Second Diversion - Scared Sh*tless, No Pun Intended

I can tell you from our experience, the diversion is more like 6-8 months.  My son had diversion surgery in March, and we are no where near discussing going back to the pouch.  He also had/has a large abscess and at least one fistulia.  We had an MRI last week and I'm not sure if the abscess and fistulia are the old ones or something new.  But it does take months for these things to heal.  And we tried TPN before that.  Didn't work.  Good luck and let us know how it goes.

 

Fistulas can be caused by different things. Are you sure this is a fistula and not a pouch leak? If so, do you know what the fistula connects to? There are a variety of ways to treat fistulas (setons, surgery,...), but they are all very, very far from perfect. Most fistulas don't seem to heal on their own, even with a diverting ileostomy. I'd be more concerned about diversion being unhelpful than about scar tissue. Trying to predict the duration of the diversion is tricky, especially if the intended result is uncertain.

Scott,mid diversions don't work then why do they do them?  I know fistulias are hard to deal with.  It's been explained to me 6 ways to Sunday, but I just don't understand why they can't remove them and plug up the hole?  I can't wrap my head around it.  If they can remove an entire colon, why not the fistulia and abscess?  And I would think if there is a leak, then there would have to be a fistulia.  

 

All of my scopes say there is a persistent fistula.  I figured that's what's causing the actual leak.  I don't know what a seton is, but my docs have definitely tried surgeries (i.e. dilating the anus and stitching it shut).  They've tried that about 5-7 times and it keeps reopening.  They're thinking the pressure of the stool passing through is what's causing it to reopen.  They're hoping a second diversion will allow it to heal on its own.  I'm just terrified that scar tissue will prevent them from reversing the ostomy again.

A leak is just a hole. This is what occurs early on. With time, the body tries to heal it, but if there is infectious material left behind, like an abscess, healing of the leak is impossible, as the infection just builds up pressure and needs to escape. 

 

When the abscess is in a deep cavity, then the body outsmarts itself by creating a fistula. This is where the leak, and its tract become lined with epithelial tissue, much like your GI tract. This protects the rest of the body from widespread infection and allows whatever is in the pocket to drain. The down side to this is that now the body sees this as a new organ and part of the individual. This is why closure attempts have a very high failure rate, especially if they are patches, glue, overstiching, and similar. Better results are seen with opening the fistula wider to make it part of the pouch, or doing a complete dissection and repair of the entire area. But even those only have fair success rates.

 

The same is true for sinus tracts, which are the same as fistulas without connecting to the outside or other organs.

 

The longer the fistula persists, the less likely that repairs will be successful. This is the sad truth. A few weeks of diversion would not likely make a difference. Maybe 4-12 months, with other therapy. Someone who had a gangrenous bowel probably has way more adhesions than the average person here (probably closer to someone who had peritonitis), so it does make sense to fully consider the ramifications of more surgery.

 

I'd get some other opinions with experience with these sorts of complications.

 

Jan

They said they would divert me and give the fistula as much time as it needs to heal.  A lot of that language is over my head.  They never said I had an abscess in there too, so I'm not sure if I do or don't.  I'm at a loss.  I just want to be healed and move on with my life, and I want to know if anyone out there has been diverted more than once and had reversals each time.

 

This is so overwhelming and discouraging.  Sometimes I wonder if just letting the cancer take over would've been better because it's not like I'm living much of a life now anyway.

I am so sorry you are dealing with this. I would love to tell you that this fistula would likely "just heal" so you can move on, but that would be probably be giving you more of a fairy tale. Diversion may not heal this thing, but it could improve your quality of life enough so that you could time to figure out your next step and start enjoying life again. Right now it seems like you are circling the drain, and you need to get out of that loop.

 

Good luck!

 

Jan

 

Thank you.

I am diverting with the intent to reverse again.  I want to know if anyone's done this more than once.

I, too, am dealing with a fistula, a perianal one. As Jan said, yes: once that tract is there, it becomes part of you and your GI tract, and your body has no urgency to heal it, as it doesn't register a problem, once it epithelializes and becomes part of your bowel. 

 

Sad truth.

 

Also, if it's an "IBD" fistula, a fistulectomy can be worse: healing rates are terrible on those, related to inflammation.

 

With a J pouch, there's another strike: cutting through sphincters that have already taken a hit with huge perianal surgery = great risk of incontinence. 

 

Diverting might make things "feel" better, but usually that alone isn't enough to heal it. 

 

I'm stuck with a seton in mine. It's just a rubberband threaded through the fistula and anus that keeps the skin part open so it doesn't cyclically heal over and fill and burst.  

 

If an IBD fistula (like with fistulIzing Crohn's), biologics like Humira and Remicade *can* close them.  However, in my case, while Humira toned down my new IBD issues, it didn't work on my fistula, sadly. 

 

Mine is is no where near bad enough to consider pouch removal or diversion, as I have generally good pouch function.  Yes, my ~6ish BMs a day irritate things at times, but I'm developing ways to keep things less bothersome when need be (edit the diet, Sitz bath, barrier creams, 2x2s tucked to absorb the little bit of mucus drainage, etc.)

 

I certainly don't love it, but what can I do?  I'm being hopeful that some clinical trials introducing stem cells into the glues is going to help me eventually. My new colorectal surgeon is willing to give it a shot, if it is deemed a good treatment eventually. My GI is watching things about this closely. 

 

https://clinicaltrials.gov/ct2/show/NCT01915927