August 19th is my date to fix my leak...pray

Good luck! You've got a lot riding on this. Must really be a special feeling being a guinea pig for the medical journals! Positive vibes coming your way for a successful procedure.

Jan

Best of luck to you on this procedure! You've got an excellent medical team going for you

Good luck on your procedure.

It seems that Mr Shen knows what is doing, I'm sure you'll get well.

Congratulations Either way, I'm glad you finally have the date set!

Major good vibes and luck...let this finally be the solution.
sharon

just found out tonight that i will also need a series of endoscopic procedures to fix the other end of the sinus once the leak is fixed.. it never ends

What a bummer! You should get frequent flyer points or bulk discount, or something!

Jan

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.

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.

its Pouchomarx, not GROUCHO...lol.. im angry but cmon..lol

I'm GrouchoMarie and your are Pouchomarx, lol! Sorry

Good luck poucho.

I was with Dr. Shen yesterday for my second bear clamp attempt.

If it does not work, August 5th looks like my inside sewing attempt as well.

Here's hoping.

inside sewing? is he going to attempt the endo stitch on you too? and if dont work you will have surgery as well? let me know if thats the case. how are they addressing that fistula you got from the staple attempt?

First clamp failed.

Second one is in and i have noticed a drop in drainage from fistula. So we shall see. He says the fistula will heal if the leak is stopped.

The endo stitch is next.No surgery for me though until at least October. Have to wait 6 months from last one.

Will update.

keep me posted on your endo stitch Aug 5th if you have it, please. mine will be on Aug 19th and curious if yours worked. So does this mean you will be the 1st patient that they are trying this on? cuz Shen told me they have not used this technique for lower GI issues before, only upper GI. Thought i was going to be the first...

sending good vibes your way...but i do know you have a great team of doctors..god speed..

rebe

Best wishes to you Dtmack! You guys are having some cutting edge procedures. Hopefully we will be seeing your cases written up in future papers by Dr. Shen and company as great successes

Hey dtmack, Shen emailed me back and stated that they have not done an endo stitch procedure for a tip of jpouch leak yet. Looks like we will be the first 2 to be the guinea pigs..lol. YOU ARE 1ST BROTHA

What is causing these J Pouch leaks?

wish i knew..dont suspect crohns at all

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

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.

the endo stitch failed. saw Shen yesterday and he stated it just will not work on jpouches..oh well.

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