Reversal to Ileostomy: Seeking Recovery Advice

Mar 23, 2023 2:05 am

Hey all, after looking online all night with no success, I remembered this great community and just wondered if anyone has been in a similar situation and could share their story/recovery. Sorry it's a bit long....

In June 2021, my 7-year-old got a stoma due to chemo side effects. Basically, it never helped, so in Oct 21, his colon was removed and he got an ileostomy (sorry about spelling). Then in Aug 2022, after having it prolapse leaving a small hole that meant he kept getting sepsis, it was decided to give full reversal and see how it went. Well, it's not. So on Friday, he goes back in to get the ileostomy put back in. Has anyone had this? He was very, very poorly after reversal, ending up in PICU mainly because it took his bowels so long to work. I would just love more info. How long will he be down? Is this going to be bad because I have been told each time the bowel gets handled, it takes longer to return to normal. So if you include the prolapse and the exploratory operation after reversal, it will be 6 bowel operations since June 22. We do, including him, feel he needs it back, just worried about recovery, etc., and what to expect.

Mar 23, 2023 2:10 am

This all must be tough for you as his mom and for him either. I will be praying for you both. Is he in remission?

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Mar 23, 2023 2:16 am

Are you using NHS or private? (Asking because of possible different options)

Mar 23, 2023 2:21 am
Reply to Beth22

He has 6 more months of chemo. It's a three-and-a-half-year-old treatment plan. But cancer-wise, he seems to be doing great. It's the side effects from the chemo that's the worst part.

Mar 23, 2023 2:22 am
Reply to CrappyColon

NHS babe, everything has been so far.

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Bob 48
Mar 23, 2023 2:24 am

So sorry he's going through that. Can the doctors give him TPN through IV while his gut heals/wakes up and is he still on antibiotics?

Mar 23, 2023 2:51 am
Reply to claire.craig1983

There's a Cleveland Clinic in London, is there any way you could get a consult there and they might be able to collaborate or do a consult with your son? I apologize as I don't know all the intricacies between NHS care and private care - what I know is very broad.

Mar 23, 2023 3:01 am

There's at least 2 former medical people I wish I could tag to look at your post. I checked and don't see either online right now. With my last surgery in November, when my ileus decided not to wake up, they told me that with every bowel operation there's a 50/50 chance it will wake up quickly/correctly (I don't remember that statistic beforehand) - but I don't know if the statistic is the same for children as adults.
It sounds like you've got quite the little trooper there.

Bob 48
Mar 23, 2023 3:40 am

Years ago, after my reconnection surgery at Mayo in Rochester, my bowel took around 10 days to wake up. They had to put in an NG tube to drain my guts, and they didn't want me throwing up to not add any trauma to the surgery. They did everything they could to let it wake up on its own and were close to giving me nutrition through a PICC line. Probably the same as what they are doing with your son because every time they have to do surgery, it could cause other problems. Hopefully, it wakes on its own soon. I know there are people on here with more experience with situations like your boys and will see your post and help you out.

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Mar 23, 2023 7:08 am
Reply to claire.craig1983

This is an inspirational story of a now grown child ostimate.

That she is more than an acquaintance is a great honor to me.

She is one of my mentors and heroes. I hope her story is of some help.

PS I did reach out to her through an old connection. We have drifted apart since my illnesses, but I did ask if she had any words of wisdom for you to reach out either to me and through me to you or directly to you. As I told her that I found you on this site, typically a link like this would be impossible to share here. So if you do a Google search for: We Are Care Managers-Paula Erwin Toth-Nurse Story. You should be able to hear her tell her story in her own words. The video is about 3 and 1/2 minutes long, and if you are at all internet savvy, the first part is a fairly popular video site (owned by Google). The digits below represent the end of their usual string for a link. I hope I'm not breaking any rules. I only want to help; this is no advertisement. There is not one advertisement that I'm aware of involved.


Mar 23, 2023 11:21 am
Reply to claire.craig1983

I am really sorry. I know it must be tough. My nephew had leukemia when he was 1 and a half to 2 years old, and his treatment plan was a long one. I will be praying for that sweet child of yours and for you, mom.

Mar 23, 2023 3:48 pm

So sorry you and your little one are going through all this. Sending loads of love and positive vibes your way.