The Colon Club

DH has reversal surgery this coming weekend. He had the vast majority (80%) of rectum removed and we know it’s going to be a journey to get to a new normal.

We will get a full plan from colorectal (increasing fiber slowly etc) but I would be interested in any insights or suggestions for how to handle the week(s) immeadiately after surgery. We know Depends is on the shopping list! As is Desitin. How about a bidet or anything else that was helpful? I’ve read the boards and have gotten great info on LT strategies for dealing with any LARs but am a bit more uncertain about the near term recovery.

Also any tips on dealing with the Ileo reversal/open wound recovery would be deeply appreciated as well.

Thank you all.

Dear SG, The reversal is not a bad surgery. My surgeon is very cautious post surgery. Not even water to drink for a few days. Then gradually from water to soft foods.
You get capacity back gradually. Since I had the illeostomy for 6 months, it took about 18 months to get back to normal. I was pretty good by 9 months; but the colon had atrophied from lack of use. Further, when patients are not properly counseled they eat wrong and bad things seem to happen. Take it easy and the recovery should be fine.

Popcorn is one of my favorite foods and I can barely eat it.

When his bum gets sore, a shallow bath with a little Dreft will help it feel better. Early on I took one or two a day.


Dave

I have a long thread with a lot of gory details but it would take some time finding the stuff on the reversal. My reversal was July 30, 2017 and things are still challenging but the first week was very difficult.

The first week is hard because the large intestine has been resting and the job of removing water from waste takes a while to get going so stools are very runny for a while. There may be a considerable lack of control as the sphincter muscles haven't been used in a while. I used the long pads at the hospital to help out and they had barrier wipe which helped as well.

I got Depends and a local store brand but those products are primarily for urinary incontinence. I use female pads (Always 5 Thin or Equate 5 Thin) to deal with fecal incontinence and they work better than wearing a Depends backwards. I also used barrier products for a while. I had spray bottles of Cavilon from the Ileostomy and spraying the area reduced irritation. The liquidy stools are caustic on the skin and going a lot can make the area raw and barrier products helped. I also bought Cavilon cream but didn't use it. I also bought Calmoseptine ointment but didn't use it. I did use a jar of Lantiseptic Original Skin Protectant. I had a few boxes of neoprene gloves for chemo and used those to apply the cream.

Amazon sells three-packs of peristaltsis bottles. These hold about ten ounces of water and are squeeze bottles so that you can shoot water to clean up. These result in far less irritation than using toilet paper.

I also picked up 1,000 packs of Kirkland baby wipes. These can be useful for cleaning up large messes though I just used these before getting the bottles. They are a somewhat expensive solution that generates a lot of waste. I used far fewer of these after getting the bottles.

I used the Ileostomy sample bag to hold an emergency kit of three bottles, a few pads and some wipes. This fits inside a duffel bag with more supplies (Depends, etc.) and I use it as a gym bag as well. It is nice to have multiple emergency bags in different places in case you forget to bring it.

I also carry a bunch of small, plastic food bags (like the kind you get a supermarkets to bring roast chickens home in) and I use these to hold used depends, wipes, waste from pads until I can dispose of them. Most public bathrooms don't have trash receptacles in the toilet stalls.

I keep a mental note of locations which have bathrooms that can be used by the public in case I need one while I'm on the road.

There are a number of OTC things that can be taken to speed things up or slow things down or bulk things up. Imodium slows things down but probably won't work until after the large intestine wakes up. Things like Slippery Elm can speed things up. Miralax can speed things up.

That's all I have for now off the top of my head. It's a lot to deal with and it's good that you're planning ahead (I didn't).

I'll try to find the long thread !If I do I'll post it ! Found it reversal log and experiences, I posted it !

Hope you are recovering well. Open wound healing takes time and for most part is more icky than painful. I have a visiting nurse come a few times a week, but my wife did most dressing/packing changes daily. Took a while but all healed up nicely. Overall recovery was ok, but I had an issue after surgery where my bowels didn't wake up. Took about week in hospital, but again things got back on track. I do have LARS given most rectum removed. Stared enemas last August and its made a huge difference. More freedom and most days are good...still have some wonky times, but overall I get a good 24 hours relief from symptoms. Its really a day to day thing and try to keep it all in perspective.

Take care.

You may want to have a look at some of the reversal logs / diaries / mini-blogs that have been created here on Colon Club:

Takedown Countdown! - BrownBagger

Takedown Info - SurroundedByLove

Rectal-What's is "normal" like after my ostomy is reversed? - Katykards1

Reversal Log: Experience,Problems, Q & A's - Badass

Reversal Thread: PROSPECT Trial - Basil

Reversal - Mini-overview - NHMike