Advice on ostomy revision surgery - what to expect?

I have an ileostomy and have developed a fistula where the skin of my abdomen meets my stoma. I'm going to be having surgery to fix the fistula. I have had two open abdominal surgeries in the last two years (colon cancer patient). My colorectal surgeon is going to try and fix it laparoscopically, but it may have to be open. I was surprised by my doctor feeling it needed to be fixed now and forgot to ask all the usual questions. Can anyone help me understand what I'm in for?

Hi Inspired,

I'm not familiar with that, but I can only offer my thoughts and prayers. Take care. I'm sure you'll get answers here. Let us know how it goes.

Mtnman

You have every right to meet with your surgeon to ask your questions before your surgery date. That is necessary for informed consent!

Hi Inspired,

The problem with fistulas is that once they form, they rarely, if ever, fully heal on their own. They form because the body senses it needs another "route" to move things. Without surgical intervention, the fistula may get smaller, or even seem to disappear, but it will always be there, ready to pop back into use whenever the body feels the need. The real question is what's causing the fistula to form in that location? Sounds like your stoma downstream of the fistula has an obstruction or some feature that's causing your body to make another path. You also don't want anything interfering with the skin that bonds to the actual intestine that's sticking through your abdominal wall on the outside (that forms the whole stoma), as that skin is hard to treat (being under a barrier all the time).

So when you talk to your surgeon, make sure both you and he understand why the fistula formed, how that issue is being addressed, and how whatever he's going to do surgically will prevent it from coming back. If the underlying problem isn't corrected before the surgery, your body will just make a second fistula after he closes this one, and you'll wind up chasing your tail while your surgeon will be able to buy that second boat he's got his eye on. Ask him how many of these operations he's done and what percentage were successful. Then ask why the unsuccessful ones were unsuccessful.

Second opinions are always a good idea when any surgery is involved, and if the two opinions are different, then a third or fourth opinion never hurts. And if anyone ever has an issue with you getting another opinion... run, don't walk, away from that surgeon. Surgeons are a dime a dozen. Good surgeons are priceless. Best of luck to you, and let us know how it goes!

Regards,

Bob

My surgeon thinks my fistula formed as a result of the initial stitches going too far into the bowel when the stoma was created. My colon was removed to keep me from getting colon cancer again (I was at high risk of it coming back), but at the time it wasn't diseased. All scans and blood work since then have been completely clean. I'm getting good output from the stoma itself, with additional output through the fistula. Hopefully it's an easy surgery, but none of my cancer journey has happened the "normal" or "easy" way, so I'll be preparing for the worst and hoping for the best.  

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi Inspired,

Have you had radiation for your cancer? Radiation often presents problems for later surgery within the radiation field. It did for me; it took 2 1/2 years for my rectal incision just to close. So if you had radiation, you need to discuss this potential problem with your surgeon, and ask about the possibility of hyperbaric oxygen therapy (look it up on the Mayo Clinic website) before and after surgery, as that is your best chance of mitigating the late effects of radiation. There are lots of hyperbaric O2 clinics in Florida. Good luck.

Nope, no radiation. I got lucky with just surgery and chemo. I've been cancer-free for nearly 2 years now.  

So, apparently not everything went horribly wrong on your cancer journey! You are lucky to have avoided that. I am glad to hear that you've been cancer-free for 2 years. Hoping for many, many more.

Laurie

Has your surgery been scheduled? I wish you the best and hope all goes well for you.

Hi inspired,

That's interesting... you've got a man-made fistula! I'd be curious to know how they're going to fix it. They normally open up the track of the fistula, like when you fillet a fish open, to fully expose all the skin and let it heal. In your case, you can't really do that. The other option is to not cut it open but instead install a plug, basically glued in place in the inner bowel end of the track or tunnel. Normal fistulas are basically infections and contain pus and all that other nasty infection stuff... but yours probably does not. So it should be as easy as cleaning the tunnel real well from end to end and then plugging the bowel end of the tunnel. Easy peasy, girl! You should be done with all this fistula crap in a week or two! Maybe your luck is changing and your medical journey will be getting easier. At least I hope so! Let us know how it goes!

Speedy recovery,

Bob

My surgeon is hoping to do it as an outpatient and your response makes me believe that might actually be possible. The fistula has been getting bigger since it first appeared last fall. Before, it just sort of blew bubbles, like a baby might. Now it actively spews stool. I've had two open surgeries in the last two years and neither went to plan. Hopefully this one does, as I would love to avoid another hospital admission!

Good news: Fistula repair scheduled for July 10.

Bad news: Looks like the nursing staff I talked to had it wrong. Surgery will be inpatient with at least a few days in the hospital.

Can't say I'm excited by a hospital stay, especially when COVID is exploding here in Florida, but the fistula is causing more and more issues. It's located where my stoma meets my skin. It's gotten problematic enough that in the last few weeks, I've gone from 4-5 days between bag changes to now 2 days. I'm grateful I can get in that fast.

Hi Inspired,

Glad to hear you're getting it taken care of ASAP. Fistulas do tend to get bigger because they offer the bowel a "path of least resistance", so more and more stuff ends up going through them. I wouldn't worry about the Covid thing from being in the hospital. I've talked to a few folks who work in hospitals and doctor's offices.....and they got their shit together when it comes to the prevention of the virus. That doesn't mean you should let your guard down, but don't lose sleep thinking about it either. Although being an inpatient sounds way worse than an outpatient, it might be better in the long run. They can take their time and make sure it's repaired properly, and then monitor the results before they send you on your merry way. A couple days in the hospital is better than having to do it twice and deal with any complications. Just don't expect daytime TV to excite you. Unless you REALLY like Wheel of Fortune. Your laptop will be your best friend. If you don't have one, pick up a cheap tablet to have with you......you'll be very glad you did. Two-day changes are my norm........so welcome to my world. If I could go 4-5 days, I'd forget what day I changed it last and be all screwed up. I'd have to invest in shit brown sweatpants!! We could always set up a Zoom or Facetime with you when you're in the hospital and shoot the shit. No, not literally!! You know we're all pulling for you!!

Regards,

Bob

I'm used to hospitals. This will be admission #10 since 6/1/18. I'll bring my Kindle Fire, my iPhone, appropriate cords, and some DVDs in case the room has a DVD player. No biggie, just a little annoying.  

#10??? They're going to start charging you RENT!   

;0)

Bob

Hi inspired2013, glad to hear you are getting some help for your problem. We will all be thinking about you on the 10th. Please let us know how it goes. Best wishes and stay safe

It's a result of Stage IV colon cancer, Lynch Syndrome & treatment. This will be surgery #3 during that time.  

Inspired 2013, hopeful they will get everything fixed and this will be your last. Best wishes and stay safe.

Hi Inspired,

I hope you are getting regular surveillance for Lynch Syndrome. You are at a higher risk for developing other cancers, but you know that already. Good luck for your upcoming surgery. Hope everything goes perfectly. Please let us know when you are able.

Laurie

Yes on the Lynch. I have the mutation with the biggest number of cancer risks. I had surgery last August to remove the rest of my colon, gallbladder, uterus, tubes, and ovaries. Unfortunately, part of my right ovary was left behind and now I have ovarian remnant syndrome. I'm working with my gyn and onc to figure out what to do about it. We could just leave it in and monitor, except that the remnant is stuck to the ureter and when it produces a cyst, it causes severe pain and urinary retention and kidney issues. I'm the only one in the family with Lynch, which isn't usual. But I've got a handle on it :)

It does sound like you do!  You're quite the trooper!  If everyone was able to roll with what life threw at them like you do... the world would be a much better place!  We're all wishing you the best, but you don't need our wishes... cuz you got this covered!  Awesome attitude!!

Regards,

Bob

Surgery is now officially scheduled for a week from tomorrow, early afternoon. If all goes well, it's only a couple of days in the hospital. Neither of my abdominal surgeries have gone to plan, so I'll be preparing for a longer hospital stay and hoping for a short one. I've had two full abdominal surgeries, so I'm really hoping I don't have too much scar tissue & that my abdominal muscles around my stoma can handle the surgery.