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Just talked to my surgeon today. On the 19th of August he and Dr.Shen will attempt to fix my tip of j-pouch leak. Shen will attempt a new procedure with a colleague called an Apollo endo stitch through the booty hole. If the procedure works i will be out the same day and back to work the next day. If it fails and he cant close it, my surgeon will perform surgery and staple off the tip and i will be in hospital 4-5 days and off work about 4 weeks. Then in 6 weeks they will test it to see if the leak fix has worked 100% or not. if so, I can get my jpouch hooked back up. WISH ME LUCK AND PRAYERS PLEASE THAT EITHER WORKS... if not , its either a kpouch or perm ileostomy.
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Pouchomarx, Does this mean that the top of your j-pouch is leaking into your small intestine or vice versa? So when Dr. Shen fixes the leak from like using a flex sig or something like that then he will have to come down your throat during an endoscopy and fix the leak on the other side, in your small intestine through that scope? It sounds horrible to me, sorry.

If it was fixed surgically would both ends of the leak be fixed at the same time?

I'm sure I have this wrong but the surgical option is sounding a lot better to me if the above is the way it's going to happen.

I'm just having a hard time understanding where the other side of the leak is.

I wish the day would hurry up and get here so all would finally be over for you!
My sinus was at the anastomis. It was thought it was closed ended so Shen did a series of endoscopic procedures called needle/knife, where he made the sinus hole larger and made it part of the pouch. they didnt want anything to get in there and get an infection or abcess so opened it larger to allow it to drain. Well a year later they found this tip of jpouch leak and ended up determining that the sinus was not closed off on the other end. the sinus actually looped up and attached itself to the top of the jpouch, so basically its connecting itself from the top and bottom of the jpouch. interesting huh? if not for this leak, they would just leave it since its all within the jpouch. He will try and close the leak through the anus with a new stitching procedure, if cannot get it closed the surgeon will basically cut and staple the top portion thats leaking. I still am a little confused on what happens to the top end of that sinus if the top of the pouch is basically cut off? I talked to my surgeon last night on the phone and he was a little confused as well so he spoke with Shen who explained to him, but i still dont understand? He said he could explain it all when i go the day before for my preop stuff. Lets hope Shen can close it so i dont need surgery!!
An endoscope down the throat can *never* reach the pouch. There's 15 feet of small intestine to traverse, and a scope can't do that. The pouch can be approached from its interior, through the anus, or through the abdominal wall (laparoscopically or open).

They're going to try to do all of this with a scope inside the pouch. It sounds like the technique to close the leak that way is new and uncertain, but if it works it avoids a much bigger surgery. The sinus will unfortunately still need additional attention, since closing the leak will also close off the sinus at that end.
Last edited by Scott F
Grouchomarx, thank you for your thoughtful answer back to me. I'd forgotten about your knife/needle procedures and was focused on the leak at the top. I'd seen the surgery where one of those was fixed recently.

Scott F: Obviously I was wrong. That is why I was questioning GROUCHOMARX. I've had several endoscopic procedures and know the scope only goes so far, I know about pill cams, etc. therefore my question.
Ordinarily, these things begin shortly after surgery, with a weak spot that just does not heal right. Once it happens, it is a tough thing to deal with, particularly as the months and years roll on. Eventually, these sinuses (like a fistula without an exit) become almost like an organ themselves. You can consider them sort of like the appendix: a channel that goes nowhere and when stuff gets trapped in it, there is big trouble.

Inflammation predisposes you, and since Crohn's is associated with chronic inflammation that goes through the bowel wall, it is also associated with fistulas and sinuses. But, this surgery all by itself makes you susceptible. Meticulous surgical technique helps, but does not prevent it 100%.

Jan Smiler
Hi all! I have been seeing Dr. Shen for closure of fistulas with bear claws, too. Saw him on July 30 for the bear claw clamping & by the time I got back home to LA, I was in the ER & subsequently spent the next 6 days in the hospital very sick with inflammation & obstruction in the jpouch. When I saw Dr. Shen this past procedure, due to the fact that my fistula is not healing & has broken thru the abd wall & draining, he mentioned doing the Apllo endostitch to me. BC I wasn't experiencing any problems at the time of the bear claw procedure, he told me to go home & "google it." Geeta, his PA tried to convince my husband to schedule it while we were there but he did not totally understand it & bc I was not awake enough to discuss it with him or them, we went home to research it.
I would love to know if anyone has done it & what their outcome was.
I don't think I totally understand it. I thought they did the procedure & if worked no need for iliostomy, temp or permanent. Jan, maybe you could explain this a little clearer? Good luck to all those dealing with these awful fistulas & with this new procedure!! TIA
noboby has had this endo stitch procedure yet. It is new and I think dtmack is 1st one having it done today by Dr.Shen. I am having it done on Aug 19th. It has been used for upper GI sinus/fistula issues but not for lower GI from what i was told by Shen. Hopefully we will hear from dtmack very soon to see if it worked or not.
I have no doubt that Dr. Shen was hoping he had come up with effective treatment for long standing fistulas without very invasive surgery, but it seems that this was a dead end.

Innovation is how medical advances are made. Unfortunately, there can be a lot of missteps along the way. Even more unfortunate, are you folk who are part of the experiment. I guess this is why insurance companies are loathe to cover treatment that is not mainstream.

I am sorry this just is not working out.

Jan Frowner

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