Ileostomy Reversal Timeline

[Fred.R]

Hey all.

So... There is discussion about reversing my loop ileostomy in November, which would be about 12 weeks from it's creation.

While I can't wait to get rid of this bag, I've read enough stuff to wonder whether that's too soon. The X-rays cleared me but... I'd like to know other people's experience. Too soon? Better soon because my muscles haven't completely stopped being all muscle-y?

What are your experiences/thoughts?

[O Stoma Mia]

Reversal of Your Ileostomy

[O Stoma Mia]

.... Better soon because my muscles haven't completely stopped being all muscle-y?
..

Exercises that can be done now to improve sphincter control post-reversal:

Sphincter Exercises
.
.

[cashmere]

Since you have opted for no chemo, IMO I do not feel that it is too early. I have often wondered if someone was reversed within a shorter time frame than I was, for example, would their outcome be better than mine?

Best of luck with the reversal and keep us up to date on your progress, Pearl

[tammylayne]

I also believe sooner is better then later. If you look at some other posters, it seems like the ones that had it reversed under the 6 months do better (not all...but some).

My surgeon said that in his experience 12 months is the "magic" number. After that one year it can be more difficult to achieve "normal" again, BUTT....like everything else on this journey, everyone is different. How much colon was removed? Was the rectum removed? Colon or Rectal cancer? Radiation or no radiation?? So many things can contribute to different outcomes,,,,and sometimes it just is what it is.

Your doc put the bag in...he/she is the best one to discuss when and how to take the bag out.

Best of luck to you...

[nicola smith]

I waited a year for reversal. I kept the ileo during 6 months chemo (an effective way not to have to deal with chemo diarrhoea). I then waited another 6 months to get enough energy back to undergo another surgery (albeit a lighter one). I kept my'down there' muscles in shape by doing Kegel exercises during the period I had the ileo. Whether as a result or not, the surgery went well and I am back to a new normal which is not the old normal, but still very good. I also followed a low residue diet and kept a log of progress for a couple of months after reversal. This really helped me to see progress.

[jean60]

I also believe sooner is better then later. If you look at some other posters, it seems like the ones that had it reversed under the 6 months do better (not all...but some).

My surgeon said that in his experience 12 months is the "magic" number. After that one year it can be more difficult to achieve "normal" again, BUTT....like everything else on this journey, everyone is different. How much colon was removed? Was the rectum removed? Colon or Rectal cancer? Radiation or no radiation?? So many things can contribute to different outcomes,,,,and sometimes it just is what it is.

Your doc put the bag in...he/she is the best one to discuss when and how to take the bag out.

Best of luck to you...

Ditto.

Jean

[Fred.R]

Thanks, OSM. Very helpful.

[justin case]

Hey all.

So... There is discussion about reversing my loop ileostomy in November, which would be about 12 weeks from it's creation.

While I can't wait to get rid of this bag, I've read enough stuff to wonder whether that's too soon. The X-rays cleared me but... I'd like to know other people's experience. Too soon? Better soon because my muscles haven't completely stopped being all muscle-y?

What are your experiences/thoughts?

Most people only keep their ileostomy, for extended lengths, to avoid chemo hardship.

[Fred.R]

Just got back from the Doctor. Looks like they want to do it even earlier since the X-ray was clear.

Excited to start the process, nervous about the after-path. I'll journal it here, to the best of my ability, since so many of your stories helped me after my DX.

Perhaps I should invest in a Bidet?

[nicola smith]

Perhaps I should invest in a Bidet?

Absolutely. The cost is nominal compared to the benefits. Even those in my family who are cancer free love it. I got a Biobidet for about $400 that rinses and airdries plus other functions I don't use so much but am pleased to have. It was easy to install - just replaces your regular toilet seat and hooks into the plumbing.

Also keep vaseline and Calmoseptin handy for those times your biobidet is not available.

[DucFanDan]

I had Stage III rectal, down low, so they had to remove 90% of the rectum (in addition to shortening the bowel). My ileo reversal was 7 months after it was installed... basically they wanted the new bowel union to have time to heal and to get me through chemo. A month after the last chemo, off came the bag.

It did not take me long to get into a rhythm. I was going much more frequently, but it was controllable. No accidents (knock on wood). I did *not* have nearly as much warning time when needing to go, but it was enough to excuse myself and get to the toilet.

With time, and with practice, it has gotten much better. I've established a new "normal".

Practice includes advice I got here. Kegels before the reversal to try to retain/build sphincter strength and control. Then once the reversal happens, when you get hit with urge, try to hold it a bit (when time and place allows...accidents at work or out in public would not be cool). Over time, you'll go from being able to hold it for a minute or two, to being able to hold it for tens of minutes. You have to retrain your bowel that it is not in charge of your schedule. This takes time, patience, and deliberate practice.

Good luck!

[alexjosh10]

Wow. My surgeon did the reversal seven weeks (yes, that's weeks and not months) after the colorectal (Stage 111) surgery, which removed most all of my rectum with just enough to resection along with a percentage of my sigmoid colon and seems to be working okay (December with be 2 years) and then five weeks later began my six months (12 sessions of chemo FolFox). Still dealing with bowel issues with better days and not so better days in terms of number of visits to the bathroom, most being one-after=another often within 60 minutes and of course not know when as have not been successful in establishing a time -- but most all are during the day. Nights are now pretty good. Still trying to figure out how best to bulk up as last movements often re very watery and can be OMG. (Any ideas appreciated!) Agree vital to exercise the sphincter muscle religiously. But the reversal should be atraumatic and you'll glad to be rid of the bag and its dealings. Good luck and keep the faith!

[BrownBagger]

Mine was ten weeks, and I started chemo about two months later. No problems. It would have been sooner, but my doc was on vacation.

[Fred.R]

So I'm on for Friday of next week. No booze or blood thinners for me until then, I suppose.

Everybody assures me it's an easy surgery... and a difficult process afterwards. (I'll take any encouragement / advice)

I have been doing physical therapy - core exercises and that stuff... and I still have these weird phantom moments where I have to push out stuff (it's a loop ileostomy) so I am crossing my fingers and hoping the muscles are still intact enough that I'll be on the good side of things.

And wow... the two of you reversals above me did that then Chemo? how did that work out?