Ileostomy Reversal Experience: My Journey and Recovery Updates

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889
ColinSansColon
Oct 19, 2023 3:28 pm

Hi all. I just would like to document my experience with an ileostomy reversal - hopefully, this can help someone in the future.

My Backstory:
I am a 49-year-old male, and pre-colectomy I was in relatively good health, exercising, and at normal weight. Back in January of this year (2023), I had a perforated colon, most likely as a result of a diverticulitis episode. Long story short, I had an emergency colectomy - my entire colon was removed. There is still a tiny smidge of my sigmoid colon remaining, and my rectum was left intact. It was emergency life-saving surgery and I'm thankful to be here. I had an end ileostomy placed. I had adapted to life as best I could with the ileostomy for 8 months and found products and a routine that seem to work for me (Coloplast 2-piece, Perfect Choice Barrier Rings, crusting technique). I know for some, having an ileostomy is a wonderful life improvement - I have so much respect and admiration. For me, the whole scenario was unexpected, frightening, and is still pretty surreal. But if I had to have the ileostomy for the rest of my life, I'd certainly adapt, stay strong, and seek help when needed.

My Reversal:
I had an ileorectal anastomosis (IRA) on September 20th of 2023. (This is a connection of the end of the small intestine to the rectum, or in my case, to the tiny bit of sigmoid colon left above the rectum.) This was a laparoscopic procedure. Overall, the surgery went well.

Some notes immediately following surgery:
-I had a slight ileus for the first few days, but thankfully didn't get the NG tube. I did throw up I think the second night in the hospital - that sucked...
-I was released after being in the hospital for 5 days.
-I did have some serious bloating and gurgling for the first few weeks, to the point where my surgeon sent me for a CT scan 2 weeks post-surgery. I had a partial obstruction at the connection point - what appears to be a narrowing due to the connection still being inflamed. I was switched to a mostly full liquid diet.
-I had mostly liquid'ish output for the first few weeks, going roughly every couple of hours.
-I had one accident in the hospital at night while sleeping, and one very small accident the first night home.
-No Imodium or similar was advised at this point.

At 1-month post-surgery:
-I am feeling pretty good, dare I say 'normal'. I have been walking an average of around 6000 steps per day. I am just about ready for some more serious hikes.
-The extreme gurgling and bloating subsided a week ago, and I was switched to a solid low-residue diet late last week - so far so good.
-I go to the toilet on average every 3-4 hours - things seem to be firming up so to speak. I'm up twice in the night - hoping to get that down to just once per night.
-FWIW I was quoted that I would eventually go to the toilet a total of 4-6 times per day, I think I'm already close to the QTY 6 mark.
-No Imodium yet, but I will be checking with my surgeon if/when I should maybe consider it.
-My rear end has been mostly managed with careful Charmin wiping/blotting, Flushable Wipes, and Desitin
-Knock on wood, no accidents. I was wearing Depends at night just in case, up until a few nights ago. I am fairly confident with the control and awareness.
-My stoma hole site has stopped its tiny amount of spotting at this point (I change dressing every day).
-Overall at the 1-month mark I am pretty happy I chose to do this....knock on wood, fingers crossed, and all of that...

I will try to keep this thread updated over the coming months. If this can help just one person, that's worth a million to me. Please let me know of any questions, or if anyone has had a similar experience, please feel free to chime in! Thanks all!

12/17/2020 EDIT - 3-month update:

For any of those still following here, I am at 3-months post-surgery (ileostomy reversal - ileorectal anastomosis - which is the small intestine connected to rectum - in my case I have a tiny smidge of my sigmoid colon as well).

Knock on wood, things are going well:
At 3-months post-surgery:
-I feel normal and am working, traveling, and exercising in a regular fashion. Weight is back to normal.
-All incision sites are fully healed
-I go to the toilet on average 3-4 times per day, and it seems to be 3 movements is becoming the norm (I was quoted 4 - 6X per day, so I think I'm in good shape there).
-Urgency is completely manageable and the longest I've gone between movements is 12 hours
-I am sleeping through the night for the most part
-Maybe TMI, but the consistency of movements is like bits of spackle haha
-The most challenging part is that passing gas is not like it used to be pre-colon deletion. That is, gas+bowel movement have to happen at the same time. That being said, I am very happy and things are totally manageable.
-I have been cleared to eat just about anything, and may try some supplements to help firm things up a bit. But again, things are currently manageable as-is.
-My rear end is not really inflamed anymore, I believe due to lower frequency. And the baby wipes I use work well.

So all in all I am extremely thankful and feeling really lucky to be where I am. (Knock on wood - I say that a lot.) I hope this may help folks in the future with a similar 'configuration'. Happy holidays!

Cheers,
Colin

My other related cross-reference post:
https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=30055

Morning glory
Oct 19, 2023 3:39 pm

Thanks for the update. I'm going to pass this on to my grandson. He may be a candidate for reversal in the future.

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squirrels in the attic
Oct 19, 2023 4:29 pm

Wow, Colin. Sounds like you're going to be okay without your colon. I wish I could have mine reversed, but after 40 years of having an ileostomy, they do not recommend it. Good luck and happy hiking!

oldcrow4444
Oct 19, 2023 5:55 pm

You give me hope...thank you for sharing your story.

Good luck with the few steps you have left to being fully recovered.

Good luck with the hiking! But be smart about it.

Stay safe!

Mysterious Mose
Oct 19, 2023 6:41 pm

Thanks for the update. It is very informative. I have a colonless ileostomy and have opted to keep the bag. But, I am 75 and you are 49. At your age, I probably would have done the same as you. But, I have adapted to life with the bag and I think it will allow me a little more overall freedom. I do love road trips and I think they will be better managed with the bag. Don't really need a toilet. Just strategically placed bushes/trees and a Ziploc bag or something like it. :-)

Daniel

 
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eefyjig
Oct 19, 2023 8:44 pm

Great news!

Xndman
Oct 20, 2023 11:23 am

Thanks for the story. I'm very similar to you, except due to cancer twice, once when younger and once three years ago. I received a ton of radiation 30 years ago with my first cancer, and this damaged the tissue in my rectum so that when the second occurrence popped up three years ago and the decision was made to remove my colon since I have Lynch Syndrome, I was left with no colon and about half my rectum.

Both my operations were open due to adhesions from my first cancer surgery, and my first hospital stay was 10 nights and included an NG tube. After having a bag for seven months, I was reversed two and a half years ago. I'm 55 now, and I'll say that while it is life-changing, I use Metamucil three times a day and Imodium twice a day, and use the bathroom 10-13 times a day, a lot of it comfort-related. I'm still much happier than I was with the bag. I avoid eating out but can, and if I'm well-prepared by not eating ahead of time, medicating up, etc., I've eaten out over 20 times with no incident other than using the potty once or twice during the dinner. I won't eat if I'm at a tailgate or anywhere where there's not ready access to a potty.

Overall, I'd say that I'm more "normal" now than I was three months ago, and that's been a consistent trend. No blockages, and there's a pattern after eating that I can handle. Occasionally, I'll have a super watery cleanout that forces me to use A&D ointment.

Mostly with the bag, I disliked having no control and always being concerned the bag would come off. I don't have to worry about either of those things today as long as I'm smart, and the couple of times I've made mistakes or eaten without a potty nearby, I've been able to hold it in.

Thanks for the update, OP.

heavenly50
Dec 04, 2023 3:07 am
Reply to Morning glory

Thanks for this information as I am considering a reversal. The detailed info will aid me in making a decision. My surgeon shared some of the issues one can experience post-reversal surgery; however, I left the discussion believing that I would not be able to leave home due to chronic diarrhea all day, constant leakages, and immediate urge to evacuate, which has discouraged me from moving forward with the reversal. After reading your message update and reading a lot of medical articles and experiences from other patients, I will be seeking another surgeon's opinion and make a decision that is good for me. Thanks for the valuable input.

ColinSansColon
Dec 16, 2023 5:15 pm

For any of those still following here, I am at 3 months post-surgery (ileostomy reversal - ileorectal anastomosis - which is the small intestine connected to the rectum - in my case I have a tiny smidge of my sigmoid colon as well).

Knock on wood, things are going well:
At 3 months post-surgery:
- I feel normal and am working, traveling, and exercising in a regular fashion. Weight is back to normal.
- All incision sites are fully healed.
- I go to the toilet on average 3-4 times per day, and it seems 3 movements are becoming the norm (I was quoted 4-6 times per day, so I think I'm in good shape there).
- Urgency is completely manageable and the longest I've gone between movements is 12 hours.
- I am sleeping through the night for the most part.
- Maybe TMI, but the consistency of movements is like bits of spackle, hahah.
- The most challenging part is that passing gas is not like it used to be pre-colon deletion. That is, gas and bowel movement have to happen at the same time. That being said, I am very happy and things are totally manageable.
- I have been cleared to eat just about anything and may try some supplements to help firm things up a bit. But again, things are currently manageable as-is.
- My rear end is not really inflamed anymore, I believe due to lower frequency. And the baby wipes I use work well.

So all in all, I am extremely thankful and feeling really lucky to be where I am. (Knock on wood - I say that a lot.) I hope this may help folks in the future with a similar 'configuration'. Happy holidays!

Cheers,
Colin

Mysterious Mose
Dec 17, 2023 8:46 pm

Very glad to hear things went well. If I may, can I ask what the frequency of your bag empties was before the reversal?

Daniel

ColinSansColon
Dec 17, 2023 10:37 pm
Reply to Mysterious Mose

Thanks, Daniel. I'm guessing I was emptying between 6 - 8 times in a 24-hour period? (I stopped keeping track of the frequency after my output thickened a couple of months after my emergency ileostomy placement.) Thanks again.

warrior
Dec 21, 2023 11:06 pm

Hey Colin.

Great story. Xndman chimed in and gave his story too.

Heavenly 50 said it all

"You give me hope"

 

What you need to do is pass this on.

You two guys should form an alliance. 

Please open a new thread using your stories.

But make the thread topic much easier on the eyes.

Make it simple.

"Reversal surgery can work"

Something to catch the layman's eye. 

There are several people right now looking for you in respect to the unknown reversal success.

We, the non-reversal types, for good or better health express fear into potential reversal candidates.

We mean well, but frankly deter others from having it. There is simply not enough stories like you two guys out there.

You two need to pick up the slack and act. Like a new post

Fact - even somewhat - over fiction.

I don't think I am wrong saying this about you two: you'd both feel obligated albeit dedicated to help other potential reversals.

Pass it on my brothers. 🤗

 

 

 

 

 

ColinSansColon
Dec 22, 2023 2:12 am
Reply to warrior

Hey, thanks Warrior - I didn't catch your name, sorry.

My intent with this post was for people searching for a very specific configuration (no colon and an intact rectum, no colitis or Crohn's) to find this info in the near or distant future. Hence the very detailed post and follow-ups. I know when I was searching for info, I was looking for a very specific type of reversal (ileorectal anastomosis), and the data was hard to find - especially with so many different scenarios and configurations. I really do appreciate your sentiment. This is my way as an engineer/nerd to humbly give back - with detailed searchable content that should hopefully provide others googling in the future with some valuable and positive info. I'm thinking at some point if I get up the nerve, I may post some YouTube vids about my experience, as there's not much there either for this specific configuration. I hope that all makes sense. (-;  

And of course, anyone here is welcome to reach out to me about my experience with this type of reversal! Thanks again and be well.

Cheers,
Colin 

warrior
Dec 22, 2023 5:15 am

It's Tony, and I do get what you mean about looking for a specific template.

There are a variety of people with a variety of reasons for being here, having specific questions answered. And they get them in time.

Like you, looking for a specific group, I was hoping to find people with IBD who lost their hearing.

There are cases of this actually happening, and I felt if they exist, they will be here.

So far, none found. But then, having other "defects" associated with IBD, I found people suffering the same defects as I. We are an odd lot, but we are here.

Good to have you on board. In time, you will have a little tribe of people as I have.

Remember to have some fun here too.

Happy Holidays! 🥂

JVM261
Jan 14, 2024 10:23 pm

Hi Colin:

I'm wondering how you are doing? My situation is similar to yours. I thought I had some colon left, maybe a half an inch, but yesterday I actually found out I have almost five inches left by the rectum. I'm still very nervous about reversal, but my story is similar to yours in that I had C. diff, so no Crohn's, etc. I'm also in New York. I'm very curious to know how you are doing and I'm wondering if you could give us an update? My output is very liquid with the ileostomy, as you could imagine. I have used things the amazing people on here told me to use, and they are helping, but I would really like to go to the bathroom without a bag. But today was one of those hard days. I had a leak and some acid burns. And I'm wondering if my bottom part can really hold the liquid even though it's intact. I don't think it was meant to hold liquid much. So I'm just wondering how you are doing today? What are the improvements, if any? Thank you in advance for any information, and thank you so much for posting such detailed info of your experience. It's very helpful.

ColinSansColon
Jan 15, 2024 6:04 pm
Reply to JVM261

Hi there. I am just about 4 months post-reversal, and I am doing well (knock on wood). I have about 3-4 bowel movements per day. I wouldn't call the BMs 'formed,' but it's manageable. (I'll have some loose output if I have more than one IPA haha.) The longest I've gone between BMs is about 12 hours. I have taken a few flights since surgery, and it has all been manageable. I have good control, sleep through the night, etc. Overall, I am happy with my situation and consider myself to be very fortunate.

FWIW - Rewinding back to when I had an ileostomy - I had loose ileostomy output for a while after my emergency colectomy one year ago. I was prescribed Imodium every 4 hours. Over the course of a few months, I wound down the Imodium (spaced out the doses further and further) until my system acclimated and output was thickened. If things occasionally got liquid-ish, I would hit the Imodium and/or go with the BRAT diet.

I hope that helps a little. Please let me know if you have any more questions.

JVM261
Jan 15, 2024 10:10 pm
Reply to ColinSansColon

Thanks so much for your response. I have been using loperamide as I am allergic to other things. I just started the other day and it is helping. Thank you so much for your response. It is helpful.

JVM261
Jan 15, 2024 11:21 pm
Reply to ColinSansColon

One more thing that I want to ask, which is, do you think your diet has changed? It's nice that you can still enjoy a beer or two, but has it changed outside of that? Is some food more aggravating and some food less aggravating?

ColinSansColon
Jan 16, 2024 2:03 pm
Reply to JVM261

I haven't really kept a log of my diet, but I am slowly expanding things. I haven't really pinpointed anything that causes an issue, other than the IPA thing (even that is manageable for me). I'm still nervous to dig into a full salad, but otherwise, I have been eating small amounts of nuts and raw veggies here and there. Cooked veggies seem to be just fine.

FWIW my ileostomy didn't really like coffee - I had to limit myself to about one cup in the morning. But now it seems as though I'm back to my pre-colon-deletion intake of 2-3 cups.

Again, I'm very fortunate my system is cooperating. I have no idea how I compare to others with the same configuration. (And as mentioned earlier, the surgeons I did speak with, including the one who performed the reversal, quoted 4-6 BMs per day - which I assume is the clinical average for an IRA.) All the best and let me know of any more questions.

JVM261
Jan 16, 2024 3:34 pm
Reply to ColinSansColon

Thank you so much. I'm really glad you seem to be doing so well. I know everybody is different, but because our stories are so similar, I'm hoping that my journey will also have a great outcome with probably some bumps at the start. That's good news about the coffee. I hope you keep us updated. I think your story is really important for people like me who have almost no large intestine left (almost five inches) and who are left with a lot of horror stories online about reconnecting after what you call colon deletion, which is such a smart term. I also value the people on here who suggested maybe it's not such a good idea to have the reconnection, I hear you too, but to read a story like yours certainly is hopeful in combating the fears.

madronaapt
Apr 03, 2024 2:58 am
Reply to Xndman

Thanks so much for the very helpful, detailed comments and honesty. It makes me feel less alone with my situation. Wishing you continued success and perseverance. Good luck and keep on fighting for what you want!