Ileostomy reversal. How long to recover.

[JP66]

First, Happy New Year everyone!

I'm aware that every case will be different, but I'm scheduled for reversal surgery in a couple weeks, and I'm just wondering what experiences people here had. In particular, I assume most folks were initially confined to home if so how long did that last or how long until you could go out for a couple hours?

Any thoughts or advice much appreciated.

Joe

[saltygirl]

I had my reversal before restarted chemo. Not standard but I wanted to have it. Never had any issues with the reversal or chemo. After reading horror stories I expected the worst. I could eat pretty much anything. Please do t expect the worse.

[saltygirl]

Best luck and Happy New Year!

[JP66]

Well I hate to be the Debbie Downer of the party, but as we all know posting here is somewhat of a mental therapy so here goes . . .

Had my reversal surgery last Thursday (Jan. 9, 2025). Surgery was fine and during recovery they administered fentanyl so I felt great that day and then it all went downhill. Second day was on liquid only but I could barely walk and only with the aid of a walker. Didn't pass gas that day but did the next AM so they moved me to solid food. Two slices of white bread, 1/2 cup of rice, and a tablespoon of peanut butter and that night I thought I was going to die the gas pain and naseau was so bad. Next day back on a liquid diet, but my stomach was severely distended. I had this happen after surgery once before and I suspect it was a combination of my body's shutting down my digestive system as well as the 3 bags of IV fluid they pumped into me. In any case the stomach distention and bloating only started to diminish today almost a week later. Meanwhile I am 100% incontinent with poop leaking out at will and I'm on the toilet in excess of 20 times a day even though I'm barely eating and only bread, rice, and cream of wheat. My body does seem to give itself a few hours time between needing to evacuate my bowels so I have gotten small blocks of sleep, but in general I am completely miserable and finding it hard to get myself into a positive frame of mind. I was waiting for the bloating to subside before trying Immodium, but I just broke down and took a starter dose just now in hopes of changing from pure liquid to some solid. I'm hoping that will give me some minor control so I can get to a toilet before I leak. In addition my butt is starting to burn slightly, and I can only imagine that will get worse with time. My handheld bidets just aren't powerful enough to clean my butt thoroughly. As a result I just tried using my shower wand and that works fine, but obviously not an option if I ever try to leave the house. I have a doctor's appointment tomorrow, and I'm thinking I'll just fast prior to try and keep from having an accident whilst sitting in the car.

I hope this is just first week issues that will get better because if not I will seriously consider a permanent colostomy.

[beach sunrise]

Don't let dehydration sneak up on you. Drink hydration fluids with the right balance of electrolytes. Gatorade is koolaide in my opinion. IV in the bottle, Biolyte, Dr. Bergs electrolyte powder, ect are good. Also, you could put a lil pinch of salt under your tongue every 3-4hrs to keep electrolyte balance. Electrolytes are the stuff of life.
I hope the immodium puts the break on this so you can get a better handle of it. Dehydration can be dangerous. Surgery will scramble your gut biome and bad bacteria gets their chance to screw your biome up. A good pre-pro-post biotic can balance it back out.
Good luck!
Let us know how it goes for you.

[JP66]

Thanks for the reply B!

I'm happy to report that 24 hours later the Immodium has started working, and I'm down to bathroom visits every couple hours with mostly solid stool. Hooray Oh the little things we enjoy, lol.

[utahgal7]

Joe,

Sorry to hear of your struggles with LARS. There is a group on facebook called Living with Low Anterior Resection Syndrome. It is a private group that you would have to join. However, there are over 7000 members in this group and there is really helpful advice for LARS. Hope this information can be helpful to you and I hope you get better control over BMs soon.

Take care,

Paige

[jts]

Thanks for the updates. My 5 year old ileostoma and I are following this thread with great interest.

I hope everything is going well for you.

[JP66]

Thanks for the updates. My 5 year old ileostoma and I are following this thread with great interest.

I hope everything is going well for you.

Well I will say the trend now is in the right direction.

At last weeks follow up appointment my surgeon prescribed loperamide 4mg every 6 hours. That immediately changed my bowel movements from liquid to solid. It also reduced the number of bowel movements by half. I would no longer consider myself 100% incontinent as now I can make it to the bathroom with time to spare, but I definitely can not ignore ANY sign of movement. The slightest twinge is a sign I need to get to the bathroom.

I do now have hope things will improve since 1) I'm now down to 4 mgs loperamide 3x daily, 2) my stool, as measured by the Bristol scale, is now a consistent 4 although much smaller in size versus pre-surgery, and 3) what I eat does not seem to impact the quality or quantity of bowel movements. The three remaining significant issues that I hope will continue to improve are urgency, frequency, and severe irritation. Currently I'm visiting the bathroom about 15 times daily. My surgeon assures me this will continue to improve in the coming weeks. Let's hope so.

One last note, based on others comments I do believe a morning enema would help, but my problem is I have 2 internal hemorrhoids, and inserting an enema is too painful. I have discussed potentially treating them, but for now nothing is planned.