent surgery to remove my port and to reverse my ileostomy.

My surgery lasted about two hours and was without any complications.  However, I remained in recovery for an additional two hours because we could not get my pain under control.  Once I was rolled to my room I began to relax and finally my pain relented.  No catheter.  I had an IV and a PCA.  My diet was clear liquids only.  At this time we were monitoring for any issues from the surgery and anxiously awaiting the awakening of my bowels.  No issues during the night except for insomnia.

Tuesday (day after surgery) was the beginning of the increase in my intestinal discomfort.  By afternoon I was definitely feeling some cramping.  My appetite, even for liquids, began to wane.  During that night the intestinal discomfort turned into pain.

Wednesday was my worse pain day.  I would alternate between moments of relative rest separated by increasingly expanding episodes of very painful cramping.  That is when I began to vomit.  Oh boy, did that ever hurt!  I never developed any fever but I alternated between hot flashes and chills.  Miserable.  Finally, at 1 a.m. on Thursday morning I experienced my first BM.  I was so happy because it began the process of pressure relief in my bowels.  Those trips to the toilet occurred every 90 minutes until early morning.

Thursday was not as painful as Wednesday, but I still had my moments.  I was walking more frequently and for longer duration throughout the day.  I also sat on the toilet several times through the day (probably 10) and was evacuating nothing but clear liquids or slightly brown liquids.  Nothing anywhere close to a formed stool.  I tried to convince the surgeon to discharge me.  He knew best and I stayed one more night.

Friday was my day to leave the hospital.  I felt so much better and knew that my condition would improve and the healing process accelerate once I got home.  I was successful in getting their permission to leave the hospital on my own - no wheelchair.  I was motivated to put distance between me and the hospital!  When I got home I took a long nap.  As is my nature, I wanted to test my abilities so early that evening I drove myself to a Kroger (one minute drive) and bought some food items that I thought I would need.  I did this also to see if I could do it.  It was a success.  I did not poop in my pants.

Saturday and Sunday were similar days of recovery.  For whatever reason, my bowels seem to be more active at night so my sleep (at night) has been even more disrupted than it was with the ileostomy.  On average, I was making three trips to the toilet each night.  Through the days it was about 10 times.  Gas seemed to be the greatest culprit because it significantly increased the sense of urgency.

Overall, I am so happy to no longer share my life with an ileostomy.  In the meantime, I am defining my new normal and learning how to manage it.  By the way, after a few days of carefully selecting items to include in my diet, I said to heck with it and ate some corn on the cob and a fresh salad.  It was wonderful and did not cause me any intestinal distress.

More of my readjustment journey later.  If anyone would like to contact me separately to discuss details then please do so.

Jim

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Jim - So happy you're working on the new normal and it seems to be going OK!  I went for corn and salad early on too and did not have any cramping but did have a change in BM consistency, duration and frequency.  So, I plan my meals based on my planned activities.  When I know I will be home I eat more fresh vegetables, fruits, salads, grains, as well as spicy food and beer.   When I know getting to a bathroom will be inconvenient I limit my meals to safe foods like grilled chicken and rice.  So far it's working...

Wishing you well in your recovery and continuing your new normal...

Cindy   

Canadian Sandy's picture
Canadian Sandy
Posts: 721
Joined: Jul 2016

It sounds like your doing well. A few bumps will help you get to a smooth road. Thanks for sharing.

SandiaBuddy's picture
SandiaBuddy
Posts: 1199
Joined: Apr 2017

Jim:

Congratulations on your successes.  Getting up to use the restroom one to three times a night is a new normal for me.  Almost always gas.  Who knows why, but it beats the alternative.  Hopefully the experience of the surgery will quickly fade and you can resume a near normal life--that is what I have been lucky enough to accomplish.

Annabelle41415's picture
Annabelle41415
Posts: 6730
Joined: Feb 2009

I'm just not one to trust that gas LOL. 

Kim

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Jim, So glad to hear it went so well for you. Your grocery trip story made me chuckle. You're brave! 

Here's to many good years ahead for you to enjoy your family. 

Annabelle41415's picture
Annabelle41415
Posts: 6730
Joined: Feb 2009

So glad that you are doing so well.  Salads were always a big part even with my ileostomy.  The one big this was missing popcorn.  Think popcorn, corn and mushrooms were the biggest items missed by me with my ileostomy.   Hope you continue improving day by day.

Kim

darcher's picture
darcher
Posts: 305
Joined: Jun 2017

 

it's good to hear a success story.  The going to the store part to test resiliance is very familiar.   The gas pains were always questionable to me, as Annabelle said.  It's getting to the point now where I can tell the difference between it and the real deal.  In any event, good work and speedy recovery.  

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I now have a better idea as to what can happen in the hospital after the reversal. This explains why they want you in the hospital for several days after. Thanks for your comprehensive report. I will look forward to additional reports for my reversal planning which is, alas, not happening that soon.

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