Ileostomy Retraction: Seeking Advice

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Bethstanley

Hello!

Has anyone had their ileostomy refashioned due to retraction?

Especially if it's over a year after it retracted?
My stoma retracted soon after my surgery but not quite sure exactly when because I was so unwell.
The surgeons tried to fix it initially but said they couldn't because I was too unwell and it would need to be done by someone more specialist around a year after when I was well again and before the scarring is too bad.
I have an appointment on Thursday where I should be discussing this.
I'm not sure what I should be asking.
Does anyone have any experience of this?
Thank you!

Beth22

Hi there,

My stoma retracted and I had to have a revision about three months ago, and it retracted again. I just had major surgery 2 weeks ago. My original site was a very poor site causing issues. Why did they say to wait a year?

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Bethstanley
Reply to Beth22

Thank you. They said a year because of how unwell I was before. I had 11 surgeries between December 21- February 22 and was so poorly. I had already been in a coma and on a ventilator and they said my body couldn't handle it again why it was still so unwell so they said I needed to wait till my body was doing better.
It's a year next Monday when my first surgery was done

Beth22

Oh wow, I am sorry. That is a lot for your body. I can see why they wanted you to wait... Are you scheduled for surgery already?

Bethstanley
Reply to Beth22

It certainly has been.
Nope, not yet. I see my surgeon on Thursday where I'm hoping he will start the process now. It's coming up to a year. Just getting very nervous now!

 
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HenryM

I'm so sorry you're having to go through this.  I had a revision eleven years ago, but the circumstances are different from what you're dealing with.  Wondering about what questions to ask... two come to mind:  why is this happening?  what can be done to prevent it from occurring in the future?  Frankly, if a stoma is retracting so soon after surgery, I'm wondering about the possibility of surgical incompetence.  I don't have the expertise to say, but so many ostomies are successful, without retraction afterward occurring, that it just seems preventable to me.   If some other aspect of your poor health is causing it, ask them to pinpoint what that is and how it can be neutralized to avoid retraction.  We're pulling for you.

ron in mich

Hi Beth, I had resection surgery a few years ago due to Crohn's scarring and drawing in of my stoma towards my right side. My new stoma now sticks out almost 2 inches.

TerryLT

Hi Beth, I don't have any good advice for you, as I've not experienced this myself. I just want to wish you the best of luck and hope that things go well for you. You have been through enough! Hopefully after your revision, you will have a good functioning stoma, and you can start getting back to your life! All the best,

Terry

Bethstanley
Reply to HenryM

Thank you.
My stoma wasn't the best as it was made. But they say they were more bothered about saving my life. My bowel had completely burst when they tried to remove it, and I was being poisoned by poo and gangrene. They just wanted to clear me out and get something working so I survived.
If they didn't do what they did when they did, I would have died, so I would have much rather dealt with this retracted stoma for a year.
This surgery won't be done in an emergency and with someone more specialized, so it should look different.
So no, it shouldn't have retracted, but at least I survived.

Bethstanley
Reply to ron in mich

Thank you! This is what I hope can happen for me. Can I ask how long the surgery took? How long were you in the hospital? And how long it took you to feel better?
Thank you

Bethstanley
Reply to TerryLT

Thank you so much.
I hope it sorts things out to make things a bit better for me.

ron in mich
Reply to Bethstanley

Hi Beth, the surgery took about 3 hours. As the surgeon had to remove scar tissue, so it was a full open surgery and in the hospital for 11 days. At 68 years old, it took me a good 4 months to start feeling normal and able to do stuff.

Bethstanley
Reply to ron in mich

Thank you. I'm assuming I'd be looking about the same then because they want to remove some scar tissue from where my midline wound was and try to sort the hole in my stomach out. Thank you, I hope you're feeling better now.

Beth22
Reply to Bethstanley

Hi Beth, I hope everything went well with your surgeon and he came up with a game plan for you. I can understand why you're nervous. Always remember, God is always holding you in the palm of His hand.

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