My 3-Step Reversal Journey: From Loop Ileostomy to Stoma Closure

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Danno
Jun 24, 2023 3:51 am

I booked my reversal a few weeks ago and will likely take place around Christmas.

I've heard that some people do this in 1, 2, or 3 steps. Mine will be a 3-step process, which brings me to the pouch creation/loop ileostomy portion of my journey. Following that will be the stoma closure and a "functioning" butt.

I've heard this loop ileostomy is the worst, but it's a step back to (hopefully) take 10 steps forward.

Overall, I feel good. Doing this for a second time sucks, but I find comfort knowing that I've been through it and I know what my body can and can't handle.

I asked a lot of dumb questions when recovering that seem silly now. Like "can I drink beer?"

Why not?

But we're scared when something is so new and fragile. That's how I felt.

I have a long journey ahead, but I will keep updating, even if positive.

CrappyColon
Jun 24, 2023 1:22 pm

I had the colectomy, loop ileostomy created, and the new internal small intestine design made during the same surgery. Since I started with the loop, I have no idea how 'easy' the others are in comparison. It's a pain if there is any sort of indent in your skin where it is. I had 3 ostomy nurses come in to consult where to mark the spot for the stoma, and we knew by then my surgeon was most likely going to need to take the colon out through the stoma opening. We didn't know how much extra space my colon was taking inside of me. When it was gone, a lot of swelling went down, and it was like, well crap, this is gonna be a pain. But your problem issue, the colon is already gone, and you're back to working out, so if they can get a good placement for it, that will help.

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Morning glory
Jun 24, 2023 3:57 pm

Best of luck. Thanks for the update.

TerryLT
Jun 24, 2023 7:28 pm

Hey Danno, if my experience is any indication, you have nothing to fear from the loop ileostomy. It's the only kind of ileostomy I've ever had and it works great for me. When my surgeon originally created it, it was possibly going to be temporary, as we wanted to see if an ileo would function better for me than a colostomy, which is what I started out with. I functioned so well with the ileostomy, that the decision was made to get rid of my colostomy and remove my large intestine. My surgeon at the time said he would create a new stoma for me, which would be an 'end' instead of a loop. I asked if this was necessary, as it was an extra step, more invasive surgery. Was it not possible to keep my 'loop stoma', and he said that it was. I'm not sure what kind of problems others have experienced with loop ileostomies, but mine works great. I use a one-piece Hollister pouch, get six-day wear time, and eat whatever I want.

Good luck on your journey!

Terry

Danno
Jun 25, 2023 4:03 am
Reply to CrappyColon

Well, I'm hoping they use the same spot? The nurse that chose my stoma location did a bang-up job because I gained a bit of chubs on the lower abdomen and it's still going strong.

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
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Danno
Jun 25, 2023 4:06 am
Reply to TerryLT

That's incredible. The only info I have got is that I'd be working with slightly less intestine which could change things up a bit. Things are awesome now so I hope I get a similar situation.

I also have to park out quite a bit now, even after 5 months. I'm pretty nervous that all these surgeries will increase my chance of a hernia, but it's a chance I'm willing to take.

TerryLT
Jun 25, 2023 8:11 pm
Reply to Danno

Not sure what you meant by 'park out'? I wouldn't necessarily be afraid of increased hernia risk with all the surgeries, but with possible scar tissue, which can cause big problems for some people. Maybe ask your surgeon about that?

Terry

CrappyColon
Jun 25, 2023 11:23 pm
Reply to Danno

Hmmm, that would be a good question to ask. I don't know if they can or do or not. I know my surgeon had run out of places to remove my colon because I have so much scar tissue (literally look like I was cut in half) and I'm petite. I wonder if mine wouldn't have been as bad if we'd had the option of not removing the colon from the stoma site. If I had not tried the reversal, I was getting a different type of ileostomy. I refused to stay with the loop. Just me though &zwj