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Advice for after an ilestomy takedown/reversal

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Many here are scheduled for an ilestomy reversal/takedown so I thought I’d share my experience. (Had a temporary ilestomy from Oct 09-to Oct10)
I was underprepared, but thanks to friends and Father Time, this is what I learned:

In the beginning you may experience:
Explosive diarrhea
Painful constipation
Feeling of not fully evacuated
Surprise pooping

Food remedies for me:
To go: Red wine, chocolate, orange and apple juice, lettuce with olive oil
To stop: White bread, white rice, popcorn, potatoes

Supplies:
Depends---buy more than you think you’ll use. You will need them.
Always or some other pads
Destin---to prevent further irritation, esp. if the area was radiated.
Immodium
Miralax and/or Ducalax

Tips:
When out and about (grocery shopping, Home Depot, etc.), locate the closest restroom.
The old saying: “Never trust a fart” will especially apply to you.
The body & brain need time to re-learn the signals to go.
You may want to keep extra clothes in your car and in a backpack with you.
Pain pills make pain bearable, but play havoc with your GI system. Use judiciously.
Be patient with yourself…..the process takes time.

I am a year and half post-takedown, and it would be fair to say that the first year was a learning curve. Now, I don’t even think about it at all.

Hope this makes things easier for you~
Tommycat

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

It could be a "shart"...
I remember “Never trust anyone over 30” but not the fart one!

I was spared that whole part of colon cancer (so far) and while I know it's certainly not the end of the world, it must be a game-changer for sure. I did go through months if not longer of having surprise poops. I learned to always have toilet paper with me. There are few things as uncomfortable as not being able to relax one's sphincter.
And pain pills, which are mostly narcotics, slow down the GI tract.
Great advice TC...Thanks for sharing. It's comforting to know someone who's been there and done that!
-phil

danker
Posts: 1282
Joined: Apr 2012

Rather than immodium, get a prescription for LOMOTIL. It is stronger. RADIA GEL (over the counter) can relieve a sore burning bottom.
My reversal was in 2010, and unfortunately I developed a fistula. That meant 6-7 more weeks with a bag. But it healed itself rome the inside out. Now plumbing normal.Good luck to all who will have a takedown!

lauragb
Posts: 370
Joined: Aug 2011

Thanks Tommycat! I have pre-ops this week and takedown next week and have been having a pity party today so your post is a timely one. My motto is I don't mind being a cancer survivor as long as I feel good, have no problematic symptoms and no procedures scheduled (ahem, that sounds like being normal). Anyway, with tests, prodding, poking, cutting and then all the pooping issues on the horizon, I'm a little down today.

Thanks for reminding me to be patient and for the tips.
Laura :)

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

thanks TC

I have my 20th chemo treatment tomorrow, with 4 more to go.

then, they say i get 4 weeks off chemo and then the "reconnection surgery" sometime late July or early August of this year.

This will be about 7-8 months after my December 2011 surgery that gave me the colostomy bag. From what i've read, (and have gathered) the colostomy bag has helped me greatly with all the diareha these past 20 weeks.

I've heard several war stories about the recovery from the reconnection surgery... but as i gather info like your post... I am more mentally prepared and able to know what questions to ask of my surgeon.

thanks for your help.

Joe

funnyguy
Posts: 90
Joined: Jan 2007

I can second a lot of what was said here.

I'm now, just about 5 years, out from my reversal and things have gotten much better. I still don't always 'trust a fart'. But it is much better. It took about 3 years to get into a new normal bowel pattern.

But I know where all the public restrooms are when I go out.

I'm hear to tell you that I don't regret a minute of the process though. I'll take my new normal and adapt.

cheers,

son of hal
Posts: 117
Joined: Mar 2011

Thanks TC, sounds like great advise. Just had mine done yesterday and doing good so far. I'll keep all this in mind.
Take care, CJ

steved
Posts: 835
Joined: Apr 2004

My additions to the above would be:

Accept it is a long road- even after 7 years post reversal/ resection my bowels are slowly improving. It took 6 years to get off regular imodium and I still carry them for if needed.

Food/ body interactions are individual- get advice from people as to what helps but it is a matter of trial and error to find how you react to certain foods.

Even if you find some foods upset your bowels you can still have them just balance them out with something that controls the effects eg I still use imodium to allow me to enjoy a few beers when I really want them.

But MOST OF ALL: Don't obsess- it can get to the point of thinking about, talking about, looking at your faeces much of the day. that is not a life!

steve

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

When I said I "don't think about it at all" I didn't mean to suggest that things are easy peasy all the time now.
What I mean is that it isn't at the forefront. The new normal of carrying Immodium or planning ahead is simply part of day-to-day living.
The learning curve is harsh, but you do learn.
Best of luck to all of you beginning this new stage. Remember that it does get easier with time~
TommyCat

orator1
Posts: 2
Joined: Mar 2017

I had mine is late 2012.  I still experience problems at times.  I have been told that your colon will never be the same as it was before and you have to learn to modify your eating habits.  I do have Lodomitl handy and I do not trust "farts."  Don't experience the burning sensation that I did when I first had the reversal done, but at times still have some periods of loose bowels.    My doctor put me on the Standford diet for IBS.  it helps tremendously.  I use myfitnesspal to log everything I eat so I can keep track and if a problem occurs, I can look back to see what I ate previously.  You can do a good search for Stanford IBS diet and print out a copy.  I follow it very closely and have had far less problems.  

I empathize with everyone that has had one of these "take downs."  I thought I would never adjust when I first got it, but over time it seems to get better, but I have come to learn that I will experience periods of loose bowels, etc, probably for the rest of my life.  One problem I have is every time I get one of these periods, I start asking, "has the cancer come back,"  My doctor tells me that is a normal feeling for cancer survivors.  

danker
Posts: 1282
Joined: Apr 2012

Although still relavant, this post is 5 yrs old!! LOL

Suzycat
Posts: 3
Joined: Mar 2017

This is my first time on here and I was diagnosed with rectal cancer back in October and had my surgery in November, then I had my reversal surgery on February 27, 2017.  It has been challenging to say the least.  I'm hoping to get some advice from people who have gone through this to see what steps they have taken.  It just seems like my life right now is geared around my pooping or possible pooping etc.  It seems when I go now it's little amounts several times.  It's nothing to make maybe 10 trips to the bathroom in an hour.  Resulting in a very sore bottom and sometimes bleeding.  I'm sure this is normal (the bleeding part I hope).  I've been using desitin, preperation H, neosporin with pain relievers in it, etc.  I even tried tucks but with the rawness those burn.  I can now start eating high fiber, so I'm hoping that will help but I'm going to also try taking a dose of metamucil once a day and am hoping maybe that will help my poop form into more normal poop and possibly have one bowel movement a day (wishful thinking??). 

So if anyone can share some tips on this I would be so grateful.  When I'm at work I try to eat very little just to get through the day, come dinnertime, I eat a little more and then if I can get through dinner without getting up, the next hour or two I spend in and out of the bathroom.  At that point I just want to cry sometimes.  Anyway, I appreciate any advice from you.

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