One Year Post-Ileostomy Reversal: My Journey and Insights

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CrappyColon
Nov 23, 2023 2:25 am

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Last week was the one-year mark for my ileostomy reversal. I know for a lot of people reversals are not an option, so I tend to not go out of my way to talk about it unless there is a reversal question. My surgeries were split into two, with several months of healing in between. My husband tried to talk me out of the reversal because he thought I would have more independence with an ostomy, and I like my independence. He also flips out anytime I'm under anesthesia… stuff happens. But at my age and with the new connection already made, just healing, I really wanted to try and was confident in my ileostomy care skills to be able to jump right back into that. My connection is an ileorectal anastomosis—super fun to say and try to explain when asked, ‘What's that?' My colorectal surgeon had said a J-pouch for me would be malpractice because apparently if that rectum can be spared, it's really good. It's funny how normal it is within this group of people to say, ‘Yeah, I have 8” of rectum left, what about you?' At the time of the surgeries, they weren't sure what had killed my colon. Now they're pretty sure it was rheumatoid arthritis—they just don't know why with me it went after an organ hardcore first and only mildly attacked my joints until recently. My post-reversal surgery was traumatic because of complications with an ileus and a partially collapsed lung, but then I had the nurse that looked like Chris Evans, and the rest of that stay is a blur… not really, I had a very interesting roommate.

I had a bunch of testing back in the spring that basically said there are ongoing motility issues, but they don't know why. Food and I are working on our relationship… but that's not the reversal… that is getting sick on repeat for 14 years almost anytime I ate, so my brain sees a lot of foods as the enemy. I'm going to go back and do another round of physical therapy to help strengthen my core muscles. My incision sites have been closed for months, but not healing well, most likely because of the RA, so I've been getting laser treatments every three months to help. If you have any ileostomy reversal questions in particular, I'd be happy to help anyone in finding answers as much as I'm able.
Happy Thanksgiving ☺️

Axl
Nov 23, 2023 7:48 am

Good for you, girl. You are a kind and caring person, and it's great to see you moving forward as you richly deserve. x

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Newhere
Nov 23, 2023 9:10 am

Hey Crappy, stole that lie from Bobw30 I think? I'm glad all is well for you 1 year post-reversal. Take care, Bill.

 

 

Daisy2023
Nov 23, 2023 10:06 am

Happy to hear it's at the one-year mark! 😊 That's amazing. I hope things continue to get better and better for you. Love the photos! ❤️

One thing I did not know is arthritis can attack your organs like that. I thought it was just the joints. Sorry to hear the post-surgery was traumatic too. It's so hard to be through so much. On another note, I bet I had just as interesting a roommate as you haha. Sometimes I just don't know 🤣 I hope the treatments help with the incision and all continues on well. You only deserve the best 😊

IGGIE
Nov 23, 2023 1:23 pm

Good news and let's hope it all keeps going 100% good for you. I got rid of my J-Pouch after 18 years and now I love my stoma. Regards, Iggie

 
Words of Encouragement from Ostomy Advocates I Hollister
CrappyColon
Nov 23, 2023 4:38 pm
Reply to IGGIE

No J-pouch here, so we'll see how it goes, huh? 😃

CrappyColon
Nov 23, 2023 4:52 pm
Reply to Newhere

Bill, yeah, he can be blamed for that one and probably a couple of others. Ha. Thank you 😊

Mysterious Mose
Nov 23, 2023 5:14 pm
Reply to CrappyColon

I think he meant he stole the "crappy" line.

Congrats on the anniversary. I want to thank you again for all the help you have been to me and to so many others on this site. You and Iggie and a few others were a great help in my own reconnection decision. You are one of the heroes in life and I greatly appreciate your ongoing participation and support of others in our realm. A huge thanks for your compassion and support, Jodie!

Daniel

Morning glory
Nov 23, 2023 6:41 pm

Congratulations on reaching your 1-year anniversary. You are a fighter and will continue to heal as well as help others. I pray your RA will go into remission. That's the pits. I also hope you will continue to overcome the food aversion that you have experienced.

CrappyColon
Nov 23, 2023 11:03 pm
Reply to Mysterious Mose

Daniel, that clarification was very helpful haha. 

We come from all walks of life but for whatever reasons have ended up with ostomies, some temporary, some permanent. It's about the journey and those we meet along the way ☺️

14jax71
Nov 23, 2023 11:21 pm

Congratulations on your anniversary. You might have some cloudy days, but I hope the sun will shine through and be bright every day for you.

Delsol93
Nov 24, 2023 2:12 am

Congrats! And thanks for sharing. Dec 8th is my one year and I thank this group for the support! Happy Thanksgiving to everyone too! John.

Mysterious Mose
Nov 25, 2023 6:39 pm
Reply to CrappyColon

Amen, sister! :=))

7dragonflies.hm
Nov 26, 2023 12:15 am

Hey and happy anniversary, you look beautiful! So yes, please explain to me. You had an ileostomy to allow a reconnection to heal? How long was the ileo? Was it a loop? I'm just trying to gather info here for my situation. I had the colostomy since April, reconnected the colon to rectum in October but got a temporary loop ileostomy at that time because of inflammation in there. ANNNND idk if ANYONE is ready for this, I know I was flabbergasted. Apparently, my vagina had adhesed to my rectum. Now who knew that was even a thing. And I would apologize for TMI but I don't think I need to with you guys. ❤️ It was over a 2-hour surgery "of careful dissection." I'm grateful he did it, considering he told my mom he thought about making it permanent. So, he said because of that, trying to prevent a fistula and the inflammation is why he went with the temp loop ileostomy. When I talked to the NP on a video appointment, she said the two things are close together in there anyway and especially now that I don't have a uterus. I was probing for answers on reversal and she said something that made it click, the reconnection has been done (colon to rectum) so it made me feel hopeful that it won't be permanent. Just time to allow healing for the newly joined site? I'll have another fluoroscopic exam on 12/18 to check for leaks and a sigmoidoscopy on 12/19, not sure what that does but the home health nurse suggested maybe to look for inflammation? Then, if all is well, scheduled for reversal on Jan 4th. I noticed a video appointment scheduled already for the following day and asked the NP since I thought why video appointment if I'm still in the hospital? She said I'd probably be out the same day. They just make an incision at the stoma, reconnect and tuck it back in. Seems like a LOT less of a procedure than the previous ones and I thought I'd at least have to stick around for a BM before discharge but maybe not.

Sorry for the long-winded thing here but does anyone have any thoughts?

Jayne
Nov 28, 2023 4:44 pm
Reply to CrappyColon

Yes, I absolutely iterate your sentiment -

{Life is] "about the journey and those we meet along the way"

Happy Tuesday

Thanks for caring and sharing

Waves from the Welsh hills

 

Best wishes

Jayne

CrappyColon
Dec 19, 2023 3:19 am
Reply to 7dragonflies.hm

Hey, did I respond to these questions in a message? Sorry if not, I can circle back now.

Hockeycards
Dec 25, 2023 4:36 pm
Reply to Mysterious Mose

I need help for my husband. He had his ileostomy reversed after 7 months.

He is 4 days post-op and the bowel is asleep. No BMs so far. They give him high constipating narcotics.

Is there anything in the ostomy community that can help, i.e., prune juice or laxatives?

Mysterious Mose
Dec 25, 2023 7:49 pm
Reply to Hockeycards

What does his medical team say? I'm not really the one to ask, given I no longer have a colon and have no reversal experience. If you open a separate topic, you may get the eye of people with similar experience.

Daniel

Stoma midlands
Jan 05, 2024 3:37 am
Reply to Hockeycards

Hi, I do hope your husband found the solution quickly! I have responded as I am suffering the same post-surgery!

I am on Oxycodone tablets which, as you say, cause constipation! I'm confused to have this medication prescribed when opening the bowels is essential, and I was wondering if you found the best answers with this.

I have been admitted to the hospital with an impacted bowel, though still being given medication causing this very thing.

Best wishes to you both.

CrappyColon
Jan 05, 2024 6:53 am
Reply to Daisy2023

Daisy, I need to hear the roommate story 😃

CrappyColon
Jan 05, 2024 6:56 am
Reply to Hockeycards

Hockey, does your husband have any colon left? Have they said ‘ileus'? Is he allowed anything by mouth? Can he pass gas? Do you know what they've tried so far to try to get the intestine going?

CrappyColon
Jan 05, 2024 7:01 am
Reply to Stoma midlands

Hi! You're back at the hospital? I didn't catch what type of reversal you had. Do you have any colon left? If your pain is manageable without the pain med, you don't have to take it. You can also ask to step down to a less strong pain med. Keep us updated on how you're doing! 😊

Stoma midlands
Jan 05, 2024 7:58 am
Reply to CrappyColon

Yes, I had a colostomy reversal. My colon is OK. The actual reversal surgery wasn't too bad in itself. I will keep you updated and thanks for the kind welcome here.

Hayley

JVM261
Jan 07, 2024 12:06 am

Hi, I don't have the private message thing because I'm not a paid member, but I might have a reversal similar to yours because I don't think I'm getting a J pouch because I have my rectum. I think you reached out to me before and offered to communicate by phone or maybe video chat. I've been overwhelmed and down a bit because it's very recent to communicate more, and I would like to talk if possible. Your story is certainly very inspiring and comforting. From what I understand, if you private message me, I can write back. I'm still learning this forum.

CrappyColon
Jan 07, 2024 12:50 am
Reply to JVM261

I'll send a message and we can work out a time to talk. ☺️