corrective surgery to fix leak/sinus - not sure if I should do it

I'm guessing this is a rare procedure, but was hoping someone was at least familiar with it.
In my search I did find a user, B-Dawg that looks like he had the same thing. But he doesn't seem to be on the boards now.
The thing is, I've been pretty healthy the last 2 yrs with the bag and don't look forward to the possible complications and hassle that this surgery may bring. Of course if it works, then things would be better in many ways.

Yes,this is a fairly common approach. When you have a sinus tract, it is similar to a fistula. The main difference is that the sinus does not connect. It is a "blind" end. Trying to remove it basically winds up being a pouch reconstruction, with all the risks associated with it. But, if it were me, I'd look into less invasive approaches before committing to surgery.

Being like a fistula, a sinus also has an epithelial tissue lining, like skin, so it sort of is like a new organ. You could think of it sort of like an appendix, but not "dangling" like the appendix. This lining is what makes it stubborn to healing. The body sees it as normal organ tissue, not something that needs to heal. It is a problem because small bits of stool get trapped in there, causing infection. In your case, it has been very stubborn, because it appears that most of these small leaks heal within six months. After that, you assume it is there to stay.

The procedure you are talking about basically opens the sinus to make it part of the pouch. It is effective most of the time and avoids the big procedure of reconstruction. You could go ahead with the takedown an see how it goes, but your surgeon probably would not go for that.

Dr. Shen at the Cleveland Clinic does this via endoscopy and without an open incision or laparoscopy, and calls it a "needle-knife" procedure. He uses endoscopic tools over several procedures to gradually open the sinus to the pouch. You may want to inquire about it.
http://www.ncbi.nlm.nih.gov/pubmed/22390150

But, I don't believe he also incorporates tacking the pouch to the posterior wall. That procedure I have heard of being used when there is a problem with the pouch collapsing or twisting, causing emptying problems.

Jan

I think liz11 is also undergoing the "needle-knife" procedures for a sinus tract, might want to PM her if she doesn't see the thread.

I had 2 done by Shen this past june and july for my sinus tract. not sure if they worked or not? he said he wanted to do procedure several times to see if it works. I did not go back cuz went through divorce and everything that comes with it. Not to mention this procedure has been an insurance nightmare. they didn't want to pay for it and it was appealed several times and finally last month CCF just wrote them off.

Jan, Thank you for your informative reply. I don't have access to the Cleveland Clinic and need to get this done in Chicago. But my surgeon says he is going to go in through the anus and use this stapleing/cutting tool to do it. One procedure not many. Then wait, and see if it heals up properly - then do the takedown.

Blue, That sounds appropriate to me. You could ask your surgeon how it compares to Dr. Shen's procedure (print up the abstract and show it to him). I would not be surprised if he says it is essentially the same thing. What you describe sounds more like the "old school" way. But, old school does not equate with bad. If you want to do some research, the procedure is referred to "unroofing" the sinus.

http://www.ncbi.nlm.nih.gov/pubmed/9221848

Good luck!

Jan

blue- seems biggest difference is that your surgeon is doing a full fledged surgery in an operating room with anesthesia, etc.. and Dr. Shen does his needle/knife procedures via endoscopy. Much less damage and risk to the overall body. And yes, Dr. Shen's procedures generally require more than one. He has told me he has patients that need 3 and some that need 15. But it prevents surgery.

He has done this for me in a different scenario for a chronic wound from my jpouch removal and I have had 3, with healing progress. Also, they are fully covered by my insurance.

Liz, Thanks for the reply. If I understand correctly, it sounds like Dr. Shen is trying to heal or collapse the sinus right? As opposed to the procedure my doc wants to do where he opens up the sinus to the pouch. I have a Blue Cross HMO and I don't believe they will pay for trips to the Cleveland Clinic. It does seem frustrating for that to stand in the way of proper treatment.

I believe the needle-knife procedure does open the sinus, but it is more gradual, done in increments.

Liz's is a deep cavity sinus from pouch removal surgery, so it is different.

Jan

Thanks Jan.

yes, Dr. Shen's needle/knife for anastomic sinuses, opens up the sinus into the jpouch, gradually as Jan said.

blue - wondering if you can speak to your local GI doctor (not surgeon) about trying Dr. Shen's method. He has proven published success with it. Seems any competent GI doctor who does endoscopy should be able to do it. I could also probably email Dr. Shen for you and ask him for a name of a doctor in your area who he thinks would be competent to do this for you.

I surely believe it is a far less risky process than surgery.
good luck.

Liz,
That is an interesting idea. The surgeon I'm going to is Dr. Saclarides and he's highly regarded. My GI is a great doc, but I would think that surgery would best be done by a colorectal surgeon. But I can talk with my GI.

its not surgery, its a scope procedure that takes a few minutes.

I will make an appointment to talk with him. He is the best doctor I have. But he has a very busy practice and is booked solid with appointments, colonoscopys and ERCPs and I don't think he would want to do a procedure that is "new" to him, just for me.

I been giving a lot of thought to the outcome of this procedure. I'm really concerned about going back to the kind of routine I had pre-surgery. Frequent and urgent trips to the bathroom, feeling like you still have to go, weight loss,etc. It's really been preoccupying my thoughts. It means I'd have to live with the bag. Seems like kind of a no-win situation.